The hours my head lives in diabetes-land

Summer 2005 - 40 copyIf I think about it, most mornings when the weather isn’t obvious, I stand at my living room window while my oatmeal is simmering on the stove, squinting through the trees outside to see if it’s raining or not. When the TV news, on in the background, announces the weather, I pay attention. Well, sort of. It seems to go in one ear and out the other as I’m up and down, in and out of the kitchen stirring, testing my blood sugar, shooting up my long-acting and rapid-acting insulin, trying to think back if I already took one unit of my rapid-acting insulin to blunt the dawn phenomena (rapidly rising early morning blood sugar) and cleaning up the little blood splatter that’s trickled off the used strip onto the counter and cabinets. (I omitted that I’m lately careful to open the lid of the strips canister slowly and quietly after my husband said one day, “Every time I hear that snapping sound it makes me feel horrible knowing you’re going to hurt yourself again.”) Judging the weather for the course of the day is all about when I will take my daily walk, which is a big determinant of how much insulin I’ll inject for breakfast. 


Some version of this goes on throughout a fair part of the day: Hmm…maybe I should move my 9:30 AM walk to around 11 AM and walk to a subway station further away from my home that’ll take me into the city where I’m meeting friends for lunch. Wonder what’ll be on the menu for lunch? Better remember to take my insulin. Hmm..should I put it in my bag now?…But, the weather guy said “chance of showers” this morning…hmm…do I remember what time? 


Of course at the restaurant I spend time studying the menu trying to chose something that isn’t a lot of carbs, then spend time analyzing what’s on my plate when it arrives so I can take my best guess how much insulin I need to cover it. Done. Probably should check in a few hours, though, to know how well I guessed. After lunch it’s finally bright sunshine so I decide now (not when I took my bolus for lunch) that I really want to walk the 23 blocks downtown where I’ll grab a subway back home. Damn! I didn’t plan for this but I can’t resist walking in the city on a beautiful day. The heck with it, I’ll just have to deal with it when the low comes. Hmm…will it come? If I took just a little less insulin than I actually needed for lunch then the walk will balance my blood sugar out. Hmm…


Guess not. Almost at the train station I feel my heart beating rapidly, I’m a little sweatier than I would be normally…Can I hold on till I’m down on the train platform or do I have to stop now and break my stride and handle this? Jeez, the third time this week! When am I going to get better at judging all this? Should I stop? Shouldn’t I? Should I stop? Shouldn’t I? Wow, why can’t I figure this out. Oh… I… get… it… I’m …really… low. Beettteer …stop! 


I eat a roll of SweeTarts and 10 or so minutes later my body’s back to normal. But my head is still calculating: Where/how could I have avoided this? CouldI have avoided this? 


It’s only 3 or 4 PM on a typical day and look how much of my time, energy, moments I’ve devoted to my diabetes. Oh, yeah, I forgot, this morning three people sent me emails telling me that I should get the H1N1 flu shot. Should I? I’ve never gotten a flu shot before. I know this flu is supposed to be really bad and diabetics are on the critical list. Should I ask my doctor? Do more research on the web? Just do it? Just not do it? Hmm…will have to give this more thought.


Granted, some of my friends think I’m obsessive – you probably do too now, but probably not if you live with insulin-dependent diabetes. In full disclosure it did take me 37 years to decide to get a medic alert bracelet (admittedly I wasn’t thinking about it ALL the time.) And I have been thinking about getting a pump for the last five years, although not ALL the time. 


Everyone talks about how diabetes tasks are a lot to handle. But I’m not talking about those time-grabbers like: Calling to make a doctor’s appointment (GP, endo, podiatrist, cde, dietitian, ophthalmologist) getting there and hanging out in the waiting room. Or checking how much synthroid, apidra, lantus I have left and judging when I have to call my health insurance company to refill my prescriptions. I’m not talking about the time spent calling my health insurance company to get more test strips or going to the lab for my blood tests, or thinking through all the extra medicines, syringes, testing supplies and back-ups I have to take when packing, or what/how much food to pack if I’m getting on a plane or a long train ride and making sure I get to the supermarket to get something healthy. I’m not even talking about the on-going supportive phone calls with my diabetic friends or the short quarterly crying jags from being tired of all this. 


No, I’m talking about how many moments of every day my energy is stolen by needing to analyze, calculate, plan, prep, correct, stuff pockets with glucose tablets and ‘just-in-case-cash’, make light of (so as not to burden anyone), solving and resolving all the stuff that happens because of my diabetes, or all the stuff I’m trying to avoid happening because of my diabetes. Call me crazy – but my A1Cs are in the 5’s because of all I do, and that’s where I plan to keep them. Also, I’ve never been unable to treat a low blood sugar myself.  I do what I do so that to the best of my ability I’ll never be in that position and so that I will have the longest, best run possible. 


At the International Diabetes Federation conference two weeks ago, Michael Weiss, Past President of the ADA, gave a presentation about what living with diabetes has been like for him. From his half hour talk I remember two things:


1) Even when he got cancer and was petrified and went through a year of chemo, now that he’s five years cancer free it no longer occupies him. Yet diabetes still does every day. He said so. He also said when he had cancer, “All I had to do was follow my doctor’s instructions. It was easy. With diabetes I have to make all the decisions every single day. It’s never-ending.”


2) How much of his thinking is monopolized by diabetes


I’d never thought how much of my time/energy/thoughts are monopolized with diabetes until Michael said it – and then, bling, I realized how true it was, and felt oddly validated by hearing someone else say it. Maybe it’s the curse of an overly responsible type 1, or being on insulin no matter what type you have, but today I want everyone in the world to know that when I say you can find a gift in your diabetes, I mean it. And when I say managing diabetes is a second job, I mean it.

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