Just Raging at the Universe

Usually when I post here it’s when things are on an upswing. Some kind of rough episode has happened, but is starting to pass, and I need to digest it and look forward.

Today I’m posting from the bottom, though. I feel like shit and just need to scream into the void.

I still have very little grasp on what makes my periods of brain fog better and worse. Clearly there are basic things that worsen it, like poor sleep or very long days.

But I can be taking perfect care of myself and it still returns. It’s connected to my thyroid levels, somehow, but I don’t think that explains all of it. (Although it didn’t really kick in until my thyroidectomy.) It’s doubtless cancer-related, though I don’t know anyone with this level of debilitation from cancer treatment alone. It will ease for a little while — perhaps a week — then viciously resurge. Over time, I’ve been averaging two bad days to one good day (which does not mean symptom-free), and that ratio is not improving over time. I’m learning to function through it more. But sometimes even that’s not possible.

“Brain fog” is a vague descriptor, and I don’t know if all the people with brain fog from various causes are experiencing the same thing. For me, the light version means feeling a little slowed down, a little off my game. My memory isn’t quite up to speed, my processing time is slower, tasks that should be easy — reading a journal article — are unexpectedly difficult. I can’t keep two things in my head at once. I feel a little unpleasantly spacey.

As it gets worse, it’s less about being “off” or slowed down and more of an actively dominating sensation. It feels like I am observing the world with a giant bell jar over my head that has been smeared with Vaseline. It feels like I’m trying to function after having three or four drinks. It doesn’t matter if I’m trying to think; even if I’m just doing the dishes the sensation is overwhelmingly awful. This piece by Ed Yong — about COVID long haulers, which I am not — comes closer to describing it than anything else I’ve read.

It’s not pain in the physical sense, but I think of it in terms of a 1-10 pain scale: at a 2-3 I can live pretty normally, though it’s never gone, and it still impacts my ability to do cognitive work. At a 4-5 it’s hard to ignore — a constant distraction, although I can get through a pretty normal day as long as it’s not cognitively demanding. And at 6-7 — which is where we are right now — it’s pretty much all I can think about. Sometimes I can numb out a bit with mindless TV. I don’t drink a lot, but drinking also numbs it. Basically I am trying to do things to distract myself from the horrible sensation.

“Fortunately,” most of my life is lived between 2 and 5. The last 6 was in late July. But for whatever reason, after a good ten-day stretch in the second half of September, things started to go downhill and, since yesterday, we’re back at 6.

So I’m yelling into the void. I’m not answering your email. I’m not scheduling a talk, or prepping for class or (imagine) writing a paper. I’m trying to distract myself, because although it sucks all the time, I know it won’t stay at a 6. It will get better. I just have to wait it out.

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