Tag Archives: longcovid

(un)Diagnosed: Day 550 (18 Months, 78 weeks) It’s not over until it’s over … 

A square of white notepaper on a dark blue fabric background. The notepaper is folded into quarters, and in each quarter is roughly sketched an eye. Top left: a colorful eye with a rainbow iris; top right: a gray eye surrounded by purple, blue, and green; bottom left: a half closed eye showing lavender whites and surrounded by thick gray; bottom right: a closed eye.
A sketch I drew of Long COVID for a workshop during the Graphic Medicine Unconvention, August 13-15.

It’s been a while since I did one of these updates, and a lot has happened. And nothing has changed, or … at least it feels like that some days. Today it is 18 months since I developed the first symptoms of COVID, 500 days. It’s starting to feel like … forever. It’s funny, because I was so hopeful and determined for so long, and now I’m not. I’m much better, but part of me is giving up. The closer I come, the farther away ‘normal’ seems.

The drawing at the head of this post is one I drew during a workshop for the Graphic Medicine Unconvention. I have hand tremors now, better some days, worse other days, but the quavering in the lines is that, the tremors. It made it hard ro draw, and I wasn’t sure I could draw anything at all, because the tremors were pretty bad that day, but I decided I could draw cartoon eyes. I grabbed felt tip markers, and tried. Expert storytellers say to start your story before everything changed, when things were normal. That’s the first eye — all colorful, bright, vigorous, full of Spring and colors and energy. The second eye shows the early months, the acute COVID phase, and the first many months of the long COVID experience, when I was constantly bitterly cold (except at night, when I was burning up). I cut my hair extra short in December, but no one noticed until mid-summer, because that’s when I finally stopped wearing winter hats indoors all the time. The third eye is half asleep to show the fatigue and brainfog. The last eye, the fourth one, is closed, just a few chicken scratch black lines, to show both the extraordinary amount of time I spent sleeping over the past many months, but also the times I just wanted to die. I’m pretty sure I’m past that, or I wouldn’t be mentioning it, and let me tell you, my family is more than ready for that part to be done, but when I drew this it was still a far too vivid memory.

In some ways, I’m a lot better now. In some ways, I’m not. I’ve just been approved for a graduated return to fulltime work. I’m supposed to be back fulltime in two weeks. Cognitively, I’m ready. Brainfog is rare now, and I’m cognitively more clear than I was even a couple months ago. My cognitive endurance is much better, and when I push things too much, I bounce back faster.

Physically, I’m not remotely ready. I was almost ready in June, but then there were some problems with my being switched to a different rehab program to speed up the process, and instead it knocked me back several months of progress. It’s a long story, and I don’t want to talk about it, so don’t ask me. It’s enough to know it was bad, really bad. At the time, I was walking about 4500 steps a day. Nothing like the 11,000-12,000 I was doing before COVID, but enough that I could probably get to and from the office on public transit. I felt great. I felt like I had so much energy. I was so hopeful. After the crash in early July, I was knocked back to 700 steps a day, and I spent a month crying every day at some point. Pacing is absolutely critical for Long COVID folk like me, with predominantly neuro symptoms. Part of pacing is figuring out your warning signs. After this crash, they all changed. I couldn’t tell how to know when I’d done too much. I felt really lost. Things gradually started to return to something I recognized, but it took a long time. After two months, I’m now up to about 1500 steps a day. This is not enough to get me to the corner drugstore and back safely, but I’m working on it, and hopefully in a few more months, I’ll be back to the 4500, and able to try to go to campus again.

Okay, enough of that. It still looks like I will eventually recover to a level that will allow me something resembling a normal-ish life. I remember telling my neuro rehab therapist during the first appointment, “I want it back. My life. I want it ALL back!” I wouldn’t say that now. I do think I’ll get back to everything I used to do, just not at the same level or speed I used to do it. And there are silver linings. I used to have an uncontrollable vocal fry that made me have to stop singing, and the treatments I’ve been doing have given me back part of my singing voice. Not much, but at least I can enjoy singing in choir again. I’m grateful for that!

Overall, healthcare doesn’t know much about COVID or Long COVID, but they have learned a lot really fast. There is more coming out all the time. As you might imagine, I’ve been keeping an eye on this. I’ve been collecting a lot of clinical guides, best practices, interviews, etc. I’m going to put those in a post, but not this post. In a few days. I have all sorts of goodies to share with you!

(un)Diagnosed: Day 429 (14 Months, 61 weeks) Better, and Better, and …

A grid of four photos shows macros of (clockwise from upper left) a Pedialyte bottle, digital thermometer reading 95.4F, nebulizer tubes, and a pulse-oximeter reading 96% oxygenation with a pulse of 56.
Pedialyte, 95.4F temperature, nebulizer tubes, pulse-ox = 56 pulse, 96 O2.

Here we go again, my now monthly update on life with Long COVID. Things are much better, but still complicated. Last month I mentioned that I have a neurologist now among my specialists, and that he’s made some suggestions that really helped. The most obviously impactful suggestions are increasing electrolytes, wearing an abdominal binder (not pretty, but hey, I’ll take it), and increasing my mast cell inhibitor meds (which has drastically improved the quality of my sleep, also helps with brain fog, among reducing other symptoms).

A month ago I had been able to increase my walking. I was up from walking around the block I live on once a week to twice a week. (Before that there were several months where I had been unable to walk around the block.) I tried every other day, but at that time this was still too much. I am now up to being able to walk around the block two days in a row, but I still have to rest the third day. This is simultaneously exhilarating and disheartening.

What happens on that third day if I try to do the walk? Well, the first day, walking around the block is just lovely. It’s amazing how, when you haven’t been able to, getting to the other side of the block can look like you’re on vacation. Here’s neighbors, flowering bushes, birds are singing, all these things I’ve missed for so long without necessarily realizing I missed them. The second day feels empowering. Look at me, it feels just the same, sauntering along, I can do this, I’m back to normal, soon I’ll be able to do everything. Right. The third day feels just the same as the second for the first hundred yards or so. Then the fog starts to kick in, I’ll start to have some balance issues, wobbling just a bit. After another hundred yards I’m aware I really need a rest. Luckily my block has a place to rest there. Halfway done, now to get back home. I lurch back to my feet, and the rest of the walk will be staggering as if I’m drunk, balance just gone, struggling to keep my head up and my eyes open, arms stretched out to improve proprioception, trying not to accidentally run into people or walls. So, I’ll try two days on and one day off for another couple weeks, and then three days, and keep nibbling away at it.

I am improving with ADLs (activities of daily living). I can make my own meals most of the time. I can do my own laundry. I can help with dishes sometimes. I am FINALLY able to do a little bit of housecleaning sometimes. Let me tell you, after a year of being largely bedridden outside of work hours, the house is pretty terrifying. I mean, REALLY terrifying. I honestly didn’t see how bad it was until the brain fog lifted more consistently, and I hadn’t realized how bad and constant the brain fog was until it started to go away.

Brain fog ebbing gives me more spoons for cognitive work. This means, yes, I’m able to do a higher level of work, more creative work, but it also means that I am able to do things like remember I made a promise to someone and followup on it, able to plan my time to reserve energy for specific things, better able to predict my crashes, and better able to notice my body’s warning signs of needing rest. It also means that I am more prone to thinking I can do all the things I used to do, and find myself locked in hyperfocus working too many hours trying to just finish that one last thing. I’m finding that I need to take a fairly significant break midday and step away from work to do something completely different. Unfortunately for my body (and fortunately for almost everything else), part of doing a job is being part of a community of people engaged in related and interwoven activities toward common goals, and when my body announces it would like a break, thank you very much, this doesn’t always align with everyone else’s schedules. When I push through to accommodate large group meetings or meetings that had been really challenging to get scheduled, I find those days I’m back to spending the evening flat and foggy.

The other important thing for me that is connected to a reduction in brain fog is my ability to read is coming back. I can now read research articles and make sense of them. I can read challenging books on serious topics if I break them up into small bits and stretch it out. I’m still reading mostly light fluffy fiction, but I’m able to read more at a time, read longer, read faster, and even if I’m not yet able to read my usual materials on a regular basis, I count it a win that I’m able to read them at all. I’m counting on my mental muscles stretching just like my energy envelope is growing.

The toughest part of improved and more consistent cognitive function is that I realize better just how bad I have been, and how far I have to go. This is scary and sad. I didn’t feel as scared about it before, I think because I simply lacked the energy to project into the future likely impacts or realistic outcomes if my symptoms persisted. I’ve been kind of Pollyanna-ish about all of this. Not a bad approach, and it’s paying off, but I’m having more days where it’s all rather overwhelming.

There are some other things that have improved as well! I’m not as cold all the time (although my temp was 95.8 earlier today). I still cover up with blankets most days, but not ALL day. I wear layers of winter hats, but less often. People who haven’t seen my hair in four or five months are surprised by my haircut, which happened in December, but I’ve been wearing layers of hats all the time for months. My hands still tremble, but it’s minor and less frequent, and I can work through it, often without really noticing (my son is the one who notices). My ability to taste and smell is much better. Instead of about 5% with erratic blips of partial or full flavor, I’m at more about 70%. I can taste and smell pretty much everything at a less sensitive level than I used to. I can actually sing more often than not, and my voice doesn’t often make the machine gun noises it used to always do when I tried. My vocal range had decreased from 3.5 octaves to 0.5 octaves, and is now up to about 1.5 octaves. This is enough to sing in choir again. Many people with Long COVID have had hair fall out by the handfuls, while I just had a lot of hair turn gray or white. I already had a gray streak in front, which turned bone white at the peak of the illness, and a lot of the hair around it turned gray, hair on the sides and back of my head as well. Well, now, some of my hair color is coming back, and the patches of gray are shrinking and the white is going back to gray. I don’t expect to have it all come back, but this is heartening and tells me I am genuinely getting better.

(un)Diagnosed: Day 398, Week 57, Month 13: Making Progress

This month actually still looks a lot like last month, still very much good days and bad days, although some significant things have happened. The good days are better, and the bad days aren’t as bad as they once were. I have a new specialist, a neurologist. They say, oh, yeah, I DEFINITELY have dysautonomia! They added POTS. This gives me what has been appearing as an unholy trinity of diagnoses that have been cropping up among many of my friends and social media acquaintances: joint hypermobility (like EDS); mast cell issues (autoimmune and MCAS especially); and POTS (or other forms of dysautonomia). Yay, I joined the club? Or not so yay.

The neurologist had a list of things people can try to feel better, and which patients sometimes discover on their own. I was doing most of them already (examples: salt loading, increased fluids, sleeping with a raised head of the bed, taking breaks where I elevate my legs, neuro rehab, compression stockings, and more). It seemed to surprise them that I was already doing so many. Since I wasn’t doing everything, we’re adding the rest and doubling down on interventions which are low cost, low risk, and offer a big bang for the buck. Compression stockings are shifting from knee high to thigh high. Adding an abdominal binder, which you can think of as a medicalized corset. Even more salt (a LOT of salt!). And fluids. Specifically electrolytes. I’m up from a half gallon a day to a gallon, at least half of which is oral rehydration fluids (like Pedialyte, although I’m using TriOral). It’s amazing. It has really cleared out a lot of the brain fog. I have a fair amount of experience powering through brain fog because of having celiac, and I’m also pretty good at ‘faking’ feeling okay when I’m not. The idea that the tunnel vision feeling I have been living with will just vanish if I drink a pint of electrolytes? MAGICAL!

An example good day: With the brain fog cleared out, I could successfully do many of the things I’ve been struggling with. I could also better manage actually taking breaks appropriately instead of slipping into brain fog and hyper focus. I’m also getting better at recognizing when the brain fog is starting, and taking action to head it off, like electrolytes and raising my legs. Last Saturday was the best day I’ve had since before the pandemic started. I have for many years tried to follow the National Poetry Writing Month practice of writing a poem a day during April. Last year didn’t go so well, but trying again this year. Here’s an excerpt from the happy sonnet I wrote for last Saturday in my poetry blog.

“A day almost like beforetime, when I
could walk if I wanted and still breathe, twirl
as if music is lilting or play twister
and not fall. The luxury of an airway
uncluttered, muscles not withered, and hey…”

PF Anderson, Singing, #NaPoWriMo 2021 Day 10.

There are still bad days, too, and they seem to be triggered by a combination of things. We know that maintaining personal hygiene still seems to trigger crashes. Doing too much does also. Not taking breaks. Etc. Last week the inaugural COSMO conference happened, and I was on the planning team, so, yeah, I did too much and didn’t rest enough. I also had lab tests for the neurologist and to test whether the vaccines actually triggered antibody production, since having COVID didn’t. Crashes for me come in waves — there are immediate crashes during activity, delayed crashes at 18-24 hours after activity, and even more delayed crashes at 3 days out. I read about someone who has crashes at 5 days after their triggering activity, and that must be really hard to manage. So the trip to the blood draw and the extra COSMO activity were 2 and 3 days before the now weekly shampoo, and these three combined to ill effect. The good news is that boosting electrolytes helped reduce the impacts of that crash. Here’s my Facebook post from Sunday describing how that day worked.

"I didn't like seeing my friends. It wore me out. Everything was hard for me: having a conversation, focusing, not being tired. I had to prep before they came over, sleep and store up my strength." Image shows a grayscale pencil sketch of two young women talking while a third stands smiling in the doorway behind them.

Today I read PARENTHESIS by Élodie Durand. It was very strange to read. I don’t have brain cancer, but her description of her life feels so much like mine in some ways.

Yesterday was a good day. Probably the best day I’d had since before COVID19. Today was not a good day. The worst crash I’ve had in a couple months.

I felt fine when I awoke. Started a load of laundry. Took my meds and the first quart of electrolytes. By 9:30am the chills had started, but I hadn’t eaten yet, so kiddo helped me make a bowl of cereal, and I made myself eat it before I lay down.

By 10:30am I was back in bed, covered with the weighted blanket and a few more. By 11am I’d passed out. When I woke at noon I couldn’t talk or lift my arms. I tried, but I didn’t make sense. I couldn’t remember the words I needed. I couldn’t construct a sentence. I couldn’t ask for the help I needed. I would say the same word over and over, frustrated that kiddo couldn’t figure out what I needed. Later, when I could talk again, we agreed that the next time this happens he should record it to we can show the doctors.

A few weeks ago I started to see a new specialist for the post-COVID dysautonomia, a neurologist who has other #LongCovid patients and who specializes in autonomic disorders. He has added POTS to my diagnostic collection. He was surprised & pleased how many of the things they recommend I was already doing. So he bumped things up.

Some of the things he added: 8 grams of salt a day (that’s a lot!). A gallon of fluids, half electrolytes, half water. In a few weeks I have an appointment to fit an abdominal binder, which is kind of a medical corset, and thigh high compression stockings. He says these will all help with suspected pooling of blood in the gut and legs. He said the reason for the brain fog is that blood is actually not getting to the brain.

I’ve been finding the electrolytes are having an amazing impact. Drink a quart, and the weakness just fades, the brain snaps into focus, I feel more like myself. So today, when everything went away, I tried to get kiddo to bring me electrolytes.

Usually I just bottoms-up and guzzle a whole quart. Today I couldn’t lift the bottle. He had to get a small cup, pour some into it, help me with it. After the first cup, I could handle the second cup, with both hands. After the second cup, I could pour my own, and could finish the bottle.

So, that was noon. It was a couple hours before I could sit up without help, or stand up to go to the bathroom (because QUARTS of fluids!). I couldn’t read a book because I couldn’t hold it open.

I finished two quarts (yes, that’s an extra, but I seemed to need it today). And, voilà, I’m back! I could make a simple lunch. I can’t stand long, but I can get up and do short activities. Yesterday I did three loads of laundry, a load of dishes, and walked around the block and felt okay. Today, nah. Let’s not.

But I did get to where I could hold a book again. We use TV dinner trays to hold the pedialyte bottle, a cup, the book. I can prop the book up so it isn’t as tiring to hold. It was an amazing book. A bit gutting to have so much of it resonate so tightly.

And tomorrow, I’ll feel fine. How much you want to wager? Well, fine-ish. Enough to sit at a computer and people will think I look normal.

(un)Diagnosed: Day 365 (Twelve Months) Still Recovering, Not Recovered

Screenshot from RingFit shows a female avatar jogging down a scenic dirt path. On either side are grasses, flowers, and trees. Ahead are boulders and pillars.

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.

Neuro Rehab

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.

(un)Diagnosed: Day 215 (Seven Months) COVID Long Hauling Along

A pixelated portrait of Patricia laying flat on the couch in a nest of blankets and pillows. She wears a sweater and a t-shirt stating "I'm broken/I'm OK." The image is all shades of blue, and comprised of dots of varying sizes..
“I’m perfect the way I am, and a little broken, too.” Dan Nichols.

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
Palpitations
Felt outside of the world
Cold, lots of blankets (4+dog)
Debilitating fatigue
Couldn’t hold phone or open eyes, but wasn’t sleepy
Arms weak
Slurred speech
Cold feet. Hands were warm
Tinnitus ringing in both ears
Later it felt like the tinnitus was in my brain instead of my ears.
Brain fog
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 .
More naps.
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.

Undiagnosed (No Longer): Day 185 (Six MONTHS)

Screenshot: Patient Portal

Today is officially six full months since I first got COVID. I haven’t posted here since day 101 of this journey. I am really sorry that my blog has turned into nothing but #LongCovid updates, but I just am doing everything I can to get through my projects and meetings with work, and blogging is extra. All the tech goodies will come back, some day. I’m still collecting them!

My doctors all insist that I had COVID and that we just missed the window of opportunity for testing. I get messages from my primary care doctor with the subject line: “COVID Long Hauler.” That’s actually pretty validating. This has been a long, loooong roller coaster ride, getting better, crashing, starting over. Currently, the best guess we have is viral post-COVID dysautonomia, and this is functioning as diagnosis for the purpose of requesting therapy. My doc did some research, talked with other docs, and had some good ideas. Insurance won’t cover them all, so I’m starting with what insurance will cover: physical therapy.

The past week has been better than I’ve been in a long time. I had 3-4 days where I was able to work, make food, and actually do a tiny bit of household chores. Then, of course, there were 3-4 days where I had a crash, but was able to crash and get back up, even if I wasn’t able to do everything I wanted to get done. But just two weeks ago … well, this is my Facebook post from then.


AUGUST 30, 2020 (Day 170)

DS: Are you SURE you don’t have COVID anymore?
Me: I test negative.
DS: I know. But are you SURE you don’t have it right now? Are you SURE sure?

I’m guessing that some of my friends here probably have dysautonomia, but I’m new to this. It’s part of whatever COVID did to my body, and evidently most of what I’ve been thinking of as relapses has actually been this new damage to my body asserting itself, in unpredictable ways, at unpredictable times. Sometimes my heart goes too slow, sometimes too fast. Sometimes I can’t catch my breath, but my oxygenation levels are fine. Sometimes my oxygenation levels are not so great, but I feel fine. Sometimes I feel like I have a fever, sometimes I chill. My balance is rotten. Sometimes I have a sense of pressure in my head, usually (but not always) with brain fog or headache. When I tried going to the grocery store on the bus with my son a couple weeks back, the pressure in my head lasted for a week and a half. Don’t worry, they’ve done tests, everything seems normal. They don’t know what’s causing it, but that sense of pressure in your head is reported by a lot of the COVID long haulers. So, normal for us, I guess. Yay?

This morning, my hands were shaking so bad I couldn’t type. When it kept going on, I decided to walk the dog with my son. I made it about an eighth of a block before my lack of balance made it clear that walking was going to be a challenge today. I don’t know how I’ll ever get better if I can’t walk, tho, so I held onto my son’s arm, and kept going. When we got home, my son ordered me to the couch, and I laid down.

After about a half hour I started chilling, and this was chilling like when the COVID was bad. I knew the temp outside was in the 70s, and I was on the couch by an open window. It wasn’t that cold. I finally asked my son to help me cover up. He came over and checked how I felt, temperature-wise. He says my hands were like ice. They were so cold it scared him. That’s why he was asking if I was sick again.

He covered me up with two blankets. Folded them double. At my request, added another. At my further request, he added two more over my chest. I ended up with six layers over my legs, and eight over my chest and arms. After an hour, I felt warm-ish to me, normal to him. He felt blazing hot to me, which is … the usual 98.6, you know?

I had a lot of plans for things I was going to get done this weekend.