The Hours My Head Lives in Diabetes-Land

If 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) 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 50 minutes to a subway station further away that’ll take me into the city where I’m meeting friends for lunch. Wonder what’ll be on the menu for lunch? But, the weather guy said “chance of showers” this morning…hmm…do I remember what time he said?

Of course at the restaurant I spend time studying the menu trying to chose something that isn’t a lot of carbs, then time analyzing what’s on my plate so I can take my best guess how much insulin I need to cover it. Done. But should check in a few hours 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 20 blocks downtown where I’ll grab the train back home. Damn! I didn’t plan for this but I really love 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? Did I take just under my needed dose perhaps when I shot up for lunch. If so that will give me a cushion. Hmm…

Sure enough, almost at the train station I feel my heart beating rapidly, I’m a little sweatier than I would be otherwise…Can I hold on till I’m down on the 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? Hmmm…better stop!

I eat a roll of SweeTarts and 8 minutes later my body’s back to normal. But my head is still calculating: where/how I could have avoided this? Could I have avoided this?

The point: It’s only 4 PM and how much of my time, energy, moments have I already devoted to my diabetes care? Meanwhile, 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 endangered species 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, and it did take me 37 years 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.

But let’s be fair. I’m not talking about the major events managing diabetes that take our thought and energy like: calling to make a doctor’s appointment (GP, endo, podiatrist, cde, dietitian, ophthalmologist) or checking how much synthroid I have left and judging when I have to call my health insurance company to refill my prescription, or calling my health insurance company to get more test strips or going to the lab for my blood tests, or thinking through all the extras 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, or the short quarterly crying jag from being tired of all this. No, I’m talking about the moments of every day my mind is on over-drive analyzing, calculating, planning, prepping, correcting, stuffing pockets with glucose tablets and change, making 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.

At the International Diabetes Federation conference two weeks ago, Michael Weiss, a past president of the ADA, gave a presentation about what living with type 2 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. His diabetes does, every day. When he had cancer, he said, “All I had to do was follow my doctor’s instructions. It was easy. With diabetes, I have to make all the decisions every day.”

  2. How much of his thinking is monopolized by diabetes

I’d never thought of number 2 until Michael said it, but when he did, I heard a “ding” go off in my head. Maybe it’s the curse of 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 like having a second job, I mean it.

Reprinted from my blog:

Great post, Riva. I was trying to explain this the other day and not really expressing it well. Your blog has made me wonder if the autonomic nervous system in non-diabetics works this hard without our knowing it.

Fair Winds,

Riva great post. I am so glad for online posting. It brings reality to me and tell me that I am not the only diabetes crazy person. Constant analyzing, constant calculation, constant pain in the ■■■, constant concentration of every next move I make. Thanks for the post

Wow Riva - awesome post - you had me riveted in my seat. I missed out on Michael Weiss’s conference (didn’t we both need a twin/triplet of ourselves to attend everything?). I have to admit, I’m like you, never think of the #2, for us, being long time diabetics, it’s just something we do, plain and simple. It’s when I read a post like yours that I think to myself, wow, do we ever stop thinking the word “d” in our lives? Not really, but we plod along. I’m also like Michael, cancer survivor times two, and for me as well, diabetes is easier to manage. I’ll take it over cancer any day!

Plodding along here, and thinking to myself, yikes, it’s almost 2:00 a.m. - how will my BG’s be before I head off to bed so I’m okay in the a.m.? Oops, thinking the “d” bit again . It is a constant revolving circle in our lives.

Anna from Montreal - The Trials and Tribulations of a Diabetic

So true. Enjoyed your post very much–thanks! Not only did I smile at how you beautifully summed up the internal dialogue of our days, but yours is a great statement to share with my non-diabetic loved ones to help them understand how all-consuming it is. With the exception of my husband, my friends & family believe all that’s involved is taking some injections. “You just take shots, right?” “Yea, I take shots.” Would anyone really want to hear what’s truly going on in my head managing this? Nope.

I think about #2 a lot. Maybe it’s because I was diagnosed Type 1 in my 50’s & reflect (too often) on the freedom of my former life. What did I do with all that extra energy & time that’s now devoted to self-absorbed self-monitoring! Definitely a second full-time job.

Well said. I never thought about how much I think about diabetes during the average day. I’m so used to it that it usually doesn’t even register. Managing diabetes has become easier, but diabetes is always something I have to consider when making a decision about anything in life.