Addiction

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.

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Posted on May 30, 2012, in Diabetes, Personal and tagged . Bookmark the permalink. 14 Comments.

  1. Great post, Scott. Well said. I have also found myself being obsessive about it (especially checking my CGM readings throughout the day)… in fact my husband said something this past weekend in jest that made me think. I will likely blog about it but here’s the jist – He was watching a Star Wars marathon and I finally asked if there was anything else on; he acted like I had 2 heads lol – In a nutshell he compared his fascination/obsession with Stars Wars, to my diabetes – I think the exact words were “Star Wars is to me like your diabetes is to you.” I told him that was not even a fair comparison because one is a life threatening illness and one is a MOVIE. lol (this was a very lighthearted conversation, btw, but it was interesting to hear his perspective on it) He said that diabetes is my obession, my passion, it’s all consuming. And I’d never looked at it like that before. I’m just trying to learn as much as I can about this thing that broke my pancreas, that I live with 24/7. But I guess I hadn’t realized until he said that, that maybe I’m a little obessive about it, too?

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    • It is interesting to hear about how someone else sees someone like us and our (over)commitment to managing this thing. (Personally, I’d rather spend eight ours battling diabetes than watching Star Wars, but that’s just me!) I understand the context of the conversation, but I would’ve probably responded with “It’s not the same. You can watch Return of the Jedi eighty times and it always ends the same way. I can do the same thing eighty times and always get a different result.”

      Then again, I’ve had lots of time to think of that response!

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  2. I once had a doctor call me anal for testing so much – he was a neurologist that I was seeing because of neuropathy, so I kind of laughed in his face also. I was like you and used to try to fix every number that came up. I have learned the hard way not to do that and now try to ride things out. Depending on the number, I might move my next test up to see which way things are heading. Sometimes you really do learn stuff from waiting it out.

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    • Having the discipline to wait is tough… that’s probably why I always overtreat the highs AND the lows. And why I’m constantly struggling with how much time I should set for “Active Insulin” on my pump, even though I usually disregard that number anyway.

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  3. Thank you for sharing your story. I think there is a fine line between being obsessed by something and being passionate about it. I don’t have diabetes. But it has effected my life and if it effects me, I want to know everything I can about it. I like to say that I am passionate about making a difference for all those afflicted with diabetes. I have a father and a son with diabetes, one with Type 1 and the other with Type 2. Each child and family I meet has faced struggles and I tend to take on their battles as well, because I want to see them win it. I want to walk with them on their journey and watch them get safe to the other side. My free time? I spend it researching and learning more about diabetes with my latest “obsession” being issues in the schools. I don’t think there is anything wrong with being a little “obsessive” if it causes us to be productive and it is not interfering with the ability to lead a “normal” life. What is normal? That’s a whole other discussion. Thank you again, for being so open and honest.

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    • The line between being passionate (constructively enthusiastic) and obsessive (somewhere between mildly irritating and self-destructive) is indeed a fine one, and it’s the topic of my next post… when I find the time to finish writing it. This, in itself, is an example of what I’m talking about, as I try to not neglect my family as I discuss this stuff online. I envy people (like you, I believe) who can make a career out of their passion, I so wish I could channel that motivation an energy I have towards making lives of people with diabetes easier into something that allows me to make a living. That’s the way true progress is made, but it’s tough to get started. Thanks for reading.

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  4. Thanks for sharing Scott. I’ve been there. I ended up so frustrated because the more I would frequently I would test and take action, the more things seemed to get out of control. I’d go low in the middle of the night, drag myself to the kitchen like a zombie and over correct. I’d wake up exhausted in the morning and start the day with an elevated glucose level. The cycle would repeat. It was like a car fish tailing of control on ice (if you live in a Norther state you probably know what I mean). Attending the “Do It” program at Joslin helped me snap out of it. It was a great refresh on what to expect in terms of post meal tests and length of time an insulin might still be doing its job.

    I think the best part of the experience was the discussion groups with Dr. William Polonsky. He’s a diabetes educator and behavioral psychologist. He has a book called “Diabetes Burn Out”. I highly recommend the book.

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    • I’ll have to look that book up. Right now, I’ve got a list of books that I want to read, and the list is getting longer faster than I can keep up! Your story sounds exactly like mine, and yes I live in the Northeast and know exactly what you’re referring to!

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  5. We have no choice. If you want to maintain good control and actually keep the diabetes demon at bay, you have to exhibit addictive behavior. Diabetes is an addiction, whether we like it or not.

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    • I’m not so sure I agree, Leo. I think there are ways to get yourself into a “comfort-zone”, a rhythm, if you will, that makes it go a little easier. I liken it to a roller coaster. Sometimes we’re hanging on to the back with a white-knuckled death grip, legs swinging in the air behind, using every ounce of energy to just not crash. But once we figure out how to pull ourselves into the seat and under the harness, it’s still a bumpy and scary ride, but it’s not quite as terrifying.

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  6. i think we all struggle to find that balance between caring enough and caring too much. it’s tricky.

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    • You’re right Jess. The communications out there aren’t that helpful either. One voice says that tighter control is best (that cursed DCCT!) and the other says to err on the high side, because hypoglycemia can have tragic results. Sometimes, both voices come out of the same mouth, which is all the more confusing. Yet just another thing in life to try to balance.

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  1. Pingback: Addiction, Part II « Rolling in the D

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