What Does Illness Look Like? Part 2: Energy Envelope
This is a multipart series on my experiences with chronic fatigue syndrome/ fibromyalgia. (Update: I’ve since been diagnosed with fibromyalgia.) It’s partly a way of telling my friends what’s going on and partly a way of organizing my thinking on the subject. I hope that people suffering from similar illnesses can gain something from these posts, even if it’s just a matter of feeling a little less isolated.
Of the two causes, overexertion is the one I can control, so in the next part of this series, I’ll begin by describing my energy envelope and what that means for my day to day life
Close to eight months ago I ended the first essay in this series on the optimistic note that I’d be back in a week or two with the second essay. Learning to live within your daily allotment of energy shouldn’t be that hard, I reasoned.
I didn’t count on how hard it would be to figure out my daily allotment of energy in the first place. There isn’t a hack for figuring out how much energy you have, so you’ve got to do it the hard way: trial and error. But since I suffer from chronic fatigue, an error in interpreting my energy level can be costly. A healthy individual has some leeway in this regard. For example, when a healthy person overexerts herself one day, she can recover by resting the next. When I overdo it, my symptoms will flare up, sometimes for days.
Indeed, over the summer I got into a cycle of overexerting myself, suffering the fallout and then overexerting myself again to get beyond the fallout. That’s what we’re taught isn’t it? Just push a little harder and you’ll make it. Look at some of the older posts on this blog and you’ll see several pieces on long distance cycling. Tired after riding 100 kms? Just push yourself a little harder. Make it 150 kms! And your next 100 km ride is that much easier. Pushing yourself beyond your limits is ingrained in our culture and for exercise it tends to work well if practiced judiciously. But it’s not the right way to tackle fibromyalgia.
I have to work within the energy limitations I have on a given day. But how do I know what my limitations are? There’s no easy answer. The signs that I’m getting tired are hard to pick up. Take writing this essay. Can I write a few more sentences? To answer that question, I have to make a conscious effort to check in. Sometimes the signs are subtle. I’m in the flow of writing this piece right now, so I’m not paying attention to my body. I pause and note that my fingers are starting to get stiff. And I’m having more and more trouble keeping what I want to say straight in my mind. I’m forgetting words. But I love the feeling of flow I get from writing or making music or engaging in other creative activities, so it’s hard to stop and rest, even when the signs become obvious.
I’ve heard that it can take years to learn how to manage fibromyalgia and I’m learning firsthand why. For now, at least, I’m going to listen to what my body is telling me and stop writing. Will there be a third essay in this series. Probably. But I’m not going to encumber myself with a due date or a topic. In this way I’m slowly learning how to be easy on myself.