Sep 202011

One of the most frustrating things about a brain injury is the energy loss. The words “tired,” “exhausted,” “fatigued” don’t really convey the experience and frustration of this state, for it isn’t anything like one feels after a long day at the office, a hard-drinking night at the frat, an all-night study session for one reason above all others: it happens after doing nothing. What a person sans illness or brain injury or fatiguing disease feels after working 16 hours straight is what a person with brain injury feels after getting up in the morning and eating breakfast — and that doesn’t include deciding what to have for breakfast or making it. Those are extra drains, necessitating longer naps.

I am much better than those days of waking up, eating breakfast, having a nap until lunchtime, chowing down on a frozen meal before eating a chocolate bar on the way to yet another medical appointment (therapist, physio, psychologist, doc, whatever), then coming home to gaze gaga-eyed at the TV until bedtime. But the fatigue is no less frustrating. In fact, I think it’s worse because now my mind is alert and wants to engage with the world. As one old gent told me recently, in the six or so years since we first met, I have woken up.

I used to live the rest-crash model, that is, push myself until I crashed into complete stillness for hours and days of body-enforced rest, then repeat. But with a combination of experience, acceptance, smarter pacing, and working with a therapist on scheduling doable weekly tasks, I rarely crash – except for twice a year in January (gee, I wonder why) and late August/early September when I usually get sick and crash. Knowing this, one would think I’d plan for it. Nope. Every year, I hoped that this year I’d be better and could keep going. After all, my energy levels improve noticeably annually (makes one realise just how crippled with fatigued I was the first few years). But this January taught me to stop hoping and to get real. After I developed some weird-ass skin thing that made my hands layers of shredding skin with new, raw skin underneath and very painful to use, I decided enough. I was going to go on a staycation – a stay-at-home vacation – at these two times of the year before I got to the point of contracting a virus or became a puddle of mindless goo because I had run my body down and overtaxed my brain too much.

The other issue I have is that I can’t do physical work when I’m doing cognitive-type work. So I couldn’t clean the fridge while I was writing, reading, or even just keeping up with Twitter. Trying to do both leads to some very unpleasant physical problems, like burning up, retaining water until I look like the Michelin Man, heart and blood pressure getting worse, and so on. The staycation would give me an opportunity to do such mundane yet satisfying things like cleaning the fridge and purging the bookcase.

This August was my first execution of that decision. It was hard. I had so much to do. I didn’t start it on the day I had planned but a day or so later. Even then I didn’t cut my Internet connection entirely because I was expecting some important emails for a videoconference and a press release and I was supposed to be writing regular blog posts for The Toronto Star’s Speak Your Mind section on the Ontario election. Just the act of waiting and checking and waiting alone was a drain, never mind trying to write blog posts. Not the brightest of ideas. But the problem of self-employment, whether one is injured or not, is that vacations are tough to take. What if you miss that work opportunity that will make your year?

Anyway, I finally had it when I hadn’t read any of my stack of mystery books for over a week and was so not interested in doing anything. I turned off the WiFi. What a relief. It was another week or so before I felt ready to get back into the fray.

A change is as  good as a rest and a rest is as good as a full recharge. And when your brain batteries are usually about a tenth, uh, less, than that of a normal person’s, recharging is essential. Yes, it makes you feel like you’re constantly losing time, constantly screwing up opportunities or missing them, but pushing yourself until you crash means that you do even less and miss even more. Pacing is important, but for me the staycation is essential.