Beyond Food, Exercise, and Insulin: Embracing the Complexity of T1D
My blood sugar’s rising and I don’t know why. I was in range before I ate that breakfast sandwich. I carb-counted. I pre-bolused. Everything. Now it’s 15 mmol/L+, climbing fast.
How did I get here? Why is my CGM reading 16.7 mmol/L with a glaring red arrow? Maybe it’s another site issue like yesterday? Maybe it’s the heat? Stress? Some strange echo of yesterday’s unrestrainable high (due to said site issue)… is that even a thing?
I’m going to give an extra correction and see what happens. I’ll keep you posted.
When I was diagnosed in 2005, I was taught that blood sugar is affected by three main factors: food, exercise, and insulin. Other factors which could impact my blood sugar were alluded to, but not what their impact was or what to do to mitigate their effects. The focus was on simplicity: food, exercise, insulin, repeat.
I used to think I had ‘weird diabetes’: random lows on days without exercise or highs that just wouldn’t quit. Strange patterns in blood sugar readings would (and still do!) appear and disappear without changes to my management. My carb-counting stayed consistent, exercise was as regular as my schedule permitted, and neither my correction nor my insulin:carb ratios changed. Yet my blood sugars did, seemingly without reason.
I was plagued by the ‘why’. Was it my fault? Guilt is a default response for a lot of us living with type 1 diabetes. Feelings of guilt led to recurring T1D burnout, and I began to question how mismanagement could truly be my fault.
“I’m doing everything that science has equipped me with to succeed… Maybe science hasn’t yet caught up to my specific flavour of diabetes? The trio of food, exercise, and insulin work perfectly for everyone else*, so it must not work for me because I have ‘weird diabetes’”.
*Spoiler: I didn’t really know many folks living with T1D until I started working with DHF…
I know this is an absurd take to settle on. When your lived reality doesn’t match the reality you’ve been taught exists, you’ll tell yourself any story which simplifies that cognitive dissonance. Even if it makes you feel the fool to type out and publish on the internet.
Oh, I’ve leveled out around 17.2 mmol/L.
The reality of type one diabetes ends up being far more complex than I imagined. I recently discovered Diatribe’s List Of 42 Factors That Affect Blood Glucose. 42 FACTORS! For a single blood sugar reading!! That’s so many factors.
Diatribe’s handy infographic shows that stress raises your blood sugar, as does dehydration. Factors like meal timing, decision-making biases, and menstruation all contribute to both raising and lowering glucose levels, whereas certain factors such as altitude or ‘personal microbiome’ are marked only with a “?”.
All my random patterns suddenly made sense. They weren’t happening because I was doing everything wrong, and they weren’t indicative of some new ‘type x diabetes’. They’re the result of a vast array of factors feeding into and off of each other.
8.4 mmol/L. Straight down arrow. And I’m still lowkey fixating on the whys and hows. Did I stack insulin with my correction? The heat? The walk I took? Which of the 42 factors do I blame?*
*All of them likely, or at least too many for it to really make a difference…
I’d like to summarize some reflections on why my blood sugar is what it is today and every other day:
1. Diabetes is complicated
I used to call it “weird diabetes”. Now I just call it my diabetes. The chaos suggested by DiaTribe’s list of 42 factors is weird, or at least stranger than the traditional model taught in most clinics. And it gets even more complicated.
Everything I’ve heard and read suggests that stress raises blood sugar. But when I’m stressed, my sugar plumets. I don’t know if any T1Ds out there share this experience, and it makes diabetes feel especially weird when I seem to be the only one experiencing it in a certain way.
But what’s my “stress lowers my blood sugar” is another person’s “extreme heat keeps my blood sugar from going above 8.2 mmol/L” or “chocolate doesn’t raise my blood sugar, so it can’t be used to treat lows”. These anecdotal and highly individual experiences speak to the strangely varied and uniquely personal tapestry that is the collective T1D experience.
2. Community education is key
Conventional diabetes education has a few speedbumps. As a patient, it can feel like my health care team assumes that “someone must’ve already taught him this” when no one did. I remember once developing a pattern of dropping suddenly and drastically low. My diabetes educator asked about exercise, and I said I hadn’t been to the gym since yesterday. That’s when I learned – some 10+ years post-diagnosis – that physical activity can lower blood sugar up to 24 hours after exercise. No one knew I didn’t know this, not even me.
This is why resources like DiaTribe’s are so vital. It’s where I first learned about glucotoxicity – a sort of ‘feedback loop’ where high blood sugars beget high blood sugars. This makes intuitive sense, but I didn’t learn about it through my formal T1D education.
I’ve found it helpful to balance that formal education with peer-to-peer, community based learning. I’m better able to understand my own body and management by sharing stories, asking questions, and filling knowledge gaps with crowd-sourced wisdom and experience. Whether it’s sharing resources in an online space, asking and answering questions on Discord, or meeting other people living with and around T1D, I’m thankful for the grassroots community efforts and spaces I’ve found.
3. 42 Factors are a lot of factors
It’s fantastic to be able to contextualize our blood sugars and to wonder at the complexity of our bodies. But it can also be overwhelming. The trinity of food, exercise, and insulin persists because it’s simple. But – to quote DiaTribe – “what happens to my blood glucose after five hours of sleep, a low-carb breakfast, lots of exercise, high stress, and a big cup of coffee?”. It’s important to acknowledge the scope of factors at play, because ignoring them and focusing on a simpler equation only ever leads to disappointment and frustration. But it’s also daunting and can prime a person for burnout.
The last thing I want you to take away from these musings is any sense of existential hopelessness (the “H” in DHF stands for HOPE, after all). I prefer to reframe these feelings of uncertainty as feelings of freedom. I’m not off the hook entirely – I can still control aspects of these influences, but it’s absurd to imagine controlling this vast matrix of factors. I actually laugh out loud when I imagine myself somehow puppeteering this mess of strings, and I invite you to laugh too! Next to insulin, it really is the best medicine.
With all these factors at play, the fact that I’m alive and well shows I must be doing something right. That’s all the hope I need.
Final blood sugar update: 9.1 mmol/L with a flat arrow. Upper end of high, but staving off a crashing low. 3.3 units and some emergency carbs on board. It’s anyone’s guess where I’ll go next, and I can think of at least 42 reasons why I’ll go there.
Now it’s time for lunch.
About the Author
I’m Nathaniel Kinghan, and I’ve been living with type 1 diabetes since age 11. I work with Diabetes Hope Foundation as a Program Facilitator for the PEP Talks Caregiver program and recently launched the Free To Be program – a creative and communal space for youth living with T1D.
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