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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.

Maya Deren

Image of Maya Deren from her film, 'Meshes of the Afternoon'

Image of Maya Deren from her film, 'Meshes of the Afternoon'

After recommending Maya Deren’s short film, Meshes of the Afternoon to a friend of mine, I took the opportunity to re-watch it this morning. I found it really influential as a film student and it still stands up today.

Meshes is probably her most accessible film, but all of them are great. Her later films, such as Ritual in Transfigured Time, are more abstract and more concerned with choreography (of the camera and of the actors/dancers).

I could go on and on about these films (I wrote an essay or two on the subject almost 20 years ago), but I’ll leave the work of analysis to you. Enjoy.

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:

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.

found poetry 1

“intercepting sycalls and notifying an exterior sandbox host” Codius

Playing with explorable explanations

I threw together this little project over the weekend to practice my javascript skills and explore Bret Victor’s Tangle, a javascript library for creating explorable explanations. I still have lots more to learn, but Tangle is really easy to get started with and I’d love to explore the possibilities of explorable explanations in more depth. When I get a chance, I’ll write up a step-by-step guide explaining how I built this.


Victor develops the ideas behind Tangle in his essay Explorable Explanations and provides his own extensive example of the library in use with Ten Brighter Ideas.

This concept has real potential. Being able to play with the different data points reinforces your understanding of the subject. In Bret Victor’s aforementioned essay, he discusses how this approach could work well with explanations of policy alternatives. And in an organizational context, you could present business cases or proposals as explorable documents so decision makers could really understand the data underlying their decisions.