Wednesday was the 4 year anniversary of when I developed COVID. We in the Long COVID community sometimes call this our COVIDversary. Having never fully recovered, you could say I’ve been sick for 1,463 days now. That’s a lot. That’s also why I don’t post here much anymore. It’s not because I don’t have info to share, it’s because I always used to write posts in the evening after work, and I no longer have the energy to just chug along like an Energizer Bunny with poor boundaries, working non-stop because work is FUN! Something had to give, a LOT of somethings, and one of them was regular posts on this blog.
A little over a year ago I started making diary comics about my Long COVID experiences. I usually make these late at night laying in bed while I’m either trying to settle down to sleep or I’ve woken up and couldn’t get back to sleep. Here’s the one I made for my COVIDversary.
A few links — where my story started, someone else’s story who got sick about the same time as me, Ed Yong on what it feels like to actually listen to folk with Long COVID, and Eric Topol’s post highlighted in the comic. He does a really lovely job of staying on top of the Long COVID research and pulling out the highlights that seem to be most important.
Posting here only became more erratic and less frequent since I caught COVID in March 2020. I’m still tracking all the emerging tech stuff, I just can’t keep up with my job stuff (like research and publishing and supporting patrons), and blog, too. I’ve discovered that I was usually doing my blogging on personal time, and life with Long COVID means if I don’t do a better job of managing work-life boundaries, my body will do it for me.
So, speaking of #LongCOVID, today is 1,271 days, or … almost 182 weeks, or … almost 42 months, or … 3 years, 5 months and 23 days ago. It will be exactly three and a half years ago in one week. A lot of this journey has been captured here in this blog, either under the tag longcovid or in the Undiagnosed series from when it started before there were accessible tests. If you want to see how this all started and track the journey, here’s the first post in the series: Undiagnosed, Days 1-2.
Today, I just wanted to let you all know that there is an article in today’s print New York Times that includes a bit of my story. Usually, when I’ve been interviewed about LC I’ve posted the links on social media (here’s another one), but Twitter has locked me out of my main account and, last time I checked, the only way I can post this information to that account right now is to blog about it.
Since I am here, blogging, I’m going to also include just a little bit of info I felt was really important that didn’t make it into the article.
One of the aspects that most deeply concerns me is how many primary care clinicians are struggling to support their patients with Long COVID, often because they are already so overwhelmed with their normal workload, don’t have time to do a deep dive in the original research, and often are not aware of key resources designed to support them in this way. I particularly recommend clinicians be aware of the AHRQ supported Project ECHO programs from the US government: (1) Long COVID and Fatiguing Illness Recovery Program and (2) The Schmidt Initiative for Long COVID Global ECHO Webinar Series. Both of these two programs (housed at University of New Mexico Health Sciences) have regular webinars with leading researchers, and make the slides, resources, and recordings available to the public. The Project ECHO series covers specific LC subtypes, symptom clusters, treatments, interventions, cutting edge research, best practices, and more. Here’s a related YouTube playlist (#MedEdMonday: Long COVID & Post-Viral Syndrome) hosted by the Bateman Horne Center which includes many of the videos. These are all phenomenal resources. They allow patients to also attend, so register and ask questions. So many folk from our support groups take these resources to their docs, who say, “I’ve never heard of this. Thank you.”
Tips to Avoid Long COVID (a Long COVID Avoidance Infographic)
This is a question I’ve been asked fairly often throughout the pandemic, as awareness of long COVID increased, and as more people caught COVID. The past few months it’s been coming up more and more often. Now that I’m getting this question sometimes several times in a day, as well as getting lots of questions about pacing and brainfog (3 times in the past 24 hours!!), I’ve decided I really need to collect the resources I most recommend in places where they are easy for people to find and share.
This first post in this new series will focus on what we know or suspect about how to avoid having COVID turn into Long COVID. I’ve been waiting a long time for something official about this, but there isn’t a lot. There’s a lot of news articles, a little bit of research looking at the differences between people who develop Long COVID and those who don’t, and an enormous amount of discussion in the many patient support groups. I made a little infographic, and will discuss the high points in the rest of this post. (NOTE: I’m not this kind of artist, so please be kind, and feel free to make your own. I just did this because I hadn’t found anything else that does this.) FYI, I’m making the infographic open access and open source — make suggestions for updates and changes in comments to this blogpost, but if you want to modify the infographic, make a copy of the Google file. Also, remember, I’m a medical librarian and an emerging trends and technologies informationist, I am not a doctor (#IANAD).
— Diana (Berrent) Güthe (legacy blue checked) (@dianaberrent) September 9, 2022
The truth is that there is no way to really avoid getting Long COVID except by not getting COVID-19 in the first place. Everything else is about reducing the risk. So, trust me, you don’t want this, what can you do? Protect yourself, protect others, get vaccinated and mask up. Note also, that being vaccinated helps protect you from dying of COVID-19 or being hospitalized for it, but it doesn’t stop you from getting COVID or from getting Long COVID. It helps to reduce the risk, it is not a guarantee of safety. There is also an assumption in the general public and media that Long COVID mostly happens to “old folk,” but the data seems to show that this happens quite a bit in young folk. Not to mention that if you had COVID once, did not get Long COVID, that doesn’t mean you’re free now. If you catch COVID again (and again), each time you catch it, the risk of developing Long COVID goes up, and up. So, whoever you are, there is nothing that says you can’t get Long COVID.
The Riskiest Time for Triggering Long COVID
To be honest (again), we probably don’t actually know, but what the research articles discuss is usually three months. That may be simply because that’s a time periodresearcherslike to measure. The idea seems to be that some people recover almost completely almost immediately. Other people recover , more slowly, but they do recover. There are different definitions of what counts as Long COVID depending on where you are in the world and who counts as your authority. Here in the USA, the magic line is three months. What this means is that. you can possibly be described as having Long COVID:
if you had COVID and never got better, OR
if you had COVID and recovered mostly but some symptoms lingered on, OR
if you had COVID and recovered, but developed new symptoms and health problems soon afterwards, OR
if you had COVID and recovered, were fine for a couple months, and then BAM, new health problems happened, OR
if you aren’t sure if you had COVID and didn’t have a positive test (because you weren’t tested), but had something maybe like it, and after that find that now you are really sick all the time …
It’s messy. It’s complicated. But the simplest way to explain this has two main parts:
1. the longer it takes you to recover, the less likely you are to recover fully, and
2. right after you first ‘recover’ (as in finish the acute phase of the disease) you’re at the greatest risk of doing more damage to your body.
What to do, Part 1: Radical Rest
This deserves a whole post and a deep dive, so I’m going to keep this simple for now. The single most important thing to do after having COVID is to rest. The phrase is RADICAL REST, because this isn’t as simple as just lay on the couch and watch TV. That’s actually too hard for many people, and will make them more fatigued. Also, different groups use the phrase “radical rest” to mean different things, but for people just starting out it’s probably enough to keep in mind that whatever you think resting is, do more.
Rest extra for the first 3 months after having COVID. Rest lying down, with eyes closed, in a quiet place. Rest whenever you feel tired or fatigued. Rest whenever your symptoms get worse or stronger. If your symptoms went away, and came back that’s especially important to notice, and rest. Rest if you feel weepy or angry or extra emotional. Rest if you have trouble finding the words, remembering things you know. Rest if you feel confused or have brainfog. Rest if you feel anxious, depressed, or stressed. These are all ways your body and mind are telling you to slow down, they need a little extra time to heal. Resting tells your body/mind that you are listening, you are paying attention, it can feel safe and trust you to take good care of yourself while focusing on healing.
REST!!! If you’re lucky, it won’t be forever, just a few months.
What to do, Part 2: Fluids
Please check with your doctor or healthcare provider for this part. Some people have been instructed by their doctors to limit fluid intake or salt intake. There are health risks associated with too much of either of these. You want to be sure that what you are doing isn’t going to make things worse, so check with your clinic.
Now, why push fluids? Why electrolytes, why add salt? A significant portion of people with Long Covid (#pwLC) are being diagnosed with dysautonomia and/or POTS (postural orthostatic tachycardia syndrome). There are pretty standard ways to treat this, and they work really for for many people. The main points are to push fluids, add extra salt (either in your diet or by drinking electrolytes), and wear compression garments. Also, be careful about exercise, and consider staying laying down for your workouts. If you are just starting your Long COVID journal, you hopefully haven’t yet gotten to the point where you would need this diagnosis. The idea here is that if you try some of these strategies a little early, maybe it won’t get as bad? As far as I know, there isn’t anything testing this idea, of trying POTS strategies as prevention, but you hear it a lot in the patient support groups, people share these tips, and many (not all) find them helpful whether or not they have a dysautonomia or POTS diagnosis. Yes, it’s anecdotal, but if it’s low risk for you, then consider whether it’s worth trying.
What to do, Part 3: Pacing
The basic idea behind pacing is to not just rest, but to be able to know when rest is most important. #MEAction created a campaign to try to help people recovering from COVID or who newly have Long COVID to learn how best to do this. Their campaign is called “Stop. Rest. Pace.” That’s the simplest way to explain the idea of pacing. Many people recommend keeping a diary of both your activities and your symptoms, and then looking for patterns. Of course, this isn’t going to make it easy for you, by having your symptoms worsen immediately after you do something that makes you worse. It’s complicated by the worsening often happening with a delay, anywhere from a few hours to a few days. Like with the section on rest, this deserves a deep dive and it’s own blogpost, so for now, here are a few resources just to help you get started.
#MEAction has a Pacing and Management Guide for ME/CFS which is very helpful also for people with Long COVID. The Bateman Horne Center (famous for their research on and treatment of fatiguing illnesses) has a ME/CFS Crash Survival Guide. It’s big and long, and hard to read if you’re in the middle of a crash, but there are a lot of useful tips and tools, including flashcards for when you are too tired to explain what kind of help you need. The idea is not that you would pick up and choose a card and wave it someone for help. The idea is that someone who is around you a lot would know about these, show them to you, and you can signal which is the right kind of help for right now. Yes, things do get that bad, where you can’t talk, can’t say the words you’re thinking, can’t think.
What to do, Part 4 & 5: Do (Eat Healthy) & Don’t (Push)
It would seem like eating healthy is an obvious thing to do when you’re recovering from an illness, but of course, COVID-19 is going to make it complicated. It’s not just “eat healthy.” They’ve been finding that people tend to recover better by including high quality protein in their diet. Some people start to react to certain foods, and find it helps to eat an anti-inflammatory diet. Some people find that having sweets or alcohol or caffeine or (God forbid!) chocolate can trigger a crash or relapse. Many of us are reacting to gluten or dairy. Better to give things that can cause problems a break for a few weeks or months rather than have it be for a long time or forever. “Eating healthy” while recovering from COVID-19 is both eating things that are healthy for your body, and also not eating (or drinking) things that can make your worse.
In the Long COVID support groups, we’ve noticed that many of the people were those who either couldn’t or didn’t know how to take a break, people who have become experts in pushing through tough times and doing whatever it was that needed to be done. This includes Type-A personalities, athletes, people who work in essential worker and manual labor types of jobs, parents of young children, caregivers of any sort, people who work multiple jobs to break even, and so forth. If you are tempted to say, “But I can’t take a break!” or “I can’t afford to rest,” stop. Stop right there, and think for a moment. What’s the worst thing that will happen if you don’t rest now? What’s the worst thing that will happen if you find yourself having to rest almost constantly for the next 900 days or so (like me)? Please, try to find a way to let yourself rest. Don’t push yourself. Don’t push through the warning signs. Pay attention. Listen to your body. If you have trouble taking breaks ask people around you to help you remember. If someone offers you a chance to sit down for a minute, take it. If people want to help, let them. This is not the time to prove how tough you are.
Thank You
I want to say thank you to all the many people in the #MEAction Long COVID-19 Group on Facebook who helped review early versions of the infographic, and suggest updates, clarifications, and corrections. Any remaining errors or confusions are my own responsibility.
It’s been a while since I’ve talked about my Long COVID journey here, but this nice round number was too tempting to pass up. 900 days since I came down with COVID, and still trying to recover. Who knows? You might get another post for day 1000. I’m fairly confident this won’t be gone and resolved by then. What’s the news? I’m a lot better … and … not really. It’s still a roller coaster, still good days and bad days.
Early in my recovery I was very proactive, got a diagnosis of dysautonomia way ahead of the curve because I had the symptoms, but really because I tracked down trends in the UK and my doc listened to me, so we knew what to look for. I also had a lot of really on target help and therapy early on, for the same reasons, and was able to get into neuro–rehab in October 2020 instead of the graded exercise programs that have broken so many people. I was told that to be able to work regularly on-site I’d need to be able to tolerate 5000 steps a day without triggering a crash. By February/March 2021 I was plateaued, and not making further progress. I also kept experiencing crashes, although they were a lot smaller and less often. We decided I needed more rest time to REALLY recover and make it to the next level. And that meant HR got involved, because I needed to access my extended sick leave. [Note: “HR” here is shorthand for the specific unit involved in this oversight, not “human resources.”] By April/May 2021 I was almost there, tolerating 5000 steps a day 3 days a week. This meant I was able to walk around the block I live on twice a day, once in the morning, once in the evening. Each circuit of the block was a half mile.
I was so excited, but HR decided I wasn’t recovering fast enough, and pressured me to switch from the neuro rehab to a program they selected. The case manager promised the other program had more resources, more monitors, more tracking, more everything than what I’d been able to access. I consulted with my team, and reluctantly made the switch, only to discover it had less resources, less tracking, etc. The poor therapist was managing 3 patients within each visit slot, switching from person to person and sending gofer assistants with instructions. Within a month of starting in the new program, I was completely broken, back to ground zero, starting over. The day that triggered all the problems, I didn’t see my therapist until the end of the session, it was all just gofers, who had me do .75 mile on one machine and .5 mile on a second machine within just over half an hour. You can see the crash on this chart. (You can get your own charts like these in a Long COVID toolkit I’m putting together [next LC post], but for now here’s a link to the blanks in Google Drive. Thanks & kudos to Kim Sommer who designed the originals for me [which I’ve modified], and said it was fine to share.)
IMAGE: Step Count for July 2021
Well, that was jolly. NOT. I’d been slowly increasing my activity tolerance levels, and now it was starting over, and I’d basically lost a year. It was clear to me and my new therapist that I’d been doing better with my previous therapist, in an environment with more personalized attention, more knowledge of neurological rehabilitation, and more options for equipment. He felt really bad about what happened. We both recommended switching back, but that was easier said than done. HR wasn’t a fan of the idea, and it took some negotiations and additional testing to sort that out, in a very messy way. To try to do that, I had to return to fulltime work to get out of the HR-managed rehab system, request a new referral, get on the waitlist for appointments, and start the whole process over as if it was new. Then, when I finally was able to get back to my original rehab therapist, insurance declined to cover anymore therapy. Why? Because I’d already “completed” rehab, when I switched programs. That this was a different diagnosis had no impact on their decision, although it should have.
NOW
So, now, who’s managing my rehab? I am, myself. Doing the best I can, but, to be honest, this is not ideal. I’m basically treading water. The rest of last summer, fall, and winter, I was trying to figure out what were the warning signs of having overdone things, because the big crash reset everything I knew about my body’s warning signs. I kept triggering crashes, doing less and less, and finally found a place where I felt relatively stable and okay. March, April, and May 2022 were okay, and making progress. I got to where even the days I crashed my step counts were mostly above 1000 steps. (Remember, my step count before getting COVID was 11,000? Be grateful for what you’ve got.)
IMAGE: Step Count Charts from January 2022 to June 2022.
Eventually I started back to work in the office, first twice a month, then one day a week. This wasn’t because I was ready. I knew I wasn’t anywhere near the 5000/day recommended by my original rehab team, but I also felt like it was really important for my job to get back in the office sometimes. I also thought it was important to stretch myself and try new things, to get out of the house. I have a favorite seated cane now, and take it with me everywhere I go. I try to minimize the number of steps I take when I’m out, and to sit as much as possible. I try to schedule my days in the office on Fridays, so I can spend the weekend flat on my back, as much as possible. Going to the doctor just to get a blood draw a couple weeks ago looked like this.
IMAGE: Long Covid Comics: 1: I need help sometimes
Now, to be fair, I tried to take a business trip a few weeks before. My first time traveling on my own since the pandemic started. This was going to the Graphic Medicine conference in Chicago (which I also need to blog about!). I wouldn’t have been able to handle the trip if the wonderful MK Czerwiec hadn’t made arrangements to lend me a wheelchair and organized volunteers to help push me around. I’m still recovering, although I didn’t crash too badly after that. During the travel, I managed to keep my steps under 4000 steps a day, barely, and that was evidently the threshold to watch for, at that time.
IMAGE: Long Covid Comics: 2: In-Joke (“Fine, as long as I’m sitting”)
The end of July, a month ago, there was a day I crossed 4K, and I don’t seem to have come back out of that. It’s really hard to tell what triggers a crash, and how long the crash lasts, and when you’re back out. A bad day is when I can’t sit up for the whole day. A good day is when I can, and maybe do a load of laundry or make myself dinner. Anything more than that is awesome. And I am TOTALLY working my way up to awesome! Except for the days when I feel like I just can’t do this any more. Except for that. Still, those of us in the Long Covid support groups still have our own in-joke: “I’m fine, as long as …”
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.
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!
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.
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…”
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.
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.
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.
Today is eleven months since I got COVID. I’m still recovering, rebuilding, and it looks like I’ll get there, but it’s going to take a while. A dear friend said, “I’m waiting for you to tell me you’re better!” Well, … I’m better, but I’m still a long, long ways from being well.
So much I want to say, and I had planned to write a blogpost today, but I’m not sure I can. On Sundays, I typically have 1.5-2 hours of useful time, but I used a chunk of that on something that came up work-related. Right now, I’m chilling pretty significantly, but have bundled up, piled blankets on my lap, am wearing a blanket poncho, two hats, two pairs of pants, gloves, and have 20-40 minutes before I have to stop for the day. If I’m lucky.
So why so little time, and why specifically Sundays? Because I wash my hair on Saturday nights. You may remember that there were issues with showering triggering crashes and relapses, and that this took months to figure out. Then it took months to try to find a solution. I spent a lot of money on things like shower-chairs, special kinds of shampoo, special shampooing brushes, adaptors for the sink faucet, and more. The only thing that actually worked and is still being used is the hairbrush, but we are using it for hair drying instead of shampooing, and mostly just because I like the way it feels.
Basically, I have not showered in months. Specifically, since December 5th. That is not something you want to admit in public in our society. Something I’ve learned over the past few months is that there are a LOT of people who don’t bathe or shower regularly, and you don’t know about it because of the stigma we associate with it that keeps them from talking about it, but you don’t know because they are actually fine. It turns out our bodies never evolved to shower or bathe daily, you know? Before COVID I was a daily-shower kind of person, so this is a big adjustment for me. After COVID one of the problems I had that I wasn’t talking about in public was all the skin lesions that just wouldn’t heal. I will spare you the description of how gross it was, and it went on for many months. I stopped showering because of the crashes, but to my surprise, when I stopped showering, the skin lesions healed up! Bonus prize.
Okay, December 5th. What was happening with the crashes from showering was that they were getting worse and worse, not better. The crashes were worse, and the recovery seemed to take longer each time. There’s layers of my body responding. There’s the immediate chilling, and the next day crash, and the three days later crash. The crash in early December? The worst ever. I’d showered Saturday evening. With a shower chair, the space heater turned up as high as possible, special fragrance-free anti-allergic shampoos, eating spicy food right before and drinking hot beverages after, laying down as soon as I was dressed again, etc, etc, all to try to keep me from crashing and chilling.
The next morning I woke struggling to walk, and then crashed BAD. Pulse of 51, oxygen of 93, and I didn’t think of taking my temp. I couldn’t lift my arms or raise my head. I couldn’t cover myself up or uncover myself. I was freezing, chilling, crying and couldn’t stop, even though there was no good reason why. Rather than keep going through this, I wanted to be dead. It just felt like it would be easier, and I felt out of strength for coping. Obviously, I was too weak to do anything, and I wasn’t planning anything, and I knew I’d probably feel okay-ish the next day, but I made the mistake of saying aloud that I would rather be dead than have this keep happening. Instant family crisis! I’ll spare you the details.
It took a few days before I could really function again. I knew I couldn’t do that again for a long time. I just can’t risk it. So we switched to sponge baths and sink shampoos. It’s better, but I still crash after the sink shampoo, so we plan those for a day when I can build up the strength to do it, and have a day to recover. This means I can wash my hair ONCE a week, and that is Saturday evening, and Sunday is when I crash. I spend my weekends mostly pretty flattened. But that’s still way, way better than wishing I was dead.
I’m in neuro rehab now, and on a 50% work reduction for a bit. I’m taking more breaks and resting occasionally during the days. I’m trying to plan my days to allow this. I’m working on work-life balance. I’m doing more exercises, but sometimes when I start something new, it knocks me back down and I have to build back up again. And I can count on shampooing triggering a crash of some sort each week. If today follows the pattern of the last few weeks, I’ll be back up on my feet briefly around 4 this afternoon. Right now, I need to go lay down, but I made it longer than I expected!
![4 panel comic. Panel 1 (P1) shows 9 folk in zoom. P1 text: "We gather in Zoom Rooms" P1 dialog: "How are you today?" P2 text: "from all around the world, some in day and some in night" P2 dialog: "Fine as long as I'm sitting" said by 2 folk at once. P3 text: "and even tho our symptoms are all different" P3 dialog: "JINX!" by 2 folk at once. P4 text: "we make each others' lives a little brighter." P4 dialog: [laughter] from all](https://etechlib.files.wordpress.com/2022/08/lccmxfineaslongasimsitting.jpg)
Emerging Technologies Librarian 
