(un)Diagnosed: Day 550 (18 Months, 78 weeks) It’s not over until it’s over … 


A square of white notepaper on a dark blue fabric background. The notepaper is folded into quarters, and in each quarter is roughly sketched an eye. Top left: a colorful eye with a rainbow iris; top right: a gray eye surrounded by purple, blue, and green; bottom left: a half closed eye showing lavender whites and surrounded by thick gray; bottom right: a closed eye.
A sketch I drew of Long COVID for a workshop during the Graphic Medicine Unconvention, August 13-15.

It’s been a while since I did one of these updates, and a lot has happened. And nothing has changed, or … at least it feels like that some days. Today it is 18 months since I developed the first symptoms of COVID, 500 days. It’s starting to feel like … forever. It’s funny, because I was so hopeful and determined for so long, and now I’m not. I’m much better, but part of me is giving up. The closer I come, the farther away ‘normal’ seems.

The drawing at the head of this post is one I drew during a workshop for the Graphic Medicine Unconvention. I have hand tremors now, better some days, worse other days, but the quavering in the lines is that, the tremors. It made it hard ro draw, and I wasn’t sure I could draw anything at all, because the tremors were pretty bad that day, but I decided I could draw cartoon eyes. I grabbed felt tip markers, and tried. Expert storytellers say to start your story before everything changed, when things were normal. That’s the first eye — all colorful, bright, vigorous, full of Spring and colors and energy. The second eye shows the early months, the acute COVID phase, and the first many months of the long COVID experience, when I was constantly bitterly cold (except at night, when I was burning up). I cut my hair extra short in December, but no one noticed until mid-summer, because that’s when I finally stopped wearing winter hats indoors all the time. The third eye is half asleep to show the fatigue and brainfog. The last eye, the fourth one, is closed, just a few chicken scratch black lines, to show both the extraordinary amount of time I spent sleeping over the past many months, but also the times I just wanted to die. I’m pretty sure I’m past that, or I wouldn’t be mentioning it, and let me tell you, my family is more than ready for that part to be done, but when I drew this it was still a far too vivid memory.

In some ways, I’m a lot better now. In some ways, I’m not. I’ve just been approved for a graduated return to fulltime work. I’m supposed to be back fulltime in two weeks. Cognitively, I’m ready. Brainfog is rare now, and I’m cognitively more clear than I was even a couple months ago. My cognitive endurance is much better, and when I push things too much, I bounce back faster.

Physically, I’m not remotely ready. I was almost ready in June, but then there were some problems with my being switched to a different rehab program to speed up the process, and instead it knocked me back several months of progress. It’s a long story, and I don’t want to talk about it, so don’t ask me. It’s enough to know it was bad, really bad. At the time, I was walking about 4500 steps a day. Nothing like the 11,000-12,000 I was doing before COVID, but enough that I could probably get to and from the office on public transit. I felt great. I felt like I had so much energy. I was so hopeful. After the crash in early July, I was knocked back to 700 steps a day, and I spent a month crying every day at some point. Pacing is absolutely critical for Long COVID folk like me, with predominantly neuro symptoms. Part of pacing is figuring out your warning signs. After this crash, they all changed. I couldn’t tell how to know when I’d done too much. I felt really lost. Things gradually started to return to something I recognized, but it took a long time. After two months, I’m now up to about 1500 steps a day. This is not enough to get me to the corner drugstore and back safely, but I’m working on it, and hopefully in a few more months, I’ll be back to the 4500, and able to try to go to campus again.

Okay, enough of that. It still looks like I will eventually recover to a level that will allow me something resembling a normal-ish life. I remember telling my neuro rehab therapist during the first appointment, “I want it back. My life. I want it ALL back!” I wouldn’t say that now. I do think I’ll get back to everything I used to do, just not at the same level or speed I used to do it. And there are silver linings. I used to have an uncontrollable vocal fry that made me have to stop singing, and the treatments I’ve been doing have given me back part of my singing voice. Not much, but at least I can enjoy singing in choir again. I’m grateful for that!

Overall, healthcare doesn’t know much about COVID or Long COVID, but they have learned a lot really fast. There is more coming out all the time. As you might imagine, I’ve been keeping an eye on this. I’ve been collecting a lot of clinical guides, best practices, interviews, etc. I’m going to put those in a post, but not this post. In a few days. I have all sorts of goodies to share with you!

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