You may have seen this already. On the JDRF group on LinkedIn, a member named Michelle asked the following question:
I had a parent recently tell me her child is addicted to diabetes like an alcoholic…what are your thoughts on this concept?
This question generated quite a flurry of interesting responses. You can read them here (you need to be logged in to LinkedIn to see it). But it also really got me thinking about what it means to be addicted to something like diabetes.
I confess that I had a “diabetes addiction” for quite some time. Trust me when I say that it’s real, though not in the sense that you might expect. To me, a diabetes addiction means taking a 24-hour-a-day condition and turning it, literally, in to a 24-hour-a-day obsession. By that, I mean it consumes you so much that it leaves little time for anything else, changing it from something that is always on your mind to something that is always on the forefront of your mind.
For me, the addiction probably started about ten years ago and lasted for four years after that. I was addicted to information, and wanted – needed, actually – to know exactly what was going on with my diabetes at every moment. For about a year after September 11, 2001, I was worried about what might happen to my homeland and what type of desperate situations I might find myself faced with. I became fixated on CNN.com and on the ticker at the bottom of every TV newscast, because if something happened I wanted to be able to gather my necessities and find safety before I became trapped in a grave situation. Although I don’t believe there is a cause-and-effect relation, my response to diabetes was pretty much the same.
I needed information about my blood sugar. All the time; constantly. And I’m not referring to a three-month A1C summary, I wanted an instantaneous up-to-the-minute snapshot of what my blood sugar was RIGHT NOW, at that very moment. In fact, I was probably testing every 30 to 60 minutes (except while sleeping), and had to exercise some modicum of self-restraint to avoid testing even more.
Sometimes, I tested because I was bored. But most of the time, it was because I felt lost without that particular piece of information. Many times, I’d look at my watch and wait for an hour to finally elapse so I could test again. It was all about trying to achieve perfect control, or as the jargon of the day was (and still is), “tight” control.
I had been experiencing wild blood glucose swings, both high and low, in those years. In order to find out what my blood sugar was, I couldn’t pay any attention to a 30-minute old test, because that was old and outdated. I figured that by testing more and by getting, and reacting to, up-to-the-minute numbers, I could achieve tight control. That is exactly what the term meant to me. This was, by the way, before we had Continuous Glucose Monitors available to us.
In the early stages of the “addiction,” I was keeping my targets really tight: between 80 and 90 mg/dl, and needless to say I had lots of midnight adventures with hypoglycemia as a result. I was also using insulin pens which only measure to the nearest unit, so if I went to bed with, say, a blood sugar reading of 115, I’d take a unit of insulin, then eat something because that one unit would cause me to go too low. Instead of taking one small step forward, I had to take a giant step forward and a small step back. In hindsight, the approach didn’t work: the ER visits and the poor A1Cs are proof of that. But as I interpreted it at the time, those extreme lows and highs just meant I wasn’t keeping tight enough control, so I needed to continue doing the same things I was doing, only more often. I would try to reign in control even tighter – meaning more fingerstick tests, more micro-corrections, and spiraling even more out of control.
At one point, my endo told me “Scott, you test too much. You shouldn’t be testing 15 to 20 times a day”. I thought he was nuts (my informal survey of the DOC reveals that my thought was quite typical), but in this case he was right. The problem is that with all these micro-corrections (added to the fact that I almost never logged anything) there was absolutely no way for anyone to figure out whether my starting-point doses of insulin were right. There were trends happening, and I couldn’t see them with all of the changes I was constantly making.
Still, I suppose that day was the beginning of the end of this behavior for me. As much as I didn’t like living my days in the dark and not carrying a flashlight, so to speak, I also didn’t want to hear my doctor tell me those words again. My process, at the time, buying test strips out-of-pocket and submitting paperwork for reimbursement was also not at all a pleasure, so if I could buy some more time between them, it was another bonus. But I had his “permission” to test less, so I needed to convince myself to do just that. It was hard.
The true end to my obsessive testing, I believe, was when I started pumping. I was warned by educators that using an insulin pump means you “have to test even more”, words that had me laughing in their faces (not out loud, though). But with pump training came a renewed education, one that exposed me to knowledge of peak times and durations of even the fastest types of insulin. At any moment, I could look at my hip and see how much “active insulin” I still had, and whether I should try to correct a high BG. I would no longer correct highs an hour after a meal. I could also bring my 150 mg/dl down to a 115 with fractional units.
For the past year or so, I’ve been using a CGM, and although I don’t feel it is dangerous, I suppose one could believe that this compulsion is creeping back. I find myself peeking at it all the time, if for no other reason than it’s so damn easy and convenient. The difference this time, though, is that I am looking at a current BG value in the context of a trend, not as an isolated measurement. So my decision on how to correct, if at all, a sub-par BG is a more educated one. Still, I don’t want to become as reliant on that number to calm my nerves as I once was.