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I Have Long Covid. This Is What That's Like.

There is, for me, Before Labor Day and After, although I gave up trying to make a cute acronym. It always looks like a baseball abbreviation, and I don’t have the energy anyway.

Energy might be a recurring theme in this essay. I’ll try to keep the references minimal.

I was infected with the Covid-19 virus almost exactly 2-1/2 years after I began trying hard to avoid it, which struck me at the time as a good thing. I’d been diligent and vigilant and then just lucky, so by the time Labor Day 2022 rolled around I was as protected as I could be. And while I knew the odds of getting infected were getting better, I was over any residual fear. The worst would be a couple of uncomfortable days at home in bed.

It turned out to be slightly worse, in that I spent those days quarantining in a hotel room in San Antonio. And also because of, you know. But otherwise it was fine, mild fever and chills the first night, then marathon napping and reading, rinse and repeat.

And while I can find no shortage of irony here, I’m not all that comfortable with irony, so I’ll just point out that the day after Labor Day the new bivalent booster became available.

I spent Labor Day in two airports and on one airplane, my wife and I heading to San Antonio for a quick visit with our daughter and her family. We were essentially the only people wearing masks, so it was either that or just our time, but just as we were heading back to Seattle, on September 10, we both tested positive (she was symptomatic). We double-checked with PCR tests and then headed to the hotel. It wasn’t ideal but it wasn’t bad (travel insurance saved us $1200!), and we were at home six days later.

Julie cleared quickly and was off on her busiest autumn in years, plenty of spark and feeling good. I continued to test positive until nearly October (about three weeks); I’m not sure this correlates with anything in particular, but I note it because it might explain why I didn’t really notice that I wasn’t getting better. I had Covid, duh.

By the fourth week, I’d started wondering. I was still exhausted and feeling rundown, and I’d had a couple of bizarre experiences – I’d do some minor exertion, 20 minutes or so of lawn mowing or walking around the block, and then I slept for five hours. This probably happened 3-4 times before I decided that doing something over and over again and expecting a different result was not a good look for me.

A physician friend was the one who suggested long Covid. I was aware; I remembered back in the first months of the pandemic, hearing about people with lingering illness. Young people, sometimes, healthy and active, disabled and left to look at life from the sofa. Covid was scary back then.

I’d heard it mentioned since, of course. Long Covid, long-haulers, post-acute sequelae of Covid-19: whatever it was called, I knew it was out there and it didn’t sound good. But it also didn’t sound like something I had to worry about. My Covid was pretty mild.

Most Long Covid patients begin with mild Covid cases, as it turns out. Because most Covid cases are mild.

And most of them are under the age of 50, which makes me an outlier. I’m 64, fully protected (at the time, anyway), no risk factors other than age, mild Covid and no hospitalization. From the data available now, it looks like I had about a 10% chance of having long-term symptoms.

You’re at low risk for this, in other words. I wouldn’t worry. I would pay attention, though.

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I have lots to tell you about this, but (again) limited energy. And maybe limited interest, given the unlikely nature of my situation, but then we had the Golden Globes. Following the awards ceremony, we heard the news of lots of celebrities testing positive, and the general reaction was, “Oh gosh, how inconvenient. *shrug emoji*”

Listen: You have MUCH better odds of developing Long Covid with multiple infections. So much better.

So, if it helps, this is my story. Or the beginning of it (see energy comment above). I have a ton of information I can share and might, down the line. Right now, I just wanted to paint a picture for you.

Long Covid is a constellation of problems, because Covid isn’t a respiratory disease – it’s a systemic one. This is a nasty virus that does a number on human beings, and the data shows its fingers reaching into multiple systems, particularly vascular. There’s nothing incontrovertible yet, but a likely hypothesis is that Covid somehow promotes micro-clot formation, which impedes blood flow. Wonder what not getting enough blood to your brain is like? Yeah, like that.

There are some 200 known symptoms of Long Covid, although most people seem affected by particular areas or systems. Most of my problems are of the dysautonomia sort; it’s as if I’m a wonky operating system that’s starting to throw errors. I’m often incredibly unsteady on my feet, and I’ve fallen a few times (just bruises). I have near-fainting episodes almost daily.

I have episodes of POTS (postural orthostatic tachycardia syndrome), common in Long Covid, which for me involves a spontaneous rapid heart rate and light-headedness with minor movement. I’m no longer comfortable driving. I get daily chest pain and headaches, along with incredible muscle and joint pain that will show up one day and then disappear the next.

I have cognitive issues, which are embarrassing and very susceptible to denial on my part, but they exist. Memory problems, confusion, lack of focus; I’m Covid stupid a fair amount these days, and I seem to have zero imagination, as if that part of my brain was put to sleep. I haven’t done anything creative, essentially, in over four months.

Then there’s the bone-crushing fatigue, something I’d never experienced before. Sometimes I go back to bed after being up for two hours. Most days, I manage a couple of hours on my feet spread out, stopping every 10 minutes to sit down and rest, able to get minor chores done. I might sleep 13-14 hours cumulative every 24, although some days are better than others.

And at least once a day, I suspect I’m nuts. Just bonkers, delusional, paranoid.  I wonder sometimes if I even had Covid in the first place. I question everything, wondering if I’m masking a serious depression or some other emotional issue.

But it was around 6-7 weeks in, when my daughter suggested checking my blood oxygen level, that I figured it out. I’ve had a pulse oximeter sitting around here for years; I used to use it to check my pulse during exercise before we got fitness trackers. I always note it when I’m getting my vital signs taken, and it’s always been 99%. I went back through 10 years of medical exams just to be sure. Never less than 99%, perfectly normal.

And it was 93%, which precipitated a call to my doctor because 93% is cause for some alarm (anything under 95% is worrisome). It varies during the day and I check it occasionally, sometimes up to 96%, sometimes back under 95, but never the way it was.

Neither am I, as it turns out. Not the way I was before Labor Day. I have no idea if I’ll get better, either, but there’s plenty of hope in the numbers. What I initially thought might resolve in three months might linger for another eight or longer, but most people get better. I expect to get better.

And I’ve decided I need to write about it, or at least journal. I’m not sure how interesting it’ll be to read, or whether I’ll even be able to do it, but that’s the plan.

Stay safe. If you need me, check the sofa.