Someone asked me this the other day in the context that it didn’t seem like it was such a “big deal” anymore. And as much as I was annoyed at the statement, I have to admit that I can see how someone who isn’t affected personally by the disease would think that. In fact the message of the team I am a part of is to show that you can do anything you want to despite living with the disease, as long as you take the time to control it. And that, right there, is the key: “As long as you take the time to control it.”
So maybe the question should be “what is it like to control type 1 diabetes?” That’s the question I will answer today. Keep in mind that I’ve had the disease for nearly 25 years and I don’t remember what it was like not having it. I suspect one who has lived a longer portion of their existence without it might feel different.
Just a few bullet-points to get started:
- Assuming I test my blood sugar on average of 8 times a day, that means I have poked my fingers approximately 73,000 times over the years. I only use my left hand because I’m stubborn and got it into my head when I was a kid that I wanted one pain free hand. Of course, that was before I ran out of real estate after poking my (very small) fingers 73,000 times, but I still haven’t given in and poked the right hand. This is what my fingertips on my left hand look like (forgive the dry hands, I swam this morning before work and forgot my lotion):
- Shots: Assuming an average of 6 a day, I’ve taken around 55,000 shots in my lifetime. Shots really don’t bother me. They don’t hurt, except for occasionally when I get a bad angle, but people that don’t have to take them tend to be scared of the prospect of having to take a shot, so I list it only for shock and awe purposes.
- Money. I spend, out-of-pocket (meaning not what my insurance covers) about $150/month on diabetes related supplies. I quite honestly don’t want to know what the cost would be without insurance – that statistic would scare the crap out of me. But at $150 a month, that’s around $50,000 over the course of my lifetime, thus far, out of my parents’ and my pockets. Yikes!
- Time. This is a tough one to quantify but the time spent dealing with the disease is pretty significant. From Doctors appointments, to time spent in the pharmacy, to time spent on the phone fighting with your insurance company, to time spent learning how to use new devices and medications to time spent planning…it’s a lot of time.
And speaking of planning, oh the planning! As a type 1 diabetic, I am forced to be a planner. I can’t just leave the house to go do something (anything). I guess I could, but if I did, I would risk death. I have to, at all times, make sure I have some form of sugar with me in case my blood sugar goes low. And if I’m leaving for more than an hour? I need sugar, I need my insulin and I need my blood sugar meter. Leaving for more than a week? All of the above, just a lot more of it and spares (and I won’t even get into the additional planning I face as a celiac diabetic trying to travel, or for that matter, a diabetic, celiac triathlete – it’s kind of ridiculous). And this makes me think about…my brain.
I have not, for almost 25 years, spent a day without having to plan for and think about diabetes — that is a lot of time thinking about one, particular thing. It’s no wonder that there is such a high rate of eating disorders amongst teenage girls with type 1. From the moment we are diagnosed, every morsel of food we put into our mouths is monitored. Are we eating too much? Not enough? Did we take our insulin? Don’t eat until you take your insulin! Did you test before you ate? We are hunter gatherers by nature — we aren’t meant to think about food that much! Couple that with today’s societal pressures on young girls, and it’s a disorder waiting to happen. But I digress. The point is that every day is another day I think about diabetes: there’s the constant monitoring of sugar, gauging proper insulin levels depending on carbohydrate intake and exercise, the remembering of the supplies, going to the pharmacy, going to regular doctor appointments, the list goes on and on. I have to do all these things to keep my blood sugar under control so I can lead a “normal” life. Imagine spending every day of your life doing this? Every day. There is no break. This is my life. And even though I do all of these things there is still no guarantee that I will live without complications down the road because as under control as my diabetes is, it’s still there and it’s impossible to be “perfect” so there is still risk.
And then there’s the bad days. We don’t like to talk about them, but they do happen. Let me give you an example of one that I had a few weeks ago. I got up at 4:45 am to swim. Got to the pool, swam (a “hard” swim), got out of the pool, tested my blood sugar and was high as sometimes happens to me when I swim “hard.” I took some insulin, drove home and hopped in the shower. I was a bit late so I was rushing to catch my train and in my haste, forgot to eat a banana before I left, which I was planning on doing and had dosed for. As I left the house for my 20 minute walk to the train, I became engrossed in my Blackberry (work) which continued as I boarded the train. Typing, typing, typing and before I knew it, I was feeling hungry and weak. Crap – I’m low. Normally no big deal but my blood sugar was dropping so fast due to the amount of insulin I took, the walk to the train and the lack of banana, that my body had decided it was in danger and so I began sweating profusely (on the train, yes, so people were staring at me) to the point where I looked like I had just gotten out of the shower. I had long since eaten a pile of glucose tablets but the after-effects were in full force. It was around 20 degrees out and now I’m drenched in sweat and about to walk to work in the cold. My clothes were damp, my socks were damp, my hair was wet — and then I had the pleasure of sitting at work like this for the rest of the day, damp and freezing. All this and I had a hard bike ride to get in later that night – guess who was lacking motivation for that?
Oh, and how about this example. Every night I take a long-acting shot of about 18 – 20 units before I go to bed. This is a slow-release basal insulin that works for 24 hours to maintain my blood sugar. Well, one night I accidentally took my short acting insulin instead of my long acting insulin and went to bed not realizing it. Short acting insulin is what I take when I eat food. For example, for a banana I would take 1 – 2 units, depending on the size of the banana. I woke up about an hour later drenched in sweat, barely able to walk and very, very confused. I was lucid enough to know that my blood sugar was low so I grabbed some glucose tablets (sugar), some juice and waited for my blood sugar to rise. It didn’t rise. So I ate more glucose tablets (about 15). I should have figured out the insulin mixup at that point but it was late and I was tired so when my sugar finally rose to about 85, I went back to bed thinking it would continue to rise….and then woke up 30 minutes later in the same manner I had before – drenched in sweat, confused and barely able to walk. That’s when it hit me what I had done and I spent the rest of the night forcing down massive amounts of food until I was sure my sugar was high enough that I wasn’t going to die in my sleep. I think I finally got to bed around 3:30 am. And when I woke up a few hours later, my sugar was 380 (quite high) because not only had I just eaten about 9 million grams of carbs but because of the insulin mix-up, I hadn’t taken my long-acting shot so I had no basal insulin running, so, the whole next day was a total mess.
I won’t get into what it takes to be an endurance athlete with diabetes – that’s a whole other ball game, but I think you get the point. We preach the virtues of good control, because good control is worth it and we may have come a long way with technology and the methods available for us to treat the disease, but that doesn’t change the fact that managing diabetes is hard work. It may not look like it sometimes but trust me, it is – even after 25 years. Sometimes I think we need to give ourselves a break or, dare I say, credit for that!