The topic for this month’s Diabetes Social Media Advocacy (DSMA) blog carnival kind of made me do a double-take. Under the auspices of “what you should know about people living with diabetes,” the specific prompt question is:
What types of decisions and frequency of diabetes-related decisions do you make in any given day?
Uh… to quote a recent source here at the ‘Mine: what the frappuccino?
To me, living with diabetes is all about decisions, decisions, decisions — loads of micro-decisions, to be exact, that we have to make all day, every day. Want to eat the second half of that apple? Wait, how much did you dose? What? We’re walking now? Well… how many blocks are we going? Feeling slightly light-headed?… BETTER DO SOMETHING ABOUT IT.
I like to explain life with diabetes to healthy people this way: “You know how you can eat what you want, when you want to, and do exercise or even mild physical activity without really thinking about it? Well, it doesn’t work that way for people on manual pancreas. We have to think about and plan for every little move we make throughout the day! And just taking your medicines properly isn’t the half of it. This is not an exact science! There are constant choices, i.e. educated guesses going on here.”
When I wake up in the morning, I have to think about what I’m going to eat for breakfast, and how soon. If I opt for that extra cup of coffee with milk, I have to think about whether my current insulin dose will cover it, or whether I need more without the risk of “stacking insulin” that’s going to make me crash later. Before I drive to the office, I do the triple-check for extra supplies (go-pack with insulin, pods, and backup testing stuff, glucose tabs, granola bars in the car, etc.)
When I arrive, I have to make a decision about parking right outside, which is convenient at first but requires me to move the car every few hours — so I might get a little walk in — or park about 8 blocks away where I don’t need to move the car all day, BUT the brisk walk to my door in the morning always drops my post-breakfast BG, sometimes dramatically.
The small decisions I should be thinking about more often are things like, ‘Hey, I am going to be sitting on my duff in front of the PC all day, so maybe I need a temp basal to up my background insulin (so I don’t get too high from the lack of activity).
You get the idea.
What do I want other people to know about life with type 1 diabetes? That it’s a lifetime of troubleshooting — one big science experiment — and if I had to guess, I’d say that not 20 minutes go by in my life in which I don’t think about some aspect of my diabetes, and what it might be doing while I’m not looking.
This, btw, is why I struggle with ADA’s motto “stop diabetes.” To my mind, this is generally not meaningful to people with type 1 diabetes, who will ALWAYS have to grapple with it, every minute of every day — no stopping. Damn it.
Decisions, decisions… you nailed it, #DSMA.
I agree with everything Amy wrote. I have to make the same kinds of decisions every day, about having the right amount of supplies, the right amount of food, the right amount of insulin. It’s like playing chess with your body, always trying to stay one step ahead in the game called Life with Diabetes.
There are some decisions I make in my life with diabetes that I didn’t even realize I do. They’re almost subconscious actions, but they’re completely influenced by diabetes.
For example, some people always sleep on the right side of the bed, some people on the left. But I always choose the side of the bed with the easiest access to the bathroom and / or the kitchen. Because I will surely wake up and have to go to the bathroom when I’m high, or head to the kitchen for juice if I’m low (I sometimes keep juice in the bedroom, but I often forget to restock), and then I don’t want to make a lot of noise. I don’t want to disturb my husband. I also don’t want to trip over any furniture. I want the easiest route to where I’m going, and so I immediately evaluate a room with this in mind.
Living in NYC, for a long time we had our bed pushed up against a wall, so I always slept on the outside because I was the one who would wake up most often in the middle of the night. And when we stay in a hotel, I always pick the side of the bed that’s closest to the bathroom.
Another decision I often have to make is whether or not it’s safe for me to get on a subway or train. When it comes to public transportation in New York, you have to be way conscious of what’s going on around you. Oftentimes trains will slow down or even stop for long stretches of time. If you drop suddenly, you need to make sure you have something at the ready. I try to never get on a subway without juice (although it has happened) or at least testing so I know where I’m at.
After nearly 18 years with diabetes, most of my decisions are second nature. Like everyone, I sometimes forget to do what I’m supposed to do, but heck, sometimes I still forget where I put my keys!
It’s interesting how certain habits become ingrained in you over time, to the point that you don’t even realize you’re doing them. Sometimes I wonder what it would be like to not have to make diabetes decisions anymore… I feel like I sure would have a lot more free time on my hands!
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To participate in the DSMA blog carnival yourself, click here for instructions. You can also follow the Diabetes Social Media Advocacy Chat on twitter every Wednesday night at 9pm EST. Follow @diabetessocmed or the hash tag #dsma.