Why I Haven’t Died Yet: My Fifty Years with Diabetes

The following article first appeared on Dan Heller’s substack, Type 1 Diabetes: It’s Not that Simple, which is devoted to serving to non-technical audiences higher perceive sophisticated matters round diabetes, typically with a twist of humor. It’s a free publication that you may join on the location. Dan has had T1D for over fifty years. He has a background in biotechnology and entrepreneurship and has spent a lot of his profession educating and translating technical ideas to college students, buyers, sufferers, and others within the medical ecosystem. 

On April 2, 1973, our household physician knowledgeable us that I had sort 1 diabetes (T1D), so I, a ten-year-old, was going to take day by day insulin injections to remain alive. The excellent news was there would absolutely be a remedy in 5 or ten years!

Many different T1Ds have heard comparable claims once they had been recognized — even to today — which contributes to the operating joke inside the group, “The cure for diabetes is only five or ten years away… and always will be.”

Despite the truth that we’re nonetheless ready for that elusive remedy, the excellent news is that I lived longer than I was speculated to. A literature evaluation of research that estimate the life expectancy of T1D estimated that I would stay to 57.four years.

Yes, I’m nonetheless alive at 60. Or, so I assume. But, how do we actually know? As you ponder that, listed below are a number of enjoyable stats about my fifty years as of April 2, 2023:

  • Total variety of days residing with T1D: 18,262
  • Number of insulin injections: 146,100 (common eight per day)
  • Total quantity of insulin taken: 1.74 gallons (~36 items per day over 50 years: 657,432 items)
  • Total blood glucose meter assessments: 109,575 (1990-2020 / 10 strips/day)
  • Longest consecutive hours TIR (time-in-range): 207 (eight.625 days)
  • Carbs/day: 426g (40 % carbs, 30 % fats, 20 % protein)
  • Exercise: 147 minutes/day (10.8mi/day – operating/strolling/climbing)
  • Highest and Lowest A1c: 7.eight % and 5.5 %, however I recall >eight % within the mid-1980s

why i havent died yet my fifty years with diabetes - Why I Haven’t Died Yet: My Fifty Years with Diabetes

I think about myself in ideally suited well being now (TIR: 95-97 %), however my first 45 years had been removed from spectacular, if not downright self-destructive. Actually, it was as a result of of my poor well being that I figured I ought to in all probability handle the illness higher, particularly because it appears like a remedy continues to be one other 5 or ten years away.

My well being restoration course of started by getting a Dexcom G6 in 2018, which allowed me to trace glucose ranges. Immediately, I noticed optimistic outcomes (see chart). But the CGM alone solely acquired my A1c to six.5 % — good, however I was nonetheless having a lot of hypo occasions (particularly at evening), and my TIR was nonetheless solely at 80 %. My doc instructed me that was fairly good, however the hypos had been simply an excessive amount of.

I began researching medical literature to be taught concerning the metabolic system, with explicit concentrate on the mitochondria, the “engine” that converts gasoline (glucose, fat, and different substrates) into vitality. Understanding how that system is supposed to work helped me higher perceive what to do (and what to not do) when my very own system wasn’t working correctly.

Long story quick: The metabolic system is extremely complicated and surprisingly contradictory to traditional knowledge, which defined lots of misconceptions that I had about T1D administration. While I make no claims to be almost as proficient as scientists, researchers and medical doctors, my objective was to know sufficient to handle my very own illness higher, and I acquired that, plus a brand new perspective on your complete diabetes ecosystem. (My article about that can observe this one.)

While I have “succeeded” by getting my glucose patterns in non-diabetic ranges, the complexity of the illness and the way I navigate it makes it tough to clarify my protocol briefly. I regrettably discover myself saying, “It’s not that simple!” But then I guarantee folks that a remedy is just 5 or ten years away.

That mentioned, I imagine I can scale back my T1D administration framework to those three issues:

Using glucose patterns in CGM knowledge to forecast glucose tendencies permits you to proactively take motion earlier than glucose ranges exit of vary. This does not imply that you need to obsessively watch numbers each second of the day. I look as soon as an hour or two, aside from when I’m monitoring extremes, when I’ll watch extra incessantly. But it’s not nearly watching. You should take motion from the patterns you see — and people you anticipate.

I typically examine T1D administration to driving a automobile: You steer the wheel for the large turns, nevertheless it’s whenever you’re simply going straight, you continue to should nudge the wheel gently this fashion and that, or the automobile will drift. Before you recognize it, fweee! Off the cliff you go. The metabolic system is like that–it might probably unexpectedly drift this fashion and that, so it’s worthwhile to sense these actions and react with counter responses, simply to remain on observe. If you misjudge the street, or react too late, off the cliff you go.

The downside for T1Ds is that we will’t simply react to readings we see “right now,” except obligatory, in fact. The downside is that any actions we take — particularly when taking insulin — doesn’t take impact instantly. There are all types of roadblocks that decelerate absorption, intervene with metabolization, and plenty of different regulatory components that make it essential to take motion forward of time, earlier than these issues occur. And that’s the place forecasting is important.

Learning to grasp dosing insulin or calibrating for meals is an artwork, not a science, and it requires realizing what you’re going to do inside the subsequent few hours and planning forward. Whether consuming meals, exercising, sitting round, driving, writing, sleeping, or anything, one has to discover ways to dose (each insulin and carbs) upfront of these future occasions, and anticipate volatility. This requires constructing empirical experiences and personalizing your patterns.

It takes time, for positive, which is why kids and adolescents discover it so tough. They don’t have years of expertise to attract upon, plus their our bodies are altering, and mental immaturity makes it laborious to concentrate on such a posh system. What they’ve on their aspect, nevertheless, is youth. By the time they attain their mid-20s — you recognize, in about 5 to 10 years — issues are inclined to stabilize, each bodily and mentally.

(I write concerning the three phases of T1D administration right here.)

You’ll discover I didn’t point out diets. Many T1Ds imagine that low-carb or high-carb diets are the best way to manage glucose, however once more, it’s not that straightforward. Far extra parts are concerned than simply that, and whereas a wholesome weight-reduction plan is important to anybody’s well being, the key to managing glucose is the fine-tuning forecasting mannequin described above.

That, and train, so let’s go there.

Nothing is best than train for folks with diabetes, or anybody else for that matter. Even simply strolling 15-30 minutes after meals is an effective way to stabilize glycemic variability, enhance insulin sensitivity, and burn off just lately consumed glucose. If you improve to a faster tempo, or begin jogging, climbing or biking, your metabolic health improves, additional optimizing metabolic effectivity.

Here’s the snag with train: The metabolic system is adaptive, in order you go from restful to energetic over a interval of weeks and months, the metabolism adjusts to optimize effectivity. As your metabolic fee will increase, glucose and insulin will each metabolize extra shortly and effectively, so insulin-to-carb ratios will change, and whole insulin wants typically drop.

This could sound sophisticated — as a result of it’s — nevertheless it’s not inconceivable. The prime deterrent for a lot of T1Ds is hypoglycemia, which occurs as a result of they don’t anticipate whole insulin necessities to drop a lot, or the truth that when insulin is required isn’t because it was with out train. One ought to attempt to discover clinicians expert in T1D train, however such specialists aren’t solely laborious to search out, insurance coverage doesn’t typically cowl them.

The level being that the trouble is value it, which brings me again to essentially the most primary type of train: Walking. Just a bit of bit goes a protracted, great distance. Go on–take a brief stroll proper now. I’ll wait.

And we’re again! Now that you just’re feeling higher, let’s discuss your emotions.

Stress is the T1D’s worst enemy. It will increase cortisol, which induces insulin resistance and indicators the liver to provide glucose (neoglucogenesis), each of which make blood sugar tougher to stabilize. We all know lowering stress isn’t simple, however make a psychological bookmark on this: One can’t get T1D below management except stress is decreased. Note that train reduces stress and the unpredictability of untamed blood sugar swings.

Sleep can be extremely important. A paper in The Lancet confirmed that glucose ranges rose, alongside with insulin necessities and stress hormones, in non-diabetics disadvantaged of relaxation. The paper reveals graphs of glucose ranges from these with out sleep, and so they look as unhealthy as many T1Ds. If you’re a T1D with out getting correct sleep, self-management can be fairly difficult.

Mental well being is not only about stress, however motivation. You should need to be wholesome, and that can in all probability run counter to your pure needs or tendencies. Clinical melancholy is kind of excessive within the T1D group as a result of suggestions mechanism of poor management and insecurity that it can be managed. Getting out of that loop is the primary order of enterprise.

This is the place psychologist Brian Little’s idea of “free traits” is available in. By “free,” he’s referring to traits that will embody sure proclivities, reminiscent of introversion, attraction to dangers, or predisposition to sweets, however they’re “free” in that they are often curtailed when one thing is necessary to you — a “core project.” If you completely love meals a lot that you’re keen to let your glucose ranges shoot into the stratosphere, then discover another non-T1D-related motivation for not eager to let that occur.

My “core project” is my need to someday be capable of choose up future grandchildren. I don’t need to blandly have a look at them from a hospital mattress with tubes maintaining me alive as drool drips from the nook of my mouth. What an terrible future that might be. I need to stay very wholesome, simply as I am proper now, and be prepared for when these grandchildren come screaming into my home yelling, “Grampa!”

I realize it’ll occur too, as a result of my son continues to vow me that it’s solely 5 or ten years away.


Miller R et al. Improvements within the Life Expectancy of Type 1 Diabetes. Diabetes. November 2016.

Reynolds A et al. The Timing of Activity after Eating Affects the Glycaemic Response of Healthy Adults: A Randomised Controlled Trial. Nutrients. November 13, 2018.

Spiegel Okay et al. Impact of Sleep Debt on Metabolic and Endocrine Function. Lancet. October 23, 1999.

Little, B. Personal Projects and Free Traits: Personality and Motivation Reconsidered. Social and Personality Psychology Compass. April three, 2008.

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Read extra about A1c, Dexcom, diabetes and lifespan, diabetes burnout, train, insulin, Intensive administration, low blood sugar (hypoglycemia), low-carb weight-reduction plan, sort 1 diabetes.

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