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

Modifying Thanksgiving and Other Holiday Meals With Exocrine Pancreatic Insufficiency (and Celiac)

In the last few years, I’ve had the opportunity (or challenge) of re-thinking how I do holiday food traditions. For the last 13+ years I’ve figured out how to do everything gluten free (because I have celiac). I had that figured out pretty well. But more recently, when I was eliminating onion and garlic and trying low FODMAP last year, it was a lot harder. Instead of modifying what I usually did, I essentially started from a blank page in figuring out what I *could* eat and then what I wanted to eat.

Thankfully, this year I have many more options. Since I realized it was exocrine pancreatic insufficiency (EPI) that was causing my GI issues, I am back to being able to eat whatever (gluten free) that I want. It’s a lot easier. But it’s still different this year than years prior, because I need to generally estimate how many grams of fat and protein in what I am eating in order to determine how much pancreatic enzyme replacement therapy (PERT) that I need to take to “cover” the meal so I can digest it.

Usually at Thanksgiving, we do a family-style meal. (With a group of family that is COVID-boosted and everyone does a rapid test before they come.) We all help make food and set it out on a table, and people pass it around and serve themselves. In the past, I’ve had a few gluten free specific dishes that just sat in front of my plate, and I served from those and took other naturally GF options (like sweet potatoes, green beans, etc) as they were passed around.

This year, I wasn’t sure how I wanted to handle it. I’m still not great at guesstimating the amount of fat and protein in food the way I am with carb estimates (for which I have 20 years of practice!). I knew I would want to weigh some of the food to help estimate it (turkey, stuffing, etc that are likely to be higher fat and/or protein quantities) whereas others like sweet potatoes were something I generally have estimated well.

But would I bring my scale to the table and pick up my plate and weigh it with each portion I served? That seemed like it might draw attention to me and generally reduce the joy of the meal for me. I could fill my plate then go back to the kitchen with it and weigh it; but that also felt like it would steal some of my joy from the experience of sitting down and eating with everybody.

Instead, I decided that I would dish up my plate in the kitchen, where I could weigh things and then pop them onto my plate, then take my plate out and have it ready to go (all estimated and pre-decided with how much PERT I needed to take) when everyone else was ready to eat.

That also inspired some flexibility in the choices of what I was eating, too. Instead of cooking a small, separate gluten free turkey (from which there were usually too many leftovers), I decided instead to go with a pre-made meal that is turkey, mashed potatoes, gravy, and a side of green beans. “Pre-made” may sound gross, but there’s a brand that does mail-order ready-made gluten free meals that are refrigerated and you only have to microwave them. And I happen to really like their turkey dinner one. So this year I decided to get several of those turkey meals, so that my turkey, mashed potatoes, and gravy were already pre-portioned and I can happily use the nutrition counts on the package. That’s the majority of what I was stressing about measuring/estimating! So that takes out a) a lot of work of making a separate GF turkey and b) makes it easier because I already have counts for the biggest portions of my plate.

I will still make a box of gluten free stuffing, but that’s essentially only one thing for which I’ll need to use the scale to estimate the serving size and nutrition counts. Otherwise, I’ll microwave my turkey meal, put it on my nice plate, add my portion of stuffing, and be able to take it to the table and eat just like everyone else.

I’ve also worked to take the guesswork and stress out of dessert, too.

I realized a few years ago that no one was eating any of the GF desserts I brought, even when I would specially hand-make gluten free pumpkins pies. In part because no one wanted to “take” my food (even if I offered it to them); but there’s also a bias that GF stuff is less good (which is sometimes true) and there’s a gluten-y option so why not just eat that? But I realized that I miss the joy of being able to pick from 2-3 dessert options just like everyone else. So instead of making or bringing one big GF pie and having a slice and having way too many leftovers, I’d just as soon get a frozen miniature gluten free pumpkin pie. And last year, I decided to get *two* miniature pies – for options! Then I could be like everyone else and decide on a whim whether I felt like pumpkin pie or a different flavor of pie. So that’s what I’m doing this year, too. I got 3 miniature pies – pumpkin, lemon, and apple. Yum!

The other thing this thought exercise has brought is the realization that if I’m making/preparing/bringing all my own food, I don’t have to limit myself to just eating it on Thanksgiving. This way I’ll get to have more moderate portions multiple times, without feeling inclined to overeat at the main Thanksgiving meal – because my meal can be repeated multiple times throughout the week, complete with a selection of tasty GF pie options.

I spent part of last week stressed about figuring out what to eat, what the nutrition counts are, etc. But I’ve tried to turn this into an upside, which I think it actually is (given my situation of also having celiac/GF to contend with alongside figuring out EPI).

  • Tips for holidays for those of us with chronic illnesses

This also reminded me how helpful I find it to separate the stressful decision making (what am I going to eat) and the math (what are the counts; how many enzymes does this mean I need?) from the act of making and consuming the food. All together, those can feel stressful and overwhelming (especially if I’m already stressed and overwhelmed about anything else). Separating those actions takes the time pressure off.

If you’re dealing with food allergies or food limitations or needing to dose medication (like enzymes) for your food, this is one way that I deal with reducing stress: planning ahead as much as possible and having as much done in advance as possible.

I also do this for diabetes when possible, such as when I’m planning for a trip or a holiday week with lots of busy activities. I take some time in advance and set out needed supplies for a pump site change; I also pre-fill two or three reservoirs with insulin, so instead of having to do a reservoir AND change my site, I’ve done half the work and reduced the friction. With the reservoir set up ready to go and the pump site sitting on my bathroom counter, it makes it feel easier to change my pump site (even though it’s not that much more work, it feels like I’ve made the amount of time and hassle it takes a lot more doable).

  • Remember that you can ask for help

The final thing that I did to reduce stress was to ask for help. I told Scott (my husband) what I was stressing about. He asked how he could help, and mainly that was discussing my options and what I wanted to possibly eat and discussing the different options from bringing the scale to the table vs plating my food in the kitchen all the way to making different food (which I ultimately chose).

I also assigned him a task to help me do my nutrition estimates. One of the frozen GF individual-sized pies I bought is from an amazing GF bakery in Western Washington, but because they’re a small bakery their items don’t have nutrition counts. As he’s done in the past, I told him I want help a) weighing the pie and b) looking up GF apple pies to get a general ballpark nutrition estimate. We’d then use the weight of my actual pie to create an estimated count based off of similar GF apple pies with nutrition counts. It’s not perfect, but it’s better than my wild guessing.

And, having him help makes it feel more manageable overall, because I’m not doing it “all” by myself.

You don’t have to do it by yourself all the time. No, no one can swallow your enzyme pills for you, but the people in your life can help you look up nutrition information or find safe places for you to eat or find safe options that you can eat. Sometimes you need to ask for them to help, because people don’t always know that they can help. And be clear with them, whether you’re just venting and want a listening ear (valuable!) or whether you’re looking for brainstorming ideas and solutions for a particular thing – which can also be super helpful. But remember to ask. Don’t keep it all to yourself; you are loved and people want to help but they may not know how to help.

You’ll notice that the title of this blog post was about modifying things…but I didn’t modify my food choices at all in the sense of “reducing” my food as one might infer from traditional thinking about meal modifications. I’m not eating fewer grams of fat because I have exocrine pancreatic insufficiency. Medically, in general, it’s no longer recommended for people with EPI to consume lower fat diets than the general population. Instead, we dose enzymes to match the amount of fat (and protein and carbs) that we are eating. It’s similar to type 1 diabetes and insulin. Before insulin was discovered, people were on the starvation diet (to prolong dying); but once insulin was discovered we have been able to eat the same diet as other people, as long as we cover what we are eating with insulin. Individually, you may CHOOSE a different, specific diet approach that works for you; but medically, it’s not necessary to modify things in general based on EPI or type 1 diabetes. The biggest/primary modifications I make are to not eat gluten, because I have celiac disease. Otherwise, I estimate the carbs (to tell my open source automated insulin delivery system that I’m eating) and fat and protein (to calculate how many enzymes I should be taking for EPI) in what I’m eating and carry on, just like everyone else.

Modifying holiday meals with exocrine pancreatic insufficiency and a few tips for reducing stress at the holidays with chronic illnesses in general

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)

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 I Organized Supplies For a 100 Mile Ultramarathon Run

One of the things I read trying to learn about best approaches for running 100 miles (an ultramarathon) is that it’s mostly mental and logistical challenges rather than physical, because after a certain point everyone is running much farther than they’ve ever trained and what makes the difference is how well you deal with the mental and logistical challenges and problem solving when you reach those points. I took that to heart and did a lot of pre-planning for my 100 mile run attempt. You can read more about the other types of prep and decision making that went into this, but the below is a more tactical “here’s how I organized” the different things I had been thinking about for months.

Route Planning and Pace Chart

First, you either need to plan your route (self-organized) or get the course map (organized race). This enables you to start to build out a pace chart. I did this first, because it then informed fueling strategy, planning, etc.

I laid out my route (7 laps, which later turned into 8 planned laps based on re-designing my routes). I had a column for the distance of each lap/segment, then a total distance column. This was mostly to make sure I had my distance add up to > 100 miles; otherwise I don’t care about the rolling distance total. I then built out a pace sheet with what I thought my paces would be. I’m very slow and run/walk, and planned to go as slow as possible at the start to be able to finish the entire distance. So while normally my running might be 14:00-15:30 min/mile pacing, I expected to want to start around 16:00-16:30 min/mi pace and that I’d likely slow over time. As a result, I started my pace chart with a 16min/mi pace and did a 17, 18, 19, 20, and 21 min/mi pace chart for each of my segments. This enabled me to estimate the time it would take to run each lap (segment) at each given pace, and also a clock time that I would be expected to roughly finish that lap.

Example of a 100 mile pace chart, with rows for each segment/lap run and then columns estimating a different minute per mile pace and how that changed the total segment time and clock time for each lap.

I also created a dynamic pacing chart that I could use to simulate different paces throughout my run. This enabled me to estimate what happens if I start fast and slow down a little or a lot and how that influences my overall time and pacing. During my run, my husband as crew updated the actual time to help estimate what my next segment time would be based on both the last segment time and overall pace. This helped him determine when he needed to set an alarm to come back out and meet me, as well as remind him where he was meeting me each time based on the route.

You’ll notice I’ve highlighted to make sure I remember to change the date when I cross over midnight, to make sure the pace chart updates accurately.

(Again, note these are simulated/fake times. The dark shading suggests when it’ll be dark, due to the time of year I’m running.)

Example of a dynamic pacing chart with the ability to enter the date and time I completed each segment or lap, and the right columns updated the segment pace and the overall run pace based on this input.

Fuel, Enzyme, and Electrolyte Estimates

These pace charts were useful for then estimating what I’d need when. Namely, how much fuel I’d need to prepare in bags for my husband to give me for each lap. I used the slower paces for each segment and my plan of fueling every 30 min to determine how much I needed. For example, if I’m fueling every 30 minutes, my second segment is 13.06 miles and I’d probably be running around or below a 17 min/mi pace at that point, which means it’ll be 3.7 hours or so. This is 7 snacks (one every 30 minutes, and I’ll be back before the next snack time for my refill). But, if I run slower, I want to round up slightly and add a snack to that estimate, so I put in 8 needed for that lap. I did that for all laps, rounding to the next hour and/or adding 1 to the estimate.

I also estimated my electrolytes similarly. I drink water and get my sodium and electrolytes via a combination of my fuel and electrolyte pills, with taking electrolyte pills every 45 minutes. Again, I used the slower pace times and the segment time to determine how many electrolyte pills I needed for the segment and listed those out.

Then, you’ll notice I also estimated “enzyme” needs. I have exocrine pancreatic insufficiency, known as EPI, which means I have to swallow enzymes anytime I eat anything to help my body digest it. Fun, right? Especially when I’m eating every 30 minutes across a 100 mile run and how many enzymes I need to take depends on what I’m eating! I typically take two (one each of two types) over the counter enzymes for a snack; although some bigger snacks I can take 2-3. Therefore, I estimated one per snack plus a few snacks where I’d take the 2-3, and also factored in dropping a few (it happens). It adds up to ~118 enzymes but again, that’s a lot of extra added in so I don’t have to worry about running out if I drop some or eat bigger snacks.  I calculated I’d probably end up consuming closer to ~80 of each type (so 160-ish total) across the 100 miles.

Another chart with the lap segment numbers and in columns to the right, estimates for the number of snacks, enzyme pills, and electrolyte pills for each segment. Totals of each type (snack, electrolyte, enzyme pills) are at the bottom of the chart.

Deciding What I Want to Eat, When

Next, I took these snack per segment estimates and decided what I actually wanted to eat. Based on my training, I ruled out some foods and perfected my list of what I wanted to eat and had practiced.

I listed all my preferred snacks down a column, then listed out the laps/segments in the row at the top. I then started playing around with what I wanted to eat at different times. Knowing I’d probably get tired of chewing crunchy things (for me it’s not the chewing but the texture of the harder things in my mouth), I put things like my chili cheese Fritos and peanut butter pretzel nuggets toward the first few laps. Later laps got easier to chew/swallow items like peanut butter M&M, fruit snacks, etc.

At the bottom you’ll notice I have a few different columns. A lot of the snacks indicated with numbers are ones that are shelf-stable and pre-packed. Others are snacks that are at home in the fridge or freezer or require prep (like mashed potatoes). I have a variety of quantities of those prepared (see right side of table) so I can choose any combination of 2 of those for my husband to bring out each lap, in addition to the pre-packed shelf-stable snacks. The bottom combinations make sure I have enough snacks between the pre-packed snacks and 2 fresh snacks every time, based on the above chart I had made to estimate how many snacks I needed for each segment.

A chart listing snack types in a row on the left; then the headers of the columns to the right list each lap number. Down the chart are numbers representing that snack and how many for each lap. A section at the bottom totals up the pre-packaged snacks per lap, as well as a row indicating that two extra home/hot snacks will be added, to estimate the total number of snacks I'll have for each segment or lap.

The other reason this chart is helpful is that I know how many extras of everything I have at home, too. So while I have certain amounts prepped and packed per column Z; column AA notes the extras I have pre-packaged and sitting at home, so if I get tired in lap 3 of beef sticks and want to not eat those, I can figure out what other 4 snacks I want that I have prepped and have my husband bring those alternatives.

One other note for nutrition and macronutrients: I use a macronutrient fueling tracking spreadsheet to help me track my calorie intake as well as sodium intake, to make sure I’m getting enough on a rolling basis. It also helps me figure out how many enzymes to take for each snack, if I don’t know it off hand or my brain forgets (as it might after running for 20+ hours!). You can read more about how I built and use this fueling spreadsheet here.

Planning Supplies

Over the last few months and especially the last training runs, I built a list/library of likely common issues I experienced or had learned about by reading other people’s race recaps and reports that I wanted to be prepared for. I organized it by type of problem, then listed potential supplies and solutions. For example, I had a blisters/feet section; low sodium; high or low blood glucose (because I have type 1 diabetes); etc.

The solutions list here is unique to me/how I solve things, but here’s an example of what I would include:

  • Sodium
    • More electrolyte pills more frequently than 45 min
    • Short term fix: Chicken broth (¼ is 530mg sodium. Entire thing is 2120mg)
    • Less sodium but variety: GZero (no carb) gatorade sips – whole bottle 270mg

I then also started a separate document for 100M Prep. This included a long checklist of all the items I had brainstormed as solutions – so in the above sodium example, it included extra electrolyte pills; chicken broth; Gatorade Zero; etc.

A screenshot of my 100 mile prep document showing the sodium section with chicken broth, electrolyte pills, and gatorade zero checked off the list, as I had already packed them.

This became helpful for me to a) make sure I had these things at home and to get them if I didn’t have them yet and b) to make sure I had set them out/organized them prior to my run so they’d be easily accessible for my husband to find.

The 100M Prep document also helped me break down larger tasks, too. Instead of “blister kit”, I started a sub-list that described everything I wanted in that baggie.

A contact case with a strip of purple painter tape that has "vaseline" written on it in sharpie; and three lip gloss tubes filled and marked with "NSAID", "salt", and "desitin".

This also helped me realize when I needed to add a task for splitting supplies. For example, if I had a big tube of cream or ointment that I possibly wanted to be in two places (such as a certain type of foot lubricant). I had previously bought a bag of empty lip gloss tubes for making travel size toiletries (shampoo, face wash, etc.). I realized that they also worked great for liquid, gel, cream supplies for ultra running, too. And so I added tasks for splitting those into smaller tubes once I decided and listed where they should go and thus how many I needed.

I also had a checklist for each lap bag, which is a combination of which snacks (planned above) and other supplies (like eye drops) that I wanted to have each time. I made a checklist for each lap, then laid out all my supplies and checked them off the list for each lap. Once I had all the supplies laid out, I then compiled them into one bag for each lap and added a label. This way my husband has one bag to bring for each lap, and there is a sticky note on top of each bag that has anything else (e.g. 2 fresh food items from home) he needs to add and bring that lap.

Laid out on the floor are baggies with enzymes and electrolyte pills for each lap; snacks surround the baggies. There are also individual pre-pasted toothbrushes and individual eye drop containers.

(Again, this is planned food, electrolytes, and enzymes for each lap. See the above section to see how I estimated the food/snacks, electrolytes, and enzyme needs.)

A gallon bag containing the enzymes, electrolytes, and snacks for each lap of my ultramarathon. Atop the bag is a printed sticky note with reminders of other fresh supplies my husband will bring each time.

I had started a list in a PDF for each lap, then printed the list for each lap on a sticky note so I could easily tape it to the bag and it would be easy for my husband to read.

Editor/Husband/Crew note from Scott: “These pre-prepped lap bags and printed sticky notes turned out to be most useful for making sure I got everything prepped each time. When I got home after each pit stop, I would pull out the next lap bag and make sure I had everything charging/washing/drying that I’d need at the next pit stop. Then when it got close to time to go, I’d work down the checklist, collecting each thing and putting it in my bike’s saddlebags, and then put the lap bag on top when I had everything packed.”

Crew Checklist

The same document as the overall solutions list became my Crew Checklist document. I added a checklist for what we should be doing at each lap. Again, this is unique to me, but it included things like putting my watch on the charger; removing trash from my vest; replacing water and ice in my hydration pack; replacing my battery for charging my phone; putting my fuel/enzymes/electrolytes into my vest and using eye drops; swapping socks; seeing if I need replacement supplies for low blood glucose; and after midnight considering whether I wanted to drink a Diet Mtn Dew for joy and caffeine.

A checklist in a Google Doc listing what my husband should make sure we do in between every lap, such as removed trash, replace water and ice and fuel, and make sure I have enzymes and electrolytes before I head out. It also reminds him to update the pacing spreadsheet with my latest lap time, and links to all spreadsheets he needs.

You’ll also spot the section I added for my husband for after he gets home to remember to charge batteries on various things, use the pacing spreadsheet to help him figure out when to come back out, etc.

At the bottom of my crew document (the lap checklist is at the top, followed by the comprehensive solutions list), I also included an example pep talk section with constructive things to say. If there’s things you don’t want your crew to say (e.g. “you’re almost there!” or “only X hours left” are on my ‘please no’ list), you can also list those out. I also have my list of run-ending situations that my husband and I agreed upon, which includes things like having a broken bone; severe dehydration or peeing blood; hypothermia; etc.

And finally in the document at the very bottom, I created a checklist for post-race care so when I get home and everything feels terrible and I don’t know what to do, my husband has my pre-thought-of checklist of things in the best order (shower then compression sleeves; making sure I eat something within an hour of finishing; etc) to help me do all the self-care things I’m probably going to forget about.

Editor/Husband/Crew note from Scott: “Peace-time plans are of no particular value, but peace-time planning is indispensable” and “No plan of operations extends with any certainty beyond the first encounter with the main enemy forces.”

– This particular document ended most useful for pre-race planning purposes, including our night-before review of all the plans. I glanced at it a couple times during the race, but mostly relied on the lap-bag checklist and the physical presence of items in my saddlebags at the pit stops.

DanaWatch

The other thing I had prepared was a document with instructions for friends who had agreed to help out during the overnight hours for me. My husband was “on call” and crewing the whole time, but overnight there were sections where I was out running 3-4 hours and he needed those times to sleep. For those hours, we set up “DanaWatch” (as I call it), with a friend who will text me every half hour or so to check on me. If they don’t get a text back (a simple emoji or other text from my watch), they were to call me, and if they couldn’t reach me, they’d call Scott. So, the document has these instructions, an outline of my safety plan, Scott’s number, etc. so everyone knows what the plan is. I had friends staggered over different times. For example, a friend in the UK was to text me starting around 8am his time, which is midnight for me. When another friend wakes up on the east coast (three hours ahead of me), she’d starting texting me, and so on. This way I wouldn’t feel “alone” and would have extra folks watching out to make sure I’m still on track.

I think that’s everything I did to prep in advance! Mainly, having those documents built to add ideas to (especially problems and troubleshooting solutions) and building out my pace chart so I could progressively make my fuel, electrolyte, enzyme and supply plans in advance was really helpful. Then I blocked off time the week before my run to make sure I had everything prepped and ready to go well before the day before my race, so I wasn’t stressed about getting ready. As I described in my other preparation for ultra post, anything I could do to limit stress and mitigate decision-making fatigue, I did. And it definitely helped!

How I Organized Supplies for a 100 mile (or similarly long) ultramarathon

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.

Reasons to “DIY” or Self-Organize Your Own Solo Ultramarathon or Ultra Run

I’ve now run two ultramarathons (both happened to be 50k races, with a race report for the second race here), and was planning my third ultrarace. I had my eye on the 50 mile (50M) version of the 50k I ran last year. It’s on a course I adore – a 6 foot wide crushed gravel trail that’s slightly uphill (about 1,000 feet) for the first 30 miles and then downhill at 2% grade for the remaining 20 miles. It happens to be close to home (hour and a half drive to the start), which helps for logistics.

I started training for the 50M weeks after my 50k this year, including talking my husband into taking me out to run some of the segments along the first 25 miles of the course. I’ve done the back half of the course several times through training and racing the 50k, and I wanted to check out each of the earlier segments to get a sense of what trail bathrooms existed on the course, make notes about milestones to watch for at various distances, etc.

After the first training run out there, when I started talking goal paces to get through the first and main cutoff at mile 30 (cutoffs got progressively easier from there, and even walking very slowly you could finish if you wanted to), my husband started to suggest that I should just run the course some other time on my own, so I didn’t have to worry about the cutoffs. I told him I didn’t want to do that. The cutoffs are a good incentive to help me push myself, and it’s worth the stress it causes in order to try to perform my best. (My target pace would get me through a comfortable 15 minutes before cutoff, and I could dial up the effort if needed to achieve cutoff). However, he suggested it another time and pointed out that even when running an organized race, I tend to run self-supported, so I don’t really don’t benefit as much from running in a race. I protested and talked again about the camaraderie of running when everyone else did, the fact that there were aid stations, the excellent search and rescue support, the t-shirt, the medal, the pictures! Then out loud I realized that I would be running at the back of the pack that I would miss the pictures at 25 miles because the photographer heads to the finish before I would get there. And they stop finish line pictures 3 hours before the end of the race. (Why, I don’t know!) And so I’d miss those photos too. And last year, I didn’t partake in the 50k staffed aid stations because I couldn’t eat any of their food and didn’t want any extra COVID exposure. Instead, my husband crewed me and refilled my hydration at two points on the course. The un-staffed aid stations didn’t have the plethora of supplies promised, and one race report from someone near the front of the pack said they were low on water! So it was a good thing I didn’t rely on the aid stations. I didn’t wear the tshirt last year, because it wasn’t a tech tee. Medals aren’t that exciting. So…why was I running the organized race?

My only remaining reasons were good search and rescue (still true) and the motivation of signing up for and committing to running on that date. It’s a commitment device. And my husband then smashed that reason, too, by reminding me that the only commitment device I typically need is a spreadsheet. If I decide I’m going to work toward a goal, I do. Signing up doesn’t make a difference.

And to be fair, he crews me whether it’s an organized race or not! So to him, it makes no difference whether I’m running an organized race or a self-organized long ultra.

And so I decided to give it some thought. Where would I run, if I could run anywhere in an hour’s distance from home? Do the same 50 mile course? Was that course worth it? Or was there somewhere closer to home where I could run that would be easier for my husband to crew?

He suggested running on our “home” trails, which is a network of hundreds of miles of paved trail that’s a short walk away. I immediately scoffed, then took the suggestion seriously. If I ran “from home”, he could crew from home and either drive out or e-bike out or walk out to bring me supplies along my route. If the park trail bathrooms ended up getting locked, I could always use the bathroom at home (although not ideal in terms of motivating myself to move quickly and get back out on the trail). I’d have a bigger variety of fueling options, since he could microwave and bring me out more options than if it had to be shelf-stable.

The list of benefits of potentially doing my own DIY or self-organized ultra grew.

(And then, I broke my toe. Argh. This further solidified my willingness to do a DIY ultra, because I could train up until when I was ready, and then run my distance, without having to choose between a non-refundable signup and not running or risking injury from running before I was ready.)

Eventually, my plans evolved (in part due to my broken toe). I was originally going to DIY a 50M or 100k (62M) over Labor Day weekend, recover, then re-train up and run a DIY 100 mile (100M) in late October or early November. When I broke my toe, I decided to scratch the “test” 50M/100k and just train and run the 100M, since that was my ultimate goal distance for the year.

Here are the pros of running a DIY ultra or a “self-organized” ultra, rather than an organized race with other people:

  • For me specifically, I have better trail options and route options. I can run a 95% flat course on paved, wide, safe trails through my local community.
  • These are so local that they are only a few minutes walk from my door.
  • The location means it’s easy for Scott to reach me at any point. He can walk out and bring me water and fuel and any needed supplies when I complete a loop every 4 or so hours. If needed, he could also e-bike out to bring me anything I need if I ran out or had a more urgent need for supplies. He can also drive out and access the course every half mile or mile for most of my planned route.

    This also means I have more fuel options that I can prepare and have for Scott to bring out. This is awesome because I can have him warm up ¼ of a ham and cheese quesadilla, or a corn dog, or sweet potato tots, or any other fuel options that I wouldn’t be able to use if I had to rely on pre-packed shelf stable options for a 30 hour race.

    (Note that even if I did an organized race, I most likely still wouldn’t benefit from aid station food. In part, because I have celiac and have to have everything gluten free. I also have to watch cross contamination, so a bowl of any kind of food that’s not individually packaged is something that’s likely contaminated by gluten. COVID has helped reduce this but not completely. Plus, I have diabetes so I need to be roughly aware of the amount of carbs I’m eating to decide whether or not to dose insulin for them, given what is happening to my blood sugar at the time. And, I have exocrine pancreatic insufficiency (EPI) which means I have to dose enzymes for everything I eat. Grazing is hard with EPI; it’s easier to dose and eat the amount that matches my enzymes, so pre-packaged snacks that I know the carb and fat and protein count means I know what insulin I need and what enzymes I need for each set of “fuel”. Guessing carb counts or enzyme counts in the middle of the night while running long distance is likely not going to be very effective or fun. So as a result of all that – pre-planned food is the way to go for me. Related, you can read about my approach for tracking fuel on the go with a spreadsheet and pre-planned fuel library here.)

  • There is regular public bathroom access along my chosen route.
  • I’ve designed out and back laps and loops that have me coming back by my start (remember, only a few minutes walk from home) and that make it so I am passing the bathrooms multiple times on a regular basis in case I need them.

    These laps and loops also make for mentally smaller chunks to tackle. Instead of 100 miles, I’ve got a ~24 mile out and back, a 13 mile loop, a 16 mile out and back, a repeat of the 13 mile loop, repeating again the 16 mile out and back followed by the 13 mile loop one more time, and then a quick 5 mile total out and back (so 2.5 out and back). These are also all routes I know well, so mentally finding waypoints to focus on and know how far I’ve gone are a huge benefit for mentally breaking down the distance into something my brain and body “know”.

  • There are no cutoffs or pace requirements. If I slow down to a 20 minute mile (or slower)…well hey, it’s faster than I was walking with my hands-free knee crutch a few months ago! (I rocked anywhere from a 45 minute mile to a 25 minute mile).

    There’s no pressure to go faster, which means I won’t have pressure to push my effort, especially at the start. Hopefully, that means I can maintain an “easy”, even effort throughout and maybe cause less stress to my body’s hormone systems than I would otherwise.

    The only pressure I have will be the pressure I put on myself to finish (eventually), which could be 26 hours or could be 30 hours or could be 36 hours or even slower… basically I have to finish before my husband gives up on coming out to refuel me!

  • And, once I finish, it’ll be ‘fast’ to get home, shower, refuel, and be done. This is in comparison to a race where I’d have an hour+ drive to get home. I’ll need to walk home which might actually take me much longer than that after I’ve ambulated for 100 miles…but it should hopefully be shorter than an hour!
  • Finally, the major benefit is flexibility. I can set my race date for a weekend when I’ve trained enough to do it. I can move it around a week or two based on the weather (if it’s too cold or too rainy). I can even decide to move it to the spring (although I’d really love to do it this year).

Here are some of the cons of running a DIY ultra or a “self-organized” ultra, rather than an organized race with other people:

  • Theoretically, it would be easier to stop because I am so close to home. I haven’t committed money or drive time or dragged my husband to far away places to wait for me to finish my run. (However, I’m pretty stubborn so in my case I think this is less of an issue than it might be for others?)
  • Yet, out and back loops and the route I’ve chosen could get monotonous. I chose these loops and the route because I know the distance and almost every tenth mile of the route super well. The first 6 miles of all the laps/loops are the same, so I’ll run those same 6 miles repeated 7 times over the course of the run.
  • I won’t have the camaraderie and knowledge that other people are out here tackling the same distance. I’m a back of the pack runner (and celebrate being places from last the way most people celebrate places from first!) and often don’t see anyone running after the start…yet there’s comfort in knowing I’m one of dozens or hundreds out here covering the same course on the same day with the same goal. I do think I’ll miss this part.
  • There is no one to cheer for me. There’s no aid station volunteers, fellow runners, or anyone (other than my amazing husband who will crew me) to cheer for me and encourage me and tell me I’m moving well.
  • There’s no medal (not a big deal), t-shirt (not a big deal), or official finishing time (also not a big deal for me).
  • There’s no cutoffs or pace requirements to motivate me to keep pushing when things get hard.

All in all, the benefits pretty clearly outweigh the downsides – for me. Again, I’m a back of the pack super slow runner (in fact, I typically run 30 seconds and walk 60 seconds throughout my whole race consistently) who can’t eat aid station food (because celiac/EPI makes it complicated) coming off of a broken toe injury (which messed up my training and racing plans), so my pros/cons lean pretty heavily toward making a DIY/self-organized solo ultra run an obvious choice. Others might have different pro/con list based on the above variables and their situations, but hopefully this helps someone else think through some of the ways they might decide between organized and un-organized ultramarathon efforts!

Reasons to "DIY" or self-organize your own ultramarathon run

Wondering about the “how” rather than the “why” of autoimmune conditions

I’ve been thinking a lot about stigma, per a previous post of mine, and how I generally react to, learn about, and figure out how to deal with new chronic diseases.

I’ve observed a pattern in my experiences. When I suspect an issue, I begin with research. I read medical literature to find out the basics of what is known. I read a high volume of material, over a range of years, to see what is known and the general “ground truth” about what has stayed consistent over the years and where things might have changed. This is true for looking into causal mechanisms as well as diagnosis and then more importantly to me, management/treatment.

A lot of times with autoimmune related diseases…the causal mechanism is unknown. There are correlations, there are known risk factors, but there’s not always a clear answer of why things happen.

I realize that I am lucky that my first “thing” (type 1 diabetes) was known to be an autoimmune condition, and that probably has framed my response to celiac disease (6 years later); exocrine pancreatic insufficiency (19+ years after diabetes); and now Graves’ disease (19+ years after diabetes). Why do I think that is lucky? Because when I’m diagnosed with an autoimmune condition, it’s not a surprise that it IS an autoimmune condition. When you have a nicely overactive immune system, it interferes with how your body is managing things. In type 1 diabetes, it eventually makes it so the beta cells in your pancreas no longer produce insulin. In celiac, it makes it so the body has an immune reaction to gluten, and the villi in your small intestine freak out at the microscopic, crumb-level presence of gluten (and if you keep eating gluten, can cause all sorts of damage). In exocrine pancreatic insufficiency, there is possibly either atrophy as a result of the pancreas not producing insulin or other immune-related responses – or similar theories related to EPI and celiac in terms of immune responses. It’s not clear ‘why’ or which mechanism (celiac, T1D, or autoimmune in general) caused my EPI, and not knowing that doesn’t bother me, because it’s clearly linked to autoimmune shenanigans. Now with Graves’ disease, I also know that low TSH and increased thyroid antibodies are causing subclinical hyperthyroidism symptoms (such as occasional minor tremor, increased resting HR, among others) and Graves’ ophthalmology symptoms as a result of the thyroid antibodies. The low TSH and increased thyroid antibodies are a result of my immune system deciding to poke at my thyroid.

All this to say…I typically wonder less about “why” I have gotten these things, in part because the “why” doesn’t change “what” to do; I simply keep gathering new data points that I have an overactive immune system that gives me autoimmune stuff to deal with.

I have contrasted this with a lot of posts I observe in some of the online EPI groups I am a part of. Many people get diagnosed with EPI as a result of ongoing GI issues, which may or may not be related to other conditions (like IBS, which is often a catch-all for GI issues). But there’s a lot of posts wondering “why” they’ve gotten it, seemingly out of the blue.

When I do my initial research/learning on a new autoimmune thing, as I mentioned I do look for causal mechanisms to see what is known or not known. But that’s primarily, I think, to rule out if there’s anything else “new” going on in my body that this mechanism would inform me about. But 3/3 times (following type 1 diabetes, where I first learned about autoimmune conditions), it’s primarily confirmed that I have autoimmune things due to a kick-ass overactive immune system.

What I’ve realized that I often focus on, and most others do not, is what comes AFTER diagnosis. It’s the management (or treatment) of, and living with, these conditions that I want to know more about.

And sadly, especially in the latest two experiences (exocrine pancreatic insufficiency and Graves’ disease), there is not enough known about management and optimization of dealing with these conditions.

I’ve previously documented and written quite a bit (see a summary of all my posts here) about EPI, including my frustrations about “titrating” or getting the dose right for the enzymes I need to take every single time I eat something. This is part of the “management” gap I find in research and medical knowledge. It seems like clinicians and researchers spend a lot of time on the “why” and the diagnosis/starting point of telling someone they have a condition. But there is way less research about “how” to live and optimally manage these things.

My fellow patients (people with lived experiences) are probably saying “yeah, duh, and that’s the power of social media and patient advocacy groups to share knowledge”. I agree. I say that a lot, too. But one of the reasons these online social media groups are so powerful in sharing knowledge is because of the black hole or vacuum or utter absence of research in this space.

And it’s frustrating! Social media can be super powerful because you can learn about many n=1 experiences. If you’re like me, you analyze the patterns to see what might be reproducible and what is worth experimenting in my own n=1. But often, this knowledge stays in the real world. It is not routinely funded, studied, operationalized, and translated in systematic ways back to healthcare providers. When patients are diagnosed, they’re often told the “what” and occasionally the “why” (if it exists), but left to sometimes fall through the cracks in the “how” of optimally managing the new condition.

(I know, I know. I’m working on that, in diabetes and EPI, and I know dozens of friends, both people with lived experiences and researchers who ARE working on this, from diabetes to brain tumors to Parkinson’s and Alzheimer’s and beyond. And while we are moving the needles here, and making a difference, I’m wanting to highlight the bigger issue to those who haven’t previously been exposed to the issues that cause the gaps we are trying to fill!)

In my newest case of Graves’ disease, it presented with subclinical hyperthyroidism. As I wrote here, that for me means the lower TSH and higher thyroid antibodies but in range T3 and T4. In discussion with my physician, we decided to try an antithyroid drug, to try to lower the antibody levels, because the antibody levels are what cause the related eye symptoms (and they’re quite bothersome). The other primary symptom I have is higher resting HR, which is also really annoying, so I’m also hoping it helps with that, too. But the game plan was to start taking this medication every day; and get follow-up labs in about 2 months, because it takes ~6 weeks to see the change in thyroid levels.

Let me tell you, that’s a long time. I get that the medication works not on stored thyroid levels; thus, it impacts the new production only, and that’s why it takes 6 weeks to see it in the labs because that’s how long it takes to cycle through the stored thyroid stuff in your body.

My hope was that within 2-3 weeks I would see a change in my resting HR levels. I wasn’t sure what else to expect, and whether I’d see any other changes.

But I did.

It was in the course of DAYS, not weeks. It was really surprising! I immediately started to see a change in my resting HR (across two different wearable devices; a ring and a watch). Within a week, my phone’s health flagged it as a “trend”, too, and pinpointed the day (which it didn’t know) that I had started the new medication based on the change in the trending HR values.

Additionally, some of my eye symptoms went away. Prior to commencing the new medication, I would wake up and my eyes would hurt. Lubricating them (with eye drops throughout the day and gel before bed) helped some, but didn’t really fix the problem. I also had pretty significant red, patchy spots around the outside corner of one of my eyes, and eyelid swelling that would push on my eyeball. 4 days into the new medication, I had my first morning where I woke up without my eyes hurting. The next day it returned, and then I had two days without eye pain. Then I had 3-4 days with the painful eyes. Then….now I’m going on 2 weeks without the eye pain?! Meanwhile, I’m also tracking the eye swelling. It went down to match the eye pain going away. But it comes back periodically. Recently, I commented to Scott that I was starting to observe the pattern that the red/patchy skin at the corner and under my right eye would appear; then the next day the swelling of and above the eyelid would return. After 1-2 days of swelling, it would disappear. Because I’ve been tracking various symptoms, I looked at my data the other day and saw that it’s almost a 6-7 day pattern.

Interesting!

Again, the eye stuff is a result of antibody levels. So now I am curious about the production of antibodies and their timeline, and how that differs from TSH and thyroid hormones, and how they’re impacted with this drug.

None of that is information that is easy to get, so I’m deep in the medical literature trying again to find out what is known, whether this type of pattern is known; if it’s common; or if this level of data, like my within-days impact to resting HR change is new information.

Most of the research, sadly, seems to be on pre-diagnosis or what happens if you diagnose someone but not give them medication in hyperthyroid. For example, I found this systematic review on HRV and hyperthyroid and got excited, expecting to learn things that I could use, but found they explicitly removed the 3 studies that involved treating hyperthyroidism and are only studying what happens when you don’t treat it.

Sigh.

This is the type of gap that is so frustrating, as a patient or person who’s living with this. It’s the gap I see in EPI, where little is known on optimal titration and people don’t get prescribed enough enzymes and aren’t taught how to match their dosing to what they are eating, the way we are taught in diabetes to match our insulin dosing to what we’re eating.

And it matters! I’m working on writing up data from a community survey of people with EPI, many of whom shared that they don’t feel like they have their enzyme dosing well matched to what they are eating, in some cases 5+ years after their diagnosis. That’s appalling, to me. Many people with EPI and other conditions like this fall through the cracks with their doctors because there’s no plan or discussion on what managing optimally looks like; what to change if it’s not optimal for a person; and what to do or who to talk to if they need help managing.

Thankfully in diabetes, most people are supported and taught that it’s not “just” a shot of insulin, but there are more variables that need tracking and managing in order to optimize wellbeing and glucose levels when living with diabetes. But it took decades to get there in diabetes, I think.

What would it be like if more chronic diseases, like EPI and Graves’ disease (or any other hyper/hypothyroid-related diseases), also had this type of understanding across the majority of healthcare providers who treated and supported managing these conditions?

How much better would and could people feel? How much more energy would they have to live their lives, work, play with their families and friends? How much more would they thrive, instead of just surviving?

That’s what I wonder.

Wondering "how" rather than "why" of autimmune conditions, by @DanaMLewis from DIYPS.org

What is in my running pack for running ultramarathons or training for a marathon

After three years of using a multi-purpose activity backpack as my running pack, the strap connector broke, and I had to find and re-stock a new running pack. I use a running pack for when I’m doing long runs for marathon or ultramarathon training.  I ended up pulling everything out of my old backpack and evaluating whether I still wanted to carry it on every long run. For the most part, everything got moved over to the new pack. There were a few cases where I had excessive duplicates (more on that below and why) where I ended up reducing the quantity. But everything else made the list for what I carry with me on long runs every single time.

  1. Hydration – via a camelbak or other bladder with a hose (example). I prefer straight water in my hydration pack and to separately manage electrolytes and fuel separately. The bonus of just having water is it’s easier to clean the hydration pack after each run!Tips: put ice cubes in your bladder and fill it with cold water. Cold water is awesome for long, hot runs in the sun. Also, my old hydration pack had an insulated compartment that kept the ice water cold for hours. My new running vest does not, and in fact has holes in the back for air flow that also means the heat from my back melts my ice pretty fast. To work around this in the new vest is to slide the filled hydration bladder into a padded mailing envelope that’s open at the top. It’s not quite as insulated as true insulation, but it protects the bladder from some of the heat coming off of your back and it probably stays cool 60% instead of 20% as long as before, which is a huge improvement.

    Extra tip: use a Qtip or similar to clean out the mouthpiece of your hose every few runs!

  2. Diabetes backups  – this means things like a backup insulin pump site. On long unsupported runs, it can also mean my blood glucose meter. (I wear a CGM so I don’t always take a meter along on runs unless it’s in an unsupported area where I don’t have easy crew access or support within a few miles). I’ve had several runs where my pump site has stopped working or ripped out, so having a backup pump site is just as necessary as having bandaids.The other source of backups is extra low carbs, e.g. sugar in case my blood sugar goes low. I usually keep a stash of carbs in my shorts pocket, but I also keep extra in my backpack in case I run through everything in my pocket. This is in addition to regular food/fuel for ultrafueling, it has to be faster-acting glucose/sugar that can more quickly fix a dropping or already-low blood sugar level.

    (This is one of the places I mentioned where I had excessive duplicates. I have continued to add extra to my backup stashes, and ended up with well over 100+ grams of “backup” carbs just in case. I ended up cutting down the total amount of carbs to closer to ~50 grams instead.)

    You can read some more about my strategy for running with diabetes here.

  3. Baggie with extra socks – I always carry a pair of extra socks, although I’ve never needed them in a normal training long run, I did end up using them in my 50k that involved crossing a river up to my knees five times
  4. Bandaids – Just like hiking, but I carry bandaids in case of bleeding cuts or scratches or worse, blisters on my heels, feet, or toes. I carry some that are blister-style and some regular style, smaller ones and larger ones, all the way up to large multi-inch squares that can cover the backs of my heels if I don’t already have them covered.More recently, I also started carrying small squares and strips of kinesiology tape for the same purpose. I originally did kinesio tape strips in case my knee needed some extra support, but I’ve found the kinesio tape also works well to cover my toes or backs of my heels in lieu of bandaids for blister prevention. For fixing blisters, I have to dry my feet really well or the kinesio tape doesn’t stay well or easily rubs off; so I tend to cover the toes that blister frequently as well as my heels prior to my runs so they’re less likely to generate blisters and require fixing mid-runs. I get a large roll of kinesiology tape (example) and cut it into smaller pieces as needed for all of these uses cases.

    I also keep at least one mini individual packet of antibiotic ointment (example) in the baggie as well.

  5. Lubrication – I carry a lubrication stick (Squirrel Nut Butter, because it works for me and is easy to reapply) to making sure between my thighs and other areas don’t chafe. When I sweat a lot, I often have to reapply every few hours to my thighs. While this can also be accomplished by carrying dabs of vaseline or your preferred lubrication in a baggie, the SNB stick is lightweight and I don’t mind carrying it so it’s easy to reapply and the hassle doesn’t prevent me from wanting to prevent chafing.
  6. Stuff to fix GI problems – it’s common to have GI issues when running, but I also had a two-year stretch of known GI issues that ultimately turned out to be undiscovered exocrine pancreatic insufficiency. During this time, I always carried individual Immodium and GasX in case I needed them.
  7. Electrolyte pills – I prefer to measure and track electrolytes separate from my hydration, so I use electrolyte pills (example) that I swallow on a scheduled basis to keep my electrolyte levels topped off. I’ve tried chew kinds (but they make me burp), so I stick with a baggie full of electrolyte pills. I bring extra just in case I drop some, but I generally eyeball and count out to make sure I have enough for each super long run.
  8. Any medication you need during the run – For me, that includes enzymes for fuel because I have exocrine pancreatic insufficiency and I need enzymes to help me digest any of my fuel. I have expensive, larger dose prescription pills that I usually use for meals, but it would make running even more expensive if I had to use a $9 pill every 30 minutes for a fuel snack. Luckily, there are over the counter versions of enzyme pills (more about that here) that are single-enzyme or multi-enzyme, that are more in the ballpark of $0.35 per pill, and I have a baggie of both kinds that I use to cover each snack.
  9. Fuel or snacks – A lot of ultra runners use gels, but I have been experimenting with ‘real’ foods. Basically, anything that’s around ~20g of carbs and less than ~10g of fat and 5-10g of protein that I like to eat. So far, that list includes chili Cheese Fritos, yogurt covered pretzels, peanut butter pretzel nuggets, beef sticks, Honey Stinger Stroopwaffles (the gluten free kinds – beware that only some of their flavors are GF!), mini date or fruit bars, fruit snacks, sweet potato tots, ¼ of a ham and cheese quesadilla, ¼ of a PBJ sandwich, a waffle, mini PayDay bars…. Noting that all of these are gluten free versions or are naturally gluten free, because I have celiac disease. I do a lot of work in advance to test these snacks carefully on training runs before I commit to using them repeatedly throughout longer runs so I know my body likes them during runs as well as other times. I only take the fresh/hot snacks (sweet potato tots, quesadilla etc) and eat those at the start or when my husband re-fills my pack for me mid-run, so I don’t have to worry about them spoiling. Everything else is shelf stable so when I pack a few more than I need per run and leave some in my pack, they’re not an issue to sit there for weeks until I manage to eat them in my rotation of snacks on a future run.
  10. Miscellaneous other supplies – car keys, house keys, hand sanitizer, a mask for going into trail bathrooms, and a battery and cord for charging my phone.

Phew. That’s a lot of stuff. And yes, it does end up being more supplies and more weight than most people carry. But…I use pretty much everything in my pack every few runs. Stuff happens: pump sites fall out, blisters happen, chafing happens, GI stuff happens..and I’ve found that training and running with a little extra weight in my pack is worth having the proper supplies when I need them, rather than having to end runs early due to lack of preparation or minor supplies that would enable me to keep running.

Every time I go out for a run, I add the requisite amount of snacks, enzymes, electrolyte pills, and hydration for the run. Any time I come back from a run and I have depleted a supply off of the above list – such as using my backup pump site – I immediately go and refill that supply so I don’t have to remember to refill it prior to the next run. Keeping the above supplies topped off and ready to go always in my backpack means they’re always there when I need them, and the peace of mind of knowing how I can handle and that I can handle these situations while running is priceless.

Note: previously I was using a backpack, because it was $30 and for my running it was good enough. However, when the strap broke, I looked to buy the same backpack again and it was $60. It was fine for $30 but if I was going to double the cost, I decided to research alternative running packs and vests. Vests seem to be more common in ultrarunners, so I looked for those, although they’re a lot more expensive (often $125-200). I was disappointed with how small of a volume some of them held, or they were just ugly. I liked the look of a purple one I found that came with a 1.5L bladder….but ugh. I fit a 3L bladder in my previous backpack and typically fill it 2-2.5L full as a baseline, and all the way up for a longer (6h+) unsupported run. I decided to risk getting this vest even though it was smaller and try putting my larger 3L capacity bladder in the new vest. (Luckily it was on sale for $90 at the time  which made it a little less annoying to buy compared to a $150 one.) The bladder does fit, but it sticks out the top and hits the back of my neck if it’s all the way full (3L). So for the most part, I’m filling the 3L capacity bladder about 2L full (and as noted in this post earlier, putting it inside an insulated envelope to help retain the cold for longer), and that works for me.

One thing I do like a lot from my new running vest is the front pockets. My old backpack I had to partially take off and twist around me in order to get snacks out. With two large front pockets, I can fit several hours of fuel in there so there is no twisting involved to get my fuel out, which is helping with my goal to fuel every 30 minutes. I do wish there was a separate smaller pouch – my old backpack had a small old school flip phone size “cell phone” pocket that I used to keep my baggies of enzymes and electrolytes in. Right now, I just have those baggies floating around the top of those pockets and it’s fairly easily to grab and pull out the right baggie, but I’m toying with adding some kind of small strap-on holster/pouch to the shoulder just for enzymes so I don’t have to worry as much about them jostling out when my pockets are completely full of snacks. But otherwise, these front pockets are overall a nice improvement.

A purple running vest on the left; supplies described in blog post in the middle laid out on the ground, and my old purple backpack used for running on the right.
A cat in mid air jumping over the purple runing vest in the left of the picture; another cat sitting to the right of the old purple backpack used for running.
Outtake! Mint jumping over my new running vest and running supplies while Mo looks on from the right next to my old running backpack.
A cat sitting on and sniffing the new smells of a new, purple running vest
Mint helpfully inspected my new running vest as soon as I set it on the ground.

Stigma and the impact on people with chronic illnesses

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.

Stigma has played a huge role in how I have responded to my own chronic autoimmune diseases for almost 20 years, in fact. I’m incredibly disappointed that not much has changed in all this time.

When I was diagnosed with type 1 diabetes almost 20 years ago, I was very aware of the stigma against people with any type of diabetes. I grew up in Alabama. People with diabetes were perceived by society to be lazy, out of control of their own behaviors, and any complications or outcomes were their own fault.

It wasn’t – and isn’t – their fault. The tools and technologies (not much technology then) did not give people a chance at good or great outcomes. The tools and technologies failed people. Yet, people and their behaviors were and often still are blamed, shamed, and treated poorly in society and in medicine and the healthcare system.

The first day I was diagnosed and sent from my primary care doctor’s office to the pediatric endocrinologist, I was scared. Diabetes in society was presented to me as amputations and kidney disease and other not so great things. I didn’t know anyone with type 1 diabetes. And when the pediatric endo came into the room for the first time and said, “Don’t worry. We can get you an insulin pump, it’ll be great!” my reaction was: absolutely not. An insulin pump will be a visible label that I have diabetes. Instead of a chance of being blamed, shamed, and treated badly – I will almost certainly be labeled, blamed, shamed, and treated badly. No, thanks.

And so I didn’t get on a pump (at first). It wasn’t until I realized that a pump would give me freedom, to sleep in and not have to wake up and eat a pre-allotted amount and take insulin, that I decided the personal freedom was worth the labeling, dirty looks, blame, shame, and negative treatment.

And I regret it. I regret how stigma shaped my reaction to possible tools and technology that would aid me. I’ve strived ever since to not let that factor into my choices.

But last week, I realized stigma was still playing a role. I have a new thing, and I rationalized my choice not to blog about it because it’s a well-known thing, and as a newbie, surely I didn’t have anything to add to the public discourse about this thing. Information is available about this new thing, and I wouldn’t be adding anything new. What did I have to say that hasn’t been said before about this common topic?

But after a few days, I realized my decision to not blog about my experience was also driven by stigma and fear of how I’ll be treated when I share publicly that I have YetAnotherThing on my list of things I’m managing. It’s an autoimmune thing, again. It’s not “my fault”. It’s not at all in my control.

Because my immune system is too strong for my body to handle, I have not one, not two, but now three autoimmune things. (And 4 things total, but exocrine pancreatic insufficiency is possibly not an autoimmune thing so I leave it off the list even though it’s on my overall list of things I’m managing.)

Like people with physical or visible disabilities, having a chronic disease and talking about it publicly gives people the feeling that they can publicly shame and blame me “for my own good”. Or hypothesize on what I’ve “done wrong” to get to this point. Or to “suggest” things I can do to better manage. Often, these things are scientifically wrong. (Note: this is why ‘cinnamon’ is a joke for people with type 1 diabetes. There is no cure or treatment for type 1 diabetes other than taking insulin for the rest of our lives. Cinnamon does not cure diabetes, yet it and other things are presented to people with diabetes as “alternative” methods that would in fact, kill me if I relied upon those and stopped taking insulin.)

I dislike this. I dislike the fact that being open about what I’m dealing with, in order to possibly help other people also dealing with the same thing or identifying gaps in the healthcare system, invites judgment and all of this commentary. Let me be clear: I do not invite that. Ever. Not now, not in the future. Not about diabetes, not about celiac, not about exocrine pancreatic insufficiency, and not about my new thing. I’ve noticed more and more other advocates writing in their tweet threads or their blog posts “This is not soliciting advice or suggestions”, because so often we ARE bombarded with “advice” or “suggestions” that are unsolicited, and like I mentioned above, possibly dangerous if not outright deadly.

I don’t have answers. I can’t fix the stigma in society. The best I can do is perhaps write about it and talk about it and help shine a light on the fact that it 100% does impact people. It prevents other people from seeking healthcare when they need it. It prevents people from sharing and processing their feelings, or reaching out for help when they need it. It causes harm. And we all need to do better as a society.

So I am sighing a lot, and writing this blog post first so I can process my feelings that are blocking me from writing the next blog post. The one with scientific information and citations as well as an articulation of my experience and situation, in hopes that one day someone on page 18 of a search engine will find it when they need it. It’s not for everyone.

But as always, I think that if it eventually helps one person, then it’ll be worth it. It’ll be worth the stigmatizing response that some people will have now and in the future when they realize I am someone living with multiple autoimmune diseases. I hope. It’s always my hope. I’ve had this tagline on my email ever since I first had email, and I still believe it’s true today which is why I wrote this blog post and am now turning to writing the next one:

“Doing something for someone else is more important than anything you would do for yourself.”