Running a Multi-Day Ultramarathon (Aiming for 200 Miles)

I used to make a lot of statements about things I thought I couldn’t do. I thought I couldn’t run overnight, so I couldn’t attempt to run 100 miles. I could never run 200 mile races the way other people did. Etc. Yet last year I found myself training for and attempting 100 miles (I chose to stop at 82, but successfully ran overnight and for 25 hours) and this year I found myself working through the excessive mental logistics and puzzle of determining that I could train for and attempt to run 200 miles, or as many miles as I could across 3-4 days.

Like my 100 mile attempt, I found some useful blog recaps and race reports of people’s official races they did for 200-ish mile races. However, like the 100 attempts, I found myself wanting more information for the mental training and logistical preparation people put into it. While my 200 mile training and prep anchored heavily on what I did before, this post describes more detail on how my training, prep, and ‘race’ experience for a multi-day or 200 mile ultra attempt.

DIY-ing a 200

For context, I have a previous post describing the myriad reasons of why I often choose to run DIY ultras, meaning I’m not signing up for an official race. Most of those reasons hold true for why I chose to DIY my 200. Like my 100 (82) miles, I mapped a route that was based on my home paved trail that takes me out and around the trails I’m familiar with. It has its downsides, but also the upsides: really good trail bathrooms and I feel safe running them. Plus, it’s easy and convenient for my husband to crew me. Since I expected this adventure to take 3-4 days (more on that below), that’s a heavy ask of my husband’s time and energy, so sticking with the easy routes that work for him is optimal, too. So while I also sought to run 200 miles just like any other 200-mile ultra runner, my course happens to have minimal elevation. Not all 200 mile ultramarathon races have a ton of elevation – some like the Cowboy 200 are pretty flat – so my experience is closer to that than the experience of those running mountain based ultras with 30,000 feet (or more) of elevation gain. And I’m ok with that!

Sleep

One of the puzzles I had to figure out to decide I could even attempt a 200 miler is sleep. With a 100 mile race, most people don’t sleep at all (nor did I) and we just run through the night. With 200 miles, that’s impossible, because it takes 3, 4, 5 days to finish and biologically you need sleep. Plus, I need more sleep than the average person. I’m a champion sleeper; I typically sleep much longer than everyone else; and I know I couldn’t function with an hour here or there like many people do at traditional races. So I actually designed my 200 mile ultra with this in mind: how could I cover 200 miles AND get sleep? Because I’m running to/from home, I have access to my kitchen, shower, and bed, so I decided that I would set up my run to run each day and come home and eat dinner, shower, and sleep each night for a short night in my bed.

I then decided that instead of winging it and running until I dropped before eating, showering, and sleeping, I would aim for running 50 miles each day. Then I’d come in, eat, shower, and sleep and get up the next morning and go again. 4 days, 3 nights, 50 miles each day: that would have me finishing around 87-90ish hours total (with the clock running from my initial start), including ~25 hours or more of total downtime between the eating/showering/sleeping/getting ready. That breakdown of 3.67 days is well within the typical finish times of many 200 mile ultras (yes, comparing to those with elevation gain), so it felt like it was both a stretch for me but also doable and in a sensible way that works for me and my needs. I mapped it all out in my spreadsheet, with the number of laps and my routes and pacing to finish 50 miles per day; the two times per day I would need my husband to come out and crew me at ‘aid station stops’ in between laps, and what time I would finish each night. I then factored in time to eat and shower and get ready for bed, sleep, and time to get up in the morning. Given the fact that I expected to run slower each day, the sleep windows go from 8 hours down to less than 6 hours by night 3. That being said, if I managed to sleep 5 hours per night and 15 hours total, that’s probably almost twice as much as most people get during traditional races!

Like sleep, I was also very cognizant of the fact that a 200 probably comes down to mental fortitude and will power to keep going; meticulous fueling; and excellent foot care. Plus reasonable training, of course.

Meticulous fueling

I have previously written about building and using a spreadsheet to track my fuel intake during ultras. This method works really well for me because after each training run I can see how much I consumed and any trends. I started to spot that as I got tired, I would tend to choose certain snacks that happened to be slightly lower calorie. Not by much, but the snack selections went from those that are 150-180 calories to 120-140 calories, in part because I perceived them to be both ‘smaller’ (less volume) and ‘easier to swallow’ when I was tired. Doubled up in the same hour, this meant that I started to have hours of 240 calories instead of more than 250. That doesn’t sound like much, but I need every calorie I can get.

I mapped out my estimated energy expenditure based on the 50 miles per day, and even consuming 250 calories per hour, I would end up with several thousand calories of deficit each day! I spent a lot of time testing food that I think I can eat for dinner on the 3 nights to ensure that I get a good 1000 calories or more in before going to bed, to help address and reduce the growing energy deficit. But I also ended up optimizing my race fuel, too. Because I ran so many long runs in training where I fueled every 30 minutes, and because I had been mapping out my snack list for each lap for 50 miles a day for 4 days, I’ve been aware for months that I would probably get food fatigue if I didn’t expand my fuel list. I worked really hard to test a bunch of new snacks and add them to the rotation. That really helped even in training, across all 12 laps (3 laps a day to get 50 miles, times 4 days), I carefully made sure I wouldn’t have too many repeats and get sick of one food or one group of things I planned to eat. I also recently realized that some of the smaller items (e.g. 120 calorie servings) could be increased. I’m already portioning out servings from a big bag into small baggies; in some cases adding one more pretzel or one more piece of candy (or more) would drive up the calories by 10-20 per serving. Those small tweaks I made to 5 of my ~18 possible snacks means that I added about 200 calories on top of what was already represented in those snacks. If I happen to choose those 5 snacks as part of my list for any one lap, that means I have a bonus 200 calories I’ve convinced myself to consume without it being a big deal, because it’s simply one more pretzel or one more piece of candy in the snack that I’m already use to consuming. (Again, because I’m DIYing my race and have specific needs relative to running with celiac, diabetes, and exocrine pancreatic insufficiency, for me, pre-planning my fuel and having it laid out in advance for every run, or in the race every single lap, is what works for me personally.)

Here’s a view of how I laid out my fuel. I had worked on a list of what I wanted for each lap, checking against repeats across the same day and making sure I wasn’t too heavily relying on any one snack throughout all the days. I then bagged up all snacks individually, then followed my list to lay them out by each lap and day accordingly. I also have a bag per day each for enzymes and electrolytes, which you’ll see on the left. Previously, I’ve done one bag per lap, but to reduce the number of things I’m pulling in and out of my vest each time, I decided I could do one big bag each per day (and that did end up working out well).

Two pictures side by side, with papers on the floor showing left to right laps 1-3 on the top and along the left side days 1-4, to create a grid to lay out my snacks. On the left picture, I have my enzymes, electrolytes per day and then a pile of snacks grouped for each lap. On the right, all the snacks and enzymes and electrolytes have been put into gallon bags, one for each lap.

Contingency planning

Like I did for my 100, I was (clearly) planning for as many possibilities as I could. I knew that during the run – and each evening after the run – I would have limited excess mental capacity for new ideas and brainstorming solutions when problems come up. The more I prepared for things that I knew were likely to happen – fatigue, sore body, blisters, chafing, dropping things, getting tired of eating, etc – the more likely that they would be small things and not big things that can contribute to ending a race attempt. This includes learning from my past 100 attempt and how I dealt with the rain. First of all, I planned to move my race if it looks like we’ll get 6 months of rain in a single 24 hour period! But also, I scheduled my race so that if I do have a few hours of really hard rain, I could choose to take a break and come in and eat/shower/change/rest and go back out later, or extend and finish a lap on the last day or the day after that. I was not running a race that would yank me from the course, but I did have a hard limit after day 5 based on a pre-planned doctor’s appointment that would be a hassle to reschedule, so I needed to finish by the night after day 5. But this gave me the flexibility to take breaks (that I wasn’t really planning to take but was prepared to if I needed to due to weather conditions).

Training for a 200 mile ultramarathon

Like training plans for marathons and 100 milers, the training plans I’ve read about for 200 mile ultramarathons intimidate me. So much mileage! So much time for a slow run/walker like me. I did try to look at sample 200 mile ultra plans and get a sense for what they’re trying to achieve – e.g. when do they peak their mileage before the race, how many back to back runs of what general length in terms of time etc – and then loosely keep that in mind.

But basically, I trained for this 200 mile ultra just like I trained for my marathon, 50k, 100k, and 82 miler. I like to end up doing long runs (which for me are run/walks of 30 seconds run, 60 seconds walk, just like I do shorter runs) of up to around 50k distance. This time, I did two total training runs that were each around 29 miles, just based on the length of the trail I had to run. I could have run longer, but mentally had the confidence that another ~45 minutes per run wasn’t going to change my ability to attempt 50 miles a day for 4 days. If I didn’t have 3 years of this training style under my personal belt, I might feel different about it. That’s longer than many people run, but I find the experience of 7-8 hours of time on my feet fueling, run/walking, and problem solving (including building up my willpower to spend that much time moving) to be what works for me.

The main difference for my 200 is probably also that it’s my 3rd year of ultrarunning. I was able to increase my long runs a little bit more of a time, when historically I used to add 2 miles a time to a long run. I jumped up 4 miles at a time – again, run/walking so very easy on my legs – when building up my long runs, so I was able to end up with 2 different 29 mile runs, two weeks apart, even though I really kicked off training specifically for this 8 weeks prior (10 weeks including taper) to the run. In between I also did a weekend of back to back to back runs (meaning 3 days in a row) where I ran 16 miles, another 16 miles, and 13 miles to practice getting up and running on tired legs. In past cycles I had done a lot more back to back (2-day) with a long and a medium run, but this time I did less of the 2-day and did the one big 3-day since I was targeting a 4-day experience. In future, if I were to do this again, given how well my body held up with all this training, I might have done more back to back, but I took things very cautiously and wanted to not overtrain and cause injury from ramping up too quickly.

As part of that (trying not to over do it), instead of doing several little runs throughout the week I focused on more medium-long runs with my vest and fueling, so I would do something like a long run (starting at 10 miles building up to 29 miles), a medium-long run (8 miles up to 13 miles or 16 miles) and another medium-ish run (usually 8 miles). Three runs a week, and that was it. Earlier in the 8 weeks, I was still doing a lot of hiking off the season, so I had plenty of other time-on-feet experiences. Later in the season I sometimes squeezed in a 4th short run of the week if we wouldn’t be hiking, and ran without my vest and tried to do some ‘speed work’ (aka run a little faster than my easy long run pace). Nothing fancy. Again, this is based on my slow running style (that’s actually a fixed interval of short run and short walk, usually 30 seconds run and 60 seconds walk), my schedule, my personality, and more. If you read this, don’t think my mileage or training style is the answer. But I did want to share what I did and that it generally worked for me.

I did struggle with wondering if I was training “enough”. But I never train “enough” compared to others’ marathon, 50k, 100k, 100 mile plans, either. I’m a low mileage-ish trainer overall, even though I do throw in a few longer runs than most people do. My peak training for marathon, 50k, and 100k is usually around low 50s (miles per week). Surprisingly, this 200 cycle did get me to some mid 60 mile weeks! One thing that also helped me mentally was adding in a rolling 7 day calculation of the miles, not just looking at miles per calendar week. That helped when I shifted some runs around due to scheduling, because I could see that I was still keeping a reasonable 55-low60s mileage over 7 days even though the calendar week total dropped to low 40s because of the way the runs happened to land in the calendar weeks.

Generally, though, looking back at how my training was more than I had accomplished for previous races; I feel better than ever (good fueling really helps!); I didn’t have any accidents or overtraining injuries or niggles; I decided a few weeks before peak that I was training enough and it was the right amount for me.

Another factor that was slightly different was how much hiking I had done this year. I ran my 100k in March then took some time off, promising my husband that we would hike “more” this year. That also coincided with me not really bouncing back from my 100k recovery period: I didn’t feel like doing much running, so we kept planning hiking adventures. Eventually I realized (because I was diagnosed with Graves’ disease last year, I’m having my thyroid and antibody and other related blood work done every 3 months while we work on getting everything into range) that this coincided with my TSH going too high for my body’s happiness; and my disinterest in long runs was actually a symptom (for me) of slightly too-high TSH. I changed my thyroid medication and within two weeks felt HUGELY more interested in long running, which is what coincided with reinvigorating my interest in a fall ultra, training, and ultimately deciding to go for the 200. But in the meantime, we kept hiking a lot – to the tune of over 225 miles hiked and over 53,000 feet of elevation gain! I never tracked elevation gain for hiking before (last year, not sure I retrospectively tracked it all but it was closer to 100 miles – so definitely likely 2x increase), but I can imagine this is definitely >2x above what I’ve done on my previous biggest hiking year, just given the sheer number of hikes that we went out on. So overall, the strengthening of my muscles from hiking helped, as did the time on feet. Before I kicked off my 8 week cycle, we were easily spending 3-4 hours a hike and usually at least two hikes a weekend, so I had a lot of time on feet almost every hike equivalent to 12 or more miles of running at that point. That really helped when I reintroduced long runs and aided my ability to jump my long run in distance by 4 miles at a time instead of more gently progressing it by 2 miles a week as I had done in the past.

How my 200 mile attempt actually went

Spoiler alert: I DNF (did not finish) 200 miles. Instead, I stopped – happily – at 100 miles. But it wasn’t for a lack of training.

Day 1 – 51 miles – All as planned

I set out on lap 1 on Day 1 as planned and on time, starting in the dark with a waist lamp at 6am. It was dark and just faintly cool, but warm enough (51F) that I didn’t bother with long sleeves because I knew I would warm up. (Instead, for all days, I was happy in shorts and a short sleeve shirt when the temps would range from 49F to 76F and back down again.) I only had to run for about an hour in the dark and the sky gradually brightened. It ended up being a cloudy, overcast and nice weather day so it didn’t get super bright first thing, but because it wasn’t wet and cold, it wasn’t annoying at all. I tried to start and stay at an easy pace, and was running slow enough (about ~30s/mile slower than my training paces) that I didn’t have to alter my planned intervals to slow me down any more. All was fairly well and as planned in the first lap. I stopped to use the bathroom at mile 3.5 and as planned at my 8 mile turnaround point, and also stopped to stuff a little more wool in a spot in my shoe a mile later. That added 2 minutes of time, but I didn’t let it bother me and still managed to finish lap 1 at about a 15:08 min/mi average pace, which was definitely faster than I had predicted. I used the bathroom again at the turnaround while my husband re-filled my hydration pack, then I stuffed the next round of snacks in my vest and took off. The bathroom and re-fueling “aid station” stop only took 5 minutes. Not bad! And on I went.

A background-less shot of me in my ultrarunning gear. I'm wearing a grey moisture-wicking visor; sunglasses; a purple ultrarunning vest packed with snacks in front and the blue tube of my hydration pack looped in front; a bright flourescent pink short sleeve shirt; grey shorts with pockets bulging on the side with my phone (left pocket) and skittles and headphones and keys (right pocket), and in this lap I was wearing bright pink shoes. Lap 2 was also pretty reasonable, although I was surprised by how often I wanted a bathroom. My period had started that morning (fun timing), and while I didn’t have a lot of flow, the signals my abdomen was giving my brain was telling me that I needed to go to the bathroom more often than I would have otherwise. That started to stress me out slightly, because I found myself wishing for a bathroom in the longest stretch without trail bathrooms and in a very populated area, the duration of which was about 5.5 miles long. I tried to drink less but was also aware of trying not to under hydrate or imbalance my electrolytes. I always get a little dehydrated during my period; and I was running a multi-day ultra where I needed a lot of hydration and more sodium than usual; this situation didn’t add up well! But I made it without any embarrassing moments on the trail. The second aid station again only took 5 minutes. (It really makes a world of difference to not have to dry off my feet, Desitin them up, and re-do socks and shoes every single aid station like I did last year!) I could have moved faster, but I was trying to not let small minutes of time frazzle me, and I was succeeding with being efficient but not rushed and continuing on my way. I had slowed down some during lap 2, however – dropping from a 15:08 to 15:20ish min/mi pace. Not much, but noticeable.

At sunset, with light blue sky fading to yellow at the horizon behind the row of tall, skinny bush like trees with gaps and a hot air balloon a hundred or so feet off the ground seen between the trees.Lap 3 I did feel more tired. I talked my husband into bringing me my headlamp toward the end of the last lap, instead of me having to carry it for 4+ hours before the sun went down. (Originally, I thought I would need it 2-3 hours into this last lap, but because I was moving so well it was now looking like 4 hours, and it would be a 2-3 mile e-bike ride for him to bring me the lamp when I wanted it. That was a mental win to not have to run with the lamp when I wasn’t using it!) I was still run/walking the same duration of intervals, but slowed down to about 16:01 pace for this lap. Overall, I would be at 15:40 average for the whole day, but the fatigue and my tired feet started to kick in on the third lap between miles 34-51. Plus, I stopped to take a LOT more pictures, because there was a hot air balloon growing in the distance as it was flying right toward me – and then by me next to the trail! It ended up landing next to the soccer fields a mile behind me after it passed me in this picture. I actually made it home right as the sun set and didn’t have to wear my lamp at all that evening.

Day 1 recovery was better and worse than I expected. I sat down and used my foot massager on my still-socked feet, which felt very good. I took a shower after I peeled my socks off and took a look at my feet for the first time. I had one blister that I didn’t know was growing at all pop about an hour before I finished, but it was under some of my pre-taped area. I decided to leave the tape and see how it looked and felt in the morning. I had 2-3 other tiny, not a big deal blisters that I would tape in the morning but didn’t need any attention that night.

I had planned to eat a reasonably sized dinner – preferably around 1000 calories – each night, to help me address my calorie deficit. And I had a big deficit: I had burned 5,447 calories and consumed 3,051 calories in my 13 hours and 13 minutes of running. But I could only eat ¼ of the pizza I planned for dinner, and that took a lot of work to force myself to eat. So I gave up, and went to bed with a 3,846 calorie deficit, which was bigger than I wanted.

And going to bed hurt. I was stiff, which I could deal with, but my feet that didn’t hurt much while running started SCREAMING at me. All over. They hurt so bad. Not blisters, just intense aches. Ouch! I started to doubt my ability to run the next day, but this is where my pre-planning kicked in (aided by my husband who had agreed to the rules we had decided upon): no matter what, I would get up in the morning, get dressed, and go out and start my first lap. If I decided to quit, I could, but I could not quit at night in bed or in the morning in the bed or in the house. I had to get up and go. So I went to sleep, less optimistic about my ability to finish 50 miles again on day 2, but willing to see what would happen.

Day 2: 34 instead of 50 miles, and walking my first ever lap

I actually woke up before my alarm went off on day 2. Because I had finished so efficiently the day before, I was able to again get a good night’s sleep, even with the early alarm and waking up again at 4:30am with plans to be going by 6am. The extra time was helpful, because I didn’t feel rushed as I got ready to go. I spent some extra time taping my new blisters. Because they hadn’t popped, I put small torn pieces of Kleenex against them and used cut strips of kinesio tape to protect the area. (Read “Fixing Your Feet” for other great ultra-related foot care tips; I learned about Kleenex from that book.) I also use lambs’ wool for areas that rub or might be getting hot spots, so I put wool back in my usual places (between big and second toes, and on the side of the foot) plus another toe that was rubbing but not blistered and could use some cushion. I also this year have been trying Tom’s blister powder in my socks, which seems to help since my feet are extra sweat prone, and I had pre-powdered a stack of socks so I could simply slip them on and get going once I had done the Kleenex/tape and wool setup. The one blister that had popped under my tape wasn’t hurting when I pressed on it, so I left it alone and just added loose wool for a little padding.

A pretty view of the trail with bright blue sky after the sun rose with green bushes (and the river out of sight) to the left, with the trail parallel to a high concrete wall of a road with cheery red and yellow leaved trees leaning over the trail.And off I went. I managed to run/walk from the start, and faster than I had projected on my spreadsheets originally and definitely faster than I thought was possible the night before or even before I started that morning. Sure, I was slower than the day before, but 15:40 min/mi pace was nothing to sneeze at, and I was feeling good. I was really surprised that my legs, hips and body did not hurt at all! My multi-day or back-to-back training seemed to pay off here. All was well for most of the first lap (17 miles again), but then the last 2 or so miles, my pace started dipping unexpectedly so I was doing 16+ min/mi without changing my easy effort. I was disappointed, and tired, when I came into my aid station turnaround. I again didn’t need foot care and spent less than 5 minutes here, but I told Scott as I left that I was going to walk for a while, because my feet had been hurting and they were getting worse. Not blisters: but the balls of my feet were feeling excruciating.

A close up of a yellow shelled snail against the paved trail that I saw while walking the world's slowest 17-mile lap on day 2.I headed out, and within a few minutes he had re-packed up and biked up to ride alongside me for a few minutes and chat. I told him I was probably going to need to walk this entire lap. We agreed this was fine and to be expected, and was in fact built into my schedule that I would slow down. I’ve never walked a full lap in an ultra before, so this would be novel to me. But then my feet got louder and louder and I told him I didn’t think I could even walk the full lap. We decided that I should take some Tylenol, because I wasn’t limping and this wouldn’t mask any pain that would be important cues for my body that I would be overriding, but simply muting the “ow this is a lot” screams that the bones in the balls of my feet were feeling. He biked home, grabbed some, and came back out. I took the Tylenol and sent him home again, walking on. Luckily, the Tylenol did kick in and it went from almost unbearable to manageable super-discomfort, so I continued walking. And walking. And walking. It took FOREVER, it felt like, having gone from 15-16 min/mi pace with 30 seconds of running, 60 seconds of walking, to doing 19-20 minute miles of pure walking. It was boring. I had podcasts, music, audiobooks galore, and I was still bored and uncomfortable and not loving this experience. I also was thinking about it on the way back about how I did not want to do a 3rd lap that day (to get me to my planned 50 miles) walking again.

Scott biked out early to meet me and bring me extra ice, because it was getting hot and I was an hour slower than the day before and risking running out of water that lap if he didn’t. After he refilled my hydration pack and brought it back to me while I walked on, I told him I wanted to be done for the day. He pointed out that when I finished this lap, I would be at 34 miles for the day, and combined with the day before (51), that put me at 85 miles, which would be a new distance PR for me since last year I had stopped at 82. That was true, and that would be a nice place to stop for the day. He reminded me of our ‘rules’ that I could go out the next day and do another lap to get me to 100, and decide during that lap what else I wanted to do. I was pretty sure I didn’t want to do more, but agreed I would decide the next day. So I walked home, completing lap 2 and 34 miles for the day, bringing me to 85 miles overall across 2 days.

Day 2 recovery went a little better, in part because I didn’t do 51 miles (only 34) and I had walked rather than ran the second lap, and also stopped earlier in the day (4pm instead of 7pm). I had more time to shower and bring myself to finally eat an entire 1000 calories before going to bed, again with my feet screaming at me. I had more blisters this time, mostly again on my right foot, but the balls of my feet and the bones of my feet ached in a way they never had before. This time, though, instead of setting my alarm to get up and go by 6am, I decided to sleep for longer, and go out a little later to start my first lap. This was a deviation from my plan, but another deviation I felt was the right one: I needed the sleep to help my body recover to be able to even attempt another lap.

Day 3: Only 16 miles, but hitting 100 for the first time ever

Instead of 6am, I set out on Day 3 around 8:30am. I would have taken even longer to go, but the forecast was for a warm day (we ended up hitting 81F) and I wanted to be done with the lap before the worst of the heat. I thought there was a 10% chance I’d keep going after this lap, but it was a pretty small chance. However, I set out for the planned 16 mile lap and was pleasantly surprised that I was run/walking at about a 15:40 pace! Again, better than I had projected (although yes, I had deviated from my mileage plan the day before), and it felt like a good affirmation that stopping the day before instead of slogging out another walking lap was the right thing to do.

After a first few miles, I toyed with the idea of continuing on. But I knew with the heat I probably wouldn’t stand more than one more lap, which would get me to 116. Even if I went out again the fourth day, and did 1-2 laps, that would MAYBE get me to 150, but I doubted I could do that without starting to cause some serious damage. And it honestly wasn’t feeling fun. I had enjoyed the first day, running in the dark, the fog, the daylight, and the twilight, seeing changing fall leaves and running through piles of them. The second day was also fun for the first lap, but the second lap walking was probably what a lot of ultra marathoners call the “death march” and just not fun. I didn’t want to keep going if it wasn’t fun, and I didn’t want to run myself into the ground (meaning to be so worn down that it would take weeks to months to recover) or into injury, especially when the specific milestones didn’t really mean anything. Sure, I wanted to be a 200 mile ultramarathoner, something that only a few thousand people have ever done – but I didn’t want to do it at the expense of my well-being. I spent a lot of time thinking about it, especially miles 4-8, and was thinking about the fact that the day before I had started, I had gone to a doctor’s appointment and had an official diagnosis confirming my fifth autoimmune disease, then proceeded to run (was running) 100 miles. Despite all the fun challenges of running with autoimmune conditions, I’m in really good health and fitness. My training this year went so well and I really enjoyed it. Most of this ultra had gone so well physically, and my legs and body weren’t hurting at all: the weakness was my feet. I didn’t think I could have trained any differently to address that, nor do I think I could change it moving forward. It’s honestly just hard to run that many hours or that many miles, as most ultramarathoners know, and your feet take a beating. Given that I was running on pavement for all of those hours, it can be even harder – or a different kind of hard – than kicking roots and rocks on a dirt trail. I figured I would metaphorically kick myself if I tried for 116 or 134 and injured myself in a way that would take 6-8 weeks to recover, whereas I felt pretty confident that if I stopped after this lap (at 100), I would have a relatively short and easy recovery, no major issues, and bounce back better than I ever have, despite it being my longest ever ultramarathon. Yes, I was doing it as a multi-day with sleep in between, but both in time on feet and in mileage, it was still the most I’d ever done in 2 or 3 days.

And, I was tired of eating. I was fueling SO well. Per my plans, I set out to do >500 mg of sodium per hour and >250 calories per hour. I had been nailing it every lap and every day! Day 1 I averaged 809 mg of sodium per hour and 290 calories per hour. Day 2 was even increased from that, averaging 934 mg of sodium per hour and 303 calories per hour! Given the decreased caloric burn of day 2 because I walked the second lap, my caloric deficit for day 2 was a mere ~882 calories (given that I also managed to eat a full dinner that night), even though I skipped the last hour as I finished the walking lap. Day 3 I was also fueling above my goals, but I was tired of it. Sooooo tired of it. Remember, I have to take a pill every time I eat, because I have exocrine pancreatic insufficiency (EPI or PEI). I was eating every 30 minutes as I ran or walked, so that meant swallowing at least one pill every 30 minutes. I had swallowed 57 pills on Day 1 and 48 pills on Day 2, between my enzymes and electrolyte pills. SO MANY PILLS. The idea of continuing to eat constantly every 30 minutes for another lap of ~5 or more hours was also not appealing. I knew if I didn’t eat, I couldn’t continue.

A chart with an hourly break down of sodium, calories, and carbs consumed per hour, plus totals of caloric consumption, burn, and calculated deficit across ~27 hours of move time to accomplish 100 miles run.

And so, I decided to stop after one more lap on day 3, even though I was holding up a respectable 15:41 min/mi pace throughout. I hit 100 miles and finished the lap at home, happy with my decision.

Two pictures of me leaning over after my run holding a sign (one reading 50 miles, one reading 100 miles) for each of my cats to sniff.(You can see from these two pictures that I smelled VERY interesting, sweaty and salty and exhausted at the end of day 1 and day 3, when I hit 50 miles and 100 miles, respectively. We have two twin kittens (now 3 years old) and one came out to sniff me first on the first day, and the other came out as I came home on the third day!)

Because I had only run one final lap (16 miles) on day 3, and had so many bonus hours in the rest of the day afterward when I was done and home, I was able to eat more and end up with only a 803 calorie deficit for the day. So overall, day 1 had the biggest deficit and probably influenced my fatigue and perception of pain on day 2, but because I had shortened day 2 and then day 3, my very high calorie intake every hour did a pretty good job matching my calorie expenditure, which is probably why I felt very little muscle fatigue in my body and had no significant sore areas other than the bottoms of my feet. I ended up averaging 821 mg/hr of sodium and 279 calories per hour (taking into account the fact that I skipped two final snacks at the end of day 2 when I was walking it out; ignoring that completely skipped hour would mean the average caloric intake on hours I ate anything at all was closer to 290 calories/hr!)

In total, I ended up consuming 124 pills in approximately 27 hours of move time across my 100 miles. (This doesn’t include enzyme pills for my breakfast or dinners each of those days, either – just the electrolyte and enzyme pills consumed while running!)

AFTERMATH

Recovery after day 3 was pretty similar to day 2, with me being able to eat more and limit my calorie deficit. I’ve had long ~30 mile training runs where I wasn’t very hungry afterward, but it surprised me that even two days after my ultra, I still haven’t really regained my appetite. I would have figured my almost 4000 calorie deficit from day 1 would drive a lot of hunger, so this surprised me.

So too has my physical state: 48 hours following the completion of my 100 miles, I am in *fantastic* shape compared to other multi-day back to back series of runs I’ve done, ultramarathons or not. The few blisters I got, mainly on my right foot, have already flattened themselves up and mostly vanished. I think I get more blisters on my right foot because of breaking my toe last year: my right foot now splays wider in my shoe, so it tends to get more blisters and cause more trouble than my left foot. I got only one blister on my left foot, which is still fluid filled but not painful and starting to visibly deflate now that I’m not rubbing it onto a shoe constantly any more. And my legs don’t feel like I ran at all, let alone running 51+34+16 miles!

I am tired, though. I don’t have brain fog, probably because of my excellent fueling, but I am fatigued in terms of overall energy and lack of motivation to get a lot done yesterday and today (other than writing this blog post!). So that’s probably pretty on par with my effort expended and matches what I expected, but it’s nice to be able to move around without hurting (other than my feet).

My feet in terms of general aches and ows are what came out the worst from my run. Day 2, what hurt was the bottom of the balls of my feet. Starting each night though, I was getting aches all over in all of the bones of my feet. After day 3, that night the foot aches were particularly strong, and I took some Tylenol to help with that. Yesterday evening and today though, the ache has settled down to very minor and only occasionally noticeable. The tendon from the top of my left foot up my ankle is sore and gets cranky when I wear my sneakers (although it didn’t bother me at all while running any of the days), so after tying and re-tying my shoelaces 18 times yesterday to try to find the perfect fit for my left foot, today I went on my recovery walk in flip flops and was much happier.

What I’m taking away from this 200 mile attempt that was only 100 miles:

I feel a little disappointed that I didn’t get anywhere near 200 miles, but obviously, I was not willing to hurt long enough or hard enough to get there. My husband called it a stretch goal. Rationally, I am very happy with my choices to stop at 100 and end up in the fantastic physical shape that I am in, and I recognize that I made a very rational choice and tradeoff between ending in good shape (and health) and the mainly ego-driven benefits of possibly achieving 200 miles (for me).

Would I do anything different? I can’t think of anything. If I somehow had an alternate do-over, I can’t think of anything I would think to change. I’d like to reduce my risk of blisters but I’m already doing all I can there, and dealing with changes in my right foot shape post-broken toe that I have no control over. And I’m not sure how to train more/better for reducing the bottom ball of foot pain that I got: I already trained multiple days, back to back, long hours of feet on pavement. It’s possible that having my doctor’s appointment the day before I started influenced my mental calculation of my future risk/benefit tradeoff of continuing more miles, and so not having had that then may have changed my calculations to do another lap or two, or go out on the 4th day (which I did not). But, I don’t have a do over, and I’ll never know, and I’m not too upset about that because I was able to control what I could control and am again pretty happy with the outcomes. 100 or 150 miles felt about the same to me, psychologically, in terms of satisfaction.

What I would tell other people about attempting multiple day ultramarathons or 200 mile ultramarathons:

Training back to back days is one option, as is long spurts of time on feet walking/hiking/running. I don’t think “just running” has to be the only way to train for these things. I’m also a big proponent of short intervals: If you hear people recommend taking walk breaks, it doesn’t have to be 1 minute every 10 minutes or every mile. It can be as short as every 30 seconds of running, take a walk break! There’s no wrong way to do it, whatever makes your body and brain happy. I get bored running longer (and don’t like it); other people get bored running the short intervals that I do – so find what works for you and what you’re actually willing to do.

Having plans for how you’ll rest X hours and go out and try to make it another lap or to the next aid station works really well, especially if you have crew/pacers/support (for me, my husband) who will stick to those rules and help you get back out there to try the next lap/section. Speaking of sleep/rest, laying down for a while helps as much as sleeping, so even if you can’t sleep, committing to the rest of X hours is also good for resting your feet and everything. I found that the hour laying down before I fell asleep helped my body process the noise of the “ouch” from my feet and it was a lot easier to sleep after that. Plan that you’ll have some down/up time before and after your sleep/rest time, and figure that into your time plans accordingly.

The cheesy “know your why” and “know what you want” recommendations do help. I didn’t want 200 miles badly enough to hurt more for longer and risk months of recovery (or the inability to recover). Maybe you’d be lucky enough to achieve 200 without hurting that bad, that long, or risking injury – or maybe you’ll have to make that choice, and you might make it differently than I did. (Maybe you’re lucky enough to not have 5 autoimmune things to juggle! I hope you don’t have to!) I kind of knew going in that I was only going to hit 200 if all went perfect.

Diabetes and this 200 mile ultramarathon that was a 100 mile ultra:

I just realized that I managed to write an ENTIRE race report without talking about diabetes and glucose management…because I had zero diabetes-related thoughts or issues during these several days of my run! Sweet! (Pun fully intended.)

Remember, I have type 1 diabetes and use an open source automated insulin delivery (AID) system (in my case, still using OpenAPS after alllllll these years), and I’ve talked previously about how I fuel while ultrarunning and juggling blood glucose management. Unlike previous ultras, I had zero pump site malfunctions (phew) and my glucose stayed nicely in range throughout. I think I had one small drift above range for 2 hours due to an hour of higher carb activity right when I shifted to walking the second lap on day 2, but otherwise was nicely in range all days and all nights without any extra thought or energy expended. I didn’t have to take a single “low carb”/hypoglycemia treatment! I think there was one snack I took a few minutes early when I saw I was drifting down slightly, but that was mostly a convenience thing and I probably would not have gone low (below target) even if I had waited for my planned fuel interval. But out of 46 snacks, only one 5-10 minutes early is impressive to me.

I had no issues after each day’s run, either: OpenAPS seamlessly adjusted to the increasing insulin sensitivity (using “autosensitivity” or “autosens”) so I didn’t have to do manual profile shifts or overrides or any manual interference. I did decide each night whether I wanted to let it SMB (supermicrobolus) as usual or stick to temp basal only to reduce the risk of hypoglycemia, but I had no post-dinner or overnight lows at all.

The most “work” I had to do was deciding to wear a second CGM sensor (staggered, 5 days after my other one started) so that I had a CGM sensor session going with good quality data that I could fall back to if my other sensor started to get jumpy, because the sensor session was supposed to end the night of day 4 of my planned run. I obviously didn’t run day 4, but even so I was glad to have another sensor going (worth the cost of overlapping my sensors) in order to have the reassurance of constant data if the first one died or fell out and I could seamlessly switch to an already-warmed up sensor with good data. I didn’t need it, but I was glad to have done that in prep.

(Because I didn’t talk about diabetes a lot in this post, because it was not very relevant to my experiences here, you might want to check out my previous race recaps and posts about utlrarunning like this one where I talk in more detail about balancing fueling, insulin, and glucose management while running for zillions of hours.)

TLDR: I ran 100 miles, and I did it my DIY way: my own course, my own (slow pace), with sleep breaks, a lot of fueling, and a lot of satisfaction of setting big goals and attempting to achieve them. I think for me, the process goals of figuring out how to even safely attempt ultramarathons are even more rewarding than the mileage milestones of ultrarunning.

Running a multi-day ultramarathon by Dana M. Lewis from DIYPS.org

How I PRed My 100k Time

I’ve been training for a big goal of mine: running a 100k in a specific amount of time. Yes, I’ve run farther than that before: last year I ran ~82 miles. However, I had someone in my family network who ran 100k last year, and I realized their time made a reasonable goal for me. I’m competitive, so the extra motivation of striving for a certain time is helpful for channeling my “racing”, even if I’m “racing” someone virtually (who ran a year ago!).

Like last year, I decided I would run my 100k (which is 62+ miles) as a solo or DIY ultramarathon. I originally plotted five laps of various lengths, then figured out I could slightly alter my longest route by almost a mile, making it so I would do 2 laps of the same length, a third lap of my original longest length, and then a fourth lap of a shorter length that’s also one of my preferred running routes. Only four laps would be mentally easier than doing five laps, even though it would end up being exactly the same distance. Like last year, I leveraged extensive planning (most of it done last year) to plan my electrolytes, enzymes, and fueling in advance. I had a lot less work to do this year, because I simply refreshed the list of gear and prep work from last year, shortened of course to match the length of my expected race (less than 18 hours vs ~24+ hours). The main thing I changed in terms of preparation is that while I set out a few “just in case” supplies, most of them I left in their places, figuring they’d be easy enough to find in the house by Scott (my husband) if I needed to ask him to bring out anything in particular. The few things I laid out were emergency medical supplies like inhaled insulin, inhaled glucagon, a backup pump site, etc. And my usual piles of supplies – clothes, fuel to refill my vest, etc – for each lap.

My 100k run supplies set out on the floor. I have a bag of OTC enzymes (for exocrine pancreatic insufficiency), 8-10 individually packaged snacks ranging from Fritos to yogurt pretzels to sandwich cookies, cashews, and beef sticks, a bag of electrolyte pills, and eye drops and disposable tooth brushes. Each lap (4 total) has a set of each of these.

One thing that was different for my 100k was my training. Last year, I was coming back from a broken toe and focused on rebuilding my feet. I found that I needed to stick with three runs per week. This year, I was back up to 4-5 runs per week and building up my long runs beginning in January, but in early February I felt like my left shin was getting niggle-y and I backed down to 3 runs a week. Plus, I was also more active on the weekends, including most weekends where we were cross-country skiing twice, often covering 10-15 miles between two days of skiing, so I was getting 3+ extra hours of “time on legs”, albeit differently than running. Instead of just keeping one longer run, a medium run, and two shorter runs (my original plan), I shifted to one long run, one medium long run (originally 8 and then jumping to 13 miles because it matched my favorite route), and the big difference was making my third run about 8 miles, too. This meant that I carried my vest and fueled for all three runs, rather than just one or two runs per week. I think the extra time training with the weight of my vest paid off, and the miles I didn’t do or the days I didn’t run didn’t seem to make a difference in regard to recovering during the weeks of training or for the big run itself. Plus, I practiced fueling every week for every run.

I also tapered differently. Once I switched to three runs a week, my shin felt a lot better. However, in addition to cross country skiing, Scott and I also have access now to an outdoor rock climbing wall (so fun!) and have been doing that. It’s a different type of workout and also helps with full body and upper body strength, while being fun and not feeling like a workout. I bring it up mostly because three weeks ago, I think I hurt the inside of my hip socket somehow by pressing off a foothold at a weird angle, and my hip started to be painful. It was mostly ok running, but I backed off my running schedule and did fewer miles for a week. The following week I was supposed to do my last longest long run – but I felt like it wouldn’t be ideal to do with my hip still feeling intermittently sore. Sometimes it felt uncomfortable running, other times it didn’t, but it didn’t feel fully back to normal. I decided to skip the last long run and stick with a week of my medium run length (I did 13, 13, and 8). That felt mostly good, and it occurred to me that two shorter weeks in a row were essentially a taper. If I didn’t feel like one more super long run (originally somewhere just under a 50k) was necessary to prepare, then I might as well consider moving my ‘race’ up. This is a big benefit of DIY’ing it, being able to adjust to injury or schedule – or the weather! The weather was also forecasted to be REALLY nice – no rain, high 50s F, and so I tentatively aimed to do a few short runs the following week with my 100k on the best weather day of the weekend. Or if the weather didn’t work out, I could push it out another week and stick with my original plan.

My taper continued to evolve, with me running 4 easy miles on Monday (without my vest) to see how my hip felt. Mostly better, but it still occasionally niggled when walking or running, which made me nervous. I discussed this endlessly with Scott, who as usual thought I was overcomplicating it and that I didn’t need to run more that week before my 100k. I didn’t like the idea of running Monday, then not running again until (Friday-Sunday, whenever it ended up being), but a friend unexpectedly was in town and free on Wednesday morning, so I went for a walk outside with her and that made it easy to choose not to run! It was going to be what it was going to be, and my hip would either let me run 100k or it would let me know to make it a regular long run day and I could stop at any time.

So – my training wasn’t ideal (shifting down to 3 runs a week) and my taper was very unexpected and evolved differently than it usually does, but listening to my body avoided major injury and I woke up feeling excited and with a good weather forecast for Friday morning, so I set off at 6am for my 100k.

(Why 6am start, if I was DIYing? My goal was to finish by 11:45pm, to beat the goal time of 11:46pm, which would have been 17 hours and 46 minutes. I could start later but that would involve more hours of running at night and keeping Scott awake longer, so I traded for an hour of running before it got light and finishing around midnight for a closer to normal bedtime for us both.)

*One other major thing I did to prep was that as soon as I identified that I wanted to shift my race up a week, I went in and started scheduling my bedtimes, beginning with the night before the race. If I raced at 6 from home, I would wake up at 5 to get ready, so I wanted to be sleeping by 9pm at the latest in order to get close to a normal night of sleep. Ideally it would be closer to 8-8:30. I set my bed time and each night prior, marked the bedtime 15 minutes later, so that when I started I was trying to push my bedtime from ~11pm to 10:45 pm then the next night 10:30pm etc. It wasn’t always super precise – I’ve done a better job achieving the goal bedtimes previously, but given that I did an early morning cross country ski race on the morning of daylight saving time the week before (ouch), it went pretty ok, and I woke up at 5am on race morning feeling rested and better than I usually do on race days. 7 hours and 45 minutes of sleep is an hour to an hour and a half less than usual, but it’s a LOT better than the 4-5 hours of sleep I might have otherwise gotten without shifting my schedule.

THE START (MILES 0-17)

My ultra running experience checklist, to highlight the good and the less good as I run. This shows that I saw stars, bunnies, and a loon and a pheasant, but did not see my usual eagles, heron, or heard any ducks splashing in the river at night.I set out at 6am, It was 33 degrees (F), so I wore shorts and a short sleeve shirt, with a pair of fleece lined pants over my shorts and a long sleeve shirt, rain jacket, ear cover, and gloves on my hand. It was dry, which helped. I was the only one out on the trail in the dark, and I had a really bright waist lamp and was running on a paved trail, so I didn’t have issues seeing or running. I felt a bit chilly but within 3 minutes could tell I would be fine temperature wise. As I got on the trail, I glanced up and grinned – the stars were out! That meant I could “check” something off my experience list at the very start. (I make a list of positive and less great experiences to ‘check off’ mentally, everything from seeing the stars or seeing bunnies or other wildlife to things like blisters, chafing, or being cold or tired or having out of whack glucose levels – to help me process and “check them off” my list and move on after problem solving, rather than dwelling on them and getting myself into a negative mood). The other thing I chuckled about at the start was passing the point where, about a half mile in to my 82 miles, I had popped the bite valve off of my hydration hose and gotten water everywhere and couldn’t find the bite valve for 3 minutes. That didn’t happen this time, phew! So this run was already off to a great start, just by nothing wild like that happening within the first few minutes. I peeled off my ear cover at 0.75 miles and my gloves at a mile. My jacket then peeled off to tie around my waist by the second mile, and I was surprised when my alarm went off at 6:30am reminding me to take in my first fuel. My plan calls for fuel every 30 minutes, which is why I like starting at the top of the hour (e.g. 6:00am) so I can use the alarm function on my phone to have alarms pre-set for the clock times when I need to fuel. Morning-sunrise-during-100kAs I continued my run/walk, just like I do in all my training runs, I pulled my enzymes out of my left pocket, swallowed them, put them away, grabbed my fuel out of my right pocket (starting with chili cheese Fritos), then also entered it into my fuel tracking spreadsheet so I could keep an eye on rolling calorie and sodium consumption throughout my run. (Plus, Scott can also see it and keep an eye on it as an extra data point that I’m doing well and following all planned activities, as well as having live GPS tracking and glucose tracking capabilities). I carried on, and as the sky began to lighten, I could see frost covering the ground beside the trail – brrr! It actually felt a little bit colder as the sun rose, and I could see wafts of fog rolling along the river. I started to see more people out for early morning runs, and I checked my usual irritation at people who were likely only out for (3? 5? 10? Psh!) short morning runs while I was just beginning an all day slog.

PheasantI was running well and a little ahead of my expected pace, closer to my usual long run/walk paces (which have been around 14:30-14:50 min/mi lately). I was concerned it was too fast and I would burn out as so many people do, but I did have wiggle room in my paces and had planned for an eventual slow down regardless. I made it to the first turnaround, used the trail bathroom there, and continued on, noting that even with the bathroom stop factored in, I was still on or ahead of schedule. I texted Scott to let him know to check my paces earlier than he might otherwise, and also stopped in my tracks to take a picture of a quail-like bird (which Scott thinks was a pheasant) that I’d never seen before. Lap 1 continued well, and I was feeling good and maintaining an overall sub-15 pace while I had been planning for a 15:10/ish average pace, so although Scott told me he didn’t need me to warn him about being particular miles away for aid station stops, I saw he was still at home by the time I was less than a mile out, and texted him. He was finishing a work call and had to rush to finish packing and come meet me. It wouldn’t have been a big deal if he had “missed” me at the expected turnaround spot, because there’s other benches and places where we could have met after that, but I think he was still stressed out (sorry!) about it, although I wasn’t. However, he biked up to me right at the turnaround spot, grabbed my vest and headed back to our normal table for refueling, while I used the bathroom and then headed out to meet him.

The other thing that might have stressed him out a little – and did stress me out a little bit – was my glucose levels. They were running normal levels for me during a run, around ~150mg/dL in the first 2-3 hours of my run. This is higher than I normally like to be for non-running times but is reasonable for long runs. I usually run a bit higher at the start and then settle in around 120-130mg/dL, because the risk of having too much insulin at the start from breakfast is prone to causing lows in the first hour; therefore I let myself reduce insulin prior to the run so that the first hour or so runs higher. However, instead of coming down as usual from the start of my run, I started a steady rise from 150 to 180. That was weird, but maybe it was a physiological response to the stress? I issued a correction, but I kept rising. I crossed 200 when I should have been beginning to flatten, and it kept going. What on earth? I idly passed my hand over my abdomen to check my pump site, and couldn’t feel my pump site. It had come unclipped!!! This was super frustrating, because it means I didn’t know how much insulin was in my body or when it had come unclipped. (Noteworthy that in 20+ years of using an insulin pump, this has NEVER happened before until this month, and it has now happened twice, so I need to record the batch/lot numbers and report it – this batch of sites is easily coming unclipped with a tug on the tubing, which is clearly dangerous because you can’t feel it come unclipped and don’t know until you see rising glucose levels.) “Luckily” though, this was when I was within 30 minutes or so of being back to Scott, so I texted him and told him to grab the inhaled insulin baggie I had set out, and I would use that at the aid station to more quickly get my body back into a good state (both in terms of feeling the insulin action as well as normalizing glucose levels more quickly. For those who don’t know, injected/pump insulin takes ~45 minutes to peak activity in the body, whereas inhaled insulin is much faster in the ballpark of ~15-20 minutes peak action, so in situations like this I prefer to, when possible, use inhaled insulin to normalize how my body is feeling while also resuming/fixing the pump site for normal insulin from then on).

As planned, at every aid station stop he brought water and ice to refill my camelback, which he did while I was at the bathroom. When I came up to the table where he was, I quickly did some inhaled insulin. Then I sat down and took off my socks and shoes and inspected my feet. My right foot felt like it had been rubbing on the outside slightly, so I added a piece of kinesiology tape to the outer edge of my foot. I already had pieces on the bottom of my feet to help prevent blisters like I got during my 82, and those seemed to be working, and it was quick and easy to add a straight piece of tape, re-stick pieces of lamb’s wool next to each big toe (to prevent blisters there), put fresh socks on, and put a fresh pair of shoes on. I also changed my shirts. It was now 44 F and it was supposed to warm up to 61 F by the end of this next lap. I stood up to put my pack on again and realized I had forgotten to peel off my pants! Argh. I had to unlace my shoes again, which was the most annoying part of my stop. I peeled off the pants (still wearing my shorts under), put my shoes back on and laced them again, then put my vest back on. I removed the remaining trash from my vest pockets, pulled out the old enzyme and electrolyte baggies, and began to put the new fuel supply and enzyme and electrolyte supply in the front vest pockets. Last time for my 82, I had Scott do the refilling of my vest, but this time I just had him set out my gallon bag that contained all of these, so that I could place the snacks how I like best and also have an idea of what I had for that lap. I would need to double check that I had enzymes and electrolytes, anyway, so it ended up being easier for me to do this and I think I’ll keep doing this moving forward. Oh, and at each aid station stop we popped my (non-ultra) Apple Watch on a watch charger to top off the charge, too. I also swapped in a new mini battery to my pack to help keep my phone battery up, and then took off. All this, including the bathroom time, took about 15 minutes! I had budgeted 20 minutes for each stop, and I was pleased that this first stop was ahead of schedule in addition to my running slightly ahead of schedule, because that gave me extra buffer if I slowed down later.

A 24 hour view of my CGM graph to show my glucose levels before (overnight), during the run including marks where my pump site likely unclipped, where I reclipped it, and how my glucose was in range for the remainder of the run.
A 24 hour view of my CGM graph to show my glucose levels before (overnight), during the run including marks where my pump site likely unclipped, where I reclipped it, and how my glucose was in range for the remainder of the run.

LAP 2 (MILES 18-34)

The next lap was the same route as the first, and felt like a normal long run day. It was mid 40s and gradually warmed up to 63 F and actually felt hot for the second half! It hadn’t been 60+ degrees in Seattle since October (!) so my body wasn’t used to the “heat”. I was still feeling good physically and running well – in fact, I was running only ~10s slower than my average pace from lap 1! If I kept this up and didn’t fall off the pace much in the second lap, I would have a very nice buffer for the end of the race. I focused on this lap and only thought about these 16-17 miles. I did begin to squirt water from my camelback on to the ‘cooling’ visor I have, which evaporates and helps your head feel cooler – especially since I wasn’t used to the heat and was sweating more, that felt good. The end of the second lap, I started to feel like I was slightly under my ideal sodium levels. I’m pretty sensitive to sodium; I also drink a lot (I was carrying 3-3.5L for every 17 mile lap!); and I’m a salty sweater. Add increased heat, and even though I was right on track with my goal of about ~500mg/hour of sodium intake between my fuel and additional electrolyte pills, I felt a bit under, and so the next while I added an extra electrolyte pill to increase my sodium intake, and the feeling went away as expected.

(My glucose levels had come back down nicely within the first few miles of this lap, dipped down but as I was fueling every 30 minutes, came nicely into range and stayed 100% in range with no issues for the next ~12 hours of the run!)

This time, Scott was aware that I was ahead of expected paces and had been mapping my paces. He told me that if I stayed at that pace for the lap, I would be able to slow down to a 16 min/mi pace for lap 3 (16 miles) and down further to a 17 min/mi pace for the last (almost 13 miles) lap and still beat my goal time. That sounded good to me! He ended up biking out early to meet me so he could start charging my watch a few minutes early, and I ended up taking one of my next snacks – a warmed up frozen waffle – for my ‘last’ snack of the lap because it was time for a snack and there was no reason to wait even though it was part of the ‘next’ lap’s fuel plan. So I got to eat a warm waffle, which was nice!

Once we got almost there, Scott took my vest and biked ahead to begin the camelback process. I hit the turnaround, made another quick bathroom stop, and ran over to the table. This time, since it was 60s and I would finish my next lap while it was still above 50 degrees and light, I left my clothing layers as-is, other than a quick shirt switch to get rid of my sweaty shirt. I decided not to undo my shoes and check my feet for blisters; they felt fine and good. Because I didn’t need a shoe change or have anything going on to troubleshoot, I was in and out in 5 minutes! Hooray, that gave me another 10 minute buffer (in addition to 5 before, plus all my running ahead of schedule). I took off for lap 3, but warned Scott I would probably be slowing down.

LAP 3 (MILES 35-50)

The third lap was almost the same route, but shorter by a little less than a mile. I was originally concerned, depending on how much I had slowed down, that I would finish either right around sunset or after sunset, so that Scott might need to bring me out a long sleeve shirt and my waist lamp. However, I was ahead of schedule, so I didn’t worry about it, and again set out trying to not fall off my paces too much. I slowed down only a tiny bit on the way out, and was surprised at the turnaround point that I was now only slightly above a 15 min/mi pace! The last few miles I felt like slowing down more, but I was motivated by two thoughts: one was that I would finish this lap and essentially be at 50 miles. This meant, given my excellent pacing, that I would be “PR”ing my 50 mile pace. I’ve not run a standalone 50 miles before, just as part of my 82 mile when I wasn’t paying attention to pace at all (and ran 2-3 min/mi slower as a result), so I was focused on holding my effort level to be close to the same. Plus, after this lap, I “only” had a ~13 mile single lap left. That was my usual route, so it would be mentally easier, and it’s my last lap, so I knew I would get a mental boost from that. Psychologically, having the 50 mile mark to PR here really helped me hold my pace! I ended up only slowing down ~13s average pace compared to the ~10s deterioration between laps 1 and 2. I was pretty pleased with that, especially with hitting 50 miles then!

At this aid station stop, I was pretty cheerful even though I kept telling Scott I would be slowing down. I took ~10 minutes at this stop because I had to put my jacket back on around my waist and put my double headlamp on (which I wear around my waist) for when it got dark, plus do the normal refueling. I changed my short sleeve shirt again so I had a dry shirt, and debated but went ahead and put my fresh long sleeve shirt on and rolled up the sleeves. I figured I’d be putting it on as soon as it got dark, and I didn’t want to have to hassle with getting my vest on and off (while moving) in order to get the shirt on, especially because I’d also have to do that with my jacket later, so I went with the long sleeve shirt on and rolled up the sleeves for now. I had originally planned to put my long pants back on over my shorts, but it was still 63 degrees and the forecast was only going to get down to 45 degrees by midnight, and I seemed ahead of schedule and should finish by then. If I did get really cold, Scott could always bike out early and bring me more layers, but even 45 degrees in the dark with long sleeves, jacket, ear cover, and two pairs of gloves should be fine, so I went without the pants.

Speaking of ahead of schedule, I was! I had 5 minutes from the first aid station, 15 minutes from the second aid station, 5 minutes from this last aid station…plus another ~15 minutes ahead of what I thought my running time would have been at this point. Woohoo!

LAP 4 (MILES 51-63)

However, as soon as I walked off with my restocked vest, I immediately felt incredibly sore thighs. Ouch! My feet also started complaining suddenly. I did an extra walk interval and resumed my run/walking and my first mile out of the aid station stop was possibly my slowest mile (barring any with a bathroom stop) for the entire race, which is funny, because it was only about a 16:30 pace. But I figured it would be downhill from there and I’d be lucky to hold a sub 17 pace for these last 13 miles, especially because most of them would be in the dark and I naturally move a bit slower in the dark. Luckily, I was so far ahead that I knew that even a 17 min/mi average pace (or even slower) would be fine. However, I had joked to Scott coming into the end of lap 3 that I was tempted to just walk lap 4 (because I was finally starting to be tired) but then I’d have to eat more snacks, because I’d be out there longer. Sounds funny, but it was true – I was eating ok but occasionally I was having trouble swallowing my enzyme pills. Which is completely reasonable, I had been swallowing dozens of those (and electrolyte pills) all day and putting food down my throat for ~12+ hours consistently. It wasn’t the action of swallowing that was a problem, but I seemed to be occasionally mistiming how I would get the pills washed to the back of my mouth at the top of my throat to be able to swallow them down. Once or twice I had to take in some extra water, so it really wasn’t a big deal, but it was a slight concern that if I stopped being able to enzyme, I couldn’t fuel (because I have EPI) and I’d either have to tough it out without fueling (bad idea) or stop (not a fun idea). So I had that little extra motivation to try to keep run/walking!

Luckily, that first mile of the last lap was the worst. My thighs were still sore but less so and my feet stopped yelling at me and were back to normal. I resumed a reasonable run/walk pace, albeit at closer to a 15:30+ pace, which was a bigger jump from my previous lap average pace. I didn’t let it stress me out, but I was wishing I felt like fighting harder. But I didn’t, and focused on holding that effort level. I texted Scott, telling him I was averaging sub-16 pace (barely) at miles 4 and 5, then asking him to check my assumption that if I didn’t completely walk it in, I could maybe be an hour ahead of schedule? He confirmed that I “only” needed 16:53 average pace for the lap to come in at 10:30pm (75 minutes ahead of goal) and that if I kept sub-16 I could come in around 10:19pm. Hmmm, that was nice to hear! I didn’t think I would keep sub-16 because it was getting dark and I was tired, ~55 miles into the run, but I was pretty sure I’d be able to be sub 17 and likely sub 16:53! I carried on, turning my light on as it got dark. I was happily distracted by checking happy experiences off my mental list, mostly seeing bunnies beside and darting across the trail in the dark!

I hit the almost-halfway mileage point of the last lap, but even though it wasn’t halfway in mileage it felt like the last big milestone – it was the last mini-hill I had to climb to cross a bridge to loop around back to finish the lap. Hooray! I texted Scott and told him I coudn’t believe that, with ~7 miles left, I would be done in <2 hours. It was starting to sink in that I’d probably beat my goal of 11:45 and not doubt that it was real, and that I’d beat it by more than a few minutes. I then couldn’t resist – and was also worried Scott wouldn’t realize how well I was moving and be prone to coming out too late – and texted him again when I was <5 miles out and then 4 miles out. But by the time I was at 3 miles, he replied to ask if I needed anything else other than the bag I had planned for him to bring to the finish. Nope, I said.

At that point, I was back on my home turf, as I think about the last 2-3 miles that I run or walk on most days of the week. And I had run these miles 3 times already (in each direction, too), but it was pretty joyful getting to the point where I know not only every half mile marker but every tenth of a mile. And when I came up under the last bridge and saw a bright light biking toward me, it was Scott! He made it out to the 1.75 mile mark and rode in with me, which was fun. I was still holding just under sub-16 pace, too. I naturally pick up the pace when he’s biking with me – even when I’ve run 60+ miles! – and I was thinking that I’d be close but a few minutes under an hour and a half of schedule. It didn’t really matter exactly, but I like even numbers, yet I didn’t feel like I had tons of energy to push hard to the end – I was pleased enough to still be moving at a reasonable speed at this point!

Finally, about a half mile out, Scott biked ahead to set up the finish for me. (Purple painter’s tape and a sign I had made!) I glanced at my watch as I rounded the last corner, about .1 mile away, and though “oh, I was so close to beating the goal by over an hour and a half, too bad I didn’t push harder a few minutes ago so I could come in by 10:16 and be an hour and a half ahead”. I ran a tiny bit more but didn’t have much speed, walked a few last steps, then ran the rest of the way so Scott could video me coming into the finish. I could see the light from his bike’s light glowing on the trail, and as I turned the corner to the finish I was almost blinded by his waist light and his head lamp. I ran through the finish tape and grinned. I did it! He stopped videoing and told me to stop my trackers. I did but told him it didn’t matter, because I was somewhere under an hour and a half. We took a still picture, then picked up my tape and got ready to head home. I had done it! I had run 100k, beat my goal time…and it turns out I DID beat it by over an hour and a half! We checked the timestamp on the video Scott took of the finish and it has me crossing at 10:16pm, so that makes it a 16 hour and 16 minute finish – woohoo!

A picture at night in the dark with me running, light at my waist, toward the purple painter tape stretched out as my finish line.

My last lap ended up being ~37 seconds average pace slower, so I had :10, :13, and :37 differences between the laps. Not too bad for that distance! I think I could’ve pushed a little harder, but I honestly didn’t feel like it psychologically, since I was already exceeding all of my goals, and I was enjoying focusing on the process meta-goals of trying to keep steady efforts and paces. Overall, my average pace was 15:36 min/mi which included ~30 min of aid station stops; and my average moving pace (excluding those 30 minutes of aid station time but did include probably another ~8-10 min of bathroom stops) was 15:17 min/mi. I’m pleased with that!

FUN STATS

A pivot table with conditional formatting showing when my sodium, calories, and carbs per hour met my hourly goal amounts.One of the things I do for all training runs but also races is input my fueling as I go, because it helps me make sure I’m actually fueling and spot any problems as they start to develop. As I mentioned, at one point I felt a tiny bit low on sodium and sure enough, I had dipped slightly below 500mg/hr in the two hottest hours of the day when I had also been sweating more and drinking more than I had been previously. Plus, it means I have cool post-run data to see how much I consumed and figure out if I want to adjust my strategy. This time, though? I wouldn’t change a thing. I nailed it! I averaged 585 mg/hour of sodium across all ~16 hours of my run. I also averaged ~264 calories/hour, which is above my ~250/hr goal. I did skip – intentionally – the very last snack at the top of the 16th hour, and it still meant that I was above goal in all my metrics. I don’t set goals for carb intake, but in case you were wondering, I ended up averaging 29.9 grams of carbs/hour (min 12, max 50, and the average snack is 15.4 carbs), but that’s totally coincidental. Overall, I consumed 3,663 calories, which was 419 carbs, 195 g of fat, and 69 grams of protein.

With EPI, as I mentioned that means I have to swallow enzyme pills with every snack, which was every 30 minutes. I swallowed 71 OTC enzyme pills (!) to match all that fuel, plus 26 electrolyte pills…meaning I swallowed 97 pills in 16 hours. You can see why I get tired of swallowing!

A graph showing the rates of sodium/hr for each 16 hours of the run (averaging above 500mg/hr); calories per hour (averaging above 250/hour), and carbs per hour.

Here’s a visual where you can see my consumption of calories, sodium, (and carbs) over the course of my race. The dip at the end is because I intentionally skipped the second snack of the hour 16 because I was almost done. Up to 15 hours (excluding the last hour), I had a slightly rolling increase in sodium/hr and a very slight decrease in calories/hr, with carbs/hr slightly increasing. Including the 16th hour (with a skipped snack intentionally), this changed the trends to slight rolling decrease in sodium/hr; the slight decrease trend in calories/hr continued; but it flattened the carbs/hr trend line to be neutral.

In contrast to my 82 mile where I had more significant fluctuations in sodium (and really felt it), I’m glad I was able to keep my sodium consumption at goal levels and also more easily respond when the conditions changed (hotter weather causing more sweat and more water intake than previous hours) so I could keep myself from getting into a hole sodium-wise. Overall, I feel like I get an A+ for executing my fueling and sodium strategy as planned. GI-wise, I get an A+++ because I had ZERO GI symptoms during and after the run! That’s really rare for any ultrarunners, let alone those of us with GI conditions (in my case, exocrine pancreatic insufficiency). Plus, despite the unclipped pump site and BG rise that resulted, I resumed back to typical running glucose levels for me and achieved 100% TIR 70-180 after that and I think likely 100% TIR for a more narrow range like 70-140, too, although I haven’t bothered to run those stats because I don’t care exactly what the numbers are. More importantly, I never went low, I never had any big drops or rises, and other than the brief 30 minutes of annoyance due to an unclipped pump site, diabetes did not factor any more into my thinking than blister management or EPI pill swallowing or sodium did – which is great!

Here’s a view of what I had leftover after my run. I had intentionally planned for an extra snack for every lap, plus I ran faster so I needed fewer overall. I also had packed extra enzymes and electrolytes for every lap, hoping I would never need to stress about running out on any individual lap – and I didn’t, so those amounts worked well.

A view of the enzymes and electrolyte baggies after my run, with a few left in each baggie as I planned for extras. I also had some snacks I didn't eat, both because I planned one extra per lap but I also ran faster than I expected, so I needed fewer overall

POST-RUN RECOVERY

As soon as I stopped running and took a picture at the finish line, we got ready to head home. My muscles froze up as soon as I stopped, just like always, so I moved like a tin person for a few steps before I loosened back up and was able to walk normally. I got home, and was able to climb into the shower (and out!) without too much hardship. I climbed into bed, hydrated, and was able to go to sleep pretty normally for about 5 hours. I woke up at 5am pretty awake, which possibly was also due to the fact that I had been sleep shifting my sleep schedule, but I also felt really stiff and used the opportunity to point and flex my ankles. I slept every 20-30 minutes off and on for another few hours before I finally got up at 8am and THEN felt really sore and stiff! My right lower shin was sore and had felt sore just a tiny bit in the last few miles of my run, so it wasn’t surprising that it was sore. My right hip, which is the one I had been watching prior to the race, was sore again. I hobbled around the house and started to loosen up, enough that I decided that I would put shoes on and try to go for a short easy walk. Usually, I can’t psychologically fathom putting shoes on my feet after an ultra, but my feet felt really decent! I had some blisters, sure, but I hadn’t even noticed them running and they didn’t hurt to walk on. My hip and ankle were more noticeable. I didn’t try to take the stairs and used the elevator, then began hobbling down the sidewalk. Ouch. My hip was hurting so much that I stopped at the first bench and laid down on it to stretch my hip out. Then I walked .3 miles to the next bench and again stretched my hip. A little better, so we went out a bit farther with the plan to turn around, but my hip finally loosened up after a half mile where I could mostly walk normally! Hooray. In total, I managed 1.5 miles or so of a walk, which is pretty big for me the day after an ultra run.

Meaningfully, overnight, I still had 100% time in range (ideal glucose levels). I did not have to do any extra work, thanks to OpenAPS and autosensitivity which adjusts automatically to any increases and later return to normal insulin sensitivity from so much activity!

A 12 hour view of glucose levels after my 100k. This was 100% TIR between 70-180 and probably a tighter range, although I did not bother to calculate what the tighter range is.

The next night, I slept even better, and didn’t notice any in-bed stiffness, although again on the second morning I felt stiff getting out of bed, but was able to do my full 5k+ walk route with my hip loosening up completely by a mile so that I didn’t even think about it!

On day 3, I feel 90% back to normal physically. I’m mostly fatigued,which Scott keeps reminding me is “as one should be” after runnning 100k! The nice change is that with previous ultras or long runs, I’ve felt brain fog for days or sometimes weeks – likely due to not fueling enough. But with my A+ fueling, my brain feels great – and good enough that it’s annoyed with my body still being a little bit tired. Interestingly, my body is both tired but also itching for more activity and new adventures. My friend compared it to “sea legs” where the brain has learned that the body should always be in motion, which is a decent analogy.

WHAT I HAVE LEARNED

I wouldn’t change anything in terms of my race pacing, execution, aid station stops, fueling, etc. for this run.

What I want to make sure I do next time includes continuing to adapt my training to listen to my body, rather than sticking to my pre-decided plan of how much to run. I feel like I can do that both because I now have 3000+ miles on my body of lifetime running (that I didn’t have for my first ultra); and I now have two ultras (last year’s 82 miles post-broken toe and this year’s 100k with minor hiccups like a sore shin and a hip at different times) where I was forced to or chose to adapt training, and it turned out just as good as I would have expected. For my 100k, I think the adaptation to 3 runs per week, all with my vest, ended up working well. This is the first run where I didn’t have noticeable shoulder soreness from my pack!

Same goes for taper: I don’t think, at my speed/skill level, that exact taper strategy makes a difference, and this experience confirmed it, doing DIY ultras and being able to flex a week forward or back based on how I’m physically feeling and when the best weather will be is now my preferred strategy for sure.

—-

If you’re new to ultras and haven’t read any of my other posts, consider reading some of the following, which I’ve alluded to in my post and directly contribute to the above situation being so positive:

Feel free to leave questions if you have any, either about slow ultra running in general or any other aspects of ultra running! I’m a places-from-last kind of ultra runner, but I’m happy to share my thinking process if it helps anyone else plan their own adventures.

CGM for primary care doctors: a new article in the BMJ

I was honored last year to be asked to write an article about the basics of continuous glucose monitoring (CGM) for primary care providers by the BMJ, which was released today online.

This, like most of my academic literature article writing, was an unpaid gig. So why did I do it?

Well, most people with diabetes are treated primarily by primary care providers (“GPs” or “PCPs” or “family doctors”, etc). It’s somewhat rare for most people with diabetes to see an endocrinologist! It also varies regionally, even within the same country. And, primary care providers obviously treat a lot of widely varying conditions, from acute to chronic, so they may not have time or energy to stay up to date on all treatment options for all conditions.

This therefore felt like a great opportunity to contribute some information about CGM, an incredibly useful piece of technology for anyone with diabetes who wants it, specifically written and targeted for primary care providers who may not have the exposure to CGM technology that endocrinology providers have had over the years. And, like most things, the technology (thankfully) has changed quite a bit. Accuracy, ease of use, cost, and many other factors have changed dramatically in the last almost two decades since CGMs were introduced on the market!

I sought out two fellow experts in CGM and diabetes technology to co-author the article with me. I asked Ben Wheeler, an excellent pediatric endocrinologist who has done quite a bit of research on “intermittently scanned” CGMs (isCGM); and Tamara Oser, who is the director of the Primary Care Diabetes Lab (and a parent and a spouse of people living with diabetes) and worked to facilitate uptake of CGM in primary care settings.

I’m also appreciative that a parent and teen with newly diagnosed diabetes and new experiences with CGM both reviewed this article when it was drafted and shared their perspective to it; as well as appreciative of valuable input from a friend with many years of experience with diabetes who has used 8 (!) different CGM systems.

We are starting to see a shift in adoption and coverage of CGM, thankfully. Historically, people with diabetes haven’t always had insurance cover CGM. Even if insurance does cover CGM, sometimes we have to fight an uphill battle every year to re-prove that we (still) have diabetes and that we still need CGM. Sometimes good outcomes from using CGM disqualifies us from the next year’s coverage of CGM (in which case we have to appeal our cases for coverage). It’s frustrating! That’s why it’s so nice to see increasing guidelines, recommendations, and even country-specific guidelines encouraging funding and coverage of CGM for people with all types of diabetes. The biggest latest news – as of yesterday (March 2, 2023) – was that in the U.S., Medicare will now be covering CGM for people with type 2 diabetes on insulin. This is a huge group of people who previously didn’t have CGM coverage before!

So here it is, just out today online (March 3, 2023), and projected to be in the March 25, 2023 print edition of the BMJ: an article on continuous glucose monitoring (CGM) for primary providers. I’m hoping it helps pave the way for more providers to feel comfortable prescribing CGM for more people with diabetes; increased their knowledge in working with people with diabetes who have CGM prescribed from other providers; and also reduce unconscious and conscious bias against people with diabetes being offered this important, life-changing and life-saving technology.

P.S. – if you can’t access the article from the link above, as a reminder I always store an accessible author copy of my research articles at DIYPS.org/research!

Functional Self-Tracking is The Only Self-Tracking I Do

“I could never do that,” you say.

And I’ve heard it before.

Eating gluten free for the rest of your life, because you were diagnosed with celiac disease? Heard that response (I could never do that) for going on 14 years.

Inject yourself with insulin or fingerstick test your blood glucose 14 times a day? Wear an insulin pump on your body 24/7/365? Wear a CGM on your body 24/7/365?

Yeah, I’ve heard you can’t do that, either. (For 20 years and counting.) Which means I and the other people living with the situations that necessitate these behaviors are…doing this for fun?

We’re not.

More recently, I’ve heard this type of comment come up about tracking what I’m eating, and in particular, tracking what I’m eating when I’m running. I definitely don’t do that for fun.

I have a 20+ year strong history of hating tracking things, actually. When I was diagnosed with type 1 diabetes, I was given a physical log book and asked to write down my blood glucose numbers.

“Why?” I asked. They’re stored in the meter.

The answer was because supposedly the medical team was going to review them.

And they did.

And it was useless.

“Why were you high on February 22, 2003?”

Whether we were asking this question in March of 2003 or January of 2023 (almost 20 years later), the answer would be the same: I have no idea.

BG data, by itself, is like a single data point for a pilot. It’s useless without the contextual stream of data as well as other metrics (in the diabetes case, things like what was eaten, what activity happened, what my schedule was before this point, and all insulin dosed potentially in the last 12-24h).

So you wouldn’t be surprised to find out that I stopped tracking. I didn’t stop testing my blood glucose levels – in fact, I tested upwards of 14 times a day when I was in high school, because the real-time information was helpful. Retrospectively? Nope.

I didn’t start “tracking” things again (for diabetes) until late 2013, when we realized that I could get my CGM data off the device and into the laptop beside my bed, dragging the CGM data into a CSV file in Dropbox and sending it to the cloud so an app called “Pushover” would make a louder and different alarm on my phone to wake me up to overnight hypoglycemia. The only reason I added any manual “tracking” to this system was because we realized we could create an algorithm to USE the information I gave it (about what I was eating and the insulin I was taking) combined with the real-time CGM data to usefully predict glucose levels in the future. Predictions meant we could make *predictive* alarms, instead of solely having *reactive* alarms, which is what the status quo in diabetes has been for decades.

So sure, I started tracking what I was eating and dosing, but not really. I was hitting buttons to enter this information into the system because it was useful, again, in real time. I didn’t bother doing much with the data retrospectively. I did occasional do things like reflect on my changes in sensitivity after I got the norovirus, for example, but again this was mostly looking in awe at how the real-time functionality of autosensitivity, an algorithm feature we designed to adjust to real-time changes in sensitivity to insulin, dealt throughout the course of being sick.

At the beginning of 2020, my life changed. Not because of the pandemic (although also because of that), but because I began to have serious, very bothersome GI symptoms that dragged on throughout 2020 and 2021. I’ve written here about my experiences in eventually self-diagnosing (and confirming) that I have exocrine pancreatic insufficiency, and began taking pancreatic enzyme replacement therapy in January 2022.

What I haven’t yet done, though, is explain all my failed attempts at tracking things in 2020 and 2021. Or, not failed attempts, but where I started and stopped and why those tracking attempts weren’t useful.

Once I realized I had GI symptoms that weren’t going away, I tried writing down everything I ate. I tried writing in a list on my phone in spring of 2020. I couldn’t see any patterns. So I stopped.

A few months later, in summer of 2020, I tried again, this time using a digital spreadsheet so I could enter data from my phone or my computer. Again, after a few days, I still couldn’t see any patterns. So I stopped.

I made a third attempt to try to look at ingredients, rather than categories of food or individual food items. I came up with a short list of potential contenders, but repeated testing of consuming those ingredients didn’t do me any good. I stopped, again.

When I first went to the GI doctor in fall of 2020, one of the questions he asked was whether there was any pattern between my symptoms and what I was eating. “No,” I breathed out in a frustrated sigh. “I can’t find any patterns in what I’m eating and the symptoms.”

So we didn’t go down that rabbit hole.

At the start of 2021, though, I was sick and tired (of being sick and tired with GI symptoms for going on a year) and tried again. I decided that some of my “worst” symptoms happened after I consumed onions, so I tried removing obvious sources of onion from my diet. That evolved to onion and garlic, but I realized almost everything I ate also had onion powder or garlic powder, so I tried avoiding those. It helped, some. That then led me to research more, learn about the categorization of FODMAPs, and try a low-FODMAP diet in mid/fall 2021. That helped some.

Then I found out I actually had exocrine pancreatic insufficiency and it all made sense: what my symptoms were, why they were happening, and why the numerous previous tracking attempts were not successful.

You wouldn’t think I’d start tracking again, but I did. Although this time, finally, was different.

When I realized I had EPI, I learned that my body was no longer producing enough digestive enzymes to help my body digest fat, protein, and carbs. Because I’m a person with type 1 diabetes and have been correlating my insulin doses to my carbohydrate consumption for 20+ years, it seemed logical to me to track the amount of fat and protein in what I was eating, track my enzyme (PERT) dosing, and see if there were any correlations that indicated my doses needed to be more or less.

My spreadsheet involved recording the outcome of the previous day’s symptoms, and I had a section for entering multiple things that I ate throughout the day and the number of enzymes. I wrote a short description of my meal (“butter chicken” or “frozen pizza” or “chicken nuggets and veggies”), the estimate of fat and protein counts for the meal, and the number of enzymes I took for that meal. I had columns on the left that added up the total amount of fat and protein for the day, and the total number of enzymes.

It became very apparent to me – within two days – that the dose of the enzymes relative to the quantity of fat and protein I was eating mattered. I used this information to titrate (adjust) my enzyme dose and better match the enzymes to the amount of fat or protein I was eating. It was successful.

I kept writing down what I was eating, though.

In part, because it became a quick reference library to find the “counts” of a previous meal that I was duplicating, without having to re-do the burdensome math of adding up all the ingredients and counting them out for a typical portion size.

It also helped me see that within the first month, I was definitely improving, but not all the way – in terms of fully reducing and eliminating all of my symptoms. So I continued to use it to titrate my enzyme doses.

Then it helped me carefully work my way through re-adding food items and ingredients that I had been avoiding (like onions, apples, and pears) and proving to my brain that those were the result of enzyme insufficiency, not food intolerances. Once I had a working system for determining how to dose enzymes, it became a lot easier to see when I had slight symptoms from slightly getting my dosing wrong or majorly mis-estimating the fat and protein in what I was eating.

It provided me with a feedback loop that doesn’t really exist in EPI and GI conditions, and it was a daily, informative, real-time feedback loop.

As I reached the end of my first year of dosing with PERT, though, I was still using my spreadsheet. It surprised me, actually. Did I need to be using it? Not all the time. But the biggest reason I kept using it relates to how I often eat. I often look at an ‘entree’ for protein and then ‘build’ the rest of my meal around that, to help make sure I’m getting enough protein to fuel my ultrarunning endeavors. So I pick my entree/main thing I’m eating and put it in my spreadsheet under the fat and protein columns (=17 g of fat, =20 g of protein), for example, then decide what I’m going to eat to go with it. Say I add a bag of cheddar popcorn, so that becomes (=17+9 g of fat) and (=20+2 g of protein), and when I hit enter, those cells now tell me it’s 26 g of fat and 22 g of protein for the meal, which tells my brain (and I also tell the spreadsheet) that I’ll take 1 PERT pill for that. So I use the spreadsheet functionally to “build” what I’m eating and calculate the total grams of protein and fat; which helps me ‘calculate’ how much PERT to take (based on my previous titration efforts I know I can do up to 30g of fat and protein each in one PERT pill of the size of my prescription)

Example in my spreadsheet showing a meal and the in-progress data entry of entering the formula to add up two meal items' worth of fat and protein

Essentially, this has become a real-time calculator to add up the numbers every time I eat. Sure, I could do this in my head, but I’m usually multitasking and deciding what I want to eat and writing it down, doing something else, doing yet something else, then going to make my food and eat it. This helps me remember, between the time I decided – sometimes minutes, sometimes hours in advance of when I start eating and need to actually take the enzymes – what the counts are and what the PERT dosing needs to be.

I have done some neat retrospective analysis, of course – last year I had estimated that I took thousands of PERT pills (more on that here). I was able to do that not because it’s “fun” to track every pill that I swallow, but because I had, as a result of functional self-tracking of what I was eating to determine my PERT dosing for everything I ate, had a record of 99% of the enzyme pills that I took last year.

I do have some things that I’m no longer entering in my spreadsheet, which is why it’s only 99% of what I eat. There are some things like a quick snack where I grab it and the OTC enzymes to match without thought, and swallow the pills and eat the snack and don’t write it down. That maybe happens once a week. Generally, though, if I’m eating multiple things (like for a meal), then it’s incredibly useful in that moment to use my spreadsheet to add up all the counts to get my dosing right. If I don’t do that, my dosing is often off, and even a little bit “off” can cause uncomfortable and annoying symptoms the rest of the day, overnight, and into the next morning.

So, I have quite the incentive to use this spreadsheet to make sure that I get my dosing right. It’s functional: not for the perceived “fun” of writing things down.

It’s the same thing that happens when I run long runs. I need to fuel my runs, and fuel (food) means enzymes. Figuring out how many enzymes to dose as I’m running 6, 9, or 25 hours into a run gets increasingly harder. I found that what works for me is having a pre-built list of the fuel options; and a spreadsheet where I quickly on my phone open it and tap a drop down list to mark what I’m eating, and it pulls in the counts from the library and tells me how many enzymes to take for that fuel (which I’ve already pre-calculated).

It’s useful in real-time for helping me dose the right amount of enzymes for the fuel that I need and am taking every 30 minutes throughout my run. It’s also useful for helping me stay on top of my goal amounts of calories and sodium to make sure I’m fueling enough of the right things (for running in general), which is something that can be hard to do the longer I run. (More about this method and a template for anyone who wants to track similarly here.)

The TL;DR point of this is: I don’t track things for fun. I track things if and when they’re functionally useful, and primarily that is in real-time medical decision making.

These methods may not make sense to you, and don’t have to.

It may not be a method that works for you, or you may not have the situation that I’m in (T1D, Graves, celiac, and EPI – fun!) that necessitates these, or you may not have the goals that I have (ultrarunning). That’s ok!

But don’t say that you “couldn’t” do something. You ‘couldn’t’ track what you consumed when you ran or you ‘couldn’t’ write down what you were eating or you ‘couldn’t’ take that many pills or you ‘couldn’t’ inject insulin or…

You could, if you needed to, and if you decided it was the way that you could and would be able to achieve your goals.

Looking Back Through 2022 (What You May Have Missed)

I ended up writing a post last year recapping 2021, in part because I felt like I did hardly anything – which wasn’t true. In part, that was based on my body having a number of things going on that I didn’t know at the time. I figured those out in 2022 which made 2022 hard and also provided me with a sense of accomplishment as I tackled some of these new challenges.

For 2022, I have a very different feeling looking back on the entire year, which makes me so happy because it was night and day (different) compared to this time last year.

One major example? Exocrine Pancreatic Insufficiency.

I started taking enzymes (pancreatic enzyme replacement therapy, known as PERT) in early January. And they clearly worked, hooray!

I quickly realized that like insulin, PERT dosing needed to be based on the contents of my meals. I figured out how to effectively titrate for each meal and within a month or two was reliably dosing effectively with everything I was eating and drinking. And, I was writing and sharing my knowledge with others – you can see many of the posts I wrote collected at DIYPS.org/EPI.

I also designed and built an open source web calculator to help others figure out their ratios of lipase and fat and protease and protein to help them improve their dosing.

I even published a peer-reviewed journal article about EPI – submitted within 4 months of confirming that I had it! You can read that paper here with an analysis of glucose data from both before and after starting PERT. It’s a really neat example that I hope will pave the way for answering many questions we all have about how particular medications possibly affect glucose levels (instead of simply being warned that they “may cause hypoglycemia or hyperglycemia” which is vague and unhelpful.)

I also had my eyes opened to having another chronic disease that has very, very expensive medication with no generic medication option available (and OTCs may or may not work well). Here’s some of the math I did on the cost of living with EPI and diabetes (and celiac and Graves) for a year, in case you missed it.

Another other challenge+success was running (again), but with a 6 week forced break (ha) because I massively broke a toe in July 2022.

That was physically painful and frustrating for delaying my ultramarathon training.

I had been successfully figuring out how to run and fuel with enzymes for EPI; I even built a DIY macronutrient tracker and shared a template so others can use it. I ran a 50k with a river crossing in early June and was on track to target my 100 mile run in early fall.

However with the broken toe, I took the time off needed and carefully built back up, put a lot of planning into it, and made my attempt in late October instead.

I succeeded in running ~82 miles in ~25 hours, all in one go!

I am immensely proud of that run for so many reasons, some of which are general pride at the accomplishment and others are specific, including:

  • Doing something I didn’t think I could do which is running all day and all night without stopping
  • Doing this as a solo or “DIY” self-organized ultra
  • Eating every 30 minutes like clockwork, consuming enzymes (more than 92 pills!), which means 50 snacks consumed. No GI issues, either, which is remarkable even for an ultrarunner without EPI!
  • Generally figuring out all the plans and logistics needed to be able to handle such a run, especially when dealing with type 1 diabetes, celiac, EPI, and Graves
  • Not causing any injuries, and in fact recovering remarkably fast which shows how effective my training and ‘race’ strategy were.

On top of this all, I achieved my biggest-ever running year, with more than 1,333 miles run this year. This is 300+ more than my previous best from last year which was the first time I crossed 1,000 miles in a year.

Professionally, I did quite a lot of miscellaneous writing, research, and other activities.

I spent a lot of time doing research. I also peer reviewed more than 24 papers for academic journals. I was asked to join an editorial board for a journal. I served on 2 grant review committees/programs.

I also wrote a lot.

*by ton, I mean way more than the past couple of years combined. Some of that has been due to getting some energy back once I’ve fixed missing enzyme and mis-adjusted hormone levels in my body! I’m up to 40+ blog posts this year.

And personally, the punches felt like they kept coming, because this year we also found out that I have Graves’ disease, taking my chronic disease count up to 4. Argh. (T1D, celiac, EPI, and now Graves’, for those curious about my list.)

My experience with Graves’ has included symptoms of subclinical hyperthyroidism (although my T3 and T4 are in range), and I have chosen to try thyroid medication in order to manage the really bothersome Graves’-related eye symptoms. That’s been an ongoing process and the symptoms of this have been up and down a number of times as I went on medication, reduced medication levels, etc.

What I’ve learned from my experience with both EPI and Graves’ in the same year is that there are some huge gaps in medical knowledge around how these things actually work and how to use real-world data (whether patient-recorded data or wearable-tracked data) to help with diagnosis, treatment (including medication titration), etc. So the upside to this is I have quite a few new projects and articles coming to fruition to help tackle some of the gaps that I fell into or spotted this year.

And that’s why I’m feeling optimistic, and like I accomplished quite a bit more in 2022 than in 2021. Some of it is the satisfaction of knowing the core two reasons why the previous year felt so physically bad; hopefully no more unsolved mysteries or additional chronic diseases will pop up in the next few years. Yet some of it is also the satisfaction of solving problems and creating solutions that I’m uniquely poised, due to my past experiences and skillsets, to solve. That feels good, and it feels good as always to get to channel my experiences and expertise to try to create solutions with words or code or research to help other people.

Dealing With And Avoiding Chronic Disease Management Burnout

I’ve been thinking about juggling lately, especially as this year I’ve had to add a series of new habits and behaviors and medications to manage not one but two new chronic diseases. Getting one new chronic disease is hard; getting another is hard; and the challenges aren’t necessarily linear or exponential, and they’re not necessarily obvious up front.

But sometimes the challenges do compound over time.

In January when I started taking pancreatic enzyme replacement therapy (PERT) for exocrine pancreatic insufficiency (EPI or PEI), I had to teach myself to remember to take enzymes at every meal. Not just some time around the meal, but 100% every time before (by only a few minutes) or right at the start of the meal. With PERT, the timing matters for efficacy. I have a fast/short feedback loop – if I mis-time my enzymes or don’t take them, I get varying symptoms within a few hours that then bother me for the rest of the day, overnight, and into the next morning. So I’m very incentivized to take the enzymes and time them effectively when I eat. However, as I started to travel (my first trip out of the country since the pandemic started), I was nervous about trying to adapt to travel and being out of my routine at home where I’ve placed enzymes in visible eye sight of every location where I might consume food. Thankfully, that all went well and I managed not to forget taking enzymes when I ate and all was well. But I know I’m still building the habit of taking enzymes and eating, and that involves both always having enzymes with me and remembering to get them out and take them. It sounds like a trivial amount of things to remember, but this is added on top of everything else I’m doing for managing my health and well-being.

This includes other “simple” things like taking my allergy medications – because I’m allergic to cats (and we have them!), trees, dust, etc. And vitamins (I’m vitamin D deficient when I don’t take vitamin D).

And brushing my teeth and flossing.

You do that too, right? Or maybe you’re one of those people who struggle to remember to floss. It’s normal.

The list of well-being management gets kind of long when you think about all the every day activities and habits you have to help you stay at your best possible health.

Eat healthy! (You do that, right? 😉 )

Hydrate!

Exercise!

Etc.

I’ve also got the background habits of 20 years of living with diabetes: keeping my pump sites on my body; refilling the reservoir and changing the pump site every few days; making sure the insulin doesn’t get too hot or cold; making sure my CGM data isn’t too noisy; changing my CGM sensor when needed; estimating ballpark carbs and entering them and/or temporary targets to indicate exercise into my open source AID; keeping my AID powered; keeping my pump powered; keeping my phone – which has my CGM visibility on it – powered and nearby. Ordering supplies – batteries and pump sites and reservoirs and CGM transmitters and CGM sensors and insulin and glucagon.

Some of these are daily or every few days tasks; others are once or twice a month or every three months.

Those stack up sometimes where I need to refill a reservoir and oops, get another bottle of insulin out of the fridge which reminds me to make a note to check on my shipment of insulin which hasn’t arrived yet. I also need to change my pump site and my CGM sensor is expiring at bedtime so I need to also go ahead and change it so the CGM warmup period will be done by the time I go to sleep. I want to refill my reservoir and change the pump site after dinner since the dinner insulin is more effective on the existing site; I think of this as I pull my enzymes out to swallow as I start eating. I’ll do the CGM insertion when I do my pump site change. But the CGM warmup period is then in the after-dinner timeframe so I then have to keep an eye on things manually because my AID can’t function without CGM data so 2 hours (or more) of warmup means extra manual diabetes attention. While I’m doing that, I also need to remember to take my allergy medication and vitamin D, plus remembering to take my new thyroid medication at bedtime.

Any given day, that set of overlapping scenarios may be totally fine, and I don’t think anything of them.

On other days, where I might be stressed or overwhelmed by something else – even if it’s not health-related – that can make the above scenario feel overwhelmingly difficult.

One of the strategies I discussed in a previous post relative to planning travel or busy periods like holidays is trying to separate tasks in advance (like pre-filling a reservoir), so the action tasks (inserting a pump site and hooking it up to a new reservoir) don’t take as long. That works well, if you know the busy period is coming.

But sometimes you don’t have awareness of a forthcoming busy period and life happens. Or it’s not necessarily busy, per se, but you start to get overwhelmed and stressed and that leaks over into the necessary care and feeding of medical stuff, like managing pump sites and reservoirs and sensors and medication.

You might start negotiating with yourself: “do I really need to change that pump site today? It can wait until tomorrow”. Or you might wait until your reservoir actually hits the ‘0’ level (which isn’t fully 0; there’s a few units plus or minus some bubbles left) to refill it. Or other things like that, whether it’s not entering carbs into your pump or AID or not bolusing. Depending on your system/setup, those things may not be a big deal. And for a day or two, they’re likely not a big deal overall.

But falling into the rut of these becoming the new normal is not optimal – that’s burnout, and I try to avoid getting there.

When I start to have some of those thought patterns and recognize that I have begun negotiating with myself, I try to voice how I’m feeling to myself and my spouse or family or friends. I tell them I’m starting to feel “crispy” (around the edges) – indicating I’m not fully burnt out, but I could get all the way to burnout if I don’t temporarily change some things. (Or permanently, but often for me temporary shifts are effective.)

One of the first things I do is think through what is the bare minimum necessary care I need to take. I go above and beyond and optimize a LOT of things to get above-target outcomes in most areas. While I like to do those things, they’re not necessary. So I think through the list of necessary things, like: keeping a working pump site on my body; keeping insulin in a reservoir attached to my pump; keeping my CGM sensor working; and keeping my AID powered and nearby.

That then leaves a pile of tasks to consider:

  1. Not doing at all for ___ period of time
  2. Not doing myself but asking someone else to do for ____ period of time

And then I either ask or accept the offers of help I get to do some of those things.

When I was in high school and college, I would have weekends where I would ask my parents to help. They would take on the task of carb counting (or estimating) so I didn’t have to. (They also did HEAPS of work for years while I was on their insurance to order and keep supplies in the house and wrangle with insurance so I didn’t have to – that was huge background help that I greatly appreciated.)

Nowadays, there are still things I can and do get other people to help with. Sometimes it’s listening to me vent (with a clear warning that I’m just venting and don’t need suggestions); my parents often still fill that role for me! Since I’m now married and no longer living alone, Scott offers a lot of support especially during those times. Sometimes he fills reservoirs for me, or more often will bring me supplies from the cabinet or fridge to wherever I’m sitting (or even in bed so I don’t have to get up to go change my site). Or he’ll help evaluate and determine that something can wait until a later time to do (e.g. change pump site at another time). Sometimes I get him to open boxes for me and we re-organize how my supplies are to make them easier to grab and go.

Those are diabetes-specific examples, but I’ve also written about how helpful additional help can be sometimes for EPI too, especially with weighing and estimating macronutrient counts so I can figure out my PERT dosing. Or making food once I’ve decided what I want to eat, again so I can separate deciding what to eat and what the counts/dosing is from the action tasks of preparing or cooking the food.

For celiac, one of the biggest changes that has helped was Scott asking family members to load the “Find Me Gluten Free” app on their phone. That way, if we were going out to eat or finding a takeout option, instead of everyone ALWAYS turning to me and saying “what are the gluten free options?”, they could occasionally also skim the app to see what some of the obvious choices were, so I wasn’t always having to drive the family decision making on where to eat.

If you don’t have a chronic illness (or multiple chronic illnesses), these might not sound like a big deal. If you do (even if you have a different set of chronic disease(s)), maybe you recognize some of this.

There are estimates that people with diabetes make hundreds of decisions and actions a day for managing living with diabetes. Multiply that times 20 years. Ditto for celiac, for identifying and preparing and guarding against cross-contamination of said gluten-free food – multiply that work every day times 14 years. And now a year’s worth of *every* time I consider eating anything to estimate (with reading nutrition labels or calculating combinations based on food labels or weighing and googling and estimating compared to other nutrition labels) how much enzymes to take and remembering to swallow the right number of pills at the optimal times. Plus the moral and financial weight of deciding how to balance efficacy with cost of these enzymes. Plus several months now of an additional life-critical medication.

It’s so much work.

It’s easy to get outright burnt out, and common to start to feel a little “crispy” around the edges at times.

If you find yourself in this position, know that it’s normal.

You’re doing a lot, and you’re doing a great job to keep yourself alive.

You can’t do 110% all the time, though, so it is ok to figure out what is the bare minimum and some days throughout the year, just do that, so you can go back to 110%-ing it (or 100%-ing) the other days.

With practice, you will increasingly be able to spot patterns of scenarios or times of the year when you typically get crispy, and maybe you can eventually figure out strategies to adapt in advance (see me over here pre-filling reservoirs ahead of Thanksgiving last week and planning when I’d change my pump site and planning exactly what I would eat for 3 days).

TLDR:

  • Living with chronic disease is hard. And the more diseases you have, the harder it can be.
  • If you live with or love someone with chronic disease(s), ask them if you can help. If they’re venting, ask if they want you to listen (valuable!) or to let you know if at any point they want help brainstorming or for you to provide suggestions (helpful *if* desired and requested).
  • If you’re the one living with chronic disease(s), consider asking for help, even with small things. Don’t let your own judgment (“I should be able to do this!”) get in your way of asking for help. Try it for a day or for a weekend.
Dealing with and avoiding chronic disease burnout by Dana M. Lewis

Costs, Price and Calculations for Living With Diabetes and Exocrine Pancreatic Insufficiency and Celiac and Graves

Living with diabetes is expensive. However, the cost and price goes beyond the cost of insulin, which you may have heard about lately. In addition to insulin, you need tools and supplies to inject the insulin (e.g. syringes, insulin pens, or an insulin pump). Depending on those methods, you need additional supplies (e.g. pen needles for insulin pens, reservoirs and infusion sets for insulin pumps). You also need blood glucose monitoring supplies, whether that is meter and up to a dozen glucose test strips a day and/or a continuous glucose monitor which is made up of a disposable sensor and a reusable transmitter.

All those costs add up on a daily basis for people living with diabetes, even if you have health insurance.

Understanding the costs of living with chronic illness with health insurance in the US

Every year in the US we have “open enrollment” time when we opt-in or enroll into our choice of health insurance plan for the following year. I am lucky and have access to insurance through my husband’s employer, who covers part of the cost for him and me (as a spouse). We have a high-deductible (HSA-qualified) health plan, so our deductible (the amount we must pay before insurance begins to pay for a portion of the costs) is usually around $1,500-$2,500 USD for me. After that, I might pay either a fixed copay ($10 or $25 or similar) for a doctor’s visit, or a percentage (10% or 20%) while the insurance covers the rest of the cost. Then there is a fixed “out of pocket (OOP) max” cost for the year, which might be something like $3,000 USD total. Sometimes the OOP max is pretty close to the deductible, because we typically choose the ‘high deductible’ plan (with no monthly cost for the insurance plan) over a plan where we have a lower deductible but pay a monthly premium for the insurance.

That’s a very rough summary of how I see my health insurance. Everyone has different health insurers (the company providing the insurance) and different plans (the costs will be different based on whether it’s through a different employer or if it’s an individual plan).

So the costs to people with diabetes can vary quite a bit in the US, depending on whether you have insurance: there is variation in the monthly cost of the plan, the amount of the deductible, and the amount of the out of pocket max.

In order to choose my plan for the following year, I look at the total cost for the year of my health supplies and health care, then look at the plans. Usually, the high deductible plan “feels” more expensive because I might have to reach $2,500 before insurance kicks in; however, the out of pocket cap may only be $500 beyond that, so that I’m going to pay a maximum of $3,000 for the year in insurance-covered costs*. There are other types of plans that are lower deductible, such as insurance kicking in after a $250 deductible. That sounds better, right? Well, those plans come with a monthly cost (premium) of $250. So you need to factor that in ($250×12=$3,000) alongside the deductible and any costs up to the out of pocket max ($2,500). From this, you’d pay the $3,000 total yearly premium plus up to $2,500 OOP, or $5,500. Thus, even though it has a lower deductible and OOP, you’re in total paying much more ($5,500 vs $3,000) if you’re someone like me.

Why? Because I have >$3,000 of health supply costs every year.

This is why every few years (mostly after I forget what I learned the last time), I do the math on how much my supply costs to see if I’m still making the most cost-effective choices for me with my insurance plans.

I wanted to share this math methodology below, also because this year I have new variables, which are two new chronic diseases (exocrine pancreatic insufficiency and Graves) that add additional costs and healthcare needs and require me to want to re-check my math.

* Clarifying that previously and most years I pay out of pocket for minor, relatively low-cost health supplies like vitamins or tape to cover my CGM that I buy and do not get through insurance coverage, so my total costs are usually over that OOP max, but likely not by more than a few hundred dollars.

Note: Do not attempt to use this as an absolute cost of diabetes for anyone else. These numbers are based on my use cases in terms of volume of insulin, insurance coverage, etc. Ditto for trying to use the costs for EPI. Where relevant below, I provide rough estimates of my methodology so that another individual with diabetes or EPI/PEI could use similar methods to calculate their own rough costs, if they wished. However, this cannot be used to determine any average cost to people with diabetes more broadly, so don’t excerpt or cite this in those ways. This is purely n=1 math with conclusions that are unique to this n=1 (aka me) but with methods that can be extended for others.

I’ll cover my estimates for costs of diabetes, celiac, exocrine pancreatic insufficiency (EPI or PEI), and Graves’ disease below. This doesn’t account for visits (e.g. doctor’s appointments), lab tests, or other health costs such as x-rays for breaking bones, because those vary quite a bit year to year and aren’t guaranteed fixed costs. But the supplies I need for diabetes, EPI, etc are fixed costs, which I use to anchor my math. Given that they end up well above my OOP max, the then-variable amount of other costs (doctor’s appointments, lab work, etc) is minor in comparison and irrelevant regardless of how much it varies year to year.

The costs (for me) of daily living with diabetes

(You read the caveat note above, right? This is my math based on my volume of insulin, food intake, personal insulin sensitivity, etc. Lots of variables, all unique to me.)

To calculate the yearly costs of living with diabetes, I make a list of my diabetes supplies.

Primarily for me, those are:

  • Insulin
  • CGM sensors
  • CGM transmitter
  • Pump sites
  • Reservoirs

(Not included: meter/test strips or the cost of a pump or the cost of any hardware I’m using for my open source automated insulin delivery. I’ve not bought a new in-warranty pump in years, and that alone takes care of the OOP max on my insurance plan if I were to buy a pump that year. Anyway, the above list is really my recurring regular costs, but if you were purchasing a pump or on a subscription plan for a pump, you’d calculate that in as well).

First, I calculate the daily cost of insulin. I take the cost of a vial of my insulin and divide it by 1,000, because that’s how many units a vial of insulin has. Then I multiply that by the average number of units I use per day to get the cost per day of insulin, which for me is $4.36. (The yearly cost of insulin would be $1,592.)

Then, I calculate my CGM sensors. I take the total cost for a 3 month order of sensors and divide by the number of sensors; then divide by 10 days (because a sensor lasts about 10 days) to get the cost per day of a CGM sensor: about $11 per day. But, you also have to add in the cost of the re-usable transmitter. Again, factor the cost of a transmitter over the number of days it covers; for me it’s about $2 per day. In total, the cost per day of CGM is about $13 and the yearly cost of CGM is roughly $4,765.

Next is pump sites and reservoirs. You need both to go with your insulin pump: the pump site is the catheter site into your body and the tubing (this cumulatively gets replaced every few days), and the reservoir is disposable and is filled with insulin. The cost per day of pump sites and reservoirs is about $6 ($4.67 for a pump site and $1.17 for a reservoir) and the yearly cost of pump sites and reservoirs is $2,129.

If you add up these supplies (pump sites and reservoirs, CGM sensor and transmitter, insulin), the daily cost of diabetes for me is about $23. The yearly cost of diabetes for me is $8,486.

Give that $8,486 is well over the out of pocket max cost of $3,000, you can see why that for diabetes alone there is reason to pick the high deductible plan and pay a max of $3,000 for these supplies out of pocket.

The daily and yearly costs of living with celiac disease

But I don’t just have type 1 diabetes, so the above are not my only health supply costs.

I also have celiac disease. The treatment is a 100% gluten free diet, and eating gluten free is notoriously more expensive than the standard cost of food, whether that is groceries or eating out.

However, the cost of gluten free food isn’t covered by health insurance, so that doesn’t go in my cost calculation toward pricing the best insurance plan. Yet, it does go into my “how much does it cost every day from my health conditions” mental calculation.

I recently looked at a blog post that summarized the cost of gluten free groceries by state compared to low/medium/high grocery costs for the average person. By extrapolating my state’s numbers from a high-cost grocery budget, plus adding $5 each for eating out twice a week (typically gluten free food has at least a $2-3 surcharge in addition to being at higher cost restaurants, plus the fact that I can’t go eat at most drive-throughs, which is why I use $5/meal to offset the combined cost of the actual surcharge plus my actual options being more expensive).

I ended up estimating about a $3 daily average higher cost of being gluten free, or $1,100 per year cost of eating gluten free for celiac.

That’s probably an underestimate for me, but to give a ballpark, that’s another $1,000 or more I’m paying out of pocket in addition to healthcare costs through insurance.

The daily and yearly cost of living with exocrine pancreatic insufficiency and the daily and yearly cost of pancreatic enzyme replacement therapy

I spent a pleasant (so to speak) dozen or so years when “all” I had to pay for was diabetes supplies and gluten free food. However, in 2022, I was diagnosed with exocrine pancreatic insufficiency (and more recently also Graves’ disease, more on that cost below) and because I have spent ~20 years paying for diabetes, I wasn’t super surprised at the costs of EPI/PEI. However, most people get extreme sticker shock (so to speak) when they learn about the costs of pancreatic enzyme replacement therapy (PERT).

In summary, since most people don’t know about it: exocrine pancreatic insufficiency occurs for a variety of reasons, but is highly correlated with all types of diabetes, celiac, and other pancreatic conditions. When you have EPI, you need to take enzymes every time you eat food to help your body digest fat, protein, and carbohydrates, because in EPI your pancreas is not producing enough enzymes to successfully break down the food on its own. (Read a lot more about EPI here.)

Like diabetes, where different people may use very different amounts of insulin, in EPI people may need very different amounts of enzymes. This, like insulin, can be influenced by their body’s makeup, and also by the composition of what they are eating.

I use PERT (pancreatic enzyme replacement therapy) to also describe the prescription enzyme pills used for EPI. There are 6 different brands approved by the FDA in the US. They also come in different sizes; e.g. Brand A has 3,000, 6,000, 12,000, 24,000, 36,000 size pills. Those size refer to the units of lipase. Brand B has 3,000, 5,000, 10,000, 15,000, 20,000, 25,000, 40,000. Brands C, D, E and F have similar variety of sizes. The point is that when people compare amounts of enzymes you need to take into account 1) how many pills are they taking and 2) how much lipase (and protease and amylase) each of those pills are.

There is no generic for PERT. PERT is made from ground up pig pancreas. It’s expensive.

There are over the counter (OTC) enzymes made from alternative (plant etc) sources. However, there are ZERO studies looking at safety and efficacy of them. They typically contain much less lipase per pill; for example, one OTC brand pill contains 4,000 units of lipase per pill, or another contains 17,500 units of lipase per pill.

You also need to factor in the reliability of these non-approved pills. The quality of production can vary drastically. I had one bottle of OTC pills that was fine; then the next bottle of OTC pills I started to find empty capsules and eventually dumped them all out of the bottle and actually used a colander to filter out all of the enzyme powder from the broken capsules. There were more than 30 dud pill capsules that I found in that batch; in a bottle of 250 that means around 12% of them were unusable. That makes the reliability of the other ones suspect as well.

A pile of powder in the sink next to a colander where a bunch of pills sit. The colander was used to filter out the loose powder. On the right of the image is a baggie with empty pill capsules, illustrating where this loose powder came from. This shows the unreliability of over the counter (OTC) enzymes.

If the reliability of these pills even making it to you without breaking can be sketchy, then you need to assume that the counts of how much lipase (and protease and amylase) may not be precisely what the label is reporting. Again, there have been no tests for efficacy of these pills, so anyone with EPI or PEI needs to use these carefully and be aware of these limitations.

This unreliability isn’t necessarily true of all brands, however, or all types of OTC enzymes. That was a common brand of pancrelipase (aka contains lipase, protease, and amylase). I’ve had more success with the reliability of a lipase-only pill that contains about 6,000 units of lipase. However, it’s more expensive per pill (and doesn’t contain any of the other enzymes). I’ve used it to “top off” a meal with my prescription PERT when my meal contains a little bit more fat than what one PERT pill would “cover” on its own.

This combination of OTC and prescription PERT is where the math starts to get complicated for determining the daily cost and yearly cost of pancreatic enzyme replacement therapy.

Let’s say that I take 6-8 prescription PERT pills every day to cover what I eat. It varies because I don’t always eat the same type or amount of food; I adjust based on what I am eating.

The cost with my insurance and a 90 day supply is $8.34 for one PERT pill.

Depending on whether I am eating less fat and protein on a particular day and only need 6 PERT, the cost per day of enzymes for EPI might be $50.04, whereas if I eat a little more and need 8 PERT, the cost per day of enzymes for EPI could be up to $66.72.

The costs per year of PERT for EPI then would range from $18,000 (~6 per day) to $24,000 (~8 per day).

Please let that sink in.

Eighteen to twenty four thousand dollars to be able to successfully digest my food for a single year, not taking into account the cost of food itself or anything else.

(See why people new to EPI get sticker shock?!)

Even though I’m used to ‘high’ healthcare costs (see above estimates of $8,000 or more per year of diabetes costs), this is a lot of money. Knowing every time that I eat it “costs” at least one $8.34 pill is stressful. Eating a bigger portion of food and needing two or three pills? It really takes a mental toll in addition to a financial cost to think about your meal costing $25.02 (for 3 pills) on top of the cost of the food itself.

This is why OTC pills are interesting, because they are drastically differently priced. The 4,000 unit of lipase multi-enzyme pill that I described costs $0.09 per pill, which is about $0.02 per 1000 units of lipase. Compared to my prescription PERT which is $0.33 per 1000 units of lipase, it’s a lot cheaper.

But again, check out those pictures above of the 4,000 units of lipase OTC pills. Can you rely on those?

Not in the same way you can with the prescription PERT.

In the course of taking 1,254 prescription PERT pills this year (so far), I have not had a single issue with one of those pills. So in part the high cost is to ensure the safety and efficacy. Compare that to 12% (or more) of the OTC pills being complete duds (empty pill capsules that have emptied their powder into the bottle) and some % of unreliability even with a not-broken capsule.

Therefore it’s not feasible to me to completely replace prescription PERT with OTC pills, although it’s tempting purely on price.

I previously wrote at a high level about the cost calculations of PERT, but given my desire to look at the annual cost for estimating my insurance plan (plus many more months of data), I went deeper into the math.

I need to take anywhere from 2-6 OTC pills (depending on the brand and size) to “match” the size of one PERT. I found a new type (to me) of OTC pills that are more units of lipase (so I need 2 to match one PERT) instead of the two other kinds (which took either 4 or 6 to match one PERT), which would enable me to cut down on the number of pills swallowed.

The number of pills swallowed matters.

So far (as of mid-November, after starting PERT in early January), I have swallowed at least 1,254 prescription PERT enzyme pills. I don’t have as much precision of numbers on my OTC pills because I don’t always log them (there’s probably a few dozen I haven’t written down, but I probably have logged 95% of them in my enzyme tracking spreadsheet that I use to help calculate the amount needed for each meal/snack and also to look at trends.), but it’s about 2,100 OTC enzyme pills swallowed.

This means cumulatively this year (which is not over), I have swallowed over 3,300 enzyme pills. That’s about 10 enzyme pills swallowed every day!

That’s a lot of swallowing.

That’s why switching to a brand that is more units of lipase per pill, where 2 of these new OTC kind matches one PERT instead of 4-6, is also significant. While it is also slightly cheaper than the combination of the two I was using previously (a lipase-only and a multi-enzyme version), it is fewer pills to achieve the same amount.

If I had taken prescription PERT instead of the OTCs, it would have saved me over 1,600 pills to swallow so far this year.

You might be thinking: take the prescription PERT! Don’t worry about the OTC pills! OMG that’s a lot of pills.

(OMG, it *is* a lot of pills: I think that as well now that I’m adding up all of these numbers.)

Thankfully, so far I am not having issues with swallowing these pills. As I get older, that might change and be a bigger factor in determining my strategy for how I dose enzymes; but right now, that’s not the biggest factor. Instead, I’m looking at efficacy (getting the right amount of enzymes to match my food), the cost (in terms of price), and then optimizing and reducing the total number of pills if I can. But the price is such a big variable that it is playing the largest role in determining my strategy.

How should we collectively pay for this?

You see, I don’t have EPI in a vacuum.

As I described at the top of the post, I already have $8,000+ of yearly diabetes costs. The $18,000 (or $24,000 or more) yearly enzyme costs are a lot. Cumulatively, just these two alone mean my supply costs are $26-32,000 (or more), excluding other healthcare costs. Thankfully, I do have insurance to cover costs after I hit my out of pocket max, but the bigger question is: who should be paying for this?

If my insurer pays more, then the employer pays more, which means employees get worse coverage on our pooled insurance plan. Premiums go up and/or the plans cover less, and the out of pocket costs to everyone goes up.

So while it is tempting to try to “stuff” all of my supply needs into insurance-covered supplies, in order to reduce my personal out of pocket costs in the short run, that raises costs for everyone in the long run.

This year, for all of those (remember I estimated 2,100 OTC pills swallowed to date) OTC pills I bought, it cost me $515. Out of pocket. Not billed through insurance; they know nothing about it.

It feels like a lot of money. However, if you calculate how many PERT it replaced and the cost per PERT pill, I saved $4,036 by swallowing 1,652 extra pills.

Is paying $500 to save everyone else $4000 worth it?

I think so.

Again, the “price” question gets interesting.

The raw costs of yearly supplies I don’t pay completely; remember with health insurance I am capped at $3,000 out of pocket for supplies I get through insurance. However, again, it’s worth considering that additional costs do not cost me but they cost the insurer, and therefore the employer and our pool of people in this insurance plan and influences future costs for everyone on insurance. So if I can afford (although I don’t like it) $500-ish out of pocket and save everyone $4,000 – that’s worth doing.

Although, I think I can improve on that math for next year.

I was taking the two OTC kinds that I had mentioned: one that was lipase-only and very reliable, but $0.28/pill or $0.04 per 1000 units of lipase (and contains ~6000 units of lipase). The less reliable multi-enzyme pill was cheaper ($.09) per pill but only contains 4000 units of lipase, and was $.02 per 1000 units of lipase. That doesn’t factor in the duds and the way I had to increase the number of pills to account for the lack of faith I had in the 4000 units of lipase always being 4000 units of lipase.

The new OTC pill I mentioned above is $0.39 per pill, which is fairly equivalent price to a combined lipase-only and multi-enzyme pill. In fact, I often would take 1+1 for snacks that had a few grams of protein and more than a few grams of lipase. So one new pill will cover 17,000 units of lipase (instead of 10,000, made up of 6000+4000) at a similar cost: $0.39 instead of $0.36 (for the two combined). And, it also has a LOT more protease per pill, too. It has >2x the amount of protease as the multi-enzyme OTC pill, and is very similar to the amount of protease in my prescription PERT! I’ve mostly discussed the math by units of lipase, but I also dose based on how much protein I’m eating (thus, protease to cover protein the way lipase covers fat digestion), so this is also a benefit. As a result, two of the new OTC pill now more than match 1 PERT on lipase, double the protease to 1 PERT, and is only two swallows instead of the 4-6 swallows needed with the previous combination of OTCs.

I have only tested for a few days, but so far this new OTC is working fairly well as a substitute for my previous two OTC kinds.

Given the unreliability of OTCs, even with different brands that are more reliable than the above picture, I still want to consume one prescription PERT to “anchor” my main meals. I can then “top off” with some of the new OTC pills, which is lower price than more PERT but has the tradeoff cost of slightly less reliability compared to PERT.

So with 3 main meals, that means at least 3 PERT per day ($8.34 per pill) at $25.02 per day in prescription PERT costs and $9,132 per year in prescription PERT costs. Then to cover the additional 3-5 PERT pills I would otherwise need, assuming 2 of the new OTC covers 1 PERT pills, that is 6-10 OTC pills.

Combined, 3 PERT + 6 OTC pills or 3 PERT + 10 OTC pills would be $27.36 or $28.92 per day, or $9,986 or $10,556 per year.

Still quite a bit of money, but compared to 6-8 PERT per day (yearly cost $18,264 to $24,352), it saves somewhere between $7,708 per year (comparing 6 PERT to 3 PERT + 6 OTC pills per day) all the way up to $14,366 per year (comparing 8 PERT to 3 PERT +10 OTC pills per day).

And coming back to number of pills swallowed, 6 PERT per day would be 2,190 swallows per year; 8 PERT pills per day is 2,920 swallows per year; 3 PERT + 6 OTC is 9 pills per day which is 3,285 swallows per year; and 3 PERT + 10 OTC is 13 swallows per day which is 4,745 swallows per year.

That is 1,095 more swallows per year (3PERT+6 OTC vs 6 PERT) or 1,825 more swallows per year (3 PERT + 10 OTC vs 8 PERT).

Given that I estimated I swallowed ~10 enzyme pills per day this year so far, the estimated range of 9-13 swallows with the combination of PERT and OTC pills (either 3 PERT + (6 or 10) OTC) for next year seems reasonable.

Again, in future this might change if I begin to have issues swallowing for whatever reason, but in my current state it seems doable.

The daily and annual costs of thyroid treatment for Graves’ Disease

No, we’re still not done yet with annual health cost math. I also developed Graves’ disease with subclinical hyperthyroidism this year, putting me to a grand total of 4 chronic health conditions.

Luckily, though, the 4th time was the charm and I finally have a cheap(er) one!

My thyroid med DOES have a generic. It’s cheap: $11.75 for 3 months of a once-daily pill! Woohoo! That means $0.13 per day cost of thyroid treatment and $48 per year cost of thyroid treatment.

(Isn’t it nice to have cheap, easy math about at least one of 4 things? I think so!)

Adding up all the costs of diabetes, celiac disease, exocrine pancreatic insufficiency and Graves’ Disease

High five if you’ve read this entire post; and no problem if you skimmed the sections you didn’t care about.

Adding it all up, my personal costs are:

  • Diabetes: $23.25 per day; $8,486 per year
  • Celiac: $3 per day; $1,100 per year (all out of pocket)
  • Exocrine Pancreatic Insufficiency:
    • Anywhere from $50.04 up to $66.72 per day with just prescription PERT pills; $18,265 (6 per day) to $24,353 (8 per day) per year
    • With a mix of prescription and OTC pills, $27.36 to $28.92 per day; $9,986 to $10,556 per year.
    • Of this, the out of pocket cost for me would be $2.34 to $3.90 per day; or $854 up to $1,424 per year.
  • Thyroid/Graves: $0.13 per day; $48 per year

Total yearly cost:

  • $27,893 (where EPI costs are 6 prescription PERT per day); 2,190 swallows
  • $33,982 (where EPI costs are 8 prescription PERT per day); 2,920 swallows
  • $19,615 (where EPI costs are 3 prescription PERT and 6 OTC per day); 3,285 swallows
  • $20,185 (where EPI costs are 3 prescription PERT and 9 OTC per day); 4,745 swallows

* My out of pocket costs per year are $854-$1424 for EPI when using OTCs to supplement prescription PERT and an estimated $1,100 for celiac-related gluten free food costs. 

** Daily cost-wise, that means $76.42, $93.10, $53.74, or $55.30 daily costs respectively.

*** The swallow “cost” is 1,095-1,825 more swallows per year to get the lower price cost of enzymes by combining prescription and OTC.

Combining these out of pocket costs with my $3,000 out of pocket max on my insurance plan, I can expect that I will therefore pay around $4,900 to $5,600 next year in health supply costs, plus another few hundred for things like tape or vitamins etc. that aren’t major expenses.

TLDR: 

  • Diabetes is expensive, and it’s not just insulin.
    • Insulin is roughly 19% of my daily cost of diabetes supplies. CGM is currently 56% of my diabetes supply costs.
  • EPI is super expensive.
    • OTC pills can supplement prescription PERT but have reliability issues.
    • However, combined with prescription PERT it can help drastically cut the price of EPI.
    • The cost of this price reduction is significantly more pills to swallow on a daily basis, and adds an additional out of pocket cost that insurance doesn’t cover.
    • However in my case; I am privileged enough to afford this cost and choose this over increasing everyone in my insurance plan’s costs.
  • Celiac is expensive and mostly an out of pocket cost.
  • Thyroid is not as expensive to manage with daily medication. Yay for one of four being reasonably priced!

REMEMBER to not use these numbers or math out of context and apply them to any other person; this is based on my usage of insulin, enzymes, etc as well as my insurance plan’s costs.

Yearly costs, prices, and calculations of living with 4 chronic diseases (type 1 diabetes, celiac, Graves, and exocrine pancreatic insufficiency)

Regulatory Approval Is A Red Herring

One of the most common questions I have been asked over the last 8 years is whether or not we are submitting OpenAPS to the FDA for regulatory approval.

This question is a big red herring.

Regulatory approval is often seen and discussed as the one path for authenticating and validating safety and efficacy.

It’s not the only way.

It’s only one way.

As background, you need to understand what OpenAPS is. We took an already-approved insulin pump that I already had, a continuous glucose monitor (CGM) that I already had, and found a way to read data from those devices and also to use the already-built commands in the pump to send back instructions to automate insulin delivery via the decision-making algorithm that we created. The OpenAPS algorithm was the core innovation, along with the realization that this already-approved pump had those capabilities built in. We used various off the shelf hardware (mini-computers and radio communication boards) to interoperate with my already approved medical devices. There was novelty in how we put all the pieces together, though the innovation was the algorithm itself.

The caveat, though, is that although the pump I was using was regulatory-approved and on the market, which is how I already had it, it had later been recalled after researchers, the manufacturer, and the FDA realized that you could use the already-built commands in the pump’s infrastructure. So these pumps, while not causing harm to anyone and no cases of harm have ever been recorded, were no longer being sold. It wasn’t a big deal to the company; it was a voluntary recall, and people like me often chose to keep our pumps if we were not concerned about this potential risk.

We had figured out how to interoperate with these other devices. We could have taken our system to the FDA. But because we were using already-off-the-market pumps, there was no way the FDA would approve it. And at the time (circa 2014), there was no vision or pathway for interoperable devices, so they didn’t have the infrastructure to approve “just” an automated insulin delivery algorithm. (That changed many years later and they now have infrastructure for reviewing interoperable pumps, CGM, and algorithms which they call controllers).

The other relevant fact is that the FDA has jurisdiction based on the commerce clause in the US Constitution: Congress used its authority to authorize the FDA to regulate interstate commerce in food, drugs, and medical devices. So if you’re intending to be a commercial entity and sell products, you must submit for regulatory approval.

But if you’re not going to sell products…

This is the other aspect that many people don’t seem to understand. All roads do not lead to regulatory approval because not everyone wants to create a company and spend 5+ years dedicating all their time to it. That’s what we would have had to do in order to have a company to try to pursue regulatory approval.

And the key point is: given such a strict regulatory environment, we (speaking for Dana and Scott) did not want to commercialize anything. Therefore there was no point in submitting for regulatory approval. Regardless of whether or not the FDA was likely to approve given the situation at the time, we did not want to create a company, spend years of our life dealing with regulatory and compliance issues full time, and maybe eventually get permission to sell a thing (that we didn’t care about selling).

The aspect of regulatory approval is a red herring in the story of the understanding of OpenAPS and the impact it is having and could have.

Yes, we could have created a company. But then we would not have been able to spend the thousands of hours that we spent improving the system we made open source and helping thousands of individuals who were able to use the algorithm and subsequent systems with a variety of pumps, CGMs, and mobile devices as an open source automated insulin delivery system. We intentionally chose this path to not commercialize and thus not to pursue regulatory approval.

As a result of our work (and others from the community), the ecosystem has now changed.

Time has also passed: it’s been 8 years since I first automated insulin delivery for myself!

The commercial players have brought multiple commercial AIDs to market now, too.

We created OpenAPS when there was NO commercial option at the time. Now there are a few commercial options.

But it is also an important note that I, and many thousands of other people, are still choosing to use open source AID systems.

Why?

This is another aspect of the red herring of regulatory approval.

Just because something is approved does not mean it’s available to order.

If it’s available to order (and not all countries have approved AID systems!), it doesn’t mean it’s accessible or affordable.

Insurance companies are still fighting against covering pumps and CGMs as standalone devices. New commercial AID systems are even more expensive, and the insurance companies are fighting against coverage for them, too. So just because someone wants an AID and has one approved in their country doesn’t mean that they will be able to access and/or afford it. Many people with diabetes struggle with the cost of insulin, or the cost of CGM and/or their insulin pump.

Sometimes providers refuse to prescribe devices, based on preconceived notions (and biases) about who might do “well” with new therapies based on past outcomes with different therapies.

For some, open source AID is still the most accessible and affordable option.

And in some places, it is still the ONLY option available to automate insulin delivery.

(And in most places, open source AID is still the most advanced, flexible, and customizable option.)

Understanding the many reasons why someone might choose to use open source automated insulin delivery folds back into the understanding of how someone chooses to use open source automated insulin delivery.

It is tied to the understanding that manual insulin delivery – where someone makes all the decisions themselves and injects or presses buttons manually to deliver insulin – is inherently risky.

Automated insulin delivery reduces risk compared to manual insulin delivery. While some new risk is introduced (as is true of any additional devices), the net risk reduction overall is significantly large compared to manual insulin delivery.

This net risk reduction is important to contextualize.

Without automated insulin delivery, people overdose or underdose on insulin multiple times a day, causing adverse effects and bad outcomes and decreasing their quality of life. Even when they’re doing everything right, this is inevitable because the timing of insulin is so challenging to manage alongside dozens of other variables that at every decision point play a role in influencing the glucose outcomes.

With open source automated insulin delivery, it is not a single point-in-time decision to use the system.

Every moment, every day, people are actively choosing to use their open source automated insulin delivery system because it is better than the alternative of managing diabetes manually without automated insulin delivery.

It is a conscious choice that people make every single day. They could otherwise choose to not use the automated components and “fall back” to manual diabetes care at any moment of the day or night if they so choose. But most don’t, because it is safer and the outcomes are better with automated insulin delivery.

Each individual’s actions to use open source AID on an ongoing basis are data points on the increased safety and efficacy.

However, this paradigm of patient-generated data and patient choice as data contributing toward safety and efficacy is new. There are not many, if any, other examples of patient-developed technology that does not go down the commercial path, so there are not a lot of comparisons for open source AID systems.

As a result, when there were questions about the safety and efficacy of the system (e.g., “how do you know it works for someone else other than you, Dana?”), we began to research as a community to address the questions. We published data at the world’s biggest scientific conference and were peer-reviewed by scientists and accepted to present a poster. We did so. We were cited in a piece in Nature as a result. We then were invited to submit a letter to the editor of a traditional diabetes journal to summarize our findings; we did so and were published.

I then waited for the rest of the research community to pick up this lead and build on the work…but they didn’t. I picked it up again and began facilitating research directly with the community, coordinating efforts to make anonymized pools of data for individuals with open source AID to submit their data to and for years have facilitated access to dozens of researchers to use this data for additional research. This has led to dozens of publications further documenting the efficacy of these solutions.

Yet still, there was concern around safety because the healthcare world didn’t know how to assess these patient-generated data points of choice to use this system because it was better than the alternative every single day.

So finally, as a direct result of presenting this community-based research again at the world’s largest diabetes scientific conference, we were able to collaborate and design a grant proposal that received grant funding from New Zealand’s Health Research Council (the equivalent of the NIH in the US) for a randomized control trial of the OpenAPS algorithm in an open source AID system.

An RCT is often seen as the gold standard in science, so the fact that we received funding for such a study alone was a big milestone.

And this year, in 2022, the RCT was completed and our findings were published in one of the world’s largest medical journals, the New England Journal of Medicine, establishing that the use of the OpenAPS algorithm in an open source AID was found to be safe and effective in children and adults.

No surprises here, though. I’ve been using this system for more than 8 years, and seeing thousands of others choose the OpenAPS algorithm on an ongoing, daily basis for similar reasons.

So today, it is possible that someone could take an open source AID system using the OpenAPS algorithm to the FDA for regulatory approval. It won’t likely be me, though.

Why not? The same reasons apply from 8 years ago: I am not a company, I don’t want to create a company to be able to sell things to end users. The path to regulatory approval primarily matters for those who want to sell commercial products to end users.

Also, regulatory approval (if someone got the OpenAPS algorithm in an open source AID or a different algorithm in an open source AID) does not mean it will be commercially available, even if it will be approved.

It requires a company that has pumps and CGMs it can sell alongside the AID system OR commercial partnerships ready to go that are able to sell all of the interoperable, approved components to interoperate with the AID system.

So regulatory approval of an AID system (algorithm/mobile controller design) without a commercial partnership plan ready to go is not very meaningful to people with diabetes in and of itself. It sounds cool, but will it actually do anything? In and of itself, no.

Thus, the red herring.

Might it be meaningful eventually? Yes, possibly, especially if we collectively have insurers to get over themselves and provide coverage for AID systems given that AID systems all massively improve short-term and long-term outcomes for people with diabetes.

But as I said earlier, regulatory approval does necessitate access nor affordability, so an approved system that’s not available and affordable to people is not a system that can be used by many.

We have a long way to go before commercial AID systems are widely accessible and affordable, let alone available in every single country for people with diabetes worldwide.

Therefore, regulatory approval is only one piece of this puzzle.

And it is not the only way to assess safety and efficacy.

The bigger picture this has shown me over the years is that while systems are created to reduce harm toward people – and this is valid and good – there have been tendencies to convert to the assumption that therefore the systems are the only way to achieve the goal of harm reduction or to assess safety and efficacy.

They aren’t the only way.

As explained above, FDA approval is one method of creating a rubber stamp as a shorthand for “is this considered to be safe and effective”.

That’s also legally necessary for companies to use if they want to sell products. For situations that aren’t selling products, it’s not the only way to assess safety and efficacy, which we have shown with OpenAPS.

With open source automated insulin delivery systems, individuals have access to every line of code and can test and choose for themselves, not just once, but every single day, whether they consider it to be safer and more effective for them than manual insulin dosing. Instead of blindly trusting a company, they get the choice to evaluate what they’re using in a different way – if they so choose.

So any questions around seeking regulatory approval are red herrings.

A different question might be: What’s the future of the OpenAPS algorithm?

The answer is written in our OpenAPS plain language reference design that we posted in February of 2015. We detailed our vision for individuals like us, researchers, and companies to be able to use it in the future.

And that’s how it’s being used today, by 1) people like me; and 2)  in research, to improve what we can learn about diabetes itself and improve AID; and 3) by companies, one of whom has already incorporated parts of our safety design as part of a safety layer in their ML-based AID system and has CE mark approval and is being sold and used by thousands of people in Europe.

It’s possible that someone will take it for regulatory approval; but that’s not necessary for the thousands of people already using it. That may or may not make it more available for thousands more (see earlier caveats about needing commercial partnerships to be able to interoperate with pumps and CGMs).

And regardless, it is still being used to change the world for thousands of people and help us learn and understand new things about the physiology of diabetes because of the way it was designed.

That’s how it’s been used and that’s the future of how it will continue to be used.

No rubber stamps required.

Regulatory Approval: A Red Herring

What It Feels Like To Run 100 Miles Or Similar Long Ultramarathons

Sometime in the last year, I decided I wanted to run 100 miles. In part, because I wanted to tackle the complex challenge and problem-solving that is even figuring out how to do it.

My situation as an ultrarunner is slightly atypical: I have type 1 diabetes and need to closely manage insulin levels and glucose levels while running; I have celiac disease so I can only eat 100% gluten free things; and I have exocrine pancreatic insufficiency (EPI) so I need to swallow enzymes with everything that I eat, including when I run. It’s a logistical cornucopia of challenges…which is in part why I wanted to do it. It wouldn’t be half as rewarding if it were easy? Or something like that.

But mainly, I wanted to prove to myself that I can do hard things, even things that most people think I can’t do. No, I can’t produce my own insulin, but I can locomote for 100 miles at one time despite this and the other challenges I have to deal with along the way.

Plus, there’s the “normal” ultrarunning challenges of fueling, hydrating, managing electrolytes, keeping your feet from becoming a ball of blisters, etc.

Ultrarunning is a sport where it generally doesn’t matter how fast you go, and the farther the distance the more of an equalizer it is. I’m a slow runner, and I had trained at an easy slow pace that I planned to run during my race (self-organized). Not having the pressure of time cutoffs would help. I was also curious whether running so slow at the start would possibly help me maintain a more even pace split across the entire run, and whether I could ultimately achieve a reasonable time by keeping consistent slow paces, compared to many I’ve read about who go a bit too fast at the start and end up with wildly different paces at the end. Everyone hurts running an ultra no matter how much you run or walk or both and no matter how fast or slow you go, but I was hoping that more consistent pacing and effort would minimize how terrible everything felt if I could pull that off.

Background

I trained, ran a 50k in June, and resumed training and worked back up to 24 mile long runs and all was going well, until I massively broke a toe and had 6 weeks off. Then I resumed training and re-built back up to running 29 miles, ending around midnight for night-run training. At that point, I had one more long run scheduled (32-ish miles), but decided I would rather skip the last long run and push my 100 mile run up a few weeks to try to beat the impending rainy season that Seattle would eventually get.

The joke was on me. We had 6+ weeks of terrible air quality, which peaked into a two-day stretch of downright “hazardous” (ugh) air quality the two days before my run. Air quality was finally improving overnight before and the morning of my run, thanks in part to the most rain we had gotten in 128 days. Woohoo! So I got to add some wet and cold running challenges to my list of problem-solving that I’d tackle during my run.

Overall, though, my training had gone well, and I had spent enough time planning and prepping that I felt relatively confident. Mostly, confident that no matter how well or long I trained, it was going to hurt. All over. For what felt like forever, and then I still wouldn’t be anywhere near done. And confident that I had planned and prepped to the best of my ability, and that I could figure out how to tackle whatever situations I faced as they came.

How I felt before the race

Aside from having cabin fever from being inside (AQI was too hazardous to go out even with a mask), I felt fairly good in terms of running fitness. I had been tapering, my legs felt fresh, I was fueling and hydrating and everything felt fine. Unfortunately, though, while I managed to escape many taper niggles, I experienced a round of ovulation pain that I don’t get every month but was lucky enough to get this month, for the 3 days prior to my race. (I’m not sure why, but in the last few years after never experiencing ovulation pain, I have started to get ovulation pain similar to period pain and cramps and general icky feelings. My doctor isn’t concerned about it, but it’s unfun, and in this case poorly timed.) So I was a bit grumpy about going into my race in a less-than-perfect state, even though “perfect” state is an ideal and usually there is something wrong, whether it’s a taper niggle or something else.

The thing I was most pleased about was my feet. My broken toe had healed well and hadn’t been giving me any issues. However, after I broke my toe it changed my foot strike or how my feet move in my shoes in a way that caused epic blisters and then I kept getting blisters on top of blisters for several runs. I finally figured out that I needed to try something different, stopped causing new blisters, and the existing blisters healed, peeled off, and went away. So my feet were in great shape, and despite being nervous about the effect of the rain on my feet during my 100 miles, I at least was starting from a “clean slate” with healthy, non-blistered feet.

The start

I set my alarm and woke up and checked air quality. The winds and the start of the rain had blown it absolutely clear, so I was able to head out without a mask for the first time in weeks! (Last time I ran with it for all 8 hours of my long run, which is annoying when you need to fuel every 30 min.)

I wasn’t even a mile in when I had my first problem. I started with a long sleeve shirt and my rain jacket, knowing I’d warm up and want to take it off soon after I started. As I removed my arms from my rain jacket (keeping it zipped around my waist) and shuffled my arms in and out of my running vest, I suddenly felt water hit my feet and looked down. Water was gushing out of my hydration hose! I grabbed it and stuck my finger over the end: the bite valve had flown off somehow while I was getting out of my jacket. Ugh.

Luckily, though, this is where all of my planning and reading of others’ experiences had come in handy. While this had never happened to me, I had read in someone’s blog that this had happened and it took them 20 minutes to find the valve. I had a bright waistlamp and it was getting increasingly lighter outside as the sun rose, so I hoped mine would be easier to spot. I figured it was stuck in my rain jacket sleeve so I worked to check my sleeve and vest for the valve. No go. I looked around and didn’t see it. I turned and walked back a bit, looking for it on and off the trail. No luck. I finally pulled out my phone and called Scott, while still holding my finger over the hydration hose to keep it from leaking out 3 liters of water. While I talked to him and told him I probably needed him to get dressed and bike out a replacement valved to me, I turned around and walked forward again one more time. Aha! Found it. It had flown way to the left side of the trail. I replaced it and breathed a sigh of relief. It had added only 4 minutes to my first mile time.

Well, I thought: that’s one way to keep my early paces slow! I hung up with Scott, and carried on.

The first lap I was very focused on making sure my socks and shoes were in good shape. I am pretty good at gutting it out if I have blisters or foot issues, but that’s not a good strategy when you’re going to cover 99 more miles. So 6 miles into my first lap, I stopped at a bench, took my socks off, and re-lubricated my feet. Later on the way back (this first lap was an out-and-back), I stopped at mile 16 and similarly sat on a rock to re-lubricate and add lamb’s wool to reduce rubbing on the side of my foot.

A picture of Dana Lewis running down the rainy paved trail, with resupply gear (dry shoes, water, fuel) in the foreground of the picture. She's wearing shorts, a rain jacket, and a rain hat. She is smiling and around 12 miles into her eventual 82 mile run).

Yet overall, lap 1 went well. It started raining after about 20 minutes so I ran with my rain hat and rain jacket on (I put it on after my bite valve escapades at mile 1), and intermittently put my hood over my hat and took it off when the rain picked up or lessened, respectively. But it pretty much rained the whole time. Scott met me as planned after my turnaround spot (about 12 miles in) and refilled my hydration pack and I re-packed my vest with snacks, enzymes, and electrolytes and carried on.

At the end of lap 1 (almost 24 miles), I physically felt pretty decent. I had been working to focus on the lap I was in and what I needed to do for the next lap. Nothing else. No thoughts of how many miles I would run or hours it would take. My watch had stopped itself in the rain and canceled the run (argh), so I wasn’t going to have a running total of time throughout the entire run like I wanted. But this might have been a feature, as it kept me from using my watch for that and I set a new lap/run each time I headed out so I could keep an eye on the segment pace, even though I had no idea what the overall pace time really was.

A paved trail picture taken from on the trail. Trees and a river are to the left; more trees line the trail to the right. It is very cloudy, the trail is visibly wet.I went slow the first lap (part of why I was feeling so strong), and I took my time in between laps. I pulled off my socks and shoes. I used hand sanitizer on them to draw some of the water out, then re-lubricated and added Desitin (to continue to help draw water out of my feet and aid in preventing blisters). Then I put on a fresh pair of toe socks and added more lamb’s wool in between key toes that typically are blister-prone. At this stage I had no blisters, and other than wet soggy feet was in good shape! Sitting for 10 minutes for my sock and foot care change chilled me, though, and I was happy to start moving again and warm back up.

The middle

I headed out on lap 2, which similarly went well. This was my “triangle” shaped loop/lap. The only issue I had this lap was that it was the only section of my route where the trail crossed 3 small intersections. Two had lights but one did not. At the intersection without a light, there were no cars so I continued running across the pedestrian crossing. As I stepped out I saw a car whipping around the corner with their head turned looking for cars in the opposite direction. Not sure if they would turn in time to see me, I slammed on my physical brakes. They did turn and see me and stopped in plenty of time, so I continued across the crossing and on the trail. However, that had tweaked my right ankle and it felt sore and weak. Argh. It felt better after a few more minutes, but it intermittently (once every hour or so) would feel weak and sore throughout the rest of my run as a result.

After lap 2, I again sat to remove my socks and shoes, dry my feet, put hand sanitizer on them, re-lubricate, etc. My feet were definitely wet and wrinkly, so I added even more Desitin to my feet. It wasn’t raining super hard but it was a constant hard drizzle that was soaking through to my socks and feet even though there weren’t many puddles (yet). This time, though, I used some reusable hot packs while I sat to change shoes, so I wasn’t as chilled when I left.

Lap 3 (back to an out-and-back route) also went well, and I was starting to realize that I was in surprisingly good physical shape. My feet were intermittently a little bit sore from pounding the ground for hours, but they weren’t constantly annoying like I’ve had on some training runs. I had long surpassed my longest running distance (previously 32 miles; at the end of lap 3 I would reach 52 miles) and longest ever running time. I did develop one or two small blisters, but they didn’t bother me. Usually, I build up huge blisters and they’re a constant annoyance. During my race, maybe thanks to the Desitin etc, I only noticed the blisters (which were fairly tiny) when they popped themselves. I had one on each foot pop and sting for a minute and then not bother me again, which was pleasant! Lap 3 was also when it got dark, so I’d headed out with my double waist lamp. I have two sets of two waist lamps that we strapped to each other; I turn one on and run it out (somewhere around ~3 hours) and then turn the belt around and turn the other lamp on. This lasts me the longest laps I have, even if I was going at walking speed. It’s plenty of light for the paved trail even on the darkest nights, but because it was raining it was cloudy and the city’s light pollution reflected off the clouds so that trail itself was easy to see! So while I only saw a few stars at the end of the night in between patches of cloud, for most of the night the night-running aspects were pretty easy. Dana sits on a bench at a picnic table in a public park. It is dark. She is wearing long rain pants, a rain jacket, and a rain hat and is bent over her bare feet, applying lubrication. It is dark and nighttime, so she has an extra waistlamp on the table illuminating her feet. Other ultrarunning supplies are strewn across the table.

Interestingly regarding my feet, after lap 3 they were still white and wrinkly a bit, but they were definitely drying out. They were much drier than they had been after lap 2, so the combination of hand sanitizer and Desitin was working. I was pleased, and again slathered with more lubricant and Desitin before putting on fresh socks and heading back out for lap 4, which would be a repeat of my “triangle” lap.

Physically, I was mostly ok. My feet weren’t hurting. I had expected my IT bands to get tight and bother my right knee and for my hips and back to start getting sore: my left knee did intermittently hurt some, but it was like a 3/10 annoyance and came and went. Stretching my hip flexors didn’t change the tightness of my IT band, but it was also the least amount of knee pain I’ve ever had when things got tight, so it was very manageable and I didn’t stress about it. It was hard to believe that with the completion of this lap (lap 4) that I’d have finished a 100k (62 miles) and added a few miles to it!

It seemed like the triangle loop wanted to keep things interesting, though. On Lap 4, after I had turned off into the section that has the intersections and the “triangle” part of the loop, my hydration hose made a gurgling noise. I felt the back of my hydration pack, which was rock solid with ice…but no water left. Oops, I thought. I was at mile 6 out of 13. If I kept going forward on my route, it would take me an estimated 4+ miles to get back to the next water fountain. Or I could call and wake up Scott, who had just fallen asleep for his first 2 hour nap overnight (it was around 1am by now), to bring me water, but that would take him 20-30 minutes before reaching me.

It mattered that I didn’t have water. Not just in terms of thirst and hydration, but I also needed water to be able to swallow my electrolyte pills (every 45 minutes) and my fuel (every 30 minutes when I ate a snack) and the digestive enzymes I absolutely require to digest my food since I have EPI. I definitely needed water so that my hydration, fueling, electrolytes, etc. wouldn’t suffer.

I could go back, but I hated to backtrack. It would be a mile back to the previous water fountain, although I wasn’t even sure it would be turned on and working. Mentally, though, I groaned at the thought of “turning around” and finishing the loop in reverse and trying to figure out how many miles I would cut off that loop and how many I’d have to added to my very last loop to make up for it.

Luckily, I realized a better idea. Because I was on the section of the triangle running alongside a road (hence the annoying intersection crossings), the intersections are where the road turned off into various parking lots. Across the road at one of the two intersections with lights was a gas station! I could see it glowing from a quarter of a mile away. I crossed my fingers hoping it would still be open, because I could go inside and buy a bottle of water to hold me over. It was open! I crossed the intersection and went in, grabbed a liter of water, bought it, went outside, and refilled my hydration bladder under the bright lights of the gas station.

A 1-liter wattle bottle held in a hand covered with a blue nitrile gloves.
I’m wearing nitrile gloves to help keep my hands drier and warmer given the cold, endless rain.

I was pretty proud of that solution, especially because it was ~1am and I had been running for 17 hours and was able to troubleshoot and solve that problem on the fly! Without sending it, I also drafted a text to send to Scott near the end of that loop when he’d be awake, to list out which foods and gear I wanted at the next refuel, and to specify what happened and how I solved it and request that I get more water and less ice for the next loop.

(Running out of water was on my list of things I planned for in all of my preparation, so while I had low expectations of my mental capacity as the miles piled up, that likely helped because I had mentally listed out where all the available water fountains were, so I could run my loop mentally forward and backward to figure out where the closest one was. In this case it was a mile behind me; going forward it would have been 4+ miles or more than an hour away. The gas station ended up being 15 minutes from where I realized I was out of water).

Finishing lap 4 was exciting, because I only had 3 laps left to go! I had one more out and back loop, and my father-in-law was driving down in the wee hours of the morning to run part of it with me to keep me company. We hadn’t planned on that all along, but he and Scott had been texting and working it out, so Scott just told me that was the plan and I was thrilled. I was a little bit tired overall, but more energetic than I thought.

The sock change before lap 5 was disappointing, though. After lap 3, my feet had been drying out a little bit. Now after lap 4 they were wet and soft again, like they were after lap 2. The rain had been more constant. I took the time (15-20 min) I needed to dry and treat them with hand sanitizer, lubricant, Desitin, replace fresh toe socks and lambs wool and dry shoes. They weren’t hurting, so I was hoping the light rain would taper off and my feet would dry out again.

The (beginning of the) end

I headed out on to lap 5, buoyed by the thought that I only had ~4 miles ‘til I had company. The rain picked up again (argh) and as my father-in-law met me on the trail with his headlamp and rain gear, he asked if it had been raining this much the whole time. No, I said, and pointed out that it had only been raining hard in 10-20 minute chunks and this one had been going since before I met him so it should lighten up soon. He commented on how energetic and chatty I was. “You’re pretty chatty,” he said, “for 5am!” (I am well-known in both our families for NOT being a morning person). I joked about how impressive it was for me being this chatty not only at 5am but also for it being 22 hours into my run!

Unfortunately, 3 miles into the section he ran with me, it went from annoying hard drizzle to an epic mega downpour. My shoes went from damp from constant hard drizzle to super soaked from top all the way down to the insoles squishing with every step. I was frustrated, because this much rain was also making it hard to use my phone. My phone had an alarm going off every 30 minutes to remind me to fuel; I needed to pull out my phone each time and turn off the very loud alarm (it was effective!) and then open up my spreadsheet and enter what I ate and what electrolytes I took. Then I also had to pull the baggie out of my vest pocket, select out the number of enzyme pills I needed with wet and cold gloved fingers, re-seal the baggie and put it back in my vest, and get out the fuel from the other pocket of my vest and eat it. Even tired, I was managing to fuel successfully and stay on top of my schedule. I was increasingly proud of this.

But the rain and the inability to use my phone when I wanted to was starting to irritate me, in part likely because I was trying not to stress about what the volume of water was doing to my feet. They weren’t actively hurting, but I knew this much water for this long of time could be dangerous and I needed to be careful. It was still downpouring when we reached the turnaround and headed back to his car. I dropped him off at his car and carried on. I was tired, soaked, cold, but physically in great shape otherwise in terms of legs, knees, hips, back etc all holding up and not feeling like i had run ~78+ miles at that point!

I had just eaten another snack and went to press buttons on my pump to give myself some insulin for the snack. It didn’t seem to work. I have a vibration pattern so I can use the pump without seeing it; but the “enter” button was not working. I had been concerned about the volume of water my pump was going to be exposed to and mentally prepared for that, but it was SO disheartening to suddenly feel the pattern of 6+ vibrations followed by an audio beep indicating an error state had been reached on the pump. I cursed to myself, out in the rain after 24 hours of running, knowing what I would find when I pulled my pump out from under my jacket. Sure enough, “button error”, because water had gotten under the buttons and to protect itself, the pump went into a “I won’t do anything” state. That meant that the insulin I needed for my latest snack wasn’t going to happen and any future insulin wasn’t going to happen.

I pulled out my phone and started a text to Scott, explaining that I had a button error and needed him to pull out my backup pump. I told him where it was, told him to put in a new battery and program it with the basal rate that I wanted. I then sent a text saying it was raining a lot and it would be easier if he called me if he needed to talk, because it was so hard to use my phone in the rain. He read the text so I knew he was awake, so I called him and talked to him while I trudged on and he was getting dressed and packing up my replacement pump and the gear I needed for lap 6. Then we hung up and I carried on, grumbling along the way and starting to feel the physical effects of not having enough insulin for the past hour or so.

A picture of a glucose graph from a CGM. The dots are flat in the first hour of the screenshot, then slowly and almost exactly lineary head up and to the right.

My blood glucose levels were rising, but I wasn’t worried about that. I knew once I had replacement insulin my blood sugars would come down nicely. I had prepared for this; there was a “high BG” baggie with supplies ready to go! But the combination of the 25+ hours of rain, the extra hard rain and cold temps from the last several hours, my feet starting to be bothered from the wet soaking, and then on top of it all the chemical feeling of not having insulin going in my body: it was a lot. I really focused on the physical state I was in, evaluating what I wanted to do. I knew that I could fix the cold state (switch to dry clothes; use hot packs) and my blood sugars (new replacement pump, take some inhalable insulin for a faster fix while the new pump insulin would be kicking in within an hour and fixed from there). But my feet were starting to bother me in a way that I wasn’t sure could be fixed with a 20 minute sock change.

Scott biked up to me right as I passed my favorite trail bathroom, the stalwart of my ultra, and had me turn around and head in there to be out of the rain. It was clean, big, had toilet paper, and was well lit and had the door open (wasn’t locked) all night long. I stepped inside the bathroom while Scott parked his bike by the building and whipped out the baggie with the replacement pump. I checked that no one else was in the women’s bathroom and he stepped inside, and impressively (to me) pulled out the baggie that held a garbage bag. I had packed it so I could more easily change clothes in public bathrooms by standing on it and placing my clothes on it so they wouldn’t be on the ground. He instead laid the garbage bag on top of the garbage can lid and set out my dry clothes, helped me out of my wet soaked rain jacket, hat, and shirts, and handed me my dry shirts followed by some hot packs. He gave me a giant one and told me to stuff it down my shirt, which I did. I took some inhalable insulin (which hits in about 15 minutes), then held the smaller hot packs in my hands while he was pulling out the bag with my replacement pump. I rewound and primed the pump with my existing reservoir and tubing, then reconnected it to my pump site and primed it. That problem (lack of insulin) was now solved, and I knew that my blood glucose would come back down to target over the next hour.

Next up, I could walk/run (or walk) the remaining 1.5 miles back to my normal turn around point, which was a table under a park awning that was relatively dry. I knew that I needed to be warmer and stay dry, and although I had dry clothes on now, I wasn’t sure that sitting outside even with hot packs while I tried to address my feet would warm me up. I told Scott that I wanted to go back to the house (thinking I’d walk the ~1.5 miles to the house). Then I could dry out my feet, get warm, and go back out if I wanted to continue. But I had a hunch I didn’t want to continue. My feet were feeling like they were getting to be in a not-good state from the level of water they had retained after 25 hours, despite all the excellent foot care.

I thought about it and realized that I was satisfied with running 82 miles. I was in otherwise decent physical shape and energy, I had been nailing my electrolytes and fueling and blood sugars the entire run. I had successfully run overnight; more than 24 hours; and by far (2.6x) the longest distance I had ever run. I could keep running to 100 miles (about 18 more miles), but no one cared if I did. I didn’t have to prove anything to anyone, including myself. I had planned, strategized, and executed above and beyond what I had thought was possible, both in terms of physical and mental performance. I had no major injuries, and I wanted to keep it that way. I knew I had the willpower and persistence to keep going; I was stubborn enough to do it; but as the last bit of icing on top of my ultramarathon cake, I wanted to have the mental strength to decide to stop where I was so I wouldn’t create a long-lasting injury in the last 18 miles from sheer stubbornness.

So I stopped. I told Scott I would decide for sure after I got home and dried off and warmed up, but that I was pretty sure this would be a stop and not just a pause. Rather than let me walk home in the rain, he insisted I stay in the warm dry bathroom while he biked home and got the car and brought it to the nearest trail entrance, which was about a quarter of a mile away (more good planning on my part!). Once he had gotten in the car and called me, I slowly walked out to meet him at the parking lot, reaching it right as he pulled in. The walk on my feet confirmed to me that they were done. They weren’t exceptionally blistered or injured, but I knew the cumulative water effect and soggy skin would likely lead to some damage if I continued on them. We headed home. I sat down and took off my socks and shoes and sure enough, my feet were wet, white, and very wrinkly and starting to crease. I took a hot shower then dried off, put hand sanitizer on my feet to help dry them out, and laid down with them sticking out of the covers to help them air out. Within a few hours, they had dried out, and showed me some blisters on the bottom of my right foot that were not really bad, but if I had kept going on them, the wet wrinkly tissue would’ve been very prone to more extreme damage. I reflected on the choice to stop and was still happy with my decision.

The 24 hours after I ran 82 miles

After my shower and laying down, I realized that I was (still) in great physical shape. Some parts of me were starting to stiffen up now that I had stopped, but they hadn’t bothered me at all during running. That was my hips that now hurt if I tried to lay on my side but not on my front or my back; and my thighs felt sore when I straightened and bent my legs. I had never even been tempted during my run to take pain meds because I was never overly sore and didn’t have any injuries.

(Note: you shouldn’t take NSAIDs during extreme events due to the risks of overworked kidneys having problems. I had packed Tylenol, which is acetaminophen, in case I needed it for pain management, but specifically did not pack any oral NSAIDs and warned Scott about offering me any. I did pack topical NSAID *gel* which is an extremely low quantity of NSAID compared to even one oral NSAID pill, and I used that once on my shoulder blades during the run. After my run, I waited several hours and made sure my kidneys were fine via hydration before I took any NSAID.)

It is very surprising to me that despite my longest training runs being almost a third of the distance I did, that I ended up in better physical shape at the end than I did during some training runs! This is probably in part due to going even slower (as planned) during my ultra, but I was really pleased. It might have also been due to the fact that I mentally trained for it to hurt really bad and to continue anyway. Again, lots of mental training and prep.

I ended up napping 2 hours after I got home and showered, and then was awake a few more hours and took another one hour nap. I ate several small meals throughout the day and stayed in bed to rest and not stress my feet further, then went to sleep at a normal bedtime and managed to sleep 9.5 hours through the night. Woohoo! I really wasn’t expecting that. I did wake up many times and find myself bending and flexing my knees or my ankles to help me roll over and could feel them being sore, but it wasn’t painful enough to fully wake me up or keep me from falling back to asleep within seconds, so it felt like a fully rested un-broken night of sleep.

The bottoms of my feet felt weird as they dried out, but progressively felt better and felt close to normal (normal meaning as normal as you are with a routine blister on the bottom of your forefoot) by the time I woke up the next morning (24 hours after ending my run). Everything that stiffened up in the first few hours after I stop has been gradually loosening up, so other than my forefeet still being sensitive with blisters, I’m walking around normally again.

The good, the bad, the ugly, and what I wish I had done differently

I had prepared for so much to go wrong, both those things in my control and things out of my control. And I think that’s why it actually didn’t hurt as much or go as wrong as it could have, despite all the variables in play. I nailed my pacing plan, energy levels, hydration levels, fueling intake, electrolyte intake, and enzyme intake.

I had estimated that I would need to take up to ~160 enzymes to cover my fueling. Remember that I stopped at ~25 hours (82 miles) instead of ~32 hours (100 miles) so I took less than that, but still a lot.

I consumed 50 (fifty!!!) snacks, one every 30 minutes, and swallowed multiple enzyme pills each time. I consumed at least 98 enzyme pills (!!!) in this 25 hour time period. I was concerned that my body wouldn’t be able to digest the pills or have some other issue with them, because I have never taken anywhere near this number of pills in a single day. But, it worked, and flawlessly: I had ZERO EPI-related issues and ZERO other gastrointestinal (GI) symptoms. GI symptoms are super common in ultras, even for people without things like EPI, so I’m incredibly thrilled with how well my planning and practicing paid off so I could execute my fueling plan and not have any issues.

My goal had been to take in ~250 calories per hour and ~500 mg of sodium per hour (from both the snacks every 30 min and electrolyte pills every 45 min). I use calories as my rolling metric because while most ultrarunners prioritize carbs, I’m running slower and likely more fat adapted than most people, and also need digestive enzymes no matter what I’m eating so taking small amounts of fat and protein are fine for me. Plus it makes for more interesting running snacks. So using calories as the global running metric of consumption rather than just carbs or fat etc. works for me. I nailed it, and across all 25 hours of my run I averaged 671 mg of sodium per hour and 279 calories per hour. I did have one hour where I somehow dropped low on sodium and felt it, and took an extra electrolyte pill to help catch up. It fixed the “low on sodium” feeling and I didn’t have any issues again. I had slightly more variability toward the end of the run, but that’s just due to the timing of when I logged it into my spreadsheet (due to the wet-phone issues I described earlier) and the auto-calculation on which hour it falls into; overall I still was maintaining the goal levels every hour.

A graph of calorie consumption, sodium consumption, and carb consumption per hour for all 25 hours of the 82 mile run.

(The purple dotted line is carbs, because I was curious about how that level fluctuated given that I didn’t prioritize my run snacks based on carbs at all. I generally seek <20 grams of carbs per snack but have a few that are closer to 30 grams; otherwise <10 or so grams of fat and however many grams of protein I don’t care).

How do I have all this data? I used my macronutrient spreadsheet as I went, selecting the snack I was going to eat from the drop-down list that then pre-populated the rest of the data in the sheet and updated a pivot table that summarized my rolling totals per hour. It was getting increasingly hard to use my phone in the mega downpour rain in the last few hours, which is why the timing of logging them was a little variable and the numbers look a little more bouncy each hour toward the end, but my consumption was still on time thanks to my every 30 minute phone alarms and so the logging was the only thing that varied and I was still above-goal overall although trending downward slightly.

This spreadsheet means I can also summarize my total consumption across 25 hours: I consumed an eye-popping 817 grams of carbs; 365 grams of fat; 136 grams of protein; 16,775 mg of sodium; and 6,979 total calories. That matched the 98+ enzyme pills (and 33 electrolyte pills, which are 210 mg of sodium each and reflected in the overall sodium counts), so I also swallowed >131 pills in the 25 hour time period running. Wow.

It’s common to end up in a calorie deficit due to the hours and miles that an ultra demand of your body, but my watch estimates I burned around 8,000+ calories (maybe an undercount since it stopped itself a few times), so I didn’t have as big of a deficit as I had originally predicted.

There were so many (50!) opportunities to mess up my digestion, and I didn’t mess up once. I’m really proud of that! I also had such a variety of snack types and textures that even though I was never really hungry, I ate my snacks like clock work and didn’t get major palate fatigue or get to the point that I wanted to stop chewing and needed to switch to my backup list of liquid fuel. The only time I slightly felt off was when I did a Snickers for one snack at the end of my lap and then my next snack was hot mashed potatoes – combined, that was 390 calories (one of my top two hours of calorie consumption) and felt like a little too much food, either because of the calories or the volume of mashed potatoes. It was only a minor annoyance, though, and the feeling passed within another 15 minutes and I didn’t have issues with any other combination of snacks. I did get tired of peanut butter pretzel nuggets, because they’re drier than many of my other snacks and took a lot of water to swallow. So I stopped choosing those in lieu of my other snacks and left those as emergency backups.

Looking back, I wish I could have done something differently about my feet, but I don’t think there’s anything else I could have done. I changed socks and into dry shoes at every single lap. I dried them and tried to draw out water with hand sanitizer and Desitin. I lubricated with Squirrel Nut Butter and Desitin, and overall came out with very few blisters compared to my typical shorter long runs (e.g. 25-30 miles). But we did get 0.72 inches of rain in that 24 hour period, and a lot of it was dumped onto my feet in the 4-7am time period. If I’d had a way of knowing 24 hours in advance exactly when the rain was going to let up with enough confidence to delay the run for a day, it turns out it would’ve been drier, but the forecast before I started running was for similar chances of rain all weekend. The laws of feet physics and the timing was just not good, and that was out of my control. I’ll keep researching other strategies for wet feet management, but I think I had done everything I could, did it well, and it just was what it was.

Overall, I can’t think of anything else I would have changed (other than my training, it would have been swell not to have broken my toe and been not weight bearing for 6 weeks!). Fueling, electrolytes, enzymes, blood sugars, pacing, mental game: flawless. I was even picking up the pace and still running and walking 30:90 second intervals, and I think I would have continued to pick up the pace and pushed it to the finish, estimating that I would have come in under 32 hours overall for 100 miles (around a 19 min/mi average pace overall, or a bit under that).

But I chose to stop at 82 miles, and being willing to do that was a huge mental PR, too.

So I’m pleased, proud, and thrilled to have run an 82 mile ultramarathon, and physically and mentally feel better than I would have predicted would be possible after 24 hours.

What it feels like to run (almost) a 100 mile ultramarathon, by Dana M. Lewis on DIYPS.org

How To Prepare Or Plan For A 100 Mile Ultramarathon (Or Similarly Long Ultra Run)

As I prepared for months for my first-ever 100 mile run, I did a lot of research to figure out how I should be prepared. There’s no one way to “prepare” for an ultramarathon of any distance, and much of the stuff online is about your training plan and physical preparations. Which is definitely important, but not the only thing that needs preparation.

After a lot of reading, thinking about my own plans and preparation, I’ve realized there are 4 general types of preparation for an ultramarathon that I’ve been doing: mental preparation and training; nutrition preparation and training; race day strategy preparation; and the actual physical training and running to prepare for an ultramarathon.

Usually, blog posts either cover the last category (training plans and physical training philosophies) or one of the other categories. This blog post summarizes everything I’ve done in all of these categories together in one place – in part to help me if I ever run another ultra following my first 100 mile attempt!

Almost everything I thought about and planned for a 100 mile ultramarathon, by Dana M. Lewis on DIYPS.org
  1. Mental preparation and training

It’s commonly said online that running 100 miles (or most ultra distances) is 80% mental and only 20% physical. (Or similar splits like 90/10). This is in part because it is not feasible to physically train to run the distance prior to your race (usually); and the first time you tackle a new distance, you always have many (often dozens!) of miles of distance that you’ve never covered before. It’s going to be uncomfortable, and you have to plan for that. Thus, mental preparation and training as much as possible to be prepared to deal with these challenges.

The first major aspect of this, for me, is practicing and reminding my brain how to process and work through discomfort. Discomfort is distinct from pain and being injured. (Pain and an injury should include evaluating whether you should cease your activity.) I’ve fortunately (and unfortunately) had recent experiences of pain when I broke my toe. Returning to walking and then running involved some discomfort as my body got used to covering miles again. It was a very distinct feeling that was not easily confused with pain from a broken bone, which to me feels like an “electrical” type of feeling.

This recent experience with pain is easy to differentiate from the discomfort of running long distances and being tired and sore. I’m working to capture these thoughts when I have them, and transition from “I’m tired and this hurts and this is terrible” during training runs and convert these thought patterns to “I’m tired and uncomfortable. But this is not pain; this is discomfort. This is how I’m going to feel at mile 34 or 57 or the back half of my 100M, and I’m going to keep running then and I’m going to keep running now to practice this feeling.” I want to register and save this feeling and mental state for what it’ll feel like during my 100M, so it’s easier to pull that out when I’m exhausted and uncomfortable at 3am and still likely have another 40-50 miles to go.

Similarly, I also try to envision different scenarios that I will experience in my “race” or 100 mile experience. In my case, I plan to run on a paved trail for a solo endeavor (DIY or self-organized, rather than an organized race with other people). Some of the scenarios I am expecting to experience and deal with include:

  • I will be running a course with 7 “laps” or loops of various lengths. This involves me coming back to the same point seven times so that I can get re-fueled by my crew (my husband), change clothes if needed, etc. I envision coming in for my second or third lap, having to turn around to head back out for another (but not my last) lap and not wanting to leave.
    • How I planned to deal with this scenario: I’ve written down crew instructions for my husband, which include how to refuel and replenish my supplies; a list of troubleshooting scenarios and supplies; but also specific things that would be constructive to say to me. In this instance, any of the following:
      • You are strong and you can do this.
      • You only have to do the current lap.
      • Walk as much as you need to.
  • This 100M will be one of the first times (other than a training run where I practice the transition) running all day and into the the night. I’m a little apprehensive about this idea of running for 14 hours in the dark (due to the time of year). Partially, this is because I’ve never run 14 hours before, and I’ll be doing it after already having run for 10 or so hours! And because I’m not as experienced running in the dark.
    • How I planned to deal with this scenario: I have a clear set of “day to night” transition supplies and instructions to gear up for the night. I will be equipped with reflective components on my vest; a bright colored shirt; a waist lamp; a head lamp; a blinky red light on the back of my vest. I will focus on getting geared up and recognizing that it’s a mental transition as well as a physical gear transition. I will also try to think about the novelty and adventure aspects of running through the night. It’ll probably be wet and cloudy – but it might clear up in patches enough to see some stars! And – the running through the night is something I didn’t think I could do, which is actually why I’m doing a 100M, to prove to myself that I can do anything I want to set my mind to. This is the purpose of being out here, and it’s a necessary part of achieving 100M.
  • At some point, most people do a lot of walking. I’m fairly unique in my “running” approach – I run/walk from the start, and also not like many people run/walk. In ultras, most folks walk every X minutes or when they reach hills. I consistently run/walk with 30s of running, then 60s or 90s of walking – from the very start. These are short intervals, but it’s what works well for me. But like everyone else, regardless of initial strategy, I expect there will be a time where it might be more efficient to try a brisk, consistent walk for a few minutes (or miles!), or a slow slog (inefficient walk) because that’s all I can convince myself to do.
    • How I planned to deal with this scenario: The goal is forward motion, however I can move. Walking is ok, and expected – and I will remind myself of that. I know there is a crossover point when running speed slows down to a certain degree and running becomes as efficient at a certain point. I also know these points, speeds, and effort levels will change throughout my 100M. It helps that I’m already a proactive walker; I have no shame, guilt, or hangups related to walking because it’s ½ or ⅔ of my forward motion strategy from the start! But I will remind myself that my plans for intervals can change and I can experiment to see what feels good throughout.
  • It’s possible that I could trip and fall, especially as I get tired and scuffle my feet on the trail, even though I’m on the paved trail. I also might get swooped by an owl or startled by something which causes me to trip and fall unexpectedly.
    • How I planned to deal with this scenario: I’ve got my safety plan in place (more on that below) and know I will first while on the ground disable the alarm on my watch so it does not call 911 (assuming this doesn’t appear to be needed). I will move my body to see if I’m just sore or if there are any scrapes or injuries that need addressing. I will stand up if possible, continuing to check myself out. I will slowly walk, if possible, and see how I feel. I’ll also probably call and let my husband know, and either ask him to come meet me earlier than expected that lap or just let him know so he can check on me when we meet up as planned. I will let myself walk any soreness off for a while (and turn off my interval alerts) before resuming a planned run/walk strategy.

So these are some of the scenarios I’m envisioning dealing with and my plans for them, with the hope and expectation that my brain will be better equipped to deal with them as a result of thinking about them in advance.

Depending on your race/route/plans, you might need to add other types of scenarios – such as leaving the aid station with warmth and light before heading into the night; or what to do if your crew doesn’t show up as planned; or your drop bag gets soaked with water; or the aid station is out of supplies or there is no one where you expect an aid station.

The other part of my mental preparation is a lot of pre-problem solving. Similar to the above scenarios, I have thought through what I need to do for the following:

  • I drop my fuel, enzymes, or electrolytes and can’t find them.
    • How I planned to deal with this scenario: I will call or text my husband and adjust plans for where he meets me. I will use the backup fuel supplies in my pack as needed to tide me over. (For my race, I have fuel in individual baggies and separated out for each “lap” or segment, plus extras and backups, so my husband can grab the backup bag or the next lap bag and bring it to me.)
  • I run out of water.
    • How I planned to deal with this scenario: There are 3-4 water fountains along or nearby my planned run route, and I can re-fill my hydration bladder within ~3 miles from any spot on the trail. I can also again call my husband and have him meet me sooner to re-fill my hydration pack.
  • My stomach gets upset.
    • How I planned to deal with this scenario: I have supplies (such as Immodium, GasX, Tums, etc) in my running pack that I can use. I also have more supplies laid out at home that I can ask my husband to bring.
  • I don’t feel like eating.
    • How I planned to deal with this scenario: I included this on the list because I read that it happens to a lot of people. But, as a person with type 1 diabetes…I have 20 years of practice of consuming sugar or food when my blood sugar is dropping or low, even when I’m not hungry. I have also practiced consistently fueling throughout my long runs, and I am used to eating when not hungry. I expect it is more likely that I will get tired of certain textures, so I have planned out my fuel so that “harder to chew” or crunchy foods that might hurt my mouth are the snacks I eat earlier, and then eat softer snacks or snacks that require less chewing later in the run. I also have a variety of backups that include different textures and some liquid options that I can substitute for my planned fuel.
  • Other scenarios I’ve pre-problem-solved are getting blisters or sore spots on my feet; chafing; getting low on sodium/electrolytes; muscles hurting on other parts of my body other than my feet; having feet that swell; getting itchy or having other types of allergic reactions; having trouble breathing; my eyes hurting; being really tired; being hot or cold or wet; my blood sugar staying higher or lower for a longer period of time; and mentally feeling “low” and unmotivated and wavering in the pursuit of my goal.
    • How I planned to deal with this scenario: As part of the ‘crew instruction’ list I’ve made for my husband, I have listed out all the supplies I have to address these categories. I will also have all of these supplies grouped and set out at home. My husband is awesome at troubleshooting problems in general, but he’ll also be tired at 2 am after only sleeping for 2 hours (plus I will be tired), so I created this to help me prep all the gear but also when I tell him “I’m ____”, he can offer the requisite supplies to address the problem without me having to try to figure out what my options are and decide what to do. All of this is to help mitigate the decision fatigue I will have and the overall fatigue he will have.
    • Note: I’ve also previously read a really good tip about managing decision fatigue. Tell your crew – in my case I’ve told my husband and written it onto the crew sheet – not to ask open-ended question, but to offer specific suggestions or options. For example, say “Do you want 2 or 2.5 liters of water in your hydration pack?” instead of “How much water do you want?”. For refilling my snacks, I’ve told my husband to refill my snack pack from the pre-filled bags, but the bag also has a sticky note about grabbing fresh prepared food. I told him to specifically ask “Do you want your waffle; sweet potato tots; mashed potatoes; or” (whatever is on my list of pre-prepared food for him to make and bring), instead of “What do you want?”

A lot of these I put on my list to think about based on race reports I’ve read from other people, that covers what they experienced (e.g. feet swelling and finding it helpful to have a half size bigger shoe to change into) and how they troubleshot things during the race while in between or at aid stations.

Some of my favorite race reports/blogs that I’ve learned a lot from include Rebecca Walker’s race reports; Wes Plate’s race recaps; Debbie Norman’s race reports (check out her sample crew sheet in that linked post); Bob Hearn’s thoughtfulness around pacing and walk strategy; and Sarah Lavender Smith’s race reports.

I have learned quite a bit and improved my planning and preparation by reading race reports of DNFs and also of finished races of different lengths. The longer the race, the more challenges there are and the more time to learn and sort them out. So that’s why I appreciate reading Wes’s multi day (eg 240 mile) recaps as well as 100 mile race reports, even though my focus has been on 50ks previously and now “just” a 100M.

One other thing I’ve thought about is the importance of knowing what your criteria for quitting/stopping/DNFing. For me this links back to discomfort versus pain. An injury should involve stopping temporarily and maybe permanently. But being tired, sore, uncomfortable – for me those should not qualify as reasons to stop. My goal is not to stop before 100 miles unless I have an actual injury (eg broken toe level pain).

2. Nutrition preparation and training

Yes, it’s worth “training” your nutrition. This means training your body by practicing fueling with the same foods and strategies as you want to use on your race. There’s a mantra of “nothing new on race day” that is both useful and not applicable to ultrarunning. In general, a lot of ultrarunners seem to do well (per my above search through many race reports) with eating small portions of “whatever looks good” at aid stations. If it looks good, their body is probably going to deal with it ok. But not always. And a lot of time people will bring fuel and rely on things they haven’t tested on their long runs prior to race day. Don’t be that person!

  • Test your fueling options and strategy (e.g. timing of fueling) on most runs, not just your very longest runs. For me, I do fuel for any runs of 2 hours or longer, because that correlates with when I bother to bring hydration and therefore also bring fuel. (That’s 8 miles for me at an average 15min/mile pace). Some folks use 1 hour or an hour and a half as their cutoff. But the point is – don’t just test your fuel on 6 hour runs. Fueling on shorter runs helps those runs feel better; you’ll likely recover from those runs more quickly; and it helps your body practice with those fueling options. You don’t want to find out at hour 8 of your 36 hour race that your body doesn’t do well with ___. It’s better to find that out at hour 3 of a 4 hour run, or similar.
  • Create your list of fuel that works for you. This should be based on your preferences but also how it helps you meet your fueling goals. When you have an idea for a new fuel, make sure you take it on your next run and try it. If you’re like me, you might want to try it near the end of your run, just in case your body doesn’t like it while running. If your body doesn’t like it, cross it off your list. You don’t want to be hauling or trying to eat food you know your body doesn’t like during a 100 mile run! I’ve found some things that I like to eat and found tasty fresh out of the oven – like ½ of a GF banana bread muffin – felt terrible in my mouth during runs. Some combination of the dry muffin (vs. freshly moist out of the oven) and the taste was not ideal for me. I ate it, and didn’t have GI distress, but I got home and promptly moved the remaining half portioned muffin baggies to my husband’s section of the fridge/freezer where my snack rejects go, and crossed it off my list. If it doesn’t bring you joy, or if it makes your brain cranky, it’s probably not a food you want for your ultra.
  • Don’t feel like there is a “wrong” food, as long as it’s something that’s not going to spoil easy or melt or be too hard to eat on the go. Look at snacks and meals you like to eat; is there a serving size or a variation that you like to eat? If so, try it! People eat all sorts of things in ultras, from puréed fruits and vegetables like applesauce or baby food pouches, to candy and chips to hamburgers and soup. Walk the store aisles (physically or virtually) and get ideas for food to try. But don’t limit yourself to sports “products” like blocks, gels, gu, drink mix, and similar. You’d be surprised about the variety of food that is portable, and in individual portions is close to the same macronutrients (calories, carbs, fat or protein, sodium, etc) as more expensive sports products. A lot of time you are paying for convenience and a certain texture/delivery method. But you can achieve the same intake of macronutrients through a variety of foods and beverages.
  • Some people stick with 1-2 foods or fuel sources (like liquid calorie/electrolyte solutions or gels/gu/blocks), but get tired of the sweet taste or the taste/texture of what they’re eating. Having a variety can help with this. Make your list, and for each run make sure you’re working through trying out and approving or removing the foods that you want to use during your race. Ideally, try them 1-2 times before your big run.
  • If you can, practice with some of the aid station type food including warm food (eg quesadilla or burger or whatever). Have someone meet you on longest runs with this freshly prepared, or take it with you and eat it for your first fuel. (Watch out for food spoiling/going bad – I always eat the hot/fresh prepared stuff first out of my set of fuel options when I get my pack refueled, to reduce the chance of bacteria growing or the food otherwise spoiling.) This is harder to do and may not be possible, but it could help expand your options for what you’re willing to take at aid stations if you’ve tested a version of a similar food before during a training run.
  • More planning ahead on nutrition for race day and training runs: figure out your timing of nutrition strategy and how many snacks or how much fuel (liquid or otherwise) you need to consume each hour or segment or between aid station. Pre-portion your fuel/snacks and if possible, label them. Plans can change and you can adapt on the fly, but having everything pre-portioned and ready to go means you can more easily start your training runs, fill your drop bags, or prep bags for your crew by having everything portioned out.
  • Planning ahead also means you get to the store or order however much you need so you’re not adding stress the last few days before you race or run in order to have your fuel set up and ready to go.
  • Don’t be afraid to use a timer. Some people wear running GPS watches that have alert/alarm features for fueling. You can use regular phone alarms, too, or apps like “Timer+” or “Intervals Pro” – both are ios apps that have free versions that allow one alarm each. You can choose whether it pushes a notification to your phone or watch or provides a verbal audio alert. I use both these apps and have one alarm that’s verbal audio reminding me to take electrolytes every 45 minutes; and the other one is a push-notification only that helps me remember to fuel roughly every 30 minutes. I generally am checking my watch so it’s easier to remember to fuel every :30 and 1:00 from when I start running, which is why I choose that one to be a push notification just in case. That works for me, but figure out your ideal timing and alert/alarm strategy to help you remember to fuel and electrolyte as you need to.

If anyone is curious about my individual approach to nutrition, I’ve written a bit more about it here, including how and why I actually use a spreadsheet to track nutrition and fueling during ultras and training runs. I separate my hydration (water only) and electrolytes (electrolyte pills; plus tracking the sodium in what I’m eating), so tracking my fueling serves many goals both during a run and after a run when I can look back and see if I need to tweak anything (such as not putting two smaller/lower-calorie, lower-sodium snacks back to back).

Since I’m running my ultra solo/DIY, I’m taking advantage of some fresh/heated fuel options, like mashed potatoes, ¼ of a ham and cheese (gluten-free) quesadilla, etc. For these, I am leaving a pre-printed sticky note on the baggie of shelf-stable fuel with a reminder for my husband to bring 2 of my fresh/hot options each time as well as anything else I need him to bring for that lap. To aid the bringing of the fresh/home food, I made a printed set of instructions that lists what these are, broken down by location (freezer, fridge, or on the counter) and instructions on how to make them. This is a critical step because what he predicts I want or how I want something to be cooked or prepped for a run doesn’t always match what I was wanting or expecting. Having clear instructions he can follow (eg heat ¼ quesadilla in microwave for 30s) works well for both of us and further helps with limiting his decision/processing fatigue since he’ll be responsible for grabbing and making 2 things; getting the lap bag of refuel; packing up ice and water; and getting all that and any other requested supplies out to the trail on time to refuel me as I pass by again.

If you have crew, think similarly about what food you want to have; how they’ll make it and serve it to you; how you’ll consume it at the aid station or as you move along on the trail. All of this planning will pay off.

(Another benefit of my macronutrient/fuel tracking spreadsheet is that my husband has access to it and can check it to see if I’m sticking to my fueling and electrolyte strategy, so he can troubleshoot and recommend things if I need support in fixing a problem. I don’t think he’ll use it much, but this secondary use of the spreadsheet was inspired by one of Heather Hart’s many excellent ultra posts talking about showing her empty fuel wrappers to her crew to prove that she was fueling. In my case, instead of counting wrappers, my husband can check my spreadsheet.)

3. Race day strategy (and pre-race and post-race strategy)

Continuing on the theme of pre-planning and laying out your strategy, I also think about strategy related to race day and leading up to race day as well as after race day.

My goal is to eliminate stress; pre-do as much work as I can physically and mentally to reduce the load when I will be physically and cognitively fatigued and overloaded.

Pre-race

For example, I look at my schedule prior to the race and try to clear out stressful activities (or prevent scheduling them, if possible). I know I’ll need to spend hours physically prepping (per above, making fuel and organizing supplies), so I put that on a to-do list and make a block of time on my calendar for it. I think about tasks that I will have before and after the race, such as changing my continuous glucose monitor (CGM) and pump sites to be in optimal locations on my body for the race; but also changing them early enough prior to the race so that they are settled in and I know they are working well. I also do things like pre-fill my reservoirs with insulin, and do enough reservoirs for a few days before and a week or so after the race. Like during the race, anything I can do to help reduce cognitive fatigue or pre-do steps of tasks that I know I will find harder to do is the goal.

This includes also blocking off my schedule with reminders to go to bed earlier. I think about when I’ll be waking up on race day and the night before, set my bedtime reminder for about 8 hours prior. Then every day before that I set it 15 minutes later, working back about a week and a half. I don’t always hit these sleep times, but progressively slightly shifting my sleep like this has been effective prior to international trips with a lot of time zone changes and also has paid off for getting a better night’s sleep the night or two before a race that involves waking up early.

I also specifically think through all the steps from waking up to starting my race, and how to optimize those. I eat a particular breakfast prior to the race, time it so that I can best get some macronutrients in, and time the insulin so I don’t have much of a BG spike but also then don’t have much insulin activity happening when I start my run. I don’t always get this right, but I attempt to line up my schedule so that I wake up and immediately eat what I have laid out on my bedside table and start hydrating, so that I can sleep as long as possible and don’t have to spend extra minutes convincing myself to get out of bed to go make breakfast. Some of these strategies are unique to me being a person with insulin-requiring (in my case, type 1) diabetes; but it’s pretty common for other ultrarunners to have strategies around what to eat the morning before a race; how many hours prior to the race; etc. I’d suggest you decide based on first principles and your own knowledge what to do for you.

Pro tip/personal vent: most people who blog or write about “avoiding insulin spikes” prior to the race or during the race – if they don’t actually administer exogenous insulin (aka inject or pump it, their pancreas makes it) – they also don’t usually actually know anything about the insulin response to food in their body. They are mostly repeating that from hearing it from others who repeat it from a long chain of people. You are SUPPOSED to spike insulin in response to what you’re eating: that’s good because it manages your blood glucose levels and helps your body process and store what it needs to be storing. It is also very normal for your blood sugar to rise in response to eating. The only people who need to think about “insulin spikes” are people who don’t think about it as insulin “spikes” but as insulin activity or more commonly “insulin on board” (IOB), which are people with insulin-requiring diabetes. This is different for us because we have to inject/pump insulin separately (our pancreases don’t make it on demand in response to sensing food in our bodies) AND because the insulin we use takes longer to act – 45-60 minutes instead of mere minutes – as well as has an hours-long “tail” effect. So it’s a lot of work to match the peak timing of insulin to the impact of different types of food in our bodies as well as watching out for insulin “stacking” over the many-hour activity curve for each dose. Your body, if you don’t have insulin-requiring diabetes? It does this, on its own, like magic. Yay, you! So ignore the stuff about “avoiding insulin spikes” and focus instead on things like whether the food feels heavy in your stomach when you run or gives you GI distress or otherwise doesn’t make you feel good. If it doesn’t, try different food and try different timing.

4. Race start and race strategy

You should definitely have a plan for how you run your race. In my case, because I’m a run/walker, I think about which set of intervals I will start at (likely 30:90, meaning 30s run and 90s walk, because that’s also how I train and helps me achieve my easy effort and easy paces). My goal is to start easy and limit excitement. Since I’m solo running, I don’t get swept up in other people running and racing. But, I always find the start and the first mile to be hard. So my strategy instead is to start, make sure all my intervals and run trackers are turned on; my electrolyte and fuel timers are set; and that I get my audiobook or podcast going. I troubleshoot any of these as needed on the walk intervals as I get going. I specifically try not to think about pace, especially the first half mile, nor how it’s feeling so I don’t catastrophize. I know the first 0.75 miles or so always feels pretty rough, so I aim to do no foreshadowing of how anything else is going to feel.

For most people running organized races, it helps to have studied the course maps and elevation profiles. Learn the course by heart, in terms of knowing how many miles to each aid station and what the elevation profile is like, and what your strategy is for each section. This means having a pace plan from the start and if you are going way too fast (due to excitement and other people around you), switching to walk breaks to help moderate your pace if you can’t slow your run pace down on its own. It also might help to not only have a pace plan but to also put time estimates on aid stations or check points. Use any extra time – especially if you are far ahead – to address any issues popping up (chafing, blisters or hot spots on your feet, etc.). Don’t start foreshadowing and forecasting that you can hold this too-fast pace through the whole race. You likely can’t (physically), and skipping the plan to stop and address issues will also doubly backfire later.

Even though I’m not running an organized race, this is still something I struggle with. I’m setting the goal to stop for bathroom breaks or shoe re-lacing or hotspot fixing in the first out and back “lap”, recognizing that it will help get my average time here to slow down a bit and keep me from powering through it too hard based on initial excitement. My goal is to make sure I don’t skimp on self-support (e.g. foot care or re-applying anti-chafe) by folding that it in to my goal pacing.

In general, though, because I’m running a 7 “lap” course, I focus on each lap. And only that lap. I’m running known out-and-back or triangle shaped “loops” that I know and love, so I can treat the first out-and-back like a long extra-easy run and settle in to watch landmarks while I listen to my audiobook and focus solely on managing effort. When I get back after the first loop and refill my vest, I then can think about the lap that I’m on (13 miles next, a much shorter loop). When I’m back, then I think about the next out and back (about 16 miles). And so on. My goal is to never think about how much time or distance is left. I’m not good at “running the mile I’m in”, as people often advise, but I am fairly good at focusing on a sub-component and the process overall. So focusing on each lap, and knowing there are 7 laps of varying lengths, helps me compartmentalize the experience. I’ll run ¼ of the first out and back in the dark and transition into the daylight; the second lap should also be during the day; then I’ll transition to my night gear for the third lap and be in the dark on the 4th, 5th, and 6th lap. I don’t have aid stations or elevation changes to really break up the course, but since I know the course and all the landmarks well, even with the variable distance “laps”, that aids me in knowing what to watch for and keep moving toward, even if I transition to a walk or get off track pace-wise from problem solving and am trying to re-orient myself again afterward.

It’s good to think about what supplies you’ll carry versus what you will have access to at aid stations, what you have in drop bags, and what your crew will have. I generally carry most of my needed first-aid/don’t feel good supplies on me: anti-chafing, kinesio tape for blisters or muscles, anti-nausea medication, etc. But I have a set of supplies prepped and ready for my husband (who is my crew) to bring to me if needed. I won’t have aid stations, so I think about my planned re-fuel stops as aid stations where he’ll primarily be. If something gets really bad, though, he can bike out to meet me. In some races you may have crew access to the trails wherever you need them; in other races, they are not allowed or able to access you outside designated points. Plan and carry supplies accordingly.

And, plan for your crew how to help you and how you’ll communicate with them. I will have cell service on my run, so I plan to text my husband to give him updates (in addition, he can geo-track my phone’s location) of when I’m on or off the last predicted pace to a refuel stop; what I want him to bring (e.g. the 2 hot/fresh food items, or any extra supplies from my laid-out stash); and how it’s going. We have practiced on training runs for him to grab my vest and refill ice and water, fuel, electrolytes/enzymes/eye drops, then bring it back to me (biking) or when I re-pass him after I’ve turned around and come back to the spot where he is per my course plan. But I also expect him, as crew, to also get tired and mentally fatigued, so I’ve made a checklist that he will use to make sure he completes the steps every lap. There’s also a checklist for day to night transition and night to day transition. This is in the same online document as my expert list of supplies and strategies to troubleshoot every issues, so he doesn’t have to guess what the good options are for fixing blisters or low sodium or whatever the issue may be. He runs, but he doesn’t do ultra runs, and regardless everyone is different in terms of what works for them and especially what works for them at different stages of an ultra; thus, having this crew guide or checklist or supply/strategy “cheatsheet” is a benefit, especially as both he and I get more and more tired through the night.

My strategy also includes making sure my devices stay powered. I always carry a small battery and a charging cord for my phone, and will keep my phone power topped off. This is because I use it for run tracking; geolocation for my crew (husband); fuel/electrolyte reminders; fuel tracking via my spreadsheet; and it is the “receiver” for my CGM so I know what my blood sugars are. Thus, it’s a mission-critical device and I always like to keep it charged. I will also grab a watch charger from my husband after a certain number of laps to top off the charge on my watch 1-2x, based on how it’s battery is doing. He’ll replace the battery in my vest each time after I’ve used it (we’ve got 2-3 small batteries for this purpose so he can take one home and re-charge it while I’m using the other, plus another backup). My phone then also serves as an emergency back-up light if my other two lights fail at night.

Speaking of lights and night gear, have a plan for when and how you’ll transition to night gear. Because I’m running a solo/DIY race and I’m not experienced at running at night (although I’ll do a run or two in training to practice the transition and my gear), I’m actually choosing to start my run at 6am so I run about 1.5-2 hours in the dark at the start of my race. Why? My husband doesn’t believe it’s necessary and is still arguing with me about it, but my strategy is intentional. I want to start the run in my lights and night gear and practice running in the dark again so that I can see if I need to tweak or adjust it for later that night around 6pm when I need to run in the dark again. This gives me one more practice round and mentally will help me – or at least, that’s the goal – know what it’s like to run in the dark. Given that I’ll run in the dark for 14h overnight, I don’t want to pick up my lights and take off and be 6-8 miles down trail from my husband and my backup gear if I realize something isn’t working well. I know I’ll be prone to just sticking it out for the entire lap; this way, I get a mini, 1.5h test of the gear on the same day and that way when I do a 3-5 hour first lap in the dark that evening, it’ll be slightly more likely to go smoothly and I’ll take all the smoothing I can get for my first 100M and my first all night and overnight run!

My other strategy involves self-care in the sense of regular medications that I need. Of course, I’ll be managing my blood sugars and insulin very carefully all day throughout (often thinking about it every 10-15 minutes to make sure everything is on track). But I also take allergy medication twice a day at morning and night, as well as a thyroid medication at night. So I have set reminders on my husband’s calendar to make sure he brings out my bags of night medication (e.g. allergy and thyroid) and in the morning (allergy) medication to make it less likely that I’ll forget to take them. Thankfully if I mess this up and am super delayed or forget to take them, it won’t derail my race/run much, but I definitely will feel not taking my allergy medication within hours so that will also help me remember to take my thyroid evening medication, too.

Another self-care strategy is around keeping my eyes hydrated with eye drops on a regular basis. In October 2021 I started to have really dry, gritty eyes and went to my eye doctor and was diagnosed with…dry, gritty eyes. Helpful! But, sarcasm aside (I love my eye doctor), I got eye gel to use before bedtime and eye drops to use throughout the day. Then in August 2022 I realized I had subclinical hyperthyroidism from Graves’ disease, which is an autoimmune disease (to go with type 1 diabetes, celiac disease, and exocrine pancreatic insufficiency) that causes eye issues. So! My dry gritty eyes were a precursor to my thyroid level changes. At any rate, learning how and when to use eye drops has become routine and I know how helpful it is to keep my eyes lubricated. I use preservative-free eye drops, not because the preservatives bother my eyes but because they come in miniature vials that are very easy to put in your pocket. Supposedly they are designed to be single use, but they usually contain enough lubrication for 2-3 rounds of drops for both eyes. So I twist off the lid, drop in both eyes, put the lid back on, and stuff it back in my pocket. I have set reminders on my calendar during the run to do this every few hours in case I forget, but I have also put vials in each lap bag (along with electrolytes and enzymes) and this presence of new eye drop mini-vials will help remind me (hopefully) to stay on top of eye lubrication.

Keeping my eyes from getting dry will hopefully help me be able to wear my contacts longer, because I usually take them out at night. But, I also will have my husband ready with my contact case and contact solution to take them out; then I will switch to my glasses or run without them (because I don’t need to see far or read signs off in the distance) for some period of hours, while still using the eye drops to keep them happy.

I’m fairly nervous about my eyes being an issue, since I’ve never run this long or all night. This was exacerbated by reading race recaps where folks talked about losing their vision! Yikes! I read a little bit more and realized they’re talking about corneal edema, where there is temporary swelling in the edema that makes your retinas visually look cloudy (if someone else looks at your eye). It usually goes away when people stop running after a few hours or day. But given my eye issues, before I had realized I was dealing with eye stuff related to Graves’ disease and thyroid stuff, I was concerned that my tendency to dry/gritty eyes would make me at higher risk of this, even though it seems like only 1-2% of 100M finishers ever deal with this. But, like everything else, I decided to have a strategy for this. I’ll seek to prevent it with regular lubrication and if it’s cold and windy, using my glasses (in lieu of contacts) or clear biker glasses or sunglasses to help protect my eyes from irritation and drying out further. But if it does happen, I’m using the advice from this post and bought a small vial of 5% hypertonic eye drops to use and try. (I had a regular annual eye doctor appointment a month prior, so I checked with my eye doctor about this. She had never heard of it and consulted a cornea specialist who had also not heard of it, which helps confirm that it’s pretty rare! Although they admitted they don’t get a lot of endurance athletes, looked it up on PubMed like I had, and agreed that if it happens to try the 5% hypertonic eye drops. Note that contact wearers want to take the contacts out before using these drops.) If I start to have vision issues; and I have the clear visual symptoms of this (according to Scott’s assessment of looking at my eyeballs); I’ll try the eye drops and ideally they’ll help. Since this is a known issue, if I still have some vision and can run safely (given my 6 foot wide paved trail in a safe location with no navigation required); I will likely try to continue – again based on discussion and advice with my doctor. But having a plan for this is much better than suddenly having vision issues in the ultra and feeling like I need to abort, when it might be ok to continue running (again on advice from my doctor).

Another strategy is thinking about how I’ll use caffeine. I usually drink caffeine up until noon, then switch to caffeine-free diet soda (and more water) in the afternoon and evening. I’ll drink a diet Mtn Dew when I wake up with my breakfast, but only one, and I will aim not to drink any throughout the day and save them for after midnight, when I’ll have been running for 18+ hours and have spent 6 hours in the dark. That way I have a “pick me up” to look forward to, both in terms of the taste/flavor of diet Mtn Dew, which I love, and some caffeine. There’s some suggestion that weaning off caffeine in the weeks prior to the race would make this a more effective strategy; but for me I think removing the joy of diet Mtn Dew would not be a net benefit. I’m also not convinced that I know what amount of caffeine is needed for an overnight boost, nor that I can test this reliably enough to have a solid evidence-based strategy here. So instead, I’m likely going for the mental boost of the taste change and the placebo effect of thinking the caffeine is helping. I have, however, tested drinking a diet Mtn Dew during a long run in the morning; so I do know that my body is ok taking it in.

This is yet another example of how I’m trying to remove decision-making during the race by pre-planning wherever possible for decisions like when to take caffeine or not; what to eat when; etc. I have laid out pacing sheets for a wide variety of run paces – so wide that the fastest pace (if all goes amazingly well) would have me finishing 8 hours faster than the slowest pace I have charted out. But the reason this matters is because I’m using the slowest time to estimate how much fuel I need to have prepared, then preparing more as backups (see more detail in the nutrition section). I created my overall fuel list then started putting in estimates of how many of each I would be willing to consume, also factoring in palate fatigue and texture fatigue and not wanting to chew or put ‘hard’ things (like Fritos) into my mouth in the later hours of my run. I balanced all of these variables and came up with 6 max servings of my chili cheese Fritos, most of which will be consumed in the earlier hours; 6 max servings of a few other routine things I can eat in most situations, then smaller counts (eg 1-4) of other things like the hot/home food that my husband will bring out in addition to the shelf-stable food. Once I had my overall counts totaling enough fuel for the slowest hour estimate and the number of servings; I then made a lap-by-lap list of what I wanted to eat when. I’m going to prepare these bags with the numbers I need per lap based on the timing (e.g. 10 snacks for the slowest pace estimated for my longest lap in between refuels, of which 8 are shelf stable and 2 will be added based on the sticky note reminder for the fresh/home options). Each of these lap bags will also include the requisite number of electrolyte pills I need, based on similar estimates from my “slow” paces, and the enzymes I need (because I have exocrine pancreatic insufficiency and need these to actually digest the fuel I consume), plus new eye drops. The point of this strategy is to remove decision making for both me and my husband: we don’t need to figure out how many enzymes or electrolytes I have “left” from the last lap (because I am off my fueling plan or more likely because I packed extra for each); instead, he can simply pull out all the trash, old enzyme/electrolyte bags, and replace with the new fuel, electrolyte, and enzymes along with my water/ice refill.

You may not have the complexity of my situation (type 1 diabetes, celiac, exocrine pancreatic insufficiency) influencing your fueling strategy and choices and how you’ll deal with fuel on the run. But, you might want to consider similarly planning your fuel. You may need to adapt your strategy based on how you’re feeling and what options you have in your pack, drop bag, with crew, or at an aid station, but you can plan for options to address issues of fatigue, palate/texture fatigue, etc. That, essentially, is what I have done.

Finally, I also consider a safety strategy part of my important race planning. I wear a watch that will generate an SOS alert and call emergency services if I fall during a run. I have the ability to press and hold a button on my watch or my phone to similarly generate an emergency services call. My location is tracked by my husband (and my mom from afar); and my husband also has access to my CGM for blood glucose tracking. He’ll have extra alerts and alarms set at different thresholds than we typically do for glucose levels. Finally, we’ve also created what I call the “DanaWatch” plan/squad, which is 3 people who will be texting me periodically from midnight to 9am my time, which is the overnight hours when Scott will be intermittently sleeping for 1-2 hour snatches in between refueling me. The plan is for my friend in the UK to text me every half hour and watch for a response that I’ll generate from my watch – probably a simple thumbs up emoji or tapping one of the auto-generated responses like “thanks” or “hi” or “I’m good”. After a few hours, a friend on the east coast will take over. Then my mom in central time zone after she wakes up will start texting. Nothing fancy, but the point is that they have ensured I’m still moving and ok. If I don’t respond within 5 minutes, they’ll call me; if I don’t pick up the phone, they’ll call Scott. This means that there wouldn’t be more than about 30 minutes where I’m not actively being “watched” virtually in case I get swooped by an owl, fall down and hit my head and am too disoriented to call for help (or some other very rare situation). I don’t expect that will happen; but I also think I’ll appreciate the “company” since I’m again, running a solo, DIY race where there aren’t aid stations, other runners, and other crew out and about to cheer me on. It’ll also help my husband sleep better/feel better, so any of those reasons are worth this strategy!

Post-race strategy

Like pre-race strategy, post-race strategy and planning is also critical for me. Once I cross the finish “line” and stop, I get cold and start to feel being wet (from sweat or rain) very quickly. My feet and everything hurt even more. I am absolutely not hungry despite knowing I need to re-fuel. But later I am ravenously hungry like a switch has shifted. So I plan accordingly.

First up, gear change. I want to change into dry clothes. I remind my husband to remind me that yes, despite the pain/hassle of getting out of a wet sports bra and changing it, I’ll regret not changing out of it in addition to changing my shirt. Sometimes, if we are getting in the car to drive home, I quickly swap to a dry shirt and then take the sports bra off under my shirt and just leave it off. No need for gymnastics to put another one on if I am just riding in the car. Same with shoes: once I take my sneakers off, my feet will not want to go back in sneakers. Definitely not the same sweaty, dirty shoes I was running  in, but also not cleaner and even bigger shoes. Instead, I prefer sandals/arch support flip flops. I have those, compression sleeves, and my clean dry clothes ready to go. I learned after my first trail marathon how good a washcloth feels for rubbing off sweat and dirt, so I also have a washcloth. It works for removing masses of mud before you get in the car, too. Or if you’re not muddy and hot and sweaty, pouring some cool water on it and washing your face feels heavenly.

Next up is fueling. When running an organized race, I don’t want to eat any of the race food, even if I can have it. (By “can have it” I mean that it’s safely gluten free with no cross-contamination risk, since I have celiac disease.) Usually I can’t have it, and I plan accordingly to bring food that is not the same food I’ve been eating throughout my ultra (because I have palate fatigue). I don’t want to eat as soon as I stop running, but usually after changing in the car and driving off, my body switches into “you’re safe” mode and wants to start refueling. Make sure you have all your food in the seat with you so you don’t have to stop and dig it out; or worse, have to try to twist around or reach for it (because you won’t want to do that most likely).

And again, you may have palate fatigue or similar (or it may disappear as soon as you are done), so having a few good options will be useful.

I also try to get enough groceries and prepare food for the following several days, too, when I’ll still be hungrier and making up for burned energy. My motivation to cook/prepare/put together food will be low, so having a stocked fridge and freezer with easy to prepare food is important.

Also, you may not be driving home from your race (or being driven home), so make sure to plan your logistics accordingly. Can you get to the airport that same day? Should you? Do you want to? And the next day? Is it safe to fly in your physical state? What different supplies do you need for flying that might be different (due to security regulations around liquid etc) than you would if you were driving home? Do you have enough snacks/food for the travel days following your run?

Training strategy

Oh, and yes, you have to physically train for your ultra. I am by no means a coach or an expert ultra runner. I am a solid, places-from-last back-of-the-pack runner who is a consistent run/walker. So get or make a training plan (Heather Hart has some great free ones for various distances). And stick to it. Except for when you don’t stick to it.

Wait, what?

You set your training strategy for “if all goes well”, but also build in flexibility and extra time for when things don’t go well. Like wildfire smoke season making it unsafe to run outside for a few days or weeks. Or you break your toe and spend 4 weeks not weight bearing. Or you have a lot of life stress, child or parental care, job stress, or any number of things. All this stress impacts training. Give yourself grace and be prepared to be flexible.

I have a hard time with this; I like my spreadsheets and my plans. But wildfire smoke and a broken toe were part of my 2022 ultra training experience this year, and I had to adjust training (and race plans) accordingly. At some point, you have to make the go/no-go decision about whether you’re going to run your race.

Think about what the “ideal training” is. Think about what is the “minimum training” to complete your event safety. If you’re somewhere in between, it’s going to be mental training and planning that can make the difference. At some point, if you’re above ‘minimum’ training you can decide to run even if your training isn’t ideal. Remember, it probably won’t be ideal and it isn’t for a lot of people. But per the mental training section and the wisdom I’ve gained from a lot of ultra runners…the most important factor might be deciding to do it. If you decide to, barring injury during the race or an accident, you will. If you decide mid-race you can’t or don’t want to, likely you won’t.

I think one thing I observe people not training is their walking strategy. Mine is baked in, because all my training short and long runs are intervals of run/walk. Many folks talk about walking hills or walking X minutes per Y minutes or Z miles. If that’s the plan for your race, train it during long runs. Walk hills or powerwalk or hike hills during runs or at the ends of runs. Practice a slow walk mixed in or a faster more efficient power walk. This will help build different muscles and help you maintain more efficient form (and speed) when you shift to it during the race, and help you go longer.

Similarly, practice with your vest/pack/handheld and other hydration gear. Practice with a similar stuffed and weighted pack. Practice with your head lamp. Do a run early in the morning as it transitions from dark to light; do a run into the evening as it transitions from light to dark to get used to your gear; practice troubleshooting it; and to improve your strategy for these transitions. If it’s wildfiresmoke season where you live, practice running masked as well. (On my last long run, I wore my mask for the full 8 hour run because air quality was so yucky.)

Also train and practice with your crew, if possible. Especially things like helping them tape or lubricate, tying your shoes, helping you put your pack on, them packing your pack/vest with supplies, etc. Any of these steps can be practiced during a training run so you and they can figure out what questions and assumptions you each have, and to build the crew checklist and instructions.

In my case, I’ve trained with my husband on refilling my ice and water in my pack during several training runs and previous races. We haven’t trained yet on him re-packing my (new) vest, though, so that’s on our list to practice on runs heading into my 100M. We did practice one run where I needed him to pick me up at a trail construction closure and drive me to the other side, with him bringing me a fresh/hot home-prepared fuel option. It worked well to a degree; I had a ¼ ham and cheese quesadilla slice in the microwave and had told him how to microwave it, which I had factored in cooling time for when he would be driving it to me before I would eat it. But he also tried to optimize and then put it in our car-based portable food warmer, which doesn’t do well with plastic bags (it needs a tupperware container) in general and was way too much heat. So it was scalding hot when I got in the car! Oops. Lesson learned. That was maybe unique to the car scenario but we will also test and practice the other food warming up options to make sure he doesn’t accidentally re-optimize where I’ve already optimized the food process; and make sure I have in fact optimally optimized the food strategy for each item.

Conclusion

Wow, that’s a lot of planning and strategy now that I’ve written it all out. Which makes sense, because I’ve been thinking about all these things for months and iterating on my strategies and plans. Hopefully, it’ll pay off and help immensely with making my 100M experience more smooth (note that I doubt any 100M would be easy/easier but I hope for “smoother”!) than it otherwise would be.

In summary, I pre-plan mentally for how it’ll feel running; I attempt to solve as many problems in advance as I can and prep supplies for fixing problems; I test, plan, and practice my fueling as much as possible; I aim to carefully pace effort as well as speed during my run; I break my run up into mental chunks so I am not dwelling on what’s to come but focusing on running the current segment; I try to minimize decision fatigue during and after the race by pre-doing anything I can and pre-supplying myself to make it easier; and of course, I train for months to prepare physically as best as possible while realizing that my training might not ever be ideal but that I can still safely attempt to run 100 miles.

PS – if there are any strategies, tips, or approaches you take to ultrarunning, especially 100 miles or more distance-wise, I’d love to hear them! Please share them in the comments or link to any posts you’ve written. I’m still learning and likely will always be evolving my strategies!

Note: I wrote this post before my 100 mile attempt. I ended up completing 82 miles and happily choosing to stop, knowing that I could physically keep going. Looking back at the above and reflecting on my experiences, I didn’t have a single challenge or experience that I wasn’t prepared to deal with or couldn’t deal with, thanks to all of the above work. So I’m thrilled and proud of my 82 mile experience!

If you found this post useful, you might also be interested to read this post with more details on how I developed my pacing, enzyme, and electrolyte estimates and more tactical specifics of how I prepped myself and my crew for my ultramarathon.