(un)Diagnosed: Day 731 (24 Months, 104 weeks) – Happy COVIDversary (Da Brain iz BACK)


Proof of a functional brain. Grid of screenshots showing successful game play results from Wordle, Numberle, Chordle, Quordle, and Wordle. The images are dark mode, with gray, yellow, and green on black.
Proof of a functioning brain?

Today is 2 years since that first distinctive tickle in the back of my throat that heralded in a small way what was coming. That was the day then-President Trump declared a national emergency for COVID-19. Now, that strikes me as having a peculiar irony, but I’m not sure why, precisely. It’s almost like a gong was ringing, and I couldn’t hear it. I remember thinking, “Whatever happens, we’ll be okay. We’ll figure it out. Take a deep breath and just keep going.” It was sort of true, in some ways. And, in a lot of ways, it was really far away from true. COVID-19 and I have kind of grown up together, I guess, in a sense. Do we call this good enough? 

In the Long COVID / COVID long haulers / people with PASC communities and support groups there is a special bond between those who identify as first-wavers. None of us expected to still be sick, those of us who’ve made it this far. I particularly didn’t. I looked at the research of long-term sequelae after the first SARS-CoV. It was easy to find back then, because there was so little on SARS-CoV-2. Now, I just went back to try to find that early research I’d consulted, and it’s almost impossible to sift through. For example, there are over twelve THOUSAND articles in PubMed when searching for “SARS sequelae.” If you add a date limit to find those before 2019, there are fewer than 400, and most of those were written in 2003-2005. That’s intense. Surreal. What I remember now of what I found then is that there clearly was something similar to Long COVID. Most of the folk who developed this after the first SARS recovered within a year, most of the rest recovered with the following year. By the second anniversary of the initial infection, 1% or less were still ill. I was counting on that. This whole time, I’ve been counting on that. I was determined to be one of the folk who recovered fully by the end of year one. Then I wasn’t too worried, because I still had year two before I should be worried. Right? Right. I told all my rehab folk not to worry, because I wasn’t worrying; I was going to be one of the folk who recovered.

I actually was recovering really well for a while. I’d tracked all the research and recommendations from other countries who were ahead of the USA in figuring this out. I went to my docs early on, and shared what I was finding. We got me the dysautonomia diagnosis faster than most folk are getting it even now, for those developing problems from Omicron infections and other recent varieties. I was able to get a referral to neuro-rehab pretty early, and that was showing good results for people. It was painfully slow, but it helped me make progress, too. Neuro rehab had a goal for tolerated activity levels that would have permitted me to go back to work in the office: 5,000 steps a day, 7 days a week. If I could do that, I could do most (not all) of what I was doing before I got COVID. I was at a point where I was walking 5,000 steps or more 3-4 times a week. Last May, I was looking at the light at the end of the tunnel, and getting excited about going back to work.

I’m going to skip part of the story, so I don’t get into trouble, but the short version is that I was persuaded against my better judgment (by persons involved in my treatment planning but outside my medical team) to switch rehab. The new rehab place had been misrepresented, didn’t have the kinds of resources available where I had been going, especially not staffing, and within a month of starting at the new rehab place? I’d been knocked back into a major relapse, starting over from ground zero. It was bad, really bad. I tried to switch back to my previous neuro-rehab. I finally got back in four months later, and then insurance decided they wouldn’t cover it. I’ve been left pretty much to my own devices since then. Skipping a bunch of nitty gritty details I’m sure you don’t really want to hear, I’m now back up to 2000-3000 steps 1-2 times a week, and most important, the brainfog almost completely went away last December. It was a special day when my boss said it was like talking to the before-times me. (See the opening image for my bedtime ritual. Many long COVID folk are playing games for a kind of self-prescribed DIY cognitive rehab / brain retraining.) Being impatient, I’ve been trying to go back to work in the office anyway. Once in December. Once in March. I’m determined, I’m going to get there.

As far as counting my recovery progress, I’m now counting from the relapse, not from the initial infection, so I figure I’m going to be pretty much fully recovered by this time next year. That’s the plan, anyway! Meanwhile, I had some conversations with folk who were also diagnosed with dysautonomia, and who said they were able to recover fully within, oh, about eight years. I’m seeing people with long COVID who got it after me, and have recovered. Folk teaching yoga classes, folk working on busy hospital wards, folk traveling internationally. All those folk were as sick or sicker than me, so there absolutely is still hope.

A lot of the folk who aren’t recovering weren’t as lucky with me for having access to information, diagnosis, treatment, etc. It’s just dandy for docs to tell folk they need to wear compression garments, but if they aren’t covered by insurance and they lost their job while sick with COVID, how are they supposed to get them? Ditto electrolytes. People who are now without income are being told to drink a half gallon of more of electrolytes, and they can only afford a pint or a quart a day of whatever sports drink they know probably fits the bill. No one is mentioning to them that they can make this at home, and giving them a recipe. Many folk have challenges with memory and executive function now, meaning that telling them something and pulling the brain together enough to make it happen are completely different things. Pacing is another critical concept that isn’t being mentioned to many of these folk, and over the counter things to consider trying, like anti-histamines. So, pardon me, but I’m going to drop a few (highly selected) links down at the bottom of this post for folk who aren’t sure where to start. And if anyone knows of a swapmeet / mutual-aid type of resource to share compression garments that didn’t work for the original owner, please let me know, and I’ll help spread the word.

LONG COVID RESOURCES

General

Long COVID Physio: https://longcovid.physio/quick-access

Long COVID Support (UK): https://www.longcovid.org/

Long COVID Support (UK): Resources: https://www.longcovid.org/resources/patients

World Physiotherapy briefing papers: https://world.physio/covid-19-information-hub/long-covid

Twitter thread of Long COVID Guidelines (start here): https://twitter.com/pfanderson/status/1465440816349028356

Helpful for Many (but check with your doc)

Dysautonomia & POTS

Dysautonomia International: For Patients: https://www.dysautonomiainternational.org/page.php?ID=36

Dysautonomia International: General Information Brochure on Orthostatic Intolerance and its Treatment, by Dr. Peter Rowe https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

Pacing

#MEAction: Stop. Rest. Pace. https://www.meaction.net/stoprestpace/

Long COVID Physio: Pacing: https://longcovid.physio/pacing

Post-COVID-19 Interdisciplinary Clinical Care Network: Fatigue in Post-COVID-19 Recovery: Pacing: http://www.phsa.ca/health-info-site/Documents/post_covid-19_fatigue.pdf

The Why, When and How of Pacing | Long Covid’s Most Important Lesson https://www.youtube.com/watch?v=gUPvNwvkOlA

Your COVID Recovery (UK): Managing Daily Activities: https://www.yourcovidrecovery.nhs.uk/your-road-to-recovery/managing-daily-activities/

Recipes for DIY Electrolytes & Oral Rehydration

Dartmouth-Hitchcock Comprehensive Wound Healing Center: Oral Rehydration Solution Recipes: https://www.dartmouth-hitchcock.org/comprehensive-wound-healing/oral-rehydration-solution-recipes

University of Virginia Health System: Homemade Oral Rehydration Solutions: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2021/01/Homemade-Oral-Rehydration-Solutions-9-2018-1.pdf

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