I wrote the following post last May and didn’t post it because I needed to edit it. I still haven’t edited, but finally decided it was more important to post that to have it be finished.
May 27, 2017
“I’m so happy to see all of these activities that you’re doing!” When my third friend commented on all the activites I’ve expressed interest in on Facebook—and assumed I’d actually done them—I knew it was time to follow up.
When a chronic illness blogger goes silent, readers generally assume one of two things happened: the blogger is so sick that they can’t keep up or is doing so well that they’re out having fun instead of writing. It’s rarely that simple or straightforward. Given my recent posts, I think most of you have assumed the latter.
I don’t want to worry you. I am doing remarkably well. But that brain fog I attributed to Wellbutrin is actually a side effect of my new treatment. It’s a constant low(ish)-level fog that keeps my mind functioning at about 90% all the time. I can do the normal things of life and carry on conversations pretty well. I feel mostly normal, until I sit down to write and it becomes abundantly clear that I’m not all here. After so many years of cognitive dysfunction, I thought I’d figured out how to work around it. I had as long as it followed the pattern I was accustomed to. That brain fog had peaks and valleys. I rarely become as incoherent now as I did in previous years; I also don’t have the same high-level of functioning that I used to enjoy in the my clearest moments of previous years.
So I don’t write. I think about writing. I try to write. Then I stop because I get so frustrated that I’m not all here. Instead, I spend my time feeding myself (and reading recipes gleefully) and trying to walk five miles a day and practice yoga. Back pain—a result of increased movement in an out-of-shape body—means my schedule now includes weekly visits to a physical therapist and about an hour of special stretches and exercises each day. I actually feel kind of lost right now. “Adrift” is the word that comes to mind.
I’m not sure how to organize my days (and my life) when I can’t think well enough to work and don’t have migraine looming over me all the time. Well, that’s not entirely true. Migraine does loom over me al the time, it’s just a smaller shadow than usual. How I respond to my treatment is still fairly unpredictable. While I do have more good hours in a day and even my migraine hours aren’t as debilitating as they used to be, I still have down time most days and I never know when it will be.
Everything I wrote in May is still true, though I feel less lost than I did. Unfortunately, beginning in June, I’ve also had several significant bad migraine spells. The treatment is still mostly working, but it’s incredibly finicky and unpredictable. I am working on a post about the treatment and promise to publish it even if it needs a lot of editing!