I just spent an exhausting day visiting the CERN laboratory in Switzerland — you know, the place where they’re trying to get protons to collide to try to figure out how the universe began, and other light subjects. (Many thanks to Karmel for pointing out that even particle accelerators are sensitive to carbs.) I was expecting to learn a little about particle physics and come home no worse for the wear. But instead, it ended up being one of the worst days I have had since I was diagnosed nearly a decade ago.
The problem started at lunch, when, after a snack of bread on the bus (which I bolused for, mind you), my blood sugar was 323. That’s enough to make me want to scream to begin with, but it also happened to be lunch time, and I had fought my way through a large crowd of tour groups and CERN scientists, and wasn’t about to not eat. (After all, we were looking at another 5-hour bus ride home, and I was already starving.) So I double bolused, for lunch and for the correction, even adding a little more since I knew that my inactivity and already high blood sugar were going to make me really insulin resistant.
Then, as one does, I went to check out the hydron collider. Or, rather, I followed my group to a huge warehouse where they store the extra magnets. Now, I’m not really one for particle physics to begin with, but we had a jovial British tour guide who was used to groups of school children, which meant that I actually could understand what he was talking about. I followed along for about 45 minutes and then decided to check my blood sugar, just to see what was going on. This seems crazy in retrospect, but I was a little worried it might drop too low — I’ve had some really scary ones recently that came on unannounced, and I’ve been getting paranoid.
Well, no need to worry this time, because when I pricked my finger, the result came back at 447.
No, that’s not a typo. That is four hundred and forty seven mg/dl and is, quite literally, higher than it was when I was diagnosed nearly 10 years ago. Freaking out, I took a huge correction bolus, waited a few minutes, and checked again. 475. Twenty minutes later? The glucometer stopped giving me numbers and simply said “Hi.” Surely that was wrong — so I checked on my backup glucometer. “Hi.” My blood sugar was so out of control that it didn’t even register on the machine.
I was horrified, frustrated, scared, confused — pretty much any diabetes-related adjective you could think of. What was going on? What had I eaten — what had I possibly done — to make my blood sugar go this high? The only possible explanation I could come up with was that I had somehow tugged on the tubing/insertion site when we’d stopped at a rest stop on our way to Switzerland and had pulled the tubing out from my skin — but, thanks to the ingenious design of the Quick-Set, I couldn’t actually see if anything was wrong.
Thank god that I had had the foresight to bring another insertion site — I usually am not good at remembering to do that, and in this situation, it would have meant at least 7 hours more with outrageously high blood sugar. (I had a backup syringe, but no humalog b/c I didn’t want the vial to denature — starting tomorrow, I’m going to pack one anyway.) As our tour guide spoke to our group about how the refrigeration system of the hadron collider worked, I carefully (very carefully) unwrapped the set and plunged it into the skin of my opposite hip, making sure that I could feel the needle going in, before reattaching the pump on my other side. I then took off the problematic site, pulling the adhesive slowly so that I could see if the cannula had indeed come loose.
Nothing. The cannula was securely in my skin. Sure, I had my typical “donut” of puffy tissue left over from the Quick-Set, but there was nothing otherwise unusual that I could tell from the surface. Meanwhile, I checked again — still “hi.”
I’m almost embarrassed to say what happened next — but here goes: as the rest of the group went off to see something called the ATLAS project, I stayed behind in the visitor’s center and . . . burst into tears. I’m not talking like, a little sniffle. I’m talking about full-on crying, the type that is so intense you need to lock yourself in the handicapped bathroom so that you can sob against a wall (and then you need to wear dark sunglasses on your way out so as not to show your red-rimmed eyes to the world). I’ve been frustrated by my blood sugar pretty much continuously on this trip, and this was a tipping point, one of those moments where all the tiny details of diabetes come crashing down on you all at once — the self-control and the attention to detail and the thought required for every single bite of food. As I stood there, alternately crying and talking to myself, I could only really say one thing, a phrase I return to every time the emotions of diabetes get the best of me: “I am so tired of this. I am so, so tired.” And then, something new: “I am so angry about having diabetes.”
It was a funny and surprising thing to hear myself say, because the vast majority of the time I’m really *not* angry about it. It just seems so pointless — who would I be angry at? Whose fault is it? No one’s. What can I do about it? Nothing. But today, all the frustration I’ve been feeling boiled over into a genuine anger at having to live with this goddamned disease every day of my life, with no end in sight. Suffice it to say, by the time I got out of that bathroom and snuck outside to take a walk, I really needed those sunglasses. And I also couldn’t help but notice the irony of being at a research laboratory that is attempting to recreate the conditions of the Big Bang — and we still haven’t been able to figure out the secrets of something as close to our hearts (literally!) as the human pancreas. If only JDRF had a 20-country partnership and over a billion dollars a year.
As it turned out, it took more than sixteen units of insulin to get my blood sugar to go back down — which it did after nearly six hours. It even threw in a fun trick where, after not working at all for the entire afternoon, the insulin kicked in and I dropped from 293 to 69 in an hour — despite the fact that the insulin technically should have been nearly out of my system.
Anyway, I’m now back in the hotel room, I ate a tomato salad for dinner, and I’m looking forward to collapsing into bed. But I’m confused and upset that, for reasons I still don’t understand, my blood sugar was higher this afternoon than it’s ever been since I was diagnosed — and that it took so much to get it to go down (even the walk did nothing). I have never, and I mean never, gotten that “hi” message on my glucometer. But then again, as my husband pointed out, at least it didn’t say “Bye.”