PWD

What Do You See When You See (Or Think Of) Diabetes?

by Dana Lewis

What do you see when you see (or think of) diabetes?

—

In my house, I see small piles of low treatments (for hypoglycemia) in every place that I hang out. On my desk next to my computer. In my bedside table. On the counter next to the door where I grab them before heading out for a run or a walk. On the edge of the bathtub in my shower, because low blood sugars happen everywhere.

Sometimes, one of my nephews spots them in a translucent pocket on my shorts. His brain sees candy at first, not a medical treatment. Which is fine – he’s young. He’s learning that for Aunt Dana, they’re not “candy” or a “treat” – they’re a medical treatment.

All of the nieces and nephews have learned or are learning that Aunt Dana has “robot parts”, which is how they see my pump clipped to my pocket or waist band or the hard lump (CGM sensor) they feel or see on my arm.

—

What I hope people see, though, is that diabetes is not a death sentence. Thanks to improvements in insulin, insulin delivery, and blood glucose measuring, it’s no longer visibly tied to possible complications of diabetes, like amputations, kidney dialysis, or loss of vision. That is what I saw when I was diagnosed with diabetes in 2002, and what was presented to me.

I hope instead that people see people with diabetes like me living our lives, running 82 mile ultramarathons (for those of us who wish to do that), experiencing pregnancy (for those who wish to do that), achieving our career goals, living life in whatever ways we want to live our lives. Just like everyone else.

—

It’s worth noting that when typing this, autocorrect in my first sentence suggested “treat” instead of “treatment”.

That’s how computers “see” diabetes, too, with sugar and carbs equivalent with diabetes. Despite the fact that medical research shows that diabetes is a complicated combination of genetics, immune system shenanigans (my words), and numerous other factors not in a person’s control, humans haven’t gotten that message. People are still stigmatized and joked about.

So computers learn that. And that’s what they see.

When I was testing Stable Diffusion (an open source AI tool for generating images) recently, I learned about a site “Lexica” that shows you what other people have generated with similar key words. I thought it would be interesting to get ideas for better images to visualize concepts in posts about diabetes, so I searched diabetes.

A screenshot of search results in Lexica for the term "diabetes". Primarily it is images of people portrayed as very overweight and many images of a lot of food.

I should’ve known better. Humans say and think “diabetes” in response to seeing pictures of carbohydrates, so that’s what computers learn.

AI doesn’t know any better because humans haven’t taught themselves any better.

Sadly, “insulin pump” as a key word is disheartening in a different way.

A screenshot of image results from Lexica for the term "insulin pump", which mostly shows a mix of devices that look like blood glucose meters or pulse oximeters.

There are so few existing visuals and images of people with insulin pumps that the visual images generated by AI are a mix of weird hybrid old school computer components and blood glucose monitors or other medical devices.

“Hypoglycemia” mostly generates cartoons in foreign languages or made up languages that I’m guessing are jokes by people without diabetes about having low blood sugar and using it as an excuse for various things. “Hyperglycemia” brings a mix of the hypoglycemia-style cartoons and the diabetes-style images of carbs and how the AI thinks people with diabetes all look.

I’ve noticed this with AI-writing tools, too. AI is good at completing your sentence or writing a few sentences based on well known concepts and topics that already exist today. It’s not yet good at helping you write content about new concepts or building on existing content.

It’s trained on the content of today and the past, which means all of the biases, stereotypes, and stigmatizing content that aren’t good today are also extrapolated into our future with AI.

I don’t have all the answers or solutions (I wish I did), but I want to flag this as a problem. We can’t expect AI to do better trained on what we have and do today, because what we do today (stigmatize, stereotype, and harm people living with chronic diseases) is not ok and not good enough.

We need to change today and train AI with different inputs in order to get different outputs.

That starts with us changing our behavior today. As I wrote a few days ago, please speak up when you see chronic diseases being used as a “joke” and when we see people being stereotyped or when we see racism occurring.

It’s hard, it’s uncomfortable – both to speak up, and to be corrected.

I’ve been corrected before, on verbal patterns and phrases I learned from society that I didn’t realize were harmful and stigmatizing to other people.

I’m working on learning to say “I’m sorry, you’re right, and let me learn from this” and trying to do better in the future, living up to my statement that I’m going to learn from that moment.

It can absolutely be done. It desperately needs to be done, by all of us.

We can course-correct, whether it’s in a one on one conversation, something we see in a small social network in social media, or even in a large room at a conference.

I still remember and appreciate greatly when I flagged that a diabetes joke was made at a conference on stage over four years ago. Upon hearing the joke, I noted that half the room laughed; and that it wasn’t ok. So I spoke up on Twitter, because I was live tweeting from the conference. I didn’t think much would come from it. But it did. Amazingly, it did.

John Wilbanks saw my tweet, realized it wasn’t ok, and instead of tweeting support or agreement (which also would have been great), took an amazing, colossally huge and unexpected step. He literally got up from his seat, went to the microphone, and interrupted the panel that had moved on to other topics. He called out the fact that diabetes was used as a joke a few minutes prior and that it wasn’t ok.

He put on a master class for how to speak up and how to use his power to intervene.

It was incredibly powerful because although the “joke” had gone over most people’s heads and they didn’t think it was a big deal, he brought attention to the fact that it had happened, was hurtful and harmful, and created a moment for reflection for the entire room of hundreds of people.

We need more of this.

When someone flags that they are being stereotyped, stigmatized, being discriminated against – we need to speak up. We need to support them.

It matters not just for today (although it matters incredibly much for today, too) but also for the future.

AI (artificial intelligence) learns from what we teach it, much like our children learn from what we teach and show them. I don’t have kids, but I know what I do and how I behave matters to my nieces and nephews and how they see the future.

We need to understand that AI is learning from what we are doing today, and what we do today matters. It should be enough to want to not be racist, discriminating, stereotyping, and harmful to other people today. But it’s not enough.

The loudest voices are often the ones establishing “normal” for our culture, our children, and the AI systems that may be running much of the world before our children graduate college. We need to speak up to help shape the conversation today, because  what we are doing today is teaching our children, our technology, and is what we’ll get in the future, ten-fold.

And I want the future to look different and be better, for all of us.

What do you see when you think of diabetes? And what are we teaching our children and our technology?

There IS Something You Can Do For Diabetes Month

by Dana Lewis

I have a favor to ask of you, especially you as a person who is not living with diabetes.

—

On day 1 of diabetes awareness month 2022 (also known as today), I saw a tweet. Someone posted a picture of some snacks and asked what people thought it was.

Like clockwork, one of the replies was “Diabetes”.

The original tweet’s author replied with a laughing emoji.

I saw it, sighed, and clicked away.

Then I clicked back to it. And typed: Diabetes “jokes” aren’t funny.

Later, I checked and the author deleted their laughing emoji tweet. The original “Diabetes” tweet still stands.

—

I’ve lived with type 1 diabetes now for more than 20 years.

It’s not because of what I ate as a kid. It has nothing to do with what I ate before or what I eat now.

Most cases of diabetes, in fact, are not the direct result of individual behavior (such as what we choose to eat), and result from a complicated combination of genetics, immune system shenanigans, and numerous factors outside of people’s control (such as the environment in which they live). Diet changes can sometimes delay the onset of type 2 diabetes, but diet is never the sole cause of it, and usually not even the dominant factor.

Diabetes is no one’s fault, just like getting cancer is no one’s fault.

But unlike cancer or asthma or numerous other life-altering chronic diseases, diabetes is a punchline in society.

It’s treated as something you can judge and shame other people for. It was 20 years ago and it is today.

Literally, today.

Probably hundreds if not thousands of times, people are out there making diabetes jokes.

So here’s where the favor comes in that I’d like you to do for me, especially those of you reading this who don’t have diabetes, when you see someone making a diabetes “joke”.

Speak up. Say something. Anything. Don’t look away.

Say, “please stop” or “Diabetes “jokes” aren’t funny” or “Why are you stigmatizing people?”

Because these are in fact stigmatizing comments. It impacts us in ways you can’t imagine, from our day to day lives (people trying to restrict our food or tell us what we can eat) all the way to the fact that these pervasive, stigmatizing attitudes are so internalized, even by healthcare professionals, that they actively cause harm when we seek healthcare in the healthcare system.

So please, say something. Advocate for and with us. Be our allies. Speak up, and give us a break. We don’t get a break from diabetes. We sometimes get burnt out from advocating for ourselves and keeping ourselves alive. That is a lot of work, as is advocating. But it would be great if we got a break from the “jokes” that aren’t jokes.

That’s something you can do for diabetes awareness month, and every month, that will make a meaningful difference for people living with all types of diabetes.

(Thanks.)

–
(PS – For what it’s worth, those snacks being tweeted about were actually for running an ultramarathon, which takes a lot of snacks. And people with diabetes, like me, can eat snacks and run an 82 mile ultramarathon.)

Speak up. Say something. Don't look away. These are things you can do for diabetes awareness month.

How I Organized Supplies For a 100 Mile Ultramarathon Run

by Dana Lewis

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)

by Dana Lewis

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!

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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!

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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.

Understanding the Difference Between Open Source and DIY in Diabetes

by Dana Lewis

There’s been a lot of excitement (yay!) about the results of the CREATE trial being published in NEJM, followed by the presentation of the continuation results at EASD. This has generated a lot of blog posts, news articles, and discussion about what was studied and what the implications are.

One area that I’ve noticed is frequently misunderstood is how “open source” and “DIY” are different.

Open source means that the source code is openly available to view. There are different licenses with open source; most allow you to also take and reuse and modify the code however you like. Some “copy-left” licenses commercial entities to open-source any software they build using such code. Most companies can and do use open source code, too, although in healthcare most algorithms and other code related to FDA-regulated activity is proprietary. Most open source licenses allow free individual use.

For example, OpenAPS is open source. You can find the core code of the algorithm here, hosted on Github, and read every line of code. You can take it, copy it, use it as-is or modify it however you like, because the MIT license we put on the code says you can!

As an individual, you can choose to use the open source code to “DIY” (do-it-yourself) an automated insulin delivery system. You’re DIY-ing, meaning you’re building it yourself rather than buying it or a service from a company.

In other words, you can DIY with open source. But open source and DIY are not the same thing!

Open source can and is usually is used commercially in most industries. In healthcare and in diabetes specifically, there are only a few examples of this. For OpenAPS, as you can read in our plain language reference design, we wanted companies to use our code as well as individuals (who would DIY with it). There’s at least one commercial company now using ideas from the OpenAPS codebase and our safety design as a safety layer against their ML algorithm, to make sure that the insulin dosing decisions are checked against our safety design. How cool!

However, they’re a company, and they have wrapped up their combination of proprietary software and the open source software they have implemented, gotten a CE mark (European equivalent of FDA approval), and commercialized and sold their AID product to people with diabetes in Europe. So, those customers/users/people with diabetes are benefitting from open source, although they are not DIY-ing their AID.

Outside of healthcare, open source is used far more pervasively. Have you ever used Zoom? Zoom uses open source; you then use Zoom, although not in a DIY way. Same with Firefox, the browser. Ever heard of Adobe? They use open source. Facebook. Google. IBM. Intel. LinkedIn. Microsoft. Netflix. Oracle. Samsung. Twitter. Nearly every product or service you use is built with, depends on, or contains open source components. Often times open source is more commonly used by companies to then provide products to users – but not always.

So, to more easily understand how to talk about open source vs DIY:

  • The CREATE trial used a version of open source software and algorithm (the OpenAPS algorithm inside a modified version of the AndroidAPS application) in the study.
  • The study was NOT on “DIY” automated insulin delivery; the AID system was handed/provided to participants in the study. There was no DIY component in the study, although the same software is used both in the study and in the real world community by those who do DIY it. Instead, the point of the trial was to study the safety and efficacy of this version of open source AID.
  • Open source is not the same as DIY.
  • OpenAPS is open source and can be used by anyone – companies that want to commercialize, or individuals who want to DIY. For more information about our vision for this, check out the OpenAPS plain language reference design.
Venn diagram showing a small overlap between a bigger open source circle and a smaller DIY circle. An arrow points to the overlapping section, along with text of "OpenAPS". Below it text reads: "OpenAPS is open source and can be used DIY. DIY in diabetes often uses open source, but not always. Not all open source is used DIY."

Continuation Results On 48 Weeks of Use Of Open Source Automated Insulin Delivery From the CREATE Trial: Safety And Efficacy Data

by Dana Lewis

In addition to the primary endpoint results from the CREATE trial, which you can read more about in detail here or as published in the New England Journal of Medicine, there was also a continuation phase study of the CREATE trial. This meant that all participants from the CREATE trial, including those who were randomized to the automated insulin delivery (AID) arm and those who were randomized to sensor-augmented insulin pump therapy (SAPT, which means just a pump and CGM, no algorithm), had the option to continue for another 24 weeks using the open source AID system.

These results were presented by Dr. Mercedes J. Burnside at #EASD2022, and I’ve summarized her presentation and the results below on behalf of the CREATE study team.

What is the “continuation phase”?

The CREATE trial was a multi-site, open-labeled, randomized, parallel-group, 24-week superiority trial evaluating the efficacy and safety of an open-source AID system using the OpenAPS algorithm in a modified version of AndroidAPS. Our study found that across children and adults, the percentage of time that the glucose level was in the target range of 3.9-10mmol/L [70-180mg/dL] was 14 percentage points higher among those who used the open-source AID system (95% confidence interval [CI], 9.2 to 18.8; P<0.001) compared to those who used sensor augmented pump therapy; a difference that corresponds to 3 hours 21 minutes more time spent in target range per day. The system did not contribute to any additional hypoglycemia. Glycemic improvements were evident within the first week and were maintained over the 24-week trial. This illustrates that all people with T1D, irrespective of their level of engagement with diabetes self-care and/or previous glycemic outcomes, stand to benefit from AID. This initial study concluded that open-source AID using the OpenAPS algorithm within a modified version of AndroidAPS, a widely used open-source AID solution, is efficacious and safe. These results were from the first 24-week phase when the two groups were randomized into SAPT and AID, accordingly.

The second 24-week phase is known as the “continuation phase” of the study.

There were 52 participants who were randomized into the SAPT group that chose to continue in the study and used AID for the 24 week continuation phase. We refer to those as the “SAPT-AID” group. There were 42 participants initially randomized into AID who continued to use AID for another 24 weeks (the AID-AID group).

One slight change to the continuation phase was that those in the SAPT-AID used a different insulin pump than the one used in the primary phase of the study (and 18/42 AID-AID participants also switched to this different pump during the continuation phase), but it was a similar Bluetooth-enabled pump that was interoperable with the AID system (app/algorithm) and CGM used in the primary outcome phase.

All 42 participants in AID-AID completed the continuation phase; 6 participants (out of 52) in the SAPT-AID group withdrew. One withdrew from infusion site issues; three with pump issues; and two who preferred SAPT.

What are the results from the continuation phase?

In the continuation phase, those in the SAPT-AID group saw a change in time in range (TIR) from 55±16% to 69±11% during the continuation phase when they used AID. In the SAPT-AID group, the percentage of participants who were able to achieve the target goals of TIR > 70% and time below range (TBR) <4% increased from 11% of participants during SAPT use to 49% during the 24 week AID use in the continuation phase. Like in the primary phase for AID-AID participants; the SAPT-AID participants saw the greatest treatment effect overnight with a TIR difference of 20.37% (95% CI, 17.68 to 23.07; p <0.001), and 9.21% during the day (95% CI, 7.44 to 10.98; p <0.001) during the continuation phase with open source AID.

Those in the AID-AID group, meaning those who continued for a second 24 week period using AID, saw similar TIR outcomes. Prior to AID use at the start of the study, TIR for that group was 61±14% and increased to 71±12% at the end of the primary outcome phase; after the next 6 months of the continuation phase, TIR was maintained at 70±12%. In this AID-AID group, the percentage of participants achieving target goals of TIR >70% and TBR <4% was 52% of participants in the first 6 months of AID use and 45% during the continuation phase. Similarly to the primary outcomes phase, in the continuation phase there was also no treatment effect by age interaction (p=0.39).

The TIR outcomes between both groups (SAPT-AID and AID-AID) were very similar after each group had used AID for 24 weeks (SAPT-AID group using AID for 24 weeks during the continuation phase and AID-AID using AID for 24 weeks during the initial RCT phase).. The adjusted difference in TIR between these groups was 1% (95% CI, -4 to 6; p=-0.67). There were no glycemic outcome differences between those using the two different study pumps (n=69, which was the SAPT-AID user group and 18 AID-AID participants who switched for continuation; and n=25, from the AID-AID group who elected to continue on the pump they used in the primary outcomes phase).

In the initial primary results (first 24 weeks of trial comparing the AID group to the SAPT group), there was a 14 percentage point difference between the groups. In the continuation phase, all used AID and the adjusted mean difference in TIR between AID and the initial SAPT results was a similar 12.10 percentage points (95% CI, p<0.001, SD 8.40).

Similar to the primary phase, there was no DKA or severe hypoglycemia. Long-term use (over 48 weeks, representing 69 person-years) did not detect any rare severe adverse events.

CREATE results from the full 48 weeks on open source AID with both SAPT (control) and AID (intervention) groups plotted on the graph.

Conclusion of the continuation study from the CREATE trial

In conclusion, the continuation study from the CREATE trial found that open-source AID using the OpenAPS algorithm within a modified version of AndroidAPS is efficacious and safe with various hardware (pumps), and demonstrates sustained glycaemic improvements without additional safety concerns.

Key points to takeaway:

  • Over 48 weeks total of the study (6 months or 24 weeks in the primary phase; 6 months/24 weeks in the continuation phase), there were 64 person-years of use of open source AID in the study, compared to 59 person-years of use of sensor-augmented pump therapy.
  • A variety of pump hardware options were used in the primary phase of the study among the SAPT group, due to hardware (pump) availability limitations. Different pumps were also used in the SAPT-AID group during the AID continuation phase, compared to the pumps available in the AID-AID group throughout both phases of trial. (Also, 18/42 of AID-AID participants chose to switch to the other pump type during the continuation phase).
  • The similar TIR results (14 percentage points difference in primary and 12 percentage points difference in continuation phase between AID and SAPT groups) shows durability of the open source AID and algorithm used, regardless of pump hardware.
  • The SAPT-AID group achieved similar TIR results at the end of their first 6 months of use of AID when compared to the AID-AID group at both their initial 6 months use and their total 12 months/48 weeks of use at the end of the continuation phase.
  • The safety data showed no DKA or severe hypoglycemia in either the primary phase or the continuation phases.
  • Glycemic improvements from this version of open source AID (the OpenAPS algorithm in a modified version of AndroidAPS) are not only immediate but also sustained, and do not increase safety concerns.
CREATE Trial Continuation Results were presented at #EASD2022 on 48 weeks of use of open source AID

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

by Dana Lewis

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

by Dana Lewis

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.

I went down a new rabbit hole of research and most articles were publicly accessible

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

by Dana Lewis

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.)

    Emergency backup carbs maybe don't need to be 100g worth

    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.

Graves’ Disease, Subclinical Hyperthyroidism, and Everything I Have Learned About It (So Far)

by Dana Lewis

TLDR: I have newly diagnosed Graves’ Disease, I have associated eye stuff (called “Graves’ orbitopathy” or “Graves’ ophthalmopathy” or “thyroid eye disease”), subclinical hyperthyroidism, and a new learning curve. Below is what I’ve learned so far and what I’m still exploring.

As a person with type 1 diabetes (T1D) – which is an autoimmune disease – I am screened yearly for various high-risk related conditions. For example, celiac disease and thyroid issues, because those are fairly common in people with type 1 diabetes. I already have celiac disease (developed ~6 years after I developed T1D), but we have continued to screen every year in my annual blood work for thyroid markers, usually by screening T4 and TSH. Occasionally, T3 and/or TPO antibodies are also screened.

I remember vividly the chortle that my prior endocrinologist made after we diagnosed my celiac disease in college, probably in response to my comment about being frustrated of having “another” thing to deal with in addition to T1D. He chortled and said something like “once you have one (autoimmune thing), you’re likely to have two. Once you have two, you’ll be likely to have three.”

I didn’t like it at the time, and I don’t like it now. However, he’s not wrong. When your immune system has a little extra kick in it and you develop one autoimmune disease, the rates of having another autoimmune thing are increased. Thus, the typical yearly screening in T1D for celiac & thyroid.

I went 6 years between T1D and celiac, then almost 12-13 years to discover I now have exocrine pancreatic insufficiency (EPI). That’s not necessarily an autoimmune thing but may be a side effect of long-term T1D. Regardless, I was still thankful for the long period of time between T1D and celiac, then T1D+celiac and EPI. I was assuming that something else was coming eventually, but that I’d likely have a few years before the shoe dropped.

Nope.

I wasn’t terribly surprised when I scheduled my annual endocrinology appointment and did my annual blood work to find that one of my thyroid values was off. Specifically, my TSH (thyroid stimulating hormone) was low / below normal range. However, my T4 was smack dab in the middle of normal range. I got my blood work back Tuesday and waited for my virtual appointment on Friday to discuss in detail with my endocrinologist.

Since I’m me, I was curious about the interplay between normal thyroid levels (T4, and I suspected my T3 was likely still in range) but a low TSH value. What did that mean? General consensus seems to define this as “subclinical hyperthyroidism”. It’s not always treated, unless you are older (>65), have osteoporosis or heart disease, or TSH levels are <0.1.

I’m <65, don’t (as far as I know) have osteoporosis or heart disease, and my TSH levels are between 0.1 and 0.4, which is the low end of the normal range. So general treatment guidelines (see this example from the AAFP) suggest treatment isn’t necessarily warranted.

However…there’s more information that factors into the decision making. First, I had my last annual eye exam in October. All was well. Yet in November, I developed really gritty, dry eyes and went in for an appointment. I was diagnosed with dry eyes (gee, thanks!) and recommended to use gel drops at night before bed and regular eye drops during the day as needed. I did end up needing eye drops several times every day.

Then at the end of December or early January, we realized I had exocrine pancreatic insufficiency (EPI). I had been wondering if my dry eyes was related to the lack of digestion and absorption of nutrients, which also influences how my body uses the water content from food. It did seem to get a little better in the following months, because while I still needed the eye gel at night, I eventually moved to several days a week where I didn’t seem to need the eye drops during the day – yay!

However, in February and early March, I started to physically notice a shift in my resting overnight heart rate (HR). My Pebble 2+ HR watch and my Oura ring, both of which measure HR and heart rate variability (HRV), confirmed that both metrics were getting worse. I had a slowly increasing overnight HR and associated decrease in HRV. I am used to fluctuations, because the intensity of my ultrarunning can also influence HR the next day as a signal for whether my body has recovered yet or not. But instead of a day or two of increased numbers, I had an increasing trend line over several weeks, and it started to physically become bothersome. I actually raised the idea of getting my thyroid blood work done early this year, and was about to request the lab work, when after ~6 weeks or so the trend seemed to reverse and things (HR-wise) went back to “normal” for me.

Then I broke my toe in July and the same thing happened, but I chalked it up to sleep disruption from the pain and recovering from the fracture. My HR was continuing to rise even as the pain subsided and my toe was clearly healing. And looking back at my HR data, I can see it actually started to rise at the beginning of July, about two weeks before I broke my toe, so it’s not solely influenced by my broken toe.

As a result of these HR increases (that are noticeable and bothersome because I’m also not sleeping well at night and I physically feel the higher HR during the day), and the ongoing dry/gritty eyes, I suspected that the cause of my “subclinical hyperthyroidism” was Graves’ disease.

I’ve seen estimates that ~30% of people with Graves’ disease have what is called “Graves’ orbitopathy” (and other estimates suggest 20-50%, like this one), so the combination of my ongoing eye symptoms and the low TSH suggested that further lab work assessing various thyroid antibody levels would be able to confirm whether Graves’ disease was the likely source of the subclinical hyperthyroidism.

Therefore, I wasn’t surprised during my virtual visit that my endocrinologist ordered additional labs (repeat of T4 and TSH; adding in T3, TPO antibodies, and TSI (Thyroid Stimulating Immunoglobulin), Thyrotropin Receptor Ab, and Thyroglobulin Ab). Treatment plan, if any, would be based on these results.

I managed to get in that (Friday) afternoon for the repeat lab work, and my results started trickling in by the time I woke up Saturday morning. First, T3, T4, TPO, and TSH came back. T4 was still normal; as I expected, T3 was also normal. TPO antibodies were high, as expected, TSH was still low, as I expected. Saturday night, Thyroglobulin Ab came back high, as expected. Monday, TSI came back high, as expected. Tuesday, my last test result of Thyrotropin Receptor Ab came back, also high as expected.

The summary was: all antibodies high; TSH low; T3/T4 normal.

My endocrinologist messages me Tuesday afternoon confirming mild Graves’ disease with subclinical hyperthyroidism.

The challenge is that I have normal T3/T4 levels. If those were high, we’d treat based on those levels and use those levels coming back into normal range and any change in antibody levels to assess that things were going well.

But the guidelines for subclinical hyperthyroidism don’t really indicate treatment (except on an individual level based on age, other conditions, or undetectable TSH <0.1, as I mentioned).

However, from what I’ve read, the “eye stuff” seems to be driven not by thyroid levels but by the presence of the increased thyroid antibodies. Treatment would possibly bring down the thyroid antibody levels, which might help with the eye disease progression. But not a guarantee. So my doctor left it up to me to decide whether to treat it or not.

Given the ongoing presence of active eye disease (I haven’t been able to wear my contacts for two weeks right now due to swelling/pain in the eyes, plus itching and redness), and the bothersome heart rate feeling, I have decided to try antithyroid medication. I’ll be on a relatively low dose of an “antithyroid” drug, again with the goal of trying to reduce my antibody levels.

This is why I ended up deciding to write this blog post after all: I have not been able to find any clear treatment guidelines for subclinical hyperthyroidism and Graves’ disease with active eye symptoms (from Graves’ orbitopathy). The literature does suggest that treatment to reduce thyroid antibodies even with in-range T3 and T4, targeting a return to normal TSH levels, may be helpful in reducing Graves’ orbitopathy symptoms. This isn’t well known/established enough to have been documented in treatment guidelines, but does seem to occur in many people who are treated.

So hopefully, anyone else with low TSH and high antibodies suggesting Graves’ disease but normal T3 and T4 levels that suggests subclinical hyperthyroidism and also has other symptoms (whether that’s heart rate or other common hyperthyroid symptoms like increased sweating, shaking, heart palpitations, heat intolerance, sleep disturbances) that are bothersome, now have an example of what I chose, given my situation as described above.

I also thought sharing my question list at different stages for my endocrinologist would be helpful. After I saw that I had low TSH and in range T4, and suspected this meant I had subclinical hyperthyroidism from Graves’ disease, given my eye symptoms, the questions I asked my endocrinologist were:

  • What additional lab work did we need to confirm subclinical hyperthyroidism and Graves’ disease as the cause? What additional information or lab work would give us a treatment plan?As expected, he repeated TSH and T4, added T3 and TPO and the other antibody tests described above: TGAb, TRab, TSI. This would confirm subclinical hyperthyroidism and Graves’ as the likely source.

     

  • Do I need treatment, since the guidelines generally don’t suggest treatment with normal T3/T4 and TSH between .1 and .4?Initially he suggested treatment would be an option, and after the repeat and expanded lab work, left it up to my decision. Given my symptoms that are actively bothering me, I’m choosing to try low-dose antithyroid medication.
  • For hyperthyroidism treatment, beta blockers seem to be part of treatment guidelines for managing symptoms in the short-term, since it takes ~6 weeks for antithyroid medication to show up in lab results. Were beta blockers warranted in my case?My endo typically doesn’t like to prescribe beta blockers unless there are extreme symptoms. He gave an example of someone with a T4 (I think) around 10 and extreme visible shaking. He left it up to me, but his opinion was the side effects, such as lethargy, would outweigh the benefits for mild symptoms, so it is better to treat the root cause. I agreed and did not ask for a beta blocker prescription.
  • I also asked if a DEXA scan was warranted to check my bone density.I haven’t had one in over a decade, and celiac and EPI and now Graves’ puts me at possible higher risk of bone density issues. And, since the presence of osteoporosis changes the treatment recommendation for subclinical hyperthyroidism, we agreed it was worth doing. I have it scheduled in a few weeks. My last one over a decade ago was normal.
  • Finally, I asked about my eye care, now that I have a known eye thing (Graves’ orbitopathy). Do I need to get referred to an ophthalmologist, or can I continue to see my existing optometrist for annual eye care (including diabetes eye exam) and contact fittings?My endocrinologist suggested that my optometrist can continue to manage my eye care, unless something changes significantly. Ophthalmologists, based on his response and my research, seem to handle severe eye disease treatments that aren’t likely warranted for me. I’ll probably need supportive eye care (e.g. gel drops, regular eye drops) for now. However, I’m planning to send a note to my eye doctor and flag that I want to talk about Graves’ eye things and a plan for monitoring severity and progression over time, and check whether she’s comfortable supporting me or if she prefers to refer me to someone else. 


After my repeat labs came back, my endocrinologist messaged me to confirm things and ask if I wanted him to send in the prescription as previously discussed. This exchanged answered the additional questions I had at this time:

  • What is the treatment timeline? How soon might I see results?He suggested repeat labs at the 2 month mark. Ideally, we’d see reduced antibody levels and my hope is that my eye symptoms will have also improved and/or I won’t have any additional weeks without being able to wear contacts.

    Given I have a clear impact to my heart rate, I’m hypothesizing that I might see changes to the trend in my heart rate data sooner than 6 weeks – 2 months, so that’ll be interesting to track!

     

  • Side effects?Common side effects with antithyroid drugs are rash/allergic type response, headache, or agranulocytosis. He told me to discontinue and contact the office if I had any of those symptoms.

    He didn’t go into detail, but I’ve read about agranulocytosis and it seems like if you have a fever and strong sore throat, you need to discontinue and probably will have blood work ordered to make sure your white blood cell counts are ok. Don’t google too much on this one as it sounds scary, but it’s also rare – less than 2% of people seem to have this.

     

  • The only question he didn’t answer was whether it makes a difference in efficacy to take the antithyroid drugs at night or in the morning.Probably, the answer is it doesn’t matter, and whatever time you can take it consistently is best. However, I want to optimize and get the best results from taking this, so I’m bummed that there doesn’t seem to be any evidence (let me know if you’ve found anything in medical literature) suggesting how to optimize timing of it. 

So that’s where I am today.

I now have type 1 diabetes, celiac disease, exocrine pancreatic insufficiency, and Graves’ disease (contributing to subclinical hyperthyroidism). It’s possible that we can fix the subclinical hyperthyroidism, and that I won’t need to be on antithyroid medication long-term. However, the data for those of us with Graves’ orbitopathy isn’t super optimistic compared to those without Graves’ eye disease; so I am managing my expectations that managing my thyroid antibody and hormone levels will be an ongoing thing that I get to do along with managing insulin and blood sugars and managing pancreatic enzymes. We’ll see!