Last week I mentioned that I have stories that need telling. The tricky part for me is to work out where to start, and how to tell them, and how to say what needs to be said, without telling you my whole life story (or at least not all in one go). I know that this this post needs to be about where I stand with diabetes now. I guess part of this is some sort of continuation of “introducing myself”. Knowing where I am and where I’ve been gives readers a context within which to read future writings. But this post is also largely me wanting to mark where I am now, to place some stones beside this diabetes path to show the point where stuff changed. I want to document it, first for myself, and then to publish it, so that I cannot ignore it. And hopefully so that people will hold me accountable to it, and help me with it.
[I’ve written and rewritten this piece at least three times trying to work out what I want to say, and how I want to say it. Its been tending towards a long rambling “life-story” type piece, complete with awkward childhood, D-parent-child tension, stupid student days and self-pity. Exactly what I keep trying to avoid.
So here’s another attempt, I’ll try to keep this one short(er) and simpl(er).]
Diabetes has been a part of my life since I was three years old. That’s 21 years. I’ll spare you the childhood memories and anecdotes. Not that they’re not there; I have a bunch of thoughts and memories that have been dredged up from the muds of time. But I’ll keep them for other posts.
I’ve spent a large portion of these 21 years treating diabetes like an unwelcome and inconsiderate house-guest. Sure, I’d do the minimum for it- finger sticks and insulin shots, just to keep it going, because, well, that keeps me going. But other than that diabetes has not been allowed any significant place in my life. Diabetes has been relegated to the back room, where I would appreciate it if it stayed, quiet and unobtrusive. The problem is it seldom stays there- it sneaks up on me with lows, and jumps out screaming highs, and invades quiet moments with threats of the future. My version of blood glucose “control” can sometimes look like a crazy ping-pong game, and all I want to do is keep the numbers bouncing around between the two slightly-broader-than-medically-suggested limits, so that I can get on with my life. Because I have refused to let diabetes get in the way of me doing what I want to do, eating what I want to eat, when I want it, going where I want to go, and basically just rampaging through life on whatever mission of mine I am on at that point in time.
Try as I might- and there have been times when I really, really have tried- I just haven’t been able to find and keep the motivation and discipline to tame this guest of mine. Even though I’ve known its bad, known its stupid and foolish, known that it will inevitably catch up with me (sheez, I’ve studied biochemistry, I know how this story goes), I haven’t been able to get myself to do anything other than lock up the guilt and depression in the back and keep doing the bare minimum while I blunder blindly on, with this guest of mine tagging along.
Two months ago, something snapped. It was during another painful and frustrating phone call with my medical aid. During this call I finally realized just how badly I was being ripped-off by them. And I lost it. Not while I was on the phone, just in my head… Ok, and in real life, once I’d put the phone down. This stuff is a story for another post all on its own, but the point is that in the losing it, in the freaking out, in making the decision to look for a new medical aid- one that would actually pay for stuff, maybe even *gasp* pay for an insulin pump- something happened. When whatever it was that snapped, snapped, something else clicked into place. As I started looking around at all the different medical aid options, and treatment options, trying to match them up, and as I came across more and more material about diabetes, suddenly it felt like I finally “got” how this thing was meant to work. No, I didn’t miraculously work out how to perfectly stabilize my blood sugars. But it felt like for the first time, I actually understood how the mess of all the different aspects of this disease and its control are meant to fit together. Yes, I know I’d studied it before, and do technically “know” all the biology. But suddenly I “got it”. I don’t know how else to put it, it just suddenly clicked in my brain. And with it, and because of it, because I finally “got it”, another thing clicked into place-- a sudden raging will and focus to get this darn disease under control.
These aren’t the first things that clicked. I think over the past year or so, some of the pieces have been slowly settling into place in my head. I’d been wanting to try tackle this diabetes, I just hadn’t known where to start. With a lot of support and encouragement, and the odd kick in the butt, from my rather awesome boyfriend, I started taking dance classes again in august last year, for the first time in 5 years. I also started running in between the classes. The exercise had a huge impact on my BGs- I suddenly had a whole lot of hypos to deal with! It was a good start. I took myself off to my diabetes doctor and had all the blood work done, for the first time in two years. I went back to the dietician and relearned carb counting. All this has helped- carb counting makes bolusing for meals less like a shot in the dark (mind the pun). The exercise is another weapon against blood sugar, and one that I’ve seen become more effective the more I use it. But I’ve still been struggling. I’ll be the first to admit that my efforts are still inconsistent, and sometimes it feels like nothing works anyway.
But since the medical aid freak-out, since what ever snapped, snapped and what ever clicked, clicked, I have a raging will, and a mild obsession, to get whatever I need, and do whatever I can, to make this work. Somehow, by waging war on my medical aid (yes, I do promise to post about this in more detail another time), my clicking-snapping mind made the leap and now I’m waging war on my diabetes too. I’ve changed medical aid. I’ve done my research. I desperately want an insulin pump and a CGMS (now to just get my doctor and medical aid to agree to it). I’m testing my blood sugar near-compulsively. I’m even logging my numbers and shots and meals (ok, not every day, I’m still working on this one. But hey, it’s a start right?)! I’m trying to look at different parts of my control- different times of day, different meals, different activities, etc, as little science experiments (no, I haven’t read Ginger’s book, sorry. I do freely confess to getting the idea from the title of it though). Heck, I work in a lab. I do experiments all the time. If that’s what it takes to work this disease out, I can do experiments! (This also technically changes the horrible log-book into a lab book, filled with all sorts of scientific data and notes. And this appeals to my nerdy side and makes it more bearable :) )
This is war. No more creepy-house-guest diabetes. As much as I wish it wasn’t so, I know diabetes holds rights to a permanent position in my life. And by waging this war, I’ve up-graded it to a more prominent and visible space, where it occupies more of my time and thoughts. But it can stay there only with my permission, as a controlled and subdued medical condition, not some lurking terror of the future that I’m constantly aware is trailing right behind me.
Whatever it takes. It's war.
This time, this is going to happen.