Never Enough: The struggle for perfect blood glucose

I don't think I've ever met a person or family living with type 1 diabetes who feels like they are doing "enough" to manage their type 1 diabetes. In fact, when you ask people how they are going with their type 1, you can almost feel the guilt radiating off them.

Over 40 and still turned into a guilty puppy the second someone asks about my type 1

How did we get here? How did we get to a place where people living their lives with the world's most complex self-managed disease feel like constant failures? Where no matter how many goals they are kicking, it's still not enough? Why can a visit to the diabetes clinic still make me feel like a naughty schoolchild about to be scolded by the Principal?

I firmly believe it is because no one ever talks about "good enough" with type 1 diabetes. In my experience, we don't even really talk about "good". Wherever you are is "bad", and you "should be doing more". Talk about a recipe for misery.

Why are we constantly both flogging ourselves for "better" and being flogged for not being "better" in the eyes of the health system? Well, here's some truth bombs coming at ya.

1. We don't know what good enough is - From a research perspective, we don't actually know what "good" management is. Sure, we've got some evidence about HbA1c and Time in Range (TiR) and the impacts on big-ticket complications like kidney failure. But we don't actually know exactly what a "good enough" blood glucose looks like. We can't tell you "do this and you will avoid diabetes complications". All we can say is "do this and we can reduce your risk of some of the diabetes complications". Inspiring, huh? And when the message is always "well, better than where you are now is always better for you", how can you not feel like whatever your current level of control, it isn't good enough?

2. Sometimes, we've got too much data - I love CGM and you can pry that technology from my cold, dead hands. But it's a LOT of information, in your face, all the time. And we don't know how much of it matters. I have to watch, in graphic detail, how much "damage" I've done when I mess up a carb-count. Does it matter? WE DON'T KNOW! How many times can I make that mistake before it does some damage? WE DON'T KNOW! And I get even more data than I know what to do with. Thanks for showing my standard deviation of blood glucose Dexcom, but I'll be damned if I know if it's good or not.

3. We want to fix it and we can't - Being a health care professional supporting people with type 1 must suck sometimes (suck it up though, type 1 is worse) because our diabetes team want to fix your problems and they can't. They want to give you a magic pill, and they can't. They aren't really taught how to help you decide when you're at "good enough"; they're trained to fix stuff. That's great, but it means that no matter how you're going, no matter where you are at, no matter how much burnout you're feeling, they will almost certainly want to tweak something, adjust something, DO BETTER. And the end result is we get the message loud and clear: whatever we're doing isn't good enough, and we have to do better. OUCH.

4. We don't control all the levers, not even close - I want you to really stare at this diagram of all the known factors that influence blood glucose:

5. 

   Thanks to the amazing DiaTribe team!

   You CANNOT control all of these levers all of the time. I repeat - YOU CANNOT CONTROL all of these factors. Some of them, you can't even see. Remember, your insulin requirements can be DRAMATICALLY altered by things like sickness, stress, sleep and more. You have to cut yourself some slack because it is literally impossible to manage all these things all the time.

So if perfection is impossible, and there's no simple answer to what "good" looks like, then what do we do?

Here, I want to introduce you to the important concept of good enough and its related-but-equally-important friend, good enough for right now.

We live with type 1 every day, every moment, whether we like it or not. We are constantly making decisions about what is "good enough" blood glucose control in a given moment. We're trading off blood glucose control against so many things. Things like:

• Risk to our health, both right now and in the long term.

• Practicality - what can I actually do right now?

• Flexibility - the ability to make decisions that don't necessarily fit with an ultra-strict diabetes management regime.

• Life goals -getting done the things we want to do and living the life we want to lead.

• Being present - just being fully engaged with people or a situation without 90% of your brain worried about your BSL.

• And so much more! I trade off blood glucose control against laziness when my high alarm goes off at 2 in the morning - that's just real life. And the bed is soooo cosy.

Sorry, perfect BSLs, I've got a life to live here.

But what's the answer? What should I be aiming for?

GOOD ENOUGH! I thought I was clear about that... ahem

But what is good enough? Ah, that's something only you can answer. But you can answer it. You can make the decision. It doesn't matter what other people think, it's your life to lead. And your definition of good enough is allowed to change.

That's right, there is no mystical perfect blood sugar. What there is, is the permission to decide for yourself what you will consider good enough for the moment.

Embrace the imperfect. And go live your life!

Benjamin

"The Diaboss"