The new torture

Developing post-infective fatigue syndrome, a condition that’s still largely a mystery to modern medicine, was a stroke of significantly bad luck. But I also had good luck, in that I had access to specialists at the nearby Fatigue Centre.

The Fatigue Centre specialists explained that while there is no cure for post-infective fatigue, there’s a lot I can do to manage my symptoms and, in theory, aid my recovery. Their advice boils down to two main points.

1. Track everything
They mean everything: all activities, sleep, mood, breaks, naps, steps and dog sightings. Well, I added the last one, but the rest are legit.

For two weeks I kept hour-by-hour notes on what I did and how I felt. This let me see how much I’m able to do before I have so little energy left, I can no longer feed myself or even maintain a sitting position.

I also have to track my daily step count. When I was healthy, I averaged 18,000 steps a day. Being active and not owning a car made this easy. My favourite days were when I could go hiking and get up to 35,000 steps.

Now instead of trying to increase my steps, I have to keep them under my new threshold, which started at 6000 steps. Every day I scratch step-count math in notebooks, planning what I might be able to do based on the required steps. A sample of my step tallies:

Steps from the couch to the bathroom, one way: 16
Steps used per load of laundry: 675
Steps used getting to work, one way: 1532
Steps for an average grocery store trip: 2159
Steps from my door to platform 16 at Central Station: 1023

Managing chronic fatigue by resting excessively

2. Rest excessively
When I was healthy, I always tried to do as much as I could, usually two things at once. I’d wash the dishes while talking on Skype. I’d exercise while listening to an audiobook. I’d stretch my calves while brushing my teeth.

Thanks to my chronic fatigue, much of my day is now taken up doing zero things at once. I’m supposed to take a minimum of five breaks each day, which should be 15-20 minutes. Not in total, but 15-20 minutes each. During these breaks, I’m allowed to do any of the following:

  1. Lie down or sit and have a cup of tea. As a bonus, I can look at a tree! (Sometimes I cheat and look at several trees at once.)
  2. Pat a pet: this one sounds great, except I don’t have a pet (I am in the market to borrow your pets, if you don’t mind bringing them by five times a day, or just donating them for the duration of my illness).
  3. Meditation/mindfulness/breathing exercises: I feel like if I had any aptitude for this quantity of meditation, I would already be a monk. Yes, meditation is highly beneficial, but when given free time, my brain prefers to list all the productive things I could be doing with those 15 minutes if I were well, and then berate me for being sick and useless.
  4. Colouring in: no.

On the breaks, I’m not allowed to eat, look at any kind of screen, chat, read, stretch or walk. I can listen to music, but only if it’s calming.

The breaks drive me insane.

I suspect most people nowadays can’t remember the last time they did nothing for 15 minutes. Nothing. Not a single thing, other than just sitting with their own rampaging thoughts. Oh, and looking at a tree.

Conclusion: 6000 steps a day isn’t enough, and in our driven, goal-oriented, information-saturated society, being forced to take medically advisable breaks is a unique form of torture.