Hey there, Diabetes Community!

Welcome back to another round of our weekly advice column, Ask D'Mine, hosted by veteran type 1, diabetes author and educator Wil Dubois.

You may remember that last week, Wil offered his thoughts to reader Frank on "chinning up" when rough times hit with diabetes. This week, Wil shares some thoughts on Part 2 of Frank's question, re: riding the endless sea of frustration that is "brittle diabetes."

Please let this fellow PWD who writes in today know what you think and show him some D-love in the comments below!

 

{Got your own questions? Email us at AskDMine@diabetesmine.com}

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Frank, type 1 from Maine, writes:  I'm trying to live my life. I retired from teaching English and GED one year ago, earlier than I had intended because my health issues had made effective teaching impossible. So I took a hit on my pension. But that's secondary; of main concern is the exhausting, debilitating goose chase with blood glucose that I go through now, an Alpinist's experience of 12-hour struggles with highs followed by 12-hour struggles with lows. I have been unable to formulate any clear relationships between carbs and insulin despite the continuous opportunity to observe what happens to me with my CGM. I've had 70 doctor's appointments in an effort to understand my crazy diabetes. I tried "the pump" twice, once in the eighties, and again in 2010, and found it no help. I've had seizures and been unconscious several times, and only my wife's alertness and ability to use glucagon has kept me alive. I count carbs and have tried an endlessly flexible variety of sliding scales and Lantus administrations. Yesterday was a typical cluster of woe, and here I am in the vampire hours, typing and dehydrated, drinking Stevia-sweetened lemon juice in water, and fighting despair. This isn't a rare event. I'd appreciate any possibly helpful comments, and I thank you for your interest.

Wil@Ask D'Mine answers: It's a pity we can't sit down together, I do so love a good clinical challenge. But, that said, I very much doubt I'm smarter than 70 doctors, so it probably wouldn't help. Still, my "diagnosis" is that you have "brittle diabetes," which isn't supposed to exist anymore. So we need to talk about that, and I want to warn everyone in advance that I'm really pissed off about the modern trend of denying the existence of brittle diabetes.

Diabetes Peanut Brittle

For those of you out of the loop, "brittle" is an old-fashioned word for diabetes that's almost impossible to control despite the best efforts. Nowadays, medical pros prefer to blame the patient when things go wrong, rather than accept the possibility there might be a flavor of diabetes that can't be controlled, and accordingly the use of the word "brittle" has been abandoned; except in some circles in which there's a school of thought that brittle diabetes is essentially a mental illness, not a metabolic abnormality. That pisses me off even more.

Now, I'll concede that in some cases that might have been viewed as brittle in the past, the PWD indeed wasn't trying very hard.

And a few folks may be screwed in the head. But not all. I've seen plenty of brittle diabetes in people who have their act together. Hell, I'm borderline-brittle myself and I'm pretty sure I'm not mentally ill. Well, no more so than anyone else, anyway. A case could be made that the whole human race is 'effed in the head...

Anyway, how is this unicorn of brittle diabetes defined? My favorite classical definition is from Marie-Christine Vantyghem, who won my heart by starting off her definition with the line: "Type 1 diabetes is an intrinsically unstable condition," then goes on to say, "However, the term 'brittle diabetes' is reserved for those cases in which the instability, whatever its cause, results in disruption of life and often recurrent and/or prolonged hospitalization." Then she bums me out by offering her expert opinion that prognosis for the brittle is poor, with shortened life expectancy. Ugh... Back when brittle was king, and was taken seriously by the white coats, it was estimated that 1 in 3,000 type 1s suffered from it.

But I prefer a more functional definition. Brittle, in my book, is a flavor of diabetes characterized by a vexing propensity to get different results from applying identical actions. If you do the exact same thing under the exact same conditions on two seemingly identical days, and one time you go high and the next time you go low, then—paraphrasing comedian Jeff Foxworthy—you might have brittle diabetes.

Thinking more deeply, there are probably factors, not easily detected, that actually make these seemingly identical days less alike than they appear to be on the surface. The barometric pressure is different. The humidity isn't the same. There are subtle changes in the flow of hormones deep in our blood. Subconscious stressors vary. How much sleep we got the night before and its quality are never the same. Really, there's no such thing as two identical days. Our universe is so complex that days are like snowflakes: No two alike.

People like you and me—and 1 in 3,000 others—seem to be hyper-responsive to the little bits of chaos embedded in the environment around us.

Now what? How the f--- do we proceed? We are awash in data with our CGMs and our carb counting and insulin dosing as it is. Can we really hope to log barometric pressure, humidity, hormones, stressors, and all the other snowflakes that make up the day? Even with the NSA's cellphone-hacking supercomputers, I doubt we could "crack the code" that would allow us to bolus for brittle. So what to do?

I've read your letter, which we had to edit down for space, carefully. You've been told: eat low-carb. Eat lots of small meals. Avoid stress (yeah, right). Try a pump. Try another insulin. Avoid stacking up too many changes at once. Give corrections and boli time to work. Oh, and my favorites: Avoid gluten, take an antidepressant, and call your 70 doctors in the morning. Well, you've been told to do all these things before, and have tried them all, but nothing works because you are brittle. It's incredibly frustrating because there's no fix. No plan, no formula, no "just do this" and it will all be fine. But that doesn't mean there's not a way to deal with brittle. There is.

The "cure" for Brittle is Artificial Homeostasis.

We all know what homeostasis is, right? The ability of a (normally functioning) body to maintain temperature, blood pressure, blood sugar, and all the rest. But the body maintains this stable state by using a dynamic process of constant adjustments. Hormones and counter-regulatory hormones dance in a divinely complex ballet. It is adjustment, and counter-adjustment, and counter-counter adjustment. Homeostasis is actually a blur of motion like humming bird wings. The hummer stays in one place in mid-air using a myriad of movement.

So how do you hover your brittle diabetes? Simply by living in the moment.

The CGM is your best friend. Ride the waves on the monitor like a surfer. When you're going up, chase the damn curve with frequent little half-unit doses of insulin until it flattens out. When you are going down, drown the curve one Skittle at a time (Attention flamers: Yes, I know I trashed the use of Skittles for lows a while back, but I'm taking poetic license here.)

I would lean toward smaller, more frequent meals if I were you, as they require less insulin. Again, the goal is lots of small changes to keep one step ahead of the chaos that is lurking all around you.

Will you ever have perfect control? Nope. Not gonna happen. But like a drunk driving down a curving road with a cliff on one side and the ocean on the other, if you keep your weaving between the shoulders, you'll get to your destination safely, because there's no risk of a head-on collision on this road.

As you noted, diabetes is a one-way street.

This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.

 
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This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.