My First 14 Nerve Blocks

Filmmaking while drugged, having faith, and getting worse before better

And on the seventh day…we did not rest.

Monday was day seven of treatment. Two nerve blocks a day, every day. About 4 hours in the doctor’s office per day. I made the most of the time & shot my first video diary during, which is posted below. After the paywall. (I know, I know. But don’t you want to see my heavily drugged filmmaking? There’s a free 7-day trial if you’re not quite sold. Or you can give my day a boost and upgrade your subscription. Your call.)

In the beginning…

It was hard.

The first three days were the hardest. I’ll be honest: not hard in a “look how strong I am” way, hard in an “I don’t know if I can keep doing this” and “Have I made a horrible mistake?” way.

Hard because I found not just that I was more fatigued - as the doctor warned I might be for the first week (or even two) of treatment - but hard because I was also losing new faculties. Specifically: I was growing much more sensitive to sound, a problem I hadn’t had before. A big problem, because this meant that I couldn’t listen to audiobooks or watch things - both of which I’d been relying on a lot ever since developing the eye convergence insufficiency that made reading so much harder.

It was hard enough that, on day three, I FaceTimed with the doctor to say I think I need a break, I’m scared.

I was scared because, throughout the course of this illness, every time I have gotten worse - gotten worse meaning lost the capacity for something - I have not regained it. And that’s a trajectory I read about often online with ME/CFS, it is accepted as the default. That’s why everyone talks so much about pacing, about the importance of holding onto your baseline.

I could go more slowly, the doctor said, we could take breaks - but it’s like trying to put out a campfire. If you put one bucket of water on it periodically, it won’t go out. If you douse it and keep dousing it, it will. My brain is the fire.