Diabetes Burnout : A real example
by Zoe Hamilton, Type 1 20 Years Burnout. Ash? Charcoal? Disintegration. Yes. Disintegration. Burnout: the disintegration of any pre-existing capacity or desire to look after oneself. Specifically in relation to diabetes, the disintegration of any pre-existing capacity or desire to do one or more of the following: test blood sugar, record results, review results, inject, bolus, change the cartridge, correct, fill prescriptions, order supplies, eat something other than chocolate, keep a food diary, have an hba1c done, say ‘hello’ to the endocrinologist, see the ophthalmologist, wander into the podiatrist, carry sugar, resist eating the sugar, carry equipment when you don’t want to take a bag, collect wee (nb : this list is not exhaustive).
This is how I experience burnout. It makes me feel hopeless, like a failure, that if only I tried harder, my hba1c would be better, I wouldn’t feel so tired, I wouldn’t put on weight and I’d be able to wear the bikini I bought for my honeymoon. If only I tried harder. I’m doing something wrong. My bad results are my fault. Every bad thing is my fault. It’s a great burden, too heavy to shift. I can’t shift it; I can’t do all of the things I should do, so I won’t do any of them. It’s too hard. And I’m a failure.
If you’ve read so far, you might find it difficult to believe that I’m actually a rational person. But I am.
These are the things I know to be true:
-
that there are no bad results, only numbers, high and low and in the middle;
-
that I can test, correct, inject in perfect harmony with my level of activity and diet and still get a result I’m not expecting;
-
that if I get a result I’m not expecting, I am not a bad person;
-
that if I get a result I am expecting, I’m not a bad person;
-
that it isn’t possible or desirable to be vigilant every moment of every day;
-
that ‘doing my best’ will vary day to day, according to the other things I’m working on, experiencing and feeling;
-
that it’s hard work looking after a chronic condition.
As should be apparent, these things I know don’t mean that I don’t experience burnout or that it’s somehow less debilitating than it was before I knew the things.
Some days, I’d like a rest. I’d like to think about food and exercise without wondering what my bsl is. I’d like to eat cake without feeling guilt. I’d like to avoid questions about the mp3 player (insulin pump) attached to the waistband of my jeans. I can’t have a rest. I must think about these things. It’s not useful for me to think that life isn’t fair because I can’t remove myself from a stressful situation to recover from burnout. If I could remove myself, there’d be no burnout, because I’d be cured, or deceased
Burnout for me is something that comes and goes. It might last a day or two; it’s lasted a year or two. It’s not related to how well my diabetes is controlled. My results have been less than optimal and I’ve felt OK; I’ve had a textbook perfect hba1c and felt, psychologically, like rubbish. It’s not about controlling my diabetes, but about controlling my response to my diabetes. The bsl of 24 mmol two hours after lunch isn’t as bad as the way I feel about myself when I see that result.
Now, controlling how I feel can be psychologically traumatic, but in my experience worth the trauma. I’ve had counseling. A lot of it. Things are starting to sink in. Being able to recognise that my response to something is irrational is an improvement. Recognition doesn’t always mean (rarely means) that I once again feel able to conquer the world. But I think it does give me some of that otherwise illusive ‘perspective’. Yes, things are horrible, I feel like a failure, but knowing that in the broad scheme of things, I’m doing the best I can in my particular circumstances (which might mean I test once a day in a good week), I’m not in fact a failure.
I start to feel better about myself if I set myself small goals. If I’ve only been testing once a day, increasing that to twice a day. If I haven’t seen my endocrinologist for a while, making an appointment. If I haven’t been recording my results, writing them down for one week. These are small things. ‘Small’ usually means achievable. If I achieve something, I feel better about myself and more inclined to try to achieve another small thing.
Another point about the small things: sometimes achieving them makes me feel physically better. If I fix the recurrent 10 am hypo, or stop having to get up at 3 am to wee, it’s great. The prospect of feeling better still is a great motivator.
Focusing on the big picture also helps me. Some days, I look at my record book (when I’m using it) and I see:
| |
10 mmol
|
9.30 am
|
2.3 mmol |
1 pm
|
14 mmol |
3 pm
|
7 mmol |
7.30 pm
|
18 mmol |
It’s all over the place, and I feel like shite. But if I look at the week, I might see that this is an unusual day, that mostly I’ve sat between 6 and 10 mmol. Or I might see that this is a pattern and that it’s useful information. (Admittedly, getting to this point of enlightenment can be difficult when you feel like a big fat piece of poo, but it is possible and I’ve done it!).
But what do I do when I don’t want to do anything at all? I don’t test my bsl before I eat a meal. I take my insulin after I’ve eaten. I’ve been free to eat the moment I felt like it, without thinking. I don’t write anything in my record book. I decide to start again tomorrow, and I enjoy today, free from regimen.
Today, I let my beloved stroke my head. I try very hard to believe that I am not a failure. Tomorrow, or next week, I do one small thing. In a month, I stop writing in my record book. I try very hard to believe that I am not a failure. In one month and one week, I do one small thing.
Zoe - Published June 1, 2008
|
This site complies with the HONcode standard for trustworthy health information: