Long COVID in pictures
The first two years of my four-year journey
Welcome to The Tonic, a light-hearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (known here as The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
Take action!
If you identify as queer or are a queer ally, please check out
’s note on Substack and please restack it and tag Substack and all your buds. There are loads of amazing Substack newsletters (Robin’s included, as well as , , and so many others) that deserve to be found by anyone interested in building community and/or deepening their own learning.Wish list shout out!
Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits). A big Tonic THANK YOU this week goes to Diane R.
If anyone else is interested in showing support, see below for the skinny. There’s something for every budget and any help is appreciated. (Note: please be sure to include a note with your gift(s) so I can include you in my shout out!)
The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. Anyone who does gets a 📢 in an upcoming post. Thank you!
An illness in pictures
Well, good people, my four-year COVIDversary is this coming week (March 25, 2020 was when I experienced my first symptom, shortness of breath). I have long been thinking about doing a post that shows a visual representation of what life is like with Long COVID and ME/CFS and what better time to do it than now.
People often refer to these as invisible illnesses, and that can definitely ring true, especially on the days when we have the spoons to put any effort into our appearance (and yet still feel mostly like crud).
The truth is though that, at least with my Long COVID, there has been plenty to see here - especially within the first two years or so, which is what this post will cover. If you’ve been with The Tonic for a while, you know that I never hit you with only doomsday content, so there will be some humor sprinkled in as usual.
As I keep progressing through my recovery, I may do a part two called A Recovery in Pictures. I also plan to do a post soon on the recovery tools and strategies that have been most helpful to me. I’d love to hear if folks would be into this. Please drop a comment below if so.
ME/CFS in Pictures
Each time someone subscribes to The Tonic, I click through to the site or app to try to learn a bit more about them. I’ve always been naturally curious about other people and what drives them in life (I am a social worker, after all), so I like to see if they have their own Substack and what it’s about, or if they don’t, I like to scan the list of their Reads to see what other types of newsletters they subscribe to. I can usually tell who the fellow spoonies are by doing that.
This little journey I take had me connecting last week with
, a new subscriber to The Tonic whose own newsletter caught my eye and in turn made me a subscriber of his. We got to chatting in the Substack DMs (so far, this new feature has resulted in some great connections for me - I’m a fan). That’s where I learned more about his own project to capture what life is like with ME/CFS through his photography. The difference here is that Andrew is a skilled photographer, whereas I am just an iPhone amateur, and so his work counts as art.(No one needs to soothe me over this statement. It’s just the truth: I may be starting to consider myself a writer, but I’m certainly no visual artist).
As someone with the dual diagnosis of LC and ME/CFS, his photos really resonated with me for their honesty and creative composition. Check out his post below and subscribe to show Andrew your support. Then click the button below to see more of his pictures in this series.
Now let’s get going with this week’s content.
The “Before Times”
At play
I started playing volleyball when I was 12. I played competitively through middle school, high school, college, and after college. My last game was a few weeks before lockdown in 2020, only I didn’t know it would be my last and so I can’t remember it.
I’ve been hiking since Baldy and I got together in 2002. Most of our vacations centered around hiking during the day, then hitting the pool/bar/restaurant at night. We’d been to some amazing places in the U.S.: the Redwoods, the Grand Canyon, the Smokies, Sedona, the Painted Desert, Acadia, Glacier, Canyonlands, Arches, Capitol Reef, Yosemite, Shenandoah, Bryce Canyon, Zion. We had an AZ/NM hiking trip planned for May 2020, right when COVID was ravaging the Native American communities in New Mexico where we planned to visit.
At work
I am a social worker by training and for over 20 years, I was an executive at non-profit organizations - mostly at places working to help victims of domestic violence, human trafficking, sexual assault, and child abuse.
The very beginning of the ick
My first symptom was on 3/25/20. I had just wrapped up my day after two straight weeks of 14–16-hour days working with my teams to turn our crisis organization into one that could function remotely. It was my turn to ‘tap out’ at work, so I logged off a little early, relieved to be taking the next day off. I got in the shower shortly after 4pm and noticed I was having a hard time getting a full breath. “Huh, that’s weird,” I thought, not once thinking I had COVID-19.
Baldy was also off the next day and we planned to go hiking. Part way up the trail, I had to turn us around to go back. My shortness of breath persisted. “I must be getting a cold or something.” Later that night, I checked my work email and learned that on 3/12, I had been exposed to a colleague who tested positive. That’s when I first started thinking it might be COVID. I somehow managed to finagle an appointment for a PCR test for the very next morning at a hospital near my job; it was one of the first days that testing was happening. My boss went too, since I had been around her the week before. We both tested negative, though we wouldn’t know it for almost two weeks (back then, results took forever to come back). She did not have COVID then; my primary care doc told me it sounded like I had it and to assume I did and quarantine at home away from Baldy, which I did. To this day, he’s a NOVID.
Still sick into April 2020
I got a bit better after about eight days of acute illness and I attempted to do some light yoga. I crashed again the next day and stayed sick well into April. This screenshot of texts I sent to my sister about a month after my first symptom says it all. My longtime primary care doctor gaslit me big time. I had asked her for a note so that I could take the two weeks of federal COVID-19 sick leave. She eventually acquiesced and I took the last week of April and first week of May off from work to recuperate.
I decided not to return to this doctor after this experience. Later in 2020, I wrote to her in the portal to tell her why I had left. She said she was sorry to hear that I was still sick and that she always had my best interests at heart. She also said she referred me to a neurologist in April; this was untrue. What she did do (in April 2020) was read me my own test results from a neurologist appointment in October 2018 as proof (?) that there was nothing wrong with me (make it make sense!). I ended by telling her it was clear she only wanted to be my doctor when I was healthy, but once I really needed her help, she failed me. I asked her not to treat any of her future patients the way she had treated me.
By the middle of May, after my two-week leave, I was feeling much better. In fact, I would have sworn I was 100% better, and I returned to all the things: working, exercising/hiking, drinking.
The big crash
By the middle of June, I was starting to feel crappy again. My fatigue was returning, my brain was foggy, and I was having trouble with my gait, like I had to think about every step I took (especially on stairs) instead of it just being automatic. My birthday came and I was determined to enjoy it despite starting to feel bad. I ran a bunch of errands, I hiked, I drank. Two days later, BOOM. That’s when my long COVID really kicked into gear and wouldn’t let up.
One day in mid/late June, I noticed these purple splotches under my fingernails that hadn’t been there before. My sister, a nurse, told me to go to urgent care. Of course, my pulse oximeter reading and other vitals were normal, and they had no idea why this was happening.
A week later, I was at the ER for severe shortness of breath. Chest x-ray and bloodwork all came back normal. They sent me home. A few days later, completely out of the blue, my hands (and only my hands) started peeling. They felt coarse like sandpaper. You can zoom in on the picture to see how it really looked. It was June in New York, so dry hands were not normal given the humidity. The next day, my hands were completely back to normal. This happened a few more times over the next two years. It was like I was a snake who was molting. Very odd.
The pandemic “puppy”
For some months, Baldy and I had discussed helping to clear the shelters by adopting another cat. I was sick as a dog (ha!) but I had the first week of July off from work for a staycation. We went down to the SPCA where a cat named Big Purr (goofy, right?) was the only cat allowed to roam free in the cat room. He pulled out ALL the stops with us, following us throughout the room, jumping up on things to get us to notice him, purring, rubbing against our arms. He most definitely picked us that day.
We took him home and named him Fritz(y boy). He loved me from the very start, but it took him a while to win over Baldy, mostly because he was only about a year and a half old and still very active/kittenish. He zoomed all around the house crashing into things; he routinely wanted to fuck with our two older kitties. Everyone in the house resented him for many months except for me. Things were so stressful in the beginning that I’m ashamed to admit we tried to rehome him a few times. The stress of him pissing everyone off was only making my new and mysterious illness worse. Alas, he eventually settled down (as I predicted) and now we can’t imagine life without him.
Never stop laughing
As sick as I got, I never lost my sense of humor. While I took one leave from work and then eventually another, and while my world closed in on me and I became increasingly isolated from friends and family, being able to text people and laugh in many ways saved me from the pits of despair.
Here’s a text exchange I had with my sister that cracks me up to this day. My responses are on the right:
This meme really sums it up 😂:
Back to the trauma
The first year brought some rough times. A fellow long hauler friend (hi Shauna!) and I have discussed how during the sickest months and years of long COVID - at least for us OG long haulers from the first wave in early 2020 - you could actually see the illness in the way our eyes looked. My college bestie Rachel had said this to me too; there was something different about my eyes. It was more than just a tired look. There was a sunken quality that took two years to go away.
In late 2020, when the world kept wondering what it would take to open everything back up again (hint: testing, isolation, distancing, and masking), my sibkid Valley made the mask below as a form of activism: “hey, chumps: let’s do what we have to do collectively so I can see my aunt again” (and, by extension, so we can all see the vulnerable loved ones we may have who deserve our care and protection). Not only did I feel immensely loved by their act, but I was beyond proud (and often am) of the way they stand for what’s right in the world 🧡.
A few other markers of my poor health: my pulse oximeter often read well below 95 (common wisdom is to head to the ER if this happens, but almost every long hauler I know has multiple stories of futile visits to the ER in this exact situation where tests turned up nothing and they were sent home exhausted and with no answers). Here’s a shot of my FitBit heart rate measurement after eating lunch (in a seated position); my POTS was bad enough for quite a while to be triggered by the simple combination of being upright and having just eaten. And 150 is nothing; many long haulers I know have their heart rates go up to 180+ just going from seated to standing.
The last pic here is me at the ER in early January 2021. This was a day after starting cromolyn sodium, a medication that has been useful in helping many long haulers with their mast cell activation syndrome (MCAS), but for me caused insane nausea and vomiting. MCAS makes its sufferers extremely sensitive to foods, medications, supplements, and chemicals that they never were before developing the illness, so it’s perhaps ironic that a medication meant to address the problem was the thing I was sensitive to.
My kitties have been a source of comfort and joy the entire time I’ve been ill and recovering. When I first got sick, it was just Speck and Zira. Then it was them plus Fritzy. Then two years later in late 2022, we got Birdie. Then a month after that, we sadly lost our baby Speck. They all have such different personality quirks and getting to know and love them as individuals has been one of life’s greatest gifts.
I framed this piece of art below by a super talented artist named Brit to serve as a reminder to pace my activity or else spend more time being sick. Brit makes art that is both meaningful and queer/disabled friendly. Check them out.
Partial recovery, steep crash
In April 2021, I began working with IncellDx (the Chronic COVID Treatment Center) and Dr. Bruce Patterson to test my cytokines and to start their treatment cocktail (which I affectionately named “the Roctail”, a combination of maraviroc, ivermectin, and a statin). Over the next 5-6 months, I made significant strides. My fatigue was lifting, my neuropathy was resolving, and I was able to slowly build up to 7500 steps per day over a few months. I was over the moon.
Feeling optimistic, I organized a small group trip to Sedona in September 2021, where I was able to do hikes of 2-3 miles most days (in the “before times,” I could hike 10-12 miles in a day). I would say I was about 75% recovered by that point. I was still pretty traumatized by the experience of being ill for so long, and I broke down crying a few times on the trip when I was overtired and the noise from the restaurants we ate in at night was just too much for me (noise sensitivity - really, the dysautonomia entirely - hadn’t been resolved by the meds). But all in all, we had a great time and I was feeling so hopeful that I was really on the road to recovery.
About a month later, I had a week at work that was over the top stressful, for a lot of reasons. It all rattled my nervous system pretty badly, which I realized in hindsight was not yet healed, even if many of my other symptoms were improved by the Roctail. The pic on the right is a day in the middle of that stressful week, when we had our fall luncheon at work and I had given a speech. The build-up to the speech made me so shaky; the fact that no one but me was wearing a mask under the open-air tent was a source of stress for me too. After the speech, I went out onto the grass and “feigned” exhaustion (that’s why I’m laughing, and why those around me were too). The truth is, I needed to lay down more than anyone knew.
Two days after this event, feeling more and more exhausted, Baldy and I went on a planned weekend hiking trip to the Berkshires, where I way overdid it (I hiked 14k steps the first day). I wasn’t thinking straight. We should never have gone on that trip to begin with, but then we did and I pushed and pushed. I had to call out sick the entire week following this weekend trip. It was the start of a precipitous crash that I am only emerging from within the last eight months (so, it lasted almost two years). The Roctail completely stopped working after this crash. Dr. Patterson changed my meds, but to no avail. A few months after this, I was forced to cut back down to part-time. A few months after that, I was forced by my worsening condition to head out on full leave, never to return.
Info galore
I spent so much of my illness and recovery (as I do now) consuming information on LC and ME/CFS. Much of this has been longer studies and articles, but some of it has been bite-sized tweets and memes that impart knowledge to those who do not experience these conditions. Here’s a sampling.
The test that turned things around
I took my second full leave of absence from work in late May 2022. In June, I got my third denial for employer-based disability, in spite of a significant pile of letters from doctors (experts in their fields) and test results. My infectious disease doc (a longtime ME/CFS expert) told me she thought the only test left for me was the two-day cardiopulmonary exercise test (CPET). Luckily, one of only a handful of test sites in the U.S. happened to be located in my home state of NY, a 3.5-hour car ride away in Ithaca. The test showed significant functional impairment and led to the overturning of my short-term disability case and eventually to an approved long-term disability claim. I would finally get the opportunity to breathe a bit financially and work on my recovery. You can read all about it in this blog piece I wrote for Health Rising:
Continued “fun”
My nails continue to be purple/brown underneath. Each splotch eventually grows out, but a new one always starts again on another nail, from the base up. A few of my nails always have them. It’s just odd. My functional medicine doctor believes this to be a sign of microclotting, which researchers Resia Pretorius and Douglas Kell have found are nearly universal across the long haulers they’ve studied.
I also get eczema on my arms, and almost exclusively on my right arm. Also weird. It’s thought to be an MCAS response. Cutting back on dairy seems to help a little, but it never really goes away entirely.
Bringing this in for a landing
As I mentioned earlier, this post and its pictures cover about the first 2.5 years of this journey (March 2020-November 2022). I would say that the latest phase of my recovery began in earnest in early summer 2023. I will do a photographic retrospective of recovery at some point, once I have more of it under my belt. For now, here are a few pics of me lately. I’m doing much better than I was in 2022. If I had to put a percentage on it, I’d say I’m probably at about 60% at this point. It’s very slow, and there are hills and valleys, but I feel hopeful about getting much closer to 100%.
Stay hopeful, my friends.
And here’s what you do if life hands you the worst citrus fruit ever (IMO):
Stick around for…
🥳 The After-party 🥳
Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.
👩🏼⚕️ Dr. Eleanor Stein (who recovered from ME/CFS and has devoted her career to helping others with these illnesses) has these great tip of the month videos on her website. This month’s is about post-exertional malaise in long haulers.
🧠 COVID’s toll on the brain: new clues emerge. A leaky blood–brain barrier and inflammation might account for some of the cognitive symptoms of COVID-19.
👩🏾🔬 Four years on: the career costs for scientists battling long COVID. Here’s a quote from this one that caught my eye:
“Getting tenure was so profoundly destructive to my health that it prepared my body for severe long COVID,” one Latina researcher in the humanities tells Nature. “I feel like my academic job demands my death.”
👴🏼 COVID isn’t over for disabled and older adults.
📹
with a moving, must-watch video: were you better off four years ago than you are today?
🐿️ Another recall from Trader Joe’s: this time, nuts.
👛 Very interesting article: what happens to the coins tossed into the Trevi Fountain?
🐶 If not fucking around was a dog. So, so good:
🤦🏽♂️ Buffoon of the week: Rep. David Trone (D-Md.) misspoke and really stepped in it: US Senate candidate apologizes for using racist slur while trying to say ‘bugaboo’
🏆 Winner of the week: Theydies and gentlethems - I submit to you Senator Bernie Sanders again for the win.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. Zira-recovers-from-surgery edition.
Amy, this is SUCH OUTSTANDING COVERAGE and exactly what more of us need to see and read and experience. Thank you for putting the time, energy, heart, and devotion into all of it. It's valuable to so many communities, and I haven't found enough other sources doing this work.
And also thanks for being a friend, for putting my humble substack "interest" request front and center, and for promoting goodness all around. So many good feelings from all of this!
You always amaze me with your tenacity, your wit, and your razor-sharp writing. I learn so much about Long Covid from you -- you're my trusted source of information. (Luckily, I don't have Long Covid, but I have a strong desire to learn about and support those who do. I feel like our country has let so many people down.) Anyway, just here to say how grateful I am that you continue to share your journey. And pizza is great, but what about TACOS???