(un)Diagnosed: Day 335 (Eleven Months) Recovering, Not Recovered


Today is eleven months since I got COVID. I’m still recovering, rebuilding, and it looks like I’ll get there, but it’s going to take a while. A dear friend said, “I’m waiting for you to tell me you’re better!” Well, … I’m better, but I’m still a long, long ways from being well.

So much I want to say, and I had planned to write a blogpost today, but I’m not sure I can. On Sundays, I typically have 1.5-2 hours of useful time, but I used a chunk of that on something that came up work-related. Right now, I’m chilling pretty significantly, but have bundled up, piled blankets on my lap, am wearing a blanket poncho, two hats, two pairs of pants, gloves, and have 20-40 minutes before I have to stop for the day. If I’m lucky.

So why so little time, and why specifically Sundays? Because I wash my hair on Saturday nights. You may remember that there were issues with showering triggering crashes and relapses, and that this took months to figure out. Then it took months to try to find a solution. I spent a lot of money on things like shower-chairs, special kinds of shampoo, special shampooing brushes, adaptors for the sink faucet, and more. The only thing that actually worked and is still being used is the hairbrush, but we are using it for hair drying instead of shampooing, and mostly just because I like the way it feels.

Basically, I have not showered in months. Specifically, since December 5th. That is not something you want to admit in public in our society. Something I’ve learned over the past few months is that there are a LOT of people who don’t bathe or shower regularly, and you don’t know about it because of the stigma we associate with it that keeps them from talking about it, but you don’t know because they are actually fine. It turns out our bodies never evolved to shower or bathe daily, you know? Before COVID I was a daily-shower kind of person, so this is a big adjustment for me. After COVID one of the problems I had that I wasn’t talking about in public was all the skin lesions that just wouldn’t heal. I will spare you the description of how gross it was, and it went on for many months. I stopped showering because of the crashes, but to my surprise, when I stopped showering, the skin lesions healed up! Bonus prize.

Okay, December 5th. What was happening with the crashes from showering was that they were getting worse and worse, not better. The crashes were worse, and the recovery seemed to take longer each time. There’s layers of my body responding. There’s the immediate chilling, and the next day crash, and the three days later crash. The crash in early December? The worst ever. I’d showered Saturday evening. With a shower chair, the space heater turned up as high as possible, special fragrance-free anti-allergic shampoos, eating spicy food right before and drinking hot beverages after, laying down as soon as I was dressed again, etc, etc, all to try to keep me from crashing and chilling.

The next morning I woke struggling to walk, and then crashed BAD. Pulse of 51, oxygen of 93, and I didn’t think of taking my temp. I couldn’t lift my arms or raise my head. I couldn’t cover myself up or uncover myself. I was freezing, chilling, crying and couldn’t stop, even though there was no good reason why. Rather than keep going through this, I wanted to be dead. It just felt like it would be easier, and I felt out of strength for coping. Obviously, I was too weak to do anything, and I wasn’t planning anything, and I knew I’d probably feel okay-ish the next day, but I made the mistake of saying aloud that I would rather be dead than have this keep happening. Instant family crisis! I’ll spare you the details.

It took a few days before I could really function again. I knew I couldn’t do that again for a long time. I just can’t risk it. So we switched to sponge baths and sink shampoos. It’s better, but I still crash after the sink shampoo, so we plan those for a day when I can build up the strength to do it, and have a day to recover. This means I can wash my hair ONCE a week, and that is Saturday evening, and Sunday is when I crash. I spend my weekends mostly pretty flattened. But that’s still way, way better than wishing I was dead.

I’m in neuro rehab now, and on a 50% work reduction for a bit. I’m taking more breaks and resting occasionally during the days. I’m trying to plan my days to allow this. I’m working on work-life balance. I’m doing more exercises, but sometimes when I start something new, it knocks me back down and I have to build back up again. And I can count on shampooing triggering a crash of some sort each week. If today follows the pattern of the last few weeks, I’ll be back up on my feet briefly around 4 this afternoon. Right now, I need to go lay down, but I made it longer than I expected!

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