What Does Illness Look Like? Part 1
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.
Before getting sick, I used to wake up at 5 a.m. for what I jokingly called my 20 percent time. As many of you know, Google popularized this notion of 20 percent time by letting employees spend Fridays working on their own personal projects. Waking up at 5 a.m. gave me time to work on my creative and computer programming projects before the rest of the family woke up at 7. In the same way that Google made some of these personal projects into products, I hoped that my personal work would eventually lead to new sources of income.
This worked out really well for me. During that time, I moved a lot of projects forward and, based on the programming work that I did, I got some job interviews as a programmer. But last last summer I started to get sick with what I now know is chronic fatigue syndrome/fibromyalgia (CFS/FM)1. With fatigue as one of my primary symptoms, waking up at 5 a.m. became difficult. Sure I could wake up that early, but my productivity would be low to say the least and I would suffer, both later on that day and in the coming days.
If I set August 1 as the day I got sick2, then it has taken 10 months to arrive at the point where my doctor and I are pretty sure I’ve got CFS/FM. By mid November, what had started as weekly episodes of a day or two, had progressed to the point of my being off work every day. I don’t want to get bogged down in the details of CFS/FM, but if you’re interested in learning more, this is the best guide I’ve found. Here’s a rundown of some of my symptoms:
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Extreme fatigue
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Brain fog (forgetting names and words)
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Confusion when there’s a lot going on in a given environment
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Sound and light sensitivity
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Aching muscles first thing in the morning (imagine you did a kick-ass full body workout the day before)
There are other symptoms that come and go and they shift over time; what was dominant last week, might not be a factor this week. And there are episodes, lasting anywhere from a day to a week, when my symptoms are much worse. But I’m still symptomatic on my good days, so much so that I’m unable to work. These episodes have two causes that I’ve managed to identify: rapid weather change and overexertion.
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 life3.
1 CFS and FM are closely related. One difference between the two, is that people with FM usually have pain as a dominant symptom.
2 It can hard to set an exact date. As I said earlier, my doctor and I are just getting to the diagnosis stage after more than 10 months. As I start to understand more about CFS/FM, I see previous illnesses in a new light -- could they be related? For example, what about that nausea and vertigo I went to the doctor about last spring? Still, insurance companies really like exact dates, so let's go with August 1.
3 Which is actually quite convenient, because I probably have to leave the rest of this post for another day. I felt relatively energetic when I started writing this, but my body is telling me to stop and rest now.