“[T]o be a nerd node of trust is that you are not pretending to expertise you don’t have, but you’re helping your immediate network – your friends and your family – make sense of and interpret this glut of information they’re receiving.” How To Talk About The Coronavirus With Friends And Family. https://www.npr.org/transcripts/826612240
The last time I posted about my COVID-19-maybe experiences was April 3. At that time I was, at least in public, calling it “good” and “done.” Anyway, that was the hope. I thought it was over, because the fever stopped. It wasn’t. If you had been tracking those early posts you may have noticed the posts were getting farther and farther apart. While, according to the guidelines and recommendations at that time, I should have been past the worst (which is what I said), in reality, the worst was just beginning. I’m one of the long haul folk who probably had it but doesn’t test positive.
When I talked with the clinic on the phone, the first few days I was sick, they told me this was probably COVID, but a mild case; to call if the fever spiked or I had trouble breathing. None of that happened during the first few weeks. They didn’t mention severe chills, fatigue, purple fingernails, brain fog. They didn’t mention the excruciating fatigue, loss of balance. At Day 30, I still couldn’t walk around the block, and I was starting to think that without the fevers, I’d never be warm again.
There were so many things I didn’t mention in the early posts, in part because they didn’t fit the profile and I was trying to provide relevant helpful information, in part because I didn’t have the energy for that much detail, and in part because I didn’t want to scare people. I did jot notes, but there were times I was too exhausted to even do that. I would try to remember them for later, but the brain fog could be incredibly thick. I didn’t always make a lot of sense, and between that and my tendency to fall into the wall while trying to walk, my son was pretty scared. He ended up in the role of being my caregiver throughout this, my hero.
Today is day 101 or 102, depending on how you count, and whether you count from zero or one for the first day, whether you start with the tickle in my throat the day before the fevers. I had hoped to get this done for day 100, but there are good days and bad days while I’m recovering, and yesterday was exhausting. When I stopped writing about my COVID experience the real reason was that I was simply too exhausted to write. I’m not going to try to describe what happened during the whole several months past, but there were a few events that stick out.
- Day 40: That time I did my first load of laundry since getting sick, and ended up in the Emergency Room overnight because I couldn’t breathe, and had a sense of pressure in my head. And took 2+ weeks to recover.
- ~Day 50: When I could smell the coffee, and it smelled so amazing. Around the same time, I remember the first time my toes stopped hurting, and the sense of relief and relaxation as I fell asleep without pain.
- Day 66: That time I couldn’t sleep because my throat closed each time I started to fall asleep. Which turned out to be a new food allergy. That could be a post all by itself.
- Day 84: That first time time I went grocery shopping, and it took four days for me to recover enough to put the groceries away.
- Day 97: That second time I went grocery shopping, got about 5% of what I picked up the first time, and it took me two days to recover enough to put the groceries away.
THINGS I DIDN’T MENTION BEFORE
About a month out, I read an article about how much we are learning and have learned from the diaries people kept during the 1918 pandemic. Since I had stopped blogging about it by then, I started jotting notes of things I thought might possibly relevant, even though, at that point, they weren’t considered to be part of the profile.
What the cold felt like. How my toes ached and ached and ached. How my toenails were white banded with purple and blue. Sometimes my fingernails, too. I could be covered with a pile of blankets a foot deep, and still be shaking from the chills. I would be in online meetings for work, with 2 or three layers of blankets out of sight on my lap, wearing five layers of tops, and wrapped in a winter scarf and a blanket over my shoulders. Meanwhile, my son was running around the house in shorts and a t-shirt. I was always a little bit warmer in the morning, and the cold increased as the day moved along.
The balance issues were significant, and still come back when I overdo things. I couldn’t stand without help. I couldn’t walk without help. I was so dizzy I would run into door frames and walls as I walked past. It wasn’t unusual to hit the wall hard enough to leave a lump on my head and bruises. Of course, I couldn’t cook, so we ate what my son could cook. Omelets on rice. Spaghetti. Handfuls of salted peanuts. Boiled chicken thighs.
I craved boiled chicken thighs most of the time I was sick. I’d eat the chicken and drink the broth. The only thing I could taste was salt, so everything I ate was heavily salted. Sometimes the salt burned my tongue. After I started to get better, my cravings changed. For a month now, I have been craving steak, bloody. Liver. Green salads. Grapefruit. Given that I was a vegetarian most of my life, and have never been much of a meat eater, this is pretty peculiar. I keep thinking I’ll stop craving meat, but it hasn’t happened yet.
At the peak of the illness, my teeth were completely gross and webbed, even if it was only a couple hours since I’d brushed them. I had a series of skin infections. Sometimes my skin was bright red or bright pink, and shiny. My hair, nails, and cuticles were growing at a ridiculous rate. It was weird that my nails irritated my skin. If I let my hands relax, the fingers would curl over and touch my palms, and then my palms would start to itch, badly. It reminded me of when I was a teenager and discovered I had metal allergies and reacted to necklace chains. That bothered me badly for several weeks, grew milder, and stopped about two weeks ago.
I had CRPS a few years back, following an injury. CRPS is complex regional pain syndrome. I was treated for it at that time, and it mostly but not completely resolved. That’s a different story. Anyway, while I was sick, the CRPS flared up again, repeatedly. Often it was worse at night. Sometimes it would come on suddenly, others it just tingled and felt weird in the affected locations. It hasn’t bothered me for a week, so I’m hopeful that it is started to calm down again. I also started getting lots of headaches and migraine-types of events. I went through a couple weeks of feeling like my feet were burning, also known as “fire feet”, keeping me awake at night. So, … neuro stuff.
And cardiac stuff. My resting pulse rate ranges from 10-20 beats per minute slower. My pulse when I am walking slowly is 2-3 times higher than my new resting pulse rate. Fun stuff. New veins became visible in my hands. I took pictures because it seemed weird, but they’ve gotten smaller again.
It was really interesting that when I was in the ER, the x-ray showed residual infection and scarring in the lungs, and some possible heart damage, but up until that point I hadn’t had a sense of having pneumonia or trouble breathing. I didn’t start having trouble breathing or the “COVID couch” until after I started to get better. When I did, those symptoms then lasted for another month or so. Air hunger is a real thing.
Day 101. When I was finally tested for COVID19 it was over a month into the journey. The tests came back negative. When I was tested for antibodies, it was three months in. The test came back negative. But the doctor in the ER, and the other doctors I’ve seen all say they don’t know what else this could be. Some people get a positive test, but no antibodies. Some the reverse. Some neither. Some both. What does it mean? Right now, we just don’t know.
I watched a video last week, not by a doctor or medical expert, but by another survivor like me. He had some thoughts that seem to make sense about some of the trends in the research, and why folk are testing negative. It’s interesting, and I hope some folk with more medical and statistical analysis expertise than me will expand or explain why what he says does or does not work.
COVID-19 Antibodies: Why is Everyone Testing Negative? – NEW DATA https://www.youtube.com/watch?feature=youtu.be&v=AuKAg52mz4s