With Twitter as the medium, there’s only so much that can be captured with only 140 characters at your disposal, especially when there are always so many juggling balls aloft. Since it’s mostly intrinsic, these thought processes, I forget what parts are unfamiliar to people who aren’t living with diabetes. After looking back at the Storify-version of my #dayofdiabetes experience, there’s so much there, but at the same time, there’s so much missing.
How can I explain how hard my family has worked to make sure we have insurance coverage? And how the guilt of 16u of insulin left in my pump sometimes forces me to change the infusion set that’s in my skin in order to squeeze out the last of the insulin from a cartridge before changing that part out? Insulin pump site changes aren’t always done “in full,” with the cartridge and cannula changed simultaneously. There have been years in the last two-plus decades where we’ve paid nothing for insulin, and then pockets where we’ve paid the full cost. Knowing how swiftly things would go bad if I didn’t have access to insulin is humbling.
Or the guilt that comes with this kind of mistake. I very rarely forget to bolus for the food I’m eating, but that day, the toddler wolfed down her lunch and then was ready to bolt outside and play, and as I was cleaning up the neglected turkey and cheese sandwich, I polished off the second half of it. And then promptly forgot to bolus. “Frustrated” doesn’t really begin to touch the rage and guilt that sets in at this point. I hate that there is so much about diabetes that remains out of my control, but when I can pinpoint exactly where my day went off track and it’s the result of something I forgot to do? I have a hard time with that. The guilt that ends up folded into so many parts of the diabetes decision making process can be intense, and relentless. “I’m high because I was stupid and forgot to bolus for something that clearly carried a pile of carbs.” If it were anyone but me, I’d tell them to just correct the blood sugar and try to move past the guilt part – “There’s no point in feeling guilty! That just adds to feeling rotten. Correct and move on. Keep trying your best.” – but I’m not able to take my own advice.
It’s not simply guilt that’s hard to capture; sometimes it’s hard to really explain why a moment might make me so freaking proud. Like the fact that a gross high blood sugar derailed me for a couple hours, but I still made exercise part of my day. Exercise used to be something I actively (ha?) avoided, but slogging my way to the gym even though I felt crummy, and then leaving feeling better, and empowered, and more in control makes me feel proud. It’s not a big deal, and it’s not a victory that anyone else would notice, but it was a good moment for me.
Same with graphs like this. I have worked hard to make sure my overnight basals are solid, and that I’m able (for the most part) to go to sleep at an in-range blood sugar and wake up in the same in-range ballpark. This isn’t an accident – this is a most intentional moment. It’s hard to capture why a Dexcom graph that’s between the lines matters so much because it seems like it’s the result of a block of time “without incident.” It’s hard to explain how much work goes into keeping these moments as incident-free as I can manage.
A day with diabetes looks a certain way, all tucked into Twitter with a neat little hashtag. But it’s hard to capture what we really do every day, as PWDs or caregivers. Outside of this DOC-bubble, people wouldn’t understand high-fiving over a blood sugar result of 180 mg/dL (but did they know you were 230 mg/dL an hour earlier?). Or why a person with diabetes would eat sugar tablets (but did they know your blood sugar was 34 mg/dL?). Or why a “sugar-free” pie still requires carb counting and insulin (“But it’s sugar-free!”).
Participating in #dayofdiabetes was eye-opening for me, because I realized I didn’t have enough API to handle updating Twitter as much as I needed to, to account for all the times diabetes crossed my mind throughout the day. And then again, I realized how many times diabetes crosses my mind for simply an instant, letting me continue forward in a day that, in reality, wasn’t owned by diabetes in the slightest.