Diabetes takes up a certain percentage of my brain all the time. However, I’ve had type 1 diabetes for so long now that I have an auto pilot mode. I can be sitting in a group of friends, listening and laughing along with them, pricking my finger for a blood sugar while simultaneously counting carbs and making estimates regarding my activities for the next three hours. That’s what I do ALWAYS. I don’t get a break. I can’t ever stop thinking about what my blood sugar is doing and how food and exercise (yes, laundry is exercise too) will affect my being. So that’s my baseline, all that brain work.
But there are days when the baseline percentage doesn’t even come close to cutting it and then I find myself utterly distracted by diabetes care. Another way to rephrase it is that some days diabetes require much more of my focus.
Sunday was “change” day for my sensor (which usually lasts one week). I woke up, changed the site, and planned for a day of increased calibrations-—a little more attention paid to matching numbers from the sensor to my blood glucose. It also ended up being change day for the infusion set I typically wear in my abdomen. That little cannula delivers insulin from the pump to my fat layer and I have to rotate it every three days. I changed the infusion set around lunchtime and continued on my merry way—-diabetes present but not front and center—-until things went haywire that afternoon.
A really good Sunday afternoon involves coffee and random shopping with a beloved friend. If we can get this time we take it and we make every second count with laughter and conversation. If I could go back to Sunday I’d understand that my CGM, which was refusing to calibrate properly, was taking up a huge percentage of my brain power. At the time I acknowledged that something wasn’t working properly and pushed through our soul-refreshing time anyhow, but I didn’t fully realize how it cluttered my brain and pressed in on our fun time. Usually I can troubleshoot a diabetes issue and in a few hours normalcy will resume. This time I’m looking with more scrutiny and I can see that the last two days have a been a cluster and it affects me.
It’s Tuesday morning now and I feel like I have a minor version of the flu. My head aches. My body is so tired. I feel sluggish and out of sorts and frankly I think I will take a sick day. Because, since Sunday afternoon, nothing has been normal or routine about diabetes in my body. It’s been a bit since diabetes has thrown me this out of whack, but I’ll take in my present reality and remind myself with patience and grace that having a chronic health issue leads to days like this one.
So Sunday night was not really fun. No matter what I tried I couldn’t get my sensor to work properly. I’ve only been relying on a sensor for the past 11 months, so at that point I removed it and resigned myself to poking my fingers for the next 12 hours until I could put a new sensor on in the morning. (Sensor placement isn’t a nighttime activity unless you’re a T1 who doesn’t care about sleeping. Calibrations happen frequently the first 12 hours so you’d get awoken quite often.) The next morning was a brand new day and the new sensor worked and I was back in business. It wasn’t until lunchtime Monday that I questioned how long I had been fighting elevated blood sugars.
Back in business? Not really. My glucoses had been above normal since I changed my infusion set the day before. Again, troubleshooting time. Here’s what that looks like:
PMS elevates sugars. Is is that time of the month?
Stress elevates sugars. Did our weekend travel affect me?
Sickness elevates sugars. Am I coming down with something?
Bad insulin elevates sugars. Was my insulin in the sun while we were driving?
Poor infusion set placement elevates sugars. Did I place it in a scarred spot on my stomach?
Kinked infusion sets elevate sugars. Without x-ray vision I won’t know until I remove the set.
Ticking through that checklist I decided that I’d change my infusion set. It was high time to get those numbers down, I was starting to feel terrible. I didn’t think the insulin had gone bad—and insulin is like liquid gold these days, you don’t want to throw out a good vial—so I marked the box and put it back in the refrigerator to test on another day. I put another infusion set on my stomach, careful to try and get a good spot (which is a crapshoot, but oh well) and within a few hours? RELIEF. My numbers went from sky high to normal and remained there for hours throughout the evening.
Sounds good? Just wait.
My numbers around suppertime were so good and steady that I required very little insulin. Like almost none at times. Every so often the pump would give me the teeniest bit but I didn’t need more until… until I did. My daughter and I went out for pumpkin spice lattes on a cold and rainy night. I paid an exorbitant amount of money for the decaf coffees and a few snacks—and moments later realized they had given us grandes instead of talls. So basically we had vats of sugar. Normally this would elevate my glucoses but I could roll with it. What happened last night was that it completely shocked my system as I had no extra insulin on board.
Also—human error here—I forgot to bolus for the sugar I consumed.
An hour after I crawled in bed I had what I can only call “diabetic thirst.” It’s a thirst level that is unparalleled, unmatched, starvation-thirst. And it’s very familiar to me. I’ve deduced that having high glucoses makes me crave sweetness, too, so what I want in that moment isn’t water—it’s sugar free Powerade. Lucky for me I had picked up some that day (it’s a T1’s BFF on a sick day). I also had a near-crushing headache. Those two symptoms sent up an alert in my brain and I reached for my glucometer. 450. WHAT. I can’t even remember the last time I saw a number that high—it’s been awhile. And to have gone from an 80 glucose to 450 in such a brief amount of time? Well, that’s why I’m feeling like a train hit me today.
I did all the things on my checklist at that point and I did them quickly. Peed on a stick—yup, big ketones staring at me. Dosed a bunch of insulin to bring down the high and to cover what I had consumed. And then, didn’t want to do this one, but I rolled out of bed and began pacing the basement (to get the heart pumping, which will flush the ketones faster and get the insulin working right away) after filling Jeremy in on what my body was facing. He knows how to troubleshoot with me, and also knows how to keep me calm during these high ketone moments (which will send a T1 to the hospital pretty darn fast). I began pounding the sugar-free Powerade and—this is my latest top secret helper in ketone dilemmas—I took half a Xanax. I could write more about the role of meds in treating a chronic illness sufferer’s anxieties, but that would be a post all to itself. Another time perhaps.
After 60 minutes no ketones. Not a trace. I went from a high level of ketones building up in my body due to little insulin on board earlier, to successfully flushing them out. Exhausted I got back in bed and asked Jeremy to wake me in another hour to check my blood sugar. He did. And then he woke me again two hours later to check again. To go from perfect numbers to crazy high numbers—with a giant dose of insulin thrown in—often means one thing: you’ll drop low in the night. Since I don’t want to die and Jeremy still wants me around, having him check on me makes sense. My numbers came down beautifully in the night, but again I found myself in the low insulin swing this morning. This up and down of glucoses, of insulin, is what has left me wiped out. Say nothing of the lack of solid sleep.
Damn you, diabetes. You are a prickly SOB.
I look around me and am amazed that most of the world eats food and never thinks of carb counts. Most of the world can go for a run and not fear death on the other side of it. If I didn’t know better I’d be mad about all this, but here’s what I know: everyone has something hard. I see you guys going through cancer (and Liv and I prayed for you this morning on our school drive). I see y’all with the broken marriages and kids who are hurting inside. I see you guys with depression and you guys with anxiety and you guys with mental illnesses too many and too confusing to name. I see you in the quiet gatherings fighting addictions and I know it’s a daily, moment-by-moment fight as relentless as diabetes. I see you with the existential crises that feel weightier than health issues. I see you with the unfulfilled longings and the daily aches. And I see you, too, my fellow humans who are fighting chronic pain and disabilities you’ll never be free from this side of glory.
This is my story, but it’s not the only hard thing. It’s my hard thing—one of my hard things—and boy am I grateful that it’s not always this hard either. Now if you’ll excuse me I’m off to check my blood sugar and lay around like a slug.
