Today is one year from when I got sick with what we now know was COVID-19. Actually, last night would have been one year, as my first symptom came while I was at dinner with friends (a tickle in the back of my throat and a very slight cough). The next day I went grocery shopping with another friend, and noticed while in the check out lane that I was absolutely boiling, and dripping with sweat. That was when I realized I was sick. I’m rather amazed none of the friends I was with caught it from me, although one of them caught it months later, and luckily has recovered fully.
Last Monday my doctor and I had “The Conversation”; the “we need to think about what your new normal might look like if you don’t fully recover. You are still recovering, and you are still getting better, but we need to think about what life looks like if you can’t go back to everything you used to do.” Friday morning I woke up from a dream in which I had taken the bus downtown, and was wandering around windowshopping. As I started to wake up, I got confused, because I realized, “Hey, wait, I’m disabled now. Can I actually do this?”
Today I want to write a blogpost, but I don’t know how much time I have. Sundays are always bad. I started chilling once already, and the chill moved from my fingers up to my shoulders. I was afraid I’d have to stop, but the cold hadn’t hit my toes yet. Then I started burning up, so I know I have a little more time. Let’s see what I can get done before the chill sets in more deeply and I have to go lay down.
I’m in neuro rehab. Someone asked me what that looks like. Extremely briefly, neuro rehab is (for me) a lot of doing less: reducing exercise to avoid triggering crashes, and very short burst exercises to preserve muscle tone. I’m oversimplifying, but that’s the general idea. The idea is to learned what my warning signs look like, and stay within my “energy envelope.” Over the roughly six months I’ve been in rehab, I’ve moved from being able to walk five minutes once a day to walking farther but extremely slowly to avoid the shortness of breath and later crashes. This week I walked around the block for the first time in a long time (couple months?). It took me 50 minutes because I had to go so slowly to avoid triggering my body into a crash cascade. I won’t attempt walking around the block for another week at the earliest. The last time I triggered a major relapse was when I walked around the block for the second time in a week. So, I won’t do that for a while. Meanwhile, we’ve started using RingFit Adventure with custom workouts for the short burst exercises. (I just had to use cool tech, right?) When I started with this it was just the “jogging” (for me, walking in place), the Beginnia course, on “Light.” The game estimates this as 3.3 miles distance and should take 2 minutes. That first day, 2 minutes only got me a fraction of the way through the course and triggered a 2 day crash. A month later I finally succeeded in completing the course in 4 minutes. Now, I can complete that course in 3 minutes. I’ve also been doing some upper arm and core stabilization sets, and my rehab PT has designed custom exercise sets for me within RingFit, which my son programmed into the device. Right now, they’re still a bit much for me, but I’ll get there.
Reading, Then Writing
What do other activities look like? Well, I’m a librarian. Let’s look at how reading has changed for me over the past year. Reading is easy, right? It’s not like exercise, not physical at all.
For months, I actually didn’t read hardly at all, outside of work. I would finish work, stagger to the couch, cover up with piles of blankets. I’d rest while my son made dinner, then I’d try to sit up long enough to eat it. While eating dinner, we’d watch something on TV, usually something rather mindless and cheerful. It took me a while to figure out that cognitive work triggered crashes as much as physical exertion. I was frustrated that I just couldn’t make my brain work with the books I wanted to be able to read, the books I’d been reading before I got sick. When I was able to start reading, I had to keep my reading to simple distracting stories that took me away from my real world.
I also had to read only things that I had on an e-reader. You see, I couldn’t actually hold a book very long. My hands would shake too much, and it was exhausting to use my thumbs to hold the pages open. We would set up my Kindle on a tray, and I would tap the page when I was ready to move to the next screen. I also made the text larger, so I didn’t have to have it at normal reading distance from my face. (That’s another weirdness of COVID for me — my day vision improved, and my night vision worsened. This lasted for many months, and about 2 months ago my night vision returned.) I found MCA Hogarth’s books healing to my spirit, and have now read the entire Peltedverse series twice. In the beginning, I could only read a few minutes a day, and it took me a long time to get through the first book, but then I picked up speed, and now I am back close to my original reading speed.
Last summer a friend and colleague loaned me two books in print (Star Wars: From a Certain Point of View, and Once and Future Witches), both of which were absolutely fantastic. I started with the Star Wars anthology because it was short stories, and I figured that fit my mental energy envelope. I started out reading one a week, and worked up to one a day. Eventually I got to where I could read a few in a row, and finished the book. I don’t know how many months it took me (four? five?), but I finished it. For the witches book (which is fictional history about feminism, racism, suffragettes, and has a magical library in it), well, it’s a big book. It was hard for me to hold. I started in December. Again, I had to start slowly, and build up to where I felt I could hold the book for reading. It took me about 2 months to get halfway through the book, and then I finished the second half of the book in less than a week. It’s a really amazing book. I wanted to reread it immediately, but I’m waiting.
Right now, I am still reading mostly on the Kindle, but am trying to read a few pages in a real book each day. I am still reading mostly light weight entertainment, but am building up my mental strength with poetry and research articles. I’m in a couple book clubs, and have been buying the books for those groups, but have not been able to complete reading them. I’m finding writing challenging, but with help (a LOT of help! and a co-author!) I was able to finish a book chapter on deadline, and it feels good. My articles for research journals are all on hold for the moment, but I hope to be able to get back to them within the coming month(s).
More to Come
Next time, maybe I can talk about laundry, dishes, and cooking, LOL! Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) are still things for which I can do fractions, broken up into pieces, and stretched out (we call this “pacing”). Like everything else, these were a lot worse several months ago, and are a lot better now, but better is still a long way from what I could do before.
Research from SARS-CoV-1 shows that people who had LongCOVID types of reactions to that virus tended to recover in waves. Most within a few months. More within 6 months. Then another group by a year. Almost all within 2-3 years. A few never fully recovered. For me, I’ve had these kinds of conversations with doctors before. I had serious carbon monoxide poisoning back in 2002, with amnesia. Two years out my doctors told me what memories were still gone were lost forever. But even now, decades later, I’m still recovering memories. I’ve learned that neuroplasticity is a magical thing, and that you feed it by TRYING to do things. The basic message is that I’ve come a long ways, and I have a long ways to go, but I’m also a long, long ways from giving up.