Call me invalid. I have had chronic fatigue syndrome for a little over six months now, so lately I haven’t been able to do a whole lot.
Initially it wasn’t so bad. That is to say, it always sucked, but at first it was a fresh situation and it was easy to be optimistic. Less so now. Apologies about this. I’ve been trying not to sulk, but it’s becoming difficult.
The real problem is the brain fog. I’ve never been a very active person, so it hasn’t been too hard to limit physical exertion. Don’t get me wrong, it’s still been frustrating, inconvenient, limiting and an all round pain, but I’ve found I can do it and still have a life that makes me happy.
I’m having a lot more trouble limiting cognitive exertion. The big part of this is that the university semester has just started up again, and although I only have one subject for my post-grad librarianship course, it’s a course on readers’ advisory, which means a lot of reading. Like, a lot. And reading is cognitive exertion. And cognitive exertion leads to brain fog. And brain fog is utterly debilitating.
You know when you read a sentence and you understand every single word in that sentence individually but together it makes no sense, and you’re left wondering if the sentence actually is nonsense or if it’s just you missing something? Brain fog is like that, but with everything in the entire world and you know it’s you. When I have brain fog, I can’t put things together meaningfully. Things I’ve never thought of as cognitive activities have suddenly become challenging, or just downright impossible. These are things like remembering things, following a recipe and cleaning the detergent compartment of the washing machine.
This issue has been lurking for a while, but it has been manageable. I found that re-reading easy things is relatively gentle on my mind when I turned to Harry Potter after brain fog forced me to abandon Moby Dick. But now that I have to read academic writing and chew through a mountain of fiction for uni, I get brain fog most days.
Lately I’ve been doing a lot of knitting and feeling guilty. The guilt is because I feel like I should do as many useful things as possible, because I can’t do many things and my partner has to pick up the slack. Expending energy on knitting means I’m less useful than my maximum useful output.
But I’m knitting anyway, for a number of reasons.
The first reason is that I like it, it doesn’t tire me out that much, and it neither brings on nor is impeded by brain fog.
The second reason is that my knits are potential bribes for people I know in the real world to come and visit me. So people who are nice enough to come and talk to me might just get a beanie out of it.
It was probably a mistake to put that information online. I have no illusions about my knitting ability, and the promise of free knits would be more of an incentive to stay away. In fact, I’ve never even knitted a beanie. I probably can’t. Scarves and headbands are more my level.
The final reason I found in the pages of Harry Potter. And it is the most important, I think.
It means I’m free, even if it’s just a little bit. I produce something. I have something to show for the time I spend knitting. I might have to study from home, I might have to abandon hopes of getting job any time soon, I might struggle to read or write, I might lose my train of thought and forget simple words, I might not be able to walk more than a few hundred meters on a good day, but, damn it, I can still knit just as much and just as well as if I was healthy.
And ok, Dobby the house-elf being freed by clothes and then wearing a crazy collection of knits as a symbol of his freedom is not exactly like knitting to rebel against the confines of illness, but whatever. It helps me.
Initially, this is how I wanted to end this post:
Tenuous connection or not, tomorrow I am going to put on all my scarves, yell “Dobby has no masters!”, dive back into Moby Dick and get my white whale.
I was excited about that ending. Writing it made me feel like I could do anything, and I was determined that I would. But that’s not how this post ends, because of reality.
Moby Dick would be hard through brain fog anyway, but I can’t even try chipping away at it while I have so much uni reading to prioritise. Maybe at the end of the semester I can try it again, but not now.
Also, that ending was to have a picture of me, mummified in scarves, on a ship chasing a white whale though a storm. I tried to draw it and couldn’t. It was the shape of the ship and making it work with all the background shapes like waves and clouds and the whale. My mind was all foggy and I couldn’t draw.
This was, to date, the most upsetting thing that chronic fatigue has done to me. My failure to clean the washing machine detergent compartment was defeating and degrading, but my ability to clean a washing machine detergent compartment has never been important to me as a person the way my ability to express myself through words and pictures has.
So I couldn’t end like that, with a “screw it, I’ll do it all anyway!”, because I can’t. I can’t. I can knit scarves, but I can’t chase whales. I need to accept the things I can’t do and find victories in the things I can.
I can’t guide that ship through the fog in my head.
But I drew something else.
I’ll end with this.