Today it’s been roughly a week since I was able to walk around the block I live on. That’s in part because I’ve been doing other things. Conference presentations, physical therapy, meetings, research, too much. My current tentative diagnosis is viral post-COVID dysautonomia. Briefly, dysautonomia means that all those things your body is supposed to do without you having to think about it? They get messed up. Like this.
Sometimes my body forgets to breathe, and I realize it when I get dizzy or the computer grays out. Sometimes I’m walking towards something, but veer sideways instead. My heart might decide to go extra slow (bradycardia) or extra fast (tachycardia), and it doesn’t have anything to do with how active I am or how fast I’m moving. I feel too cold, or too hot. People think fevers with COVID, but for me it’s been more chills. When I was actively infected, my body temperature tended to be around 93F, instead of the 104F they warned people about. Yesterday it was 96.8F. This morning it’s 94.6F. I don’t just feel cold, I am cold.
Now, this probably sounds weird to folk whose bodies are behaving and doing what they should, but it’s actually not unusual for folk in the long COVID community, a.k.a. COVID long haulers. COVID is weird, and it can damage basically any part of the body. That damage is showing up in a lot of different ways for different people, but among the leading trends are new diagnoses of dysautonomia and myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Along with these, people are showing up with new issues that look like mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS), heart issues, lung issues, kidney problems, diabetes, sleep problems, brain fog, memory loss, skills losses, and neuro issues. Some of my long COVID friends have had to get pacemakers. And we aren’t even hardly talking yet about things like PTSD or depression.
Weird, WEIRD things happen. I read about a guy who lived in another country, married a woman there, had a family, got COVID, and forgot how to speak the language. He can’t talk to his wife anymore. That’s when I realized that I’ve lost some of my French. I used to be fairly fluent, and I can still read it, but when I try to speak it, it feels like I tugged on a rope and it broke. There’s just nothing there, but it feels like there might be. I don’t use my French often anymore, so I hadn’t missed it, until I tried.
The long hauler groups are full of people with weird things happening trying to figure out if this is still part of their COVID experience, or is it something else wrong that they are attributing to COVID? Women on the cusp of menopause tip over and their periods just stop. Women in their 30s show signs of early menopause. Women past menopause find their periods start again. Women who always had normal menstrual cycles find their schedule is out of whack, and their periods are much lighter or heavier, or both, or their period starts and doesn’t stop. For weeks. There’s lots of talk about hair falling out, or turning white, or color changing. Sweating when it isn’t needed, or not sweating when you’d expect it. New onset of diabetes. Clusters of symptoms from the infection that just don’t seem to ever stop.
So. What do we do? I mean, how many folk have had COVID now? And how many of those will end up with some version of LongCovid? Estimates range from a third to 10%, but clearly it is going to be a LOT of people. If the USA put 10% of its total workforce on disability for long term impacts of COVID, we’d be in a world of hurt. Can insurance cope with the costs of rehabilitation? Does rehab even work?
Lucky for us, the UK is way ahead of us here. They were hit with COVID before most of the USA, and they have socialized healthcare, so they are on top of this, figuring out what works. The National Health Service already has a website for COVID long haulers: Your COVID Recovery. They have a handout for patients, and planning documents for healthcare organizations that include a list of services these patients are needing (so far). One thing that seems to prevalent is a kind of neuro-rehabilitation. Basically, over-simplifying, this means we are trying to remind our nerves how they are supposed to work, and sort of jolly them along with, “Good! You can do it! That’s right, you’re getting it!”
Last time I saw my doc, they told me that my knowledge of LongCovid is way ahead of theirs. I am (surprise) really paying a lot of attention to this (see Twitter thread). My doc can support me by ordering tests and requesting therapy, but the expertise just isn’t here yet for what to do for folk like me. I’m passing along resources I find, being highly selective and focusing on clinical care. We talk about them, and decide what seems most reasonable for me and my cluster of weirdnesses. I try to negotiate insurance coverage for whatever, and maybe we try it, maybe we don’t. Right now, neuro-rehab is the name of the game, and I started PT last week. If you’re curious about what a day-in-the-life might look like for this, here’s an excerpt of my symptom log from last weekend, the day after my first PT visit, lightly edited for typos and spelling.
Woke up, showered.
Resting Pulse: ranged from 45-67bpm
Oxygen levels ranged between 90-100
Tired early. Had trouble watching the morning virtual events. Couldn’t sit up. Had to lay down by 10:15am
Left hand tremors
Chest pain – brief
Felt outside of the world
Cold, lots of blankets (4+dog)
Couldn’t hold phone or open eyes, but wasn’t sleepy
Cold feet. Hands were warm
Tinnitus ringing in both ears
Later it felt like the tinnitus was in my brain instead of my ears.
Voice froggy/staccato-y all day
Came out of brain fog about noon, could hold phone. Feet still cold
Cold spreading up legs. Kind of burning cold.
Sleepy again by 1pm. Kiddo made me eat an omelette
Took blankets off at 2pm, put them right back on. At 2:30 took off top 3 blankets. At 3:30 took off last blanket. 3:40 back on. Checked pulse/ox. Ox was 92. No wonder I feel crummy. Up to 98 some minutes later, but dagnabbit, body!
Right leg fizzing .
5:30pm. I think I can stand up soon. Sit up.
5:45pm. Sat up. Drank morning coffee
6:56pm came out of tunnel vision, and again at 6:59. Evidently layers of tunnel vision
Tinnitus moved back to left ear
A few brief hot flashes, none long enough to take my sweater off
7:38 stood up and moved. Discovered skin peeling in new spot
Mild pressure in head
Nighttime: firefeet, burning scalp , sweats.
Yeah. Fun times. Today is the end of the 7th month since I caught COVID.