Particularly apropos for Diabetes Awareness Month – a little DAA (diabetes attitude adjustment):
I was diagnosed with type 1 diabetes way back in 1994, when I was only 8 years old. Even as a child, certain words always stuck out to me whenever I was at the doctor’s office or read articles about diabetes.
Sound familiar? For a long time, I’ve been told that diabetes was in my power to control, to beat down into submission so that I could live a long, long life (I’ve always planned to live to be 100 — so far, so good). That if I tested my blood sugar 6 to 8 times a day, counted all my carbs exactly, took my insulin 15 minutes before I ate, exercised at least 30 minutes a day for most of the week, did basal rate checks regularly, and kept meticulous track of all of this to show my doctor at precisely three-month intervals, that I would have an A1C of under 7%, I would never get complications, and life would be, well… perfect.
Well, my friends, I call bull$%&!
I mean, seriously?
First of all, I don’t know very many people who can keep up that kind of regimen all the time. Yes, I do know lots of people who are very committed to their health and they’re able to do most of this stuff most of the time. But life is life! It’s messy, complicated and unpredictable, and I don’t even have children yet! So yes, I would really like to say that I have managed to do all the things I told you, but I haven’t.
Most of the time, I like to think I do all of these fairly well. I rarely miss a blood sugar test. I am pretty keen on measuring my food and referring to nutrition labels, and the weight loss app MyFitnessPal has a pretty decent food directory, too, that I keep on my phone.
Bolusing early is a struggle, mostly because I’m never sure when exactly I’ll eat and it’s more of a comfort thing to wait until the food is in front of me. I don’t exercise every single day — or even every other day — but I’m no slacker and try to do my best. Still, exercise has this funny habit of not quite knowing what effect it wants to have: sometimes I go low (if it’s too close to a bolus of insulin), sometimes I go high (if I’ve disconnected from my pump for too long) or I stay stable (because the Exercise Gods are pleased with me that day).
Basal rate checks are a pain in the rear to do and I’ve lost track of the number of times I’ve told my endo that I will definitely do it before my next appointment. And that whole logging thing? It’s such an interruption to the flow of my day that 17+ years into my life with diabetes, I still haven’t quite figured out how to do it for longer than 3 days running.
And this isn’t even including all of the things that just happen to me. Stress? Bounces my blood sugars skyward like nobody’s business. Aunt Flo? I have nicknamed the 300+ blood sugar readings I get once a month as my “Diabetes PMS.” The regular cross-country flights I take? Sometimes even a 160% basal increase isn’t enough to keep me from cresting the bounds of normal blood sugars, and that’s not even counting the so-called food they serve in airplanes and at airports.
Needless to say, diabetes is one of those things in which even if you do the exact same thing every single day — and honestly, who does? — you’ll still find yourself bouncing around at a moment’s notice. For some people, it’s more pronounced than for others. I know lots of people who have a pretty regular routine and have mastered a lot of these minute changes. Other people have a harder time. Because YDMV, right?
But the fact is, I have a beef with the notion that anyone actually controls diabetes. I don’t control anything. I’m not saying I believe diabetes controls me, but diabetes is not known for its listening skills.
I influence my diabetes. And by that I mean that there are a few forces in my life that I have at my disposal to influence my diabetes. The main method is the number of times I test. Testing my blood sugar gives me valuable information that I can use to make decisions about my diabetes. If I don’t know what my blood sugar level is, I’m uninformed about my body at that moment. My broken pancreas isn’t going to do anything to lower or raise my blood sugar, so I have to stay on top of it. I can make the choice to test, or not test.
The second and third ways I influence my diabetes are with the foods that I eat and the insulin that I take. The amount of food and insulin are determined by me. Eating foods that I can measure or calculate carbs are always better options than guesstimating. Eating foods that are lower in carbs makes it easier to influence than with food that’s high in carbs. Knowing what I’m eating helps me know how much insulin to take.
This stuff’s not news to anyone already living with this thing, but I want the world to understand all of this!
And that’s really the end of it. What my body chooses to do with that food is up to my body. What my body chooses to do with my insulin is up to my body. Ever get the feeling you’re dripping saline? Been there. Ever wonder why you suddenly went high after going for a run instead of dropping 50 points? Been there. Ever wonder why that pizza decided to play nice instead of skyrocketing you at 2 am? Been there.
There are a few things that I know I have some say over. But there are a lot of things about diabetes that are a bloody mystery to me. There are countless times where I thought I had “learned my lesson” and fixed whatever issue I had, only to have something else crop up in its place!
So while it’s all well and good to test your blood sugar, calculate your food and take your insulin, please, please don’t tell me I have my diabetes “under control.” I have no such thing. Things might be looking good today, but just call me back tomorrow.