Long COVID, a.k.a. PASC, a.k.a. "Where did Stormy go in 2023?"
Today, I did the following: trained for 3 hours, took a walk, drove a 50-mile round trip to Raleigh, had a 90-minute client meeting, went to Costco, and sent two work emails. And I feel… fine. 🤯
If you don’t think that sounds too remarkable, then you haven’t spent much time with me over the past year.
2023 was the hardest year of my life, full stop. In this post (which is probably going to end up being more of a book), I’m going to try to record my full experience with PASC, short for Post-Acute Sequelae of COVID-19, colloquially known as Long COVID.
I’ve wanted to write this summary for several reasons.
One — there’s going to come a day when I don’t remember what this feels like. The early months, rough as they were, are already fading. This was one of the most “altering” experiences of my life, and I don’t want to forget it.
Two — I’m writing for those who can’t. There is a hashtag, #MillionsMissing, that’s used to refer to those who have forms of myalgic encephalomyelitis or chronic fatigue syndrome (abbreviated ME/CFS), which includes many with Long COVID. Most of those people are just like me — smart and driven and passionate and with a ton of potential to offer to the world… but they’re lying in their beds at home, sleeping or staring at the wall in a fog, counting their heartbeats, waiting to feel good enough to get up and take a shower. Between the fatigue and the brain fog, most of them don’t have the capacity to write anything like this. I know, because I’ve been there.
Three — reading about my experience may be helpful to others. At time of writing, there are several different “flavors” of Long COVID and many different treatment approaches being tried. We’re learning that there are certain blood markers, including low cortisol, that are present among ~95% of those with the condition, and that mitochondrial dysfunction likely plays a major role in symptoms. A few prescription medications (such as low-dose naltrexone) have proven helpful, and patients are anecdotally reporting improvement from a wide variety of supplements and over-the-counter agents (mostly adaptogens, anti-inflammatory agents, and antioxidants, but another shining star here is good old creatine!). Of all things, even nicotine patches (yes, those nicotine patches) have seemed quite effective for fatigue in some PASC patients. However, most of this experimentation is happening on a n=1 basis; medical science still lags far behind the pandemic’s curve in terms of its understanding of the condition and its ability to help, and therefore, the majority of patients currently do not make a full recovery. My degree of progress puts me in the minority, and until we have mainstream treatments, people will always be curious about what helped me.
Four — to address the sense of lonely defiance I feel. Because… the closer to “recovered” I get, the more skeptics I seem to encounter. A topic of conversation in therapy this year has been that our society has a really hard time believing in ‘invisible’ illnesses; it’s much easier for most people to accept the reported internal experience of someone who is missing a limb or has a visible physical difference. On one hand, this is understandable — I’m reporting ‘invisible’ symptoms, all while “looking healthy” and competing in athletics, “so how sick could I really be?” However, it’s ALSO understandable that a lot of people simply don’t WANT to believe my story. After all, acknowledging my experience means that it could just as easily happen to them. It also means tacitly admitting that they have a public health responsibility to help reduce transmission. And both of those concepts make people really uncomfortable. It’s a lot easier to tell me that either I “must have some other problem” (that started 24 hours after acute COVID, uh-huh), that I’m “just not resting enough” (if only they knew how much I’ve scaled my life down!), or that I’m “too self-aware/hypersensitive” (my self-awareness is one of my greatest strengths; I will never apologize for that). Writing this has helped me remember that my lived experience was, and is, MY truth. It was, and is, real. I will not gaslight myself into believing otherwise, and I sure as hell will not shut up and pretend it never happened just because that’s more convenient for someone else.
And five — well, is there such a thing as “objective catharsis”? I’ve always processed experiences and emotions by writing about them, and this year, I really haven’t been able to do that. (Anybody who follows me on Instagram will have taken note of the paucity of 2023 posts as compared to years prior. 😂) It may surprise some to hear that I didn’t really take note of that loss to the degree that you’d think I might have… because a brain that doesn’t have the bandwidth to write is a brain that doesn’t have the bandwidth to process the subject matter in the first place. Now that my cognition is finally coming back online, I feel more able to TALK about the things I’ve experienced — and I have some catching up to do.
———
I’m certain I caught COVID on 12/20/2022. I did three things that day: trained (alone), had coffee with a friend (unmasked), then spent 90 minutes Christmas shopping in an extremely crowded local store wearing only a surgical mask (while most around me didn’t have one on at all). My money is on one of those last two.
I woke up on 12/22 with just the faintest tickle in my throat. Even working as a full-time healthcare provider, I hadn’t had a cold in YEARS (thanks to masks!). I immediately took a COVID test: negative. I texted my parents, “hey, so I know I’m supposed to drive home today for the holidays; I think I have my first cold in three years; it’s not COVID; do you still want me to come?”
They said yes. I went to the gym and hit my first snatch PR in three years. “Well, CLEARLY I’m fine!”
The drive down to Florida sucked — rainy, cold, crowded, lots of slowdowns. I was feeling at-the-end-of-my-rope stressed (my Garmin watch was off the charts with orange spikes), but I didn’t think it too disproportionate to the situation.
12/23: continued slight throat tickle. Took another COVID test, which was once again negative.
12/24: throat tickle, slight runny nose. No fever, no appetite loss, nothing noteworthy.
12/25: Christmas morning — woke up at 2:00 AM with shaking chills and extreme lightheadedness. “Oh, shit.” At 8:00, sat on the hallway floor (because I didn’t feel well enough to stand up) and swabbed my nose… while my dad ran the test for me, because I already knew, and didn’t want to see it. 😭
My family are troopers. Everyone masked up immediately, and miraculously, nobody else got sick. I took one dose of Tylenol; my fever vanished within 18 hours and didn’t come back. Apart from extreme nasal congestion, I felt pretty normal by the next day — no cough, no more sore throat, decent appetite — and was ultimately able to drive myself home to North Carolina on 12/27 as planned.
On 12/28, I felt completely fine, fully energized and stir-crazy. I have a video of me squatting 200 lbs in my tiny living room on my home squat rack, while still testing strongly positive. 🤦♀️😂
By day 9, my test was negative and I was back in the gym. “Phew, glad that’s over. Thanks, vaccines; that really wasn’t bad at all!”
And on day 10… things got weird.
———
This is the part where I have to admit that I was embarrassingly slow on the uptake. Long COVID takes many forms — there are something like eight or nine different symptom profiles with a lot of overlap — but it is almost always associated with some degree of malfunction of the autonomic nervous system (dysautonomia). This can manifest in a number of ways (sudden heart rate changes are common), but mine was blood pressure instability — specifically, BP drops with positional changes. As a healthcare provider and someone who is VERY body-aware, you’d think I would have noticed this immediately. However, it’s clear in hindsight that that same body awareness is exactly what allowed me to seamlessly compensate for symptoms such that I didn’t fully “feel” how sick I was. For example, if I started to get an inkling of lightheadedness, I would unconsciously crouch down, or lie on the floor, or change my position in such a way that the feeing went away. I didn’t even realize I was doing this until after diagnosis, when the neurologist called my attention to it.
It’s currently estimated that 67 million people around the world have Long COVID, including 1 in every 13 Americans, and that many don’t realize they have it. I can fully understand how this could be true. I live alone, and (in hindsight) it was frighteningly easy for me to ignore what my body was doing, because there was nobody around to think I was weird if I (say) pulled a dish out of the dishwasher and then suddenly laid down in the middle of the kitchen. I feel stupid even writing this down now, a year later — like, how did you not NOTICE? 🤦♀️ — but it just didn’t feel that weird to me at the time. I was calling it “fatigue” because that was the only vocabulary I had for post-COVID feelings. An observer would have seen it faster than I did.
I can see in hindsight that I had been dealing with some brain fog as well; however, our perception of cognitive differences is limited when we’re on the inside. The most obvious thing I noticed in the moment was the frequency of hitting my head — specifically, opening a cabinet door, promptly forgetting that I had opened it, and smacking my head on it. This was definitely happening with embarrassing regularity — like, every single day, sometimes more than once a day — but again, that small thing alone just didn’t seem that weird, especially since there was no one around to witness it.
What finally led me to reach out for help was a day in mid-January, when I was on my way to the gym. I put on my sweatshirt to leave the house… and then proceeded to spend three full minutes wandering around LOOKING for my sweatshirt. “Now where IS that thing, I just had it!”
I felt pretty dumb when I glanced down at my body and made the connection. But “everybody does that kind of thing once in a while, right?”
Proceeded to the gym. Was about 45 minutes into the workout, loading my barbell for a clean. Stepped up to the bar… started to reach for it… and realized… that I couldn’t remember how to set up.
In other words, the automatic ritual of bend over, place hands in hookgrip, breathe and brace, set my hips, and lift — something I’ve done thousands of times — just… wasn’t there.
“I know I know how to pick this bar up. But… I can’t remember HOW.”
30 seconds later it was all back again, as though it had never left. But now I was unnerved.
Right then, I grabbed my phone and texted my friend Tara. Tara has a badass work history, full of search and rescue missions, jumping out of helicopters, training K9 units, and so forth — and along the way, she’s picked up eight concussions plus a TBI. (She lovingly refers to her brain as “cooked squash”. 😂) After 30 years of significant symptoms and frustrating fits and starts with the medical system, she had finally landed on a functional neurologist who was helping her to make some actual progress for the first time in decades. I knew this person worked with athletes as well, and I had actually asked about being seen there myself a month or two prior, but couldn’t justify the cost “just for fun”.
Well, this was officially Not Fun anymore.
Tara answered immediately, and told me YES, post-COVID symptoms were right in Dr. Gabella’s wheelhouse, and to go online and make an appointment right then. She was very encouraging, “You’re lucky; you’re getting in RIGHT after you were sick; she’s going to be able to help you so much.”
I got an appointment for 1/25 — exactly one month after my positive test. And for whatever reason, I had only one or two more episodes of forgetfulness in the interim — such that I probably wouldn’t have made the appointment if I had waited. (Per usual, you take action, and the problem “goes away”.)
One odd thing that did happen, though, was that I spent two hours at a cat rescue (preparing to become a foster), and although all I was doing was standing around and chatting, I found the interaction to be ridiculously draining after the fact. While I was there, I didn’t really notice that I was bouncing on the balls of my feet and intermittently crouching down in the middle of the room, but I did notice that I fell asleep for three hours upon arriving home. At the time, I assumed the experience had simply been more cognitively taxing than I had realized.
———
1/25 arrived — along with the most THOROUGH neurological evaluation I have ever had in my entire life (and I have a medical education!). It took two full hours. Dr. G checked EVERY corner of my brain in great detail — coordination, balance, cognition, reflexes, eye tracking, etc. I was intrigued by the process and was, frankly, enjoying myself; it felt like being back in Physical Diagnosis class in PA school. I knew she was picking up abnormalities here and there (within the first five minutes, she had identified a tremor in my left hand; later, I had to wear blackout goggles for 20+ minutes while moving my eyes according to instruction, whereupon I was asked a bunch of times in concerned tones, “how does that feel to you?” to which I consistently responded, “um, fine?” 🤷♀️); however, none of the red flags were particularly noticeable to me as the subject.
Then it came time for the tilt table, to check the autonomic nervous system (seated in the brainstem). A tilt-table test is a diagnostic evaluation where you lie flat on an exam table that’s gradually cranked up in increments, about 10-15 degrees at a time, until you’re standing at a 90-degree angle, and then (hypothetically 🥴) lowered back down the same way you came up. Blood pressure and heart rate are checked at each level of the table; these measurements SHOULD change somewhat as the table moves, in order to keep your blood pressure stable, but they should change within certain parameters (i.e. your heart rate shouldn’t jump by 50 beats just because the table moves 10 degrees).
Stupid me, I had breezed through the first 90 minutes of testing and was feeling confident. I said out loud, “I’ll be really surprised if this bothers me.”
(I do remember, though, that Dr. Gabella did not reply when I said that. 😂)
Long story short, I was fine at the lower levels of the table, started feeling funny around 75 degrees, and fully passed out at 90 degrees. I had been narrating my experience, and the last thing I remember saying is, “and now my vision is starting to go black… and now my ears are closing up.”
Next thing I knew, I was waking up on the floor with Dr. G touching my face, asking “are you with me?”
I automatically said “yeah.” Then I caught myself, confused. “No. No, I’m actually not… with you. What happened?”
Sigh.
Long story short, I had a FEW things going on. The most dramatic was dysautonomia — dysregulation of my blood pressure — and for obvious reasons, that needed to be the first thing we addressed in treatment. This was why the cat rescue had been so draining for me — it wasn’t (necessarily) the social interaction; it was the prolonged standing. Unbeknownst to me, my brain had been working incredibly hard to regulate my blood pressure for two full hours of standing up; the bouncing and crouching had been my ways of unconsciously relieving the beginnings of presyncope.
I also had some significant disruptions to my eye tracking (nystagmus), as well as the aforementioned left-sided hand tremor, both of which indicated a dominance of my left cerebellum and corresponding inhibition of the right side. (A particularly observant CrossFit coach had actually noted a DECADE prior that my eyes and head tended to cut to the left during maximal efforts, and I’d seen the same thing on my own workout videos; I just hadn’t realized the significance.)
Cognition, thankfully, was not noticeably impacted according to the testing. She told me right from the first visit that “you have a really good brain.” The phrasing made me giggle, but what she meant was that, from her point of view, I was starting from a high baseline, with an overall system that was quite “plastic” and adaptable, with a lot of flexibility to compensate for problems by using other brain areas. Those other areas aren’t necessarily the most EFFICIENT ways of accomplishing the tasks (hence the presence of symptoms!), but they get the job done.
She also explained that my proprioception — which I had always assumed to be one of my weakest systems, given my historic difficulty acquiring gymnastics skills — was actually disproportionately strong. “That’s why you’ve been able to continue to exercise even with dysautonomia. Most people can’t.” She explained that we receive neurological input via three systems that help us sense where we are in space: visual, vestibular (balance), and proprioceptive. One system can be knocked out (visual, in my case) without too much noticeable impact, as long as the other two are sufficiently strong. Turns out, the neurological definition of proprioception isn’t just ‘knowing’ where we are in space; it’s using TOUCH to discern where we are in space. Dr. G noted that I performed significantly better on certain tasks when standing up versus when sitting down, because my brain was receiving additional spatial input thanks to being on my feet. This is common in athletes, but is the opposite of what’s seen in most people.
This was the first (but certainly not the last) time that I thanked my baseline athleticism for protecting me. Had I not had such a strongly developed proprioceptive ability from a decade of high-level fitness, I likely would have been knocked out of athletics entirely, at least for a while.
———
Dr. G was careful to explain that COVID didn’t “create” the issues I was experiencing; it just ripped the Band-Aid off the compensations that my brain had silently been using to overcome them. Everyone’s brain is a little different, and everyone has their own set of neurological compensations — like birthmarks or scars, occurring as a result of the experiences we have throughout our life. In my case, a significant right foot issue as a preteen that led to years of altered gait probably had something to do with the left cerebellar dominance; as far as the blood pressure, I had always had borderline low BP (which is common in those who are hypermobile) and routinely saw black spots if I stood up too quickly; it just hadn’t ever been pathologic before.
This all made a lot of sense to me. I had been describing “fatigue” and “exercise intolerance” because those were the words I knew — when, in fact, I had been in a near-constant state of presyncope (“almost passing out”). Dr. G questioned me closely about whether I was SURE that I hadn’t been passing out when I was on my own at home; it was through this conversation that we determined how thoroughly I had been overlooking the true state of my body. 🤦♀️
One useful nugget of information that I took from that first visit was that I could massage my carotid arteries to stimulate the baroreceptors to raise my BP in moments when I felt lightheaded — which was usually in the gym. Clean and jerk doubles were the worst culprit — even at light weights, I’d drop the bar from the first jerk and then start to black out before the second clean. Before this neuro evaluation, I would just instinctively lie down on the floor when this happened. However, anyone who witnessed me in the gym in February 2023 probably saw me rubbing my neck a lot 😂 because it really did work!
There was one bright spot in January, though. As it happened, on the 28th, three days after this diagnosis, I did my first Olympic weightlifting meet (which had been planned well before I got sick). Despite being so symptomatic that I couldn’t load the warmup barbell without scooting around the platform on my butt 🤦♀️, the competition adrenaline somehow let me make all six of my attempts and total a 122, which was exactly what I needed (as a 39yo 71kg lifter) in order to compete at Nationals and PanAms later in the year. At the time, I was still looking at Oly as a temporary diversion that was going to make me better at CrossFit — but honestly, I think “karma” knew I needed that 122. It was the beginning of building a new community; not to mention, it gave me some achievable goals and allowed me continue to “feel like an athlete” during the months when my primary sport wasn’t fully accessible to me. Oly would prove to be the best thing to come out of the year 2023. 💙
———
The second week of February, I was back in Dr. G’s office. My first treatment involved the dreaded tilt-table again, which made me nervous — but this time, she was treating me WHILE we used it. The technique is called “neuromodulation” — along with checking my BP and heart rate at each level of the table, she was “stimming” areas of my brainstem with tiny electrical probes: two on the back of my neck, one on my right cheek, and one on my tongue. The electrical message was basically, “hey, we’re changing positions, you slackers need to wake up and find some more efficient pathways via which to do your jobs.”
We hit one level of the table, around 60 or 75 degrees, that felt a little weird. “Oh no, not again!” — but this time we oscillated there, down and up, continuing the brain stimulation, until it felt better.
And lo and behold, when we hit 90… I did not pass out. 🥳 I didn’t feel GREAT, but I also didn’t hit the floor.
Two weeks later, I had another visit. Same protocol. And that time… I freaking aced it. 😈
This was what Tara had meant when she said I’d be able to see improvement quickly. I somehow had the incredible luck to land in Dr. G’s office only a MONTH after getting sick, which meant those inefficient blood pressure neural pathways weren’t firmly reinforced yet. It didn’t take too much effort to override them, because they were essentially brand-new. This wouldn’t prove to be the case for the left cerebellar dominance and the eye tracking issues — both of those had likely been present for decades without me ever knowing, meaning THOSE neural pathways were ironclad and would take far longer to override — but the unstable blood pressure was the most “dangerous” symptom, and being able to have that addressed within a month was a huge win.
———
I’m not sure I can emphasize enough that this is NOT the story of most people with PASC // Long COVID. Four years into the pandemic, with one in eight people who contracts COVID experiencing some degree of long-term symptom, those who go the traditional (allopathic) medical route are finally beginning to be believed… but are still seldom understood, and therefore are rarely referred to providers who can actually help. If I hadn’t gone to Dr. Gabella of my own accord, my guess is that I would have eventually passed out in some public place and ended up with a cardiology evaluation. Had I failed the tilt-table test THERE, I likely would have been placed on medication to raise my blood pressure and left on it indefinitely, similar to the treatment for POTS (which is also a form of dysautonomia). As conflicted as I sometimes feel about pursuing treatment outside the allopathic realm that I’ve been trained to trust, it’s really hard for me to argue with these results.
I remember seeing two (separate) patients myself back in 2020 — both male CrossFitters — who had had COVID during the early days, before vaccines (which, we now know, is the era that spawned the largest number and the most severe cases of Long COVID). They both reported the same thing: intermittent breathlessness and “every time I try to metcon, I’m just wiped out for DAYS.” (I didn’t know what post-exertional malaise was back then, but I certainly do now.) One said to me, “I know all my vitals seem normal; my PCP didn’t know what to tell me either — but I know my body, and something just isn’t right.”
I think about those two patients more than they’ll ever know. I doubt I was able to help much — partly because these visits took place at a retail health clinic with minimal capacity to order outside-the-box testing or place referrals for something like this — but mostly because, at the time, I obviously didn’t know any more than anybody else did. We barely had testing for acute COVID back then, let alone any understanding of the longer-term ramifications. I do remember reassuring each of them that I believed them — that I was a CrossFitter too, that athletes know their bodies better than anyone else, and that if they said something wasn’t right then I trusted their assessment. I actually also remember recommending that they try to back off from metcons and focus on strength work first, before advancing to cardio… just because that advice somehow felt right to me on a gut level (confirmed, I guess).
I really wonder how they’re doing now — whether either of them were as lucky as I was, and whether they’ve gotten any help that actually made a difference?
———
In late February 2023, my own treatments moved on to eye exercises. These mostly involved watching a ball jump across a screen in various paths, sometimes with stripes moving in the background. These were like physical therapy — boring, but also really, really hard for me. I never got too tired doing them in the neurology office, probably because I was hooked up to brain stimulators and oxygen — but for the first month or two of doing them at home, they would make me exhausted and HUNGRY (my brain was apparently using a lot of glucose to accomplish the task).
A phenomenon that blurred together with starting the eye exercises was that I began “crashing” pretty much daily in the afternoons. I hadn’t heard anyone else use that term yet; it was just what it felt like to me. I’d be okay in the morning, would either train or get 4-5 hours of computer work done… and then around 1pm, I’d “crash,” with a headache, nausea, and light sensitivity — like a bad migraine. I learned pretty quickly that I couldn’t train in the afternoons anymore, even if I’d had a slow morning. Ibuprofen did not touch the headache (another similarity to migraine; this was a neurological headache, not a “typical” one). Nothing would fix the symptoms besides time in the dark — I’d lie in bed with an eye mask and either try to sleep or just count my own heartbeats and wait for it to pass. 🤷♀️ (The eye mask was crucial, as my eyelids alone were not sufficient for blocking out light; it needed to be PITCH dark in order for me to get relief.) Between 5 and 6pm, I’d start to feel better, and would have the energy to take on a few more small tasks. It was an odd pattern, and thoroughly predictable; it went the same way every single day.
In the moment, I was worried that maybe my neuro treatments were making me worse instead of better. In hindsight, though, I can see that addressing the BP instability had allowed me to spend more time on my feet and to push myself a bit more. In other words, I had less of a “governor” to slow me down, and I was therefore experiencing the natural consequences of not pacing myself. (This same dynamic would show up repeatedly as I continued to heal — symptomatic improvement leading to more careless pacing on my part, and thereby ultimately leading right back to symptom exacerbation.) By this point I had learned that typical post-exertional malaise (PEM) shows up 24-48 hours after activity and is hallmarked by a profound fatigue; I wasn’t sure why my symptoms were happening on such a predictable daily timeline, but I also knew everyone was different, so I tried to just keep doing my eye exercises and getting through each day as it came.
———
In March, I had my second Olympic weightlifting meet. This one was in Philadelphia; it was my first national meet, and the first one where I was lucky enough to have my own coach with me. Unfortunately, from a symptom standpoint, it was an unmitigated disaster. I was scheduled for a 3pm session (in other words: the absolute worst time of day for me), and although I had (as usual) felt okay in the morning, I spent a lot of the pre-warmup time lying on the floor with my eyes closed, and actually threw up into a trash can right before picking up a barbell. At the time, I didn’t understand what was happening. Everyone around me assumed I was nervous, and I kept saying, “but I don’t FEEL nervous!” But I understand it now. My poor little autonomic nervous system was wigging out, right on schedule. 🤦♀️
Once I touched a barbell, the nausea abated and adrenaline got me through the meet. It was, and remains, my worst performance to date — a full 8kg less than I had lifted in January — but in the moment, I didn’t beat myself up about it too much. It was only my second meet ever, my FIRST national meet, and I had had very little idea of what to expect. I showed up, I totaled, and I got through a session that was scheduled at the absolute worst possible time of day for me — all wins in my eyes. (In hindsight, speaking with nine more months of experience as both a lifter AND a neuro patient, there are a lot of things I would have done differently that probably would have made a big difference — but at the time, I didn’t know what I didn’t know.) And although a large part of me still regrets the fact that the only meet my coach and I have gotten to do together so far was THAT one 🤦♀️, I can also acknowledge that I genuinely NEEDED him there that day, far more than at any other meet I did this year. Trusted support during rough moments is a lot more important than support during victories.
That meet was also my first time experiencing the “next-day” symptomatology — in other words, more of a classic PEM crash. On Sunday, I was supposed to drive two hours to New Jersey, have lunch with colleagues, do a podcast interview, then drive back to Philly. The pre-COVID version of myself wouldn’t have thought twice about this, and I hadn’t yet caught up to the fact that I was different now. I drove to NJ just fine in the morning, then started to get a mild headache over lunch, which was escalating (right on schedule) by the time we sat down for the podcast around 1pm. I knew ibuprofen wasn’t going to help, but out of desperation, I slammed 800mg right as we sat down, just in case.
In Dr. G’s words, I “frontal-lobed” my way through the 70-minute interview — reasonably coherently — then could barely get myself to the car afterward. 😵💫 I don’t think my colleagues noticed that anything was wrong (if any of them are reading this, they know now 😂), but when I started driving, the sunlight was so harsh that it was as though the entire road was glaring at me. I could barely see, my head was splitting in half, and I honestly thought I was going to vomit on the steering wheel.
I realized I wasn’t safe to be driving, but I was (as usual) all by myself. For a moment, I thought I might have to get a hotel in New Jersey and then drive back to Philly the next morning when I felt better. But (and here is where you get to feel the full desperation of a crash) how in the world was I supposed to focus on my glaring phone screen for long enough to figure out where I was, find a hotel that wasn’t a million dollars, make a booking, and then follow the map to get there? I was crying by this point, because every single step of that plan felt completely impossible, and I was scared that it felt impossible.
Then I remembered what Dr. G had told me to do in this situation — take a “brain break,” where I stop what I’m doing and close my eyes for five minutes. That tactic had never helped my afternoon crashes at home, and it seemed so simple that I (frankly) hadn’t taken it seriously until now; it sounded like something that my grandmother would have recommended. But at this point, I had no choice but to pull off the road anyway… so I sat in the shade of a gas station parking lot with my eyes covered for ten minutes.
…and damned if that simple intervention didn’t help! I could barely believe it, but the headache was probably 70% reduced by the time I uncovered my eyes. 🤯 I was still really uncomfortable, but symptoms reduced even further as the afternoon wore on and we got out of my “crash window”. With a couple of lengthy stops, I was able to get myself back to the city. However, I was embarrassed and scared by how deeply messed up I had felt for those couple of hours, and didn’t tell anybody about the full depth of this experience right away.
At my next neuro visit (in late March), I told Dr. G about it. She asked a couple of questions about my daily afternoon crashes (yep, still happening), and then made a suggestion that was hard for me to hear. She thought my brain had recovered to the point that my Prozac — the pill that had helped me feel so much BETTER as a full-time healthcare provider during the first two years of the pandemic — might actually be giving me MORE neurotransmitters than I needed, and hence contributing to the severity of my afternoon symptoms. (The peak time to serum concentration of fluoxetine is 6-8 hours; I was taking the pill when I woke up in the morning, and then experiencing symptoms virtually exactly that time frame later.) I was nervous and skeptical, but I decided it was worth a try.
Literally the DAY I stopped taking the Prozac, my crash severity dropped by at least 50%. It was still happening daily, but it was more of an ‘inconvenience’; I was no longer fully incapacitated. I also didn’t notice any discernible effects on my mood at all from the discontinuation, further evidence that I no longer needed the medication. (This would become relevant later.) I was grateful, of course, but all I could think at the time was — we couldn’t have figured this out BEFORE Nationals?!? 🤦♀️😂
———
Through April and May, things started improving fairly rapidly. I continued seeing Dr. G every two weeks, and we continued working on the eye exercises. My crash severity continued to decrease — it didn’t stop, but it became progressively less debilitating — and the eye exercises were no longer feeling difficult. They were still boring, but I wasn’t getting tired and hungry from them anymore.
I could also tell they were working. In early April, I had a magical moment in the gym where I was doing butterfly pull-ups… and realized I COULD SEE THE BAR. 🤯 As in, I knew where it was visually throughout the entire movement. That hadn’t ever been true for me before… and I hadn’t ever realized it was SUPPOSED to be true, because how can you miss what you’ve never had?
The same thing translated over to weightlifting. It wasn’t every day or even every week, but I would have “magical” sessions every once in a while — usually the first snatch session after a neuro treatment — where I could HOLD A SPOT visually throughout the entire lift. I’ve always tended to be very wobbly in the bottom of a snatch, and it turns out, that happens in large part because my brain can’t always effectively receive and interpret the visual input that tells it where my body is in space. On the days when my eyes can hold a spot, I’m dramatically more stable in the bottom, because my brain is receiving the visual input that it needs and doesn’t have to compensate by using my proprioceptive system to wiggle around and “find gravity” that way.
Another symptom that was finally improving was my exercise-induced anaphylaxis (EIA). As with everything else, this was a symptom that I had very occasionally experienced pre-COVID that became pathologic after I got sick. EIA is exactly what it sounds like: exercise triggers my throat to start to close up. However, it had never really scared me, because it always went away within seconds as soon as I stopped running or working at intensity (which is the hallmark of the condition: it resolves with cessation of exercise). It was unnerving to the people around me, though, who could hear the stridor for those few seconds as I pulled air through my narrowed trachea, waiting for it to reexpand. As with most people with this condition, mine would flare in hot humid conditions; running or metconning outdoors in a Southern summer was the usual culprit. It had also become slightly more frequent after starting birth control pills (because progesterone makes our core body temperature run about one degree hotter). I remembered it occurring as early as age 22, near the finish line of a race, and had felt it maybe twice a year since then.
After having COVID, however, the EIA began to happen on a near-weekly basis. I wasn’t metconning very much anyway for obvious reasons, but for the first half of the year, it seemed like I almost couldn’t get through a metcon at all without it occurring (and once it happened, that metcon was dead in the water, because I couldn’t resume anywhere near my previous pace without it happening again). It was very frustrating at first, because often my body was nowhere near max capacity, yet my nervous system would ‘seize’ anyway. I’d lie down on the floor in front of the fan and wait for my throat to reopen and despair about how in the world I was ever going to manage to compete again. 😭
In discussion with Dr. Gabella, I started to learn the trends. I wouldn’t have picked up on this on my own, but from her perspective, she could see that the anaphylaxis was a feature of my dysautonomia that was being visually and vestibularly triggered. In my mind, it was biking and double-unders that were the culprits, since that was where the symptoms would kick in. However, what was actually happening was that I would perform a “visually taxing” movement that felt completely fine to me (wallballs and DB snatches were two big ones), and THEN pivot to a high-heart-rate movement like biking or DUs — and my already-overloaded autonomic nervous system would respond to the increasing heart rate by essentially “locking up” and sending me into anaphylaxis. In other words: throwing its invisible hands into the air and screaming THIS IS A FIRE HOSE OF INPUT AND WE CAN’T HANDLE IT ALL.
This particular symptom wasn’t a quick fix at all. It was nothing like the blood pressure; this was an older, more well-worn neurological pathway, and the only way to stop triggering it was to improve my visual and vestibular function enough that THEY stopped triggering it. In other words, continuing the eye exercises every day, and making some metcon adjustments to remove certain movements in the meantime.
This was another case where “fixing” my BP and improving my eyes was allowing me to push myself harder than I “should have been able to” with Long COVID. The anaphylaxis was my brain’s way of showing me that my autonomic nervous system wasn’t actually healed yet, despite my wishes.
One really useful thing that I got out of this period, though, was a particular eye exercise that I still do on the weightlifting platform to this day. Since my right cerebellum tends to be underactive, Dr. G showed me how to fix my eyes on a spot, jerk my head fast to the right (while keeping my eyes on the spot), then slooooowly move my head back to center. Doing this two or three times before taking a lift makes an absolutely incredible difference in terms of ‘waking up’ my right side and allowing it to fire properly on a lift. The aforementioned wobbliness in the bottom of a snatch was much improved, but an even bigger change (that was literally IMMEDIATE, between one rep and the next) was that I was able to achieve proper overhead position on a heavy jerk without throwing my head to the left. It felt like pure magic — I couldn’t stop talking about it for weeks — and although it’s such a part of my routine now that I don’t really think about it, I can absolutely tell a big difference in my lifting if I forget to do it.
———
By the end of May, the anaphylaxis was probably 70% improved, my daily “crashes” were still manageable, AND I competed in my third Olympic weightlifting meet — my first international meet (Masters PanAms in Orlando, FL). Happily, this one went beautifully. I had a morning session (hallelujah), managed my nutrition much better, totaled 122 again, and even got to attempt a 70kg clean and jerk (a weight I had never tried on a platform before). I was feeling pretty optimistic about things.
In early June, I asked Dr. G if we could take a break for the sake of my wallet. I didn’t use the term “recovered,” but I was feeling so much better that I kind of figured I effectively WAS. (Admittedly, there was also a part of me that was feeling “weak” for being sick, AND a bit guilty about seeing results from a non-recognized area of medicine… and those parts of me wanted to be done with treatment ASAP and put it all behind me.) Dr. G agreed that I was doing well enough to merit a break.
In mid-June, newly released from treatment, I decided to try a gentle calorie deficit. I was still competing as a 71kg lifter, but I was cutting it a little bit closer every time in terms of making weight. Although I wasn’t unhappy with my body, I was aware that it had changed; I hadn’t been doing much conditioning thanks to the nervous system issues and the weightlifting focus. I hadn’t cut in two full years and knew I was in a good place for it metabolically, and I thought my brain was finally healthy enough to try to drop 2kg or so.
This is a decision that I deeply regret. (Morgan Freeman: “Her brain was NOT, in fact, healthy enough.”) Long story short, my still-fragile brain was not ready for the stressor of being underfed, and I essentially sent myself into a relapse. 🤦♀️ I’m well-acquainted with cutting and the spectrum of symptoms that can accompany it (and this was actually the most gentle deficit I had ever undertaken — I was still eating 2500 calories!) — but my physical response was unlike anything I had ever experienced. I wasn’t particularly HUNGRY, but within a few days, my entire body hurt from head to toe — not “muscle soreness,” but body PAIN, as though I had been dragged behind a truck. (Ever had the flu, and had such bad body aches that your “hair hurt”? This felt like that.) For the duration of the deficit, the only moments when I did not feel full-body pain were when I was training, sleeping, or on the bodywork table. More worrisome was that my mental health also took a sharp dive — I had been doing absolutely fine off Prozac for months at this point, but by the end of the second week of a calorie deficit, I was crying on the floor of the shower, “Nobody cares about me; what am I doing here? What’s the point? Nobody would even notice if I were gone.” 😭
Fortunately, I had the wherewithal to recognize that this moment was a hard stop. At this point I didn’t understand what was happening or why my brain was putting up such a fight, but I knew no other cut had ever done this to me, that even my post-COVID brain hadn’t felt like this when I was fully nourished, and that any competent adult would be seriously concerned if they knew how I was feeling.
I got out of the shower, ate a solid meal, and wrapped my head around the idea of competing as a 76 for a while. The hardest part of this decision wasn’t the aesthetics; it was the letting go of my strict muscle-up goal (at least temporarily). Muscle-ups are a top-three goal of mine to this day, and putting that on hold AGAIN was exceptionally hard.
But even in the midst of the dark thoughts, it was clear to me that my body was making this decision FOR me, and that the only responsible choice at this point was to give it what it needed. I could kick and scream about it… or I could take advantage of all that food and recovery and get strong. I chose the latter. 💪🏼
However, the physical recovery from this incident wasn’t linear. I felt “better” with more food, but still not RIGHT — I was still sad, still “not myself”. Coincidentally, I had some adaptogens (rhodiola and ashwagandha) left over from some previous nutritional adventure, and started taking those. In my mind, this was a temporary support to help my HPA (hypothalamic-pituitary-adrenal) axis recover from the stress of the cut, and I’d just take them until the bottles were gone. I started feeling a LOT better fairly quickly, but (silly as it sounds) I actually didn’t relate this to the adaptogens at the time; supplements were one of the things that my “Western med brain” had been trained to be skeptical of, and in my head, they were distantly secondary. Stopping the cut was “obviously” the thing that was making the difference; the adaptogens were just a supplement, just “a thing I was doing until they ran out.”
Guess what — in July, they ran out; my mental health promptly tanked to a scary place AGAIN… and, back on the floor of the shower, I somehow STILL didn’t make the connection. 🤦♀️ Instead, I restarted my leftover Prozac out of desperation. (What can I say; that’s how a “Western-med brain” works!) And, to no one’s surprise — after a week of medication, the heightened afternoon “crashes” were back, with full-fledged headache, nausea, and light sensitivity all over again. In the midst of all that, I was also aware that I wasn’t feeling the same mood relief I had experienced on this med previously — I was “less sad,” but still not MYSELF.
This was the point at which I started truly taking responsibility and “being my own scientist”. I had blithely assumed that I was slowly getting better and that my recovery would continue to move along linearly. This failed cut, followed by two months of fallout, was a wakeup call. My brain still wasn’t right, and I needed to figure out how to help it.
———
Throughout August, I tapered the Prozac down to a dose that I could tolerate without afternoon crash symptoms — every other day, then every third day — until I finally came back off. However, I was still totally confused. I understood that it was a good thing that I already had enough neurotransmitters even without the Prozac, but if that were the case, then why didn’t I FEEL better? (Morgan Freeman: “All while the empty adaptogen bottles continued to sit at the bottom of the trash can…”)
In the midst of this confusion, the highlight of August was my fourth Oly meet, which was my best one to date. It was my first time competing as a 76, meaning it was the first time I was able to eat normally leading up to it and have breakfast BEFORE weighing in (what a difference!). There was also nothing at stake — I had already qualified for AO Finals and this was a local meet that couldn’t officially qualify me for Masters Worlds — so my coach had told me to treat it like “a heavy training day that just happens to have referees.” In other words, throw some weight on the bar and see what happens.
It worked. I completely surprised myself by snatching 58kg (95%) and clean & jerking 70kg (100%) for a total of 128… which is actually 2kg MORE than I would have needed for Worlds, even in my new weight class!
I came away from that meet incredibly proud of both my physical performance AND my mindset throughout. Entirely separate from COVID, I waited a long time to compete in athletics because I wanted to make SURE that my mindset would be rock-solid, and so far, I have had nothing but awe for myself each time. On this particular occasion, I had hurt my back pretty badly in warmups and then missed my first platform snatch, yet both those things were instantly out of my head as soon as they happened, with no real effort on my part. This mentality is probably the thing I love most about competing: that my focus gets to narrow down and become very small. I can certainly get rattled or emotional in TRAINING — but never in competition. Nobody else matters, whatever happened five seconds ago doesn’t matter; it’s only me, in THIS moment, and the ‘next right decision’. Nobody can take that flow state away from me. I am a very cerebral, strategic, mature athlete — that is my greatest strength, far more than anything physical — and I feel absolutely fucking unbreakable when I compete. 🔥
…That back injury, though. 🙃
To the best of our collective understanding (me, coach, PT, chiro, and bodywork guru), it was a L5/S1 disc or nerve irritation. It was one of the scarier injuries I’ve had just because it was “different” — I was feeling pain in my low back with touching my chin to my chest (which the PA in me knows is a meningeal sign), as well as a persistent fasciculation in my right calf (for literally a month 😖). However, this is the bread and butter of the orthopedic world, and everybody stepped up in their own badass ways. Coach adapted my training program; PT evaluated me and gave me some nerve glides and rehab exercises; bodywork and chiro kept me comfortable. Happily, I was out of pain within ten days and back to full lifting within a month. In hindsight, that was probably the “easiest” injury I’ve ever navigated, partly because I had a team of experts already in place, and partly because I was riding the high of an incredibly successful meet and the confidence of knowing that I actually COULD qualify for Worlds at my next one. 😈
But, of course, this couldn’t be the end of all bumps in the road.
———
As September wore on, I really wasn’t feeling very good. I had been blaming the back injury — “wow, my body is having a really hard time recovering from this stressor” — but it became clear that it was more than that. The afternoon “crashes” had shifted away from headache/nausea/light sensitivity since getting back off the Prozac, and they had become pretty mild overall — but now my level of FATIGUE began to ramp up. I was needing more naps than I had before, almost every day, and was finding it harder to focus on work-related tasks. Full post-exertional malaise (PEM) was also becoming a thing — if I did a metcon on a Sunday, the odds were 50/50 whether I’d be able to get out of bed on Monday. And although the BACK pain was essentially resolved, I was noticing that weird full-body pain again. It wasn’t as bad as it had been when I was cutting, but it wasn’t normal muscle soreness, either.
Finally, finally, finally — I thought of restarting the adaptogens. My (incorrect) rationale was that the symptoms were persisting because the back injury had been a “stressor” just as the cut had been. “Didn’t this seem to help before? Maybe it’ll help again.” I took my first dose in the evening — and woke up the next morning with the full-body joint pain GONE. I couldn’t believe it. I continued to take the rhodiola and ashwagandha morning and evening — and within days, my mood had brightened, too. The fatigue and brain fog were untouched and continuing to slowly worsen; I was a long way from ‘cured’ — but it all seemed a little more manageable with a sunnier disposition.
Literally one week later, a study was released in Nature outlining some of the blood markers common to those with PASC // Long COVID. The most prominent, present in ~95% of cases, was low cortisol. “Wait, LOW cortisol? But aren’t adaptogens supposed to lower cortisol FURTHER?” I panicked for a moment, but upon further reading, it turns out adaptogens have both a ‘push’ AND a ‘pull’ effect — they can lower cortisol in situations where it’s too high, but when needed, they also slow down the BREAKDOWN of stress hormones, so that we can hang onto more of what we already have. (My armchair quarterback understanding is that this is almost certainly what took my joint pain away — appropriately increased levels of circulating steroid hormone.)
The adaptogens were definitely helping — however, as the days continued to shorten, the fatigue and brain fog continued to slowly creep higher. My business marketing and Instagram posting fell off significantly, because I couldn’t easily string thoughts together into paragraphs and larger ideas the way I usually could. Sometimes I’d write something, and then realize several hours later that my own words didn’t make sense to me anymore (which isn’t necessarily a great idea to admit when you make a living with your brain). This was also a frustrating time with regard to energy management, because a level of activity that had been fine the previous week would suddenly be too much. I’d adapt to that week’s “new normal”... and the next week it would drop again. The hardest thing folks with ME/CFS or Long COVID have to learn is pacing, or how much energy we can expend on a given day without crashing the next day, and that particular threshold was really challenging for me to pinpoint during these three months, because the goalposts kept moving. With my capacity progressively declining, it was hard not to end up in what long-haulers call a “push-crash” cycle — I’d push a little too hard (“trying to get things done”) on days when I felt good, would inadvertently overextend myself and “crash” with PEM for a day, then dig out of the hole just in time to push too hard again.
I was paying close attention to my Garmin watch parameters to see if I could identify any trends. One thing I learned was that I could use my heart rate to predict with near-certainty what I would need in order to feel better. If I was feeling tired, but my heart rate dropped to normal resting levels after a few minutes of lying down, then some “quiet time” with a book would be sufficient to bring me back to baseline. But if my heart rate was still hovering around 65-70 even after I’d been lying down for 20 minutes, then the only thing that would “fix me” was my eye mask and 90 minutes of full SLEEP. I could usually sense these physiological needs without the watch, but it was nice to have some objective data that confirmed how I was feeling.
In October, as symptoms continued to escalate, I went back to Dr. G for the first time in a few months, hoping there was something she could do to help. She recommended adding a third adaptogen (holy basil) as well as large doses of fish oil (minimum 1200mg EPA and 900mg DHA each day) to address the persistent neuroinflammation that is seen on the brain scans of Long COVID patients. She also reminded me about using a “blue light” (sunshine mimicker) in the mornings as the days were getting shorter and darker — she agreed with me that the seasonal change was almost certainly what was causing my decline.
I was disappointed at first to realize that there were no “tricks” to address the fatigue the way there had been for the blood pressure or the visual symptoms. But functional neurology’s view of fatigue is that it is a secondary problem, not a primary one. In other words, fatigue stems FROM our brain using inefficient pathways to accomplish tasks — working extra hard to do jobs that it COULD potentially do more efficiently if it were shown how. Dr. G’s opinion was that the fatigue would resolve when the underlying neural connections became more efficient (including my HPA axis figuring out how to calibrate to the shorter daylight length for the first time since being walloped by the virus — I had been sick literally AT the solstice, so this season was a part of the year that my “new brain” hadn’t experienced yet). In the meantime, the adaptogens, blue light, and fish oil should help me symptomatically so that we could continue working to optimize how my visual and vestibular systems were functioning.
———
As an unrelated coincidence, I noticed right around this time that I seemed better able to hold a visual spot during weightlifting while wearing my glasses. This pair of glasses was ostensibly only for nighttime driving, as the prescription was very weak, and I can’t even remember what led me to try them in the gym one day… but once I did, the difference while snatching was so obvious that I immediately decided I was going to wear them from now on. The odd thing was, I didn’t notice massive improvement in visual ACUITY (if I had, I certainly would have worn the glasses sooner!). What I noticed was improvement in how I FELT — more relaxed and more stable. (I know now that this is because even that minute sharpening of my visual input meant that my eyes were better at “locking onto” a spot and delivering positional input to my brain. Dr. G and the eye doctor would later concur that this was yet another area where my left eye had been doing most of the work for a really long time, unbeknownst to me; the glasses helped the right eye to step up a little.) At any rate, I took this unusual observation as a sign to make an eye doctor appointment.
———
The highlight of November was competing at the Howard Cohen American Masters weightlifting meet in Nashville, TN and meeting my goal of qualifying for the Masters World Championships. After not having snatched 60kg successfully in training since day one of COVID (eleven months prior), I walked out onto that platform (in my glasses!) in front of the judges, in the moment when it mattered… and I fucking did it. 😎 I had planned that third attempt ahead of time — just “had a feeling” that it might be there on meet day — and I was right. It was one of my proudest moments as a lifter — going 3/3 in snatch at 91%, 95%, and 98%! 🔥 My 70kg clean and jerk was ruled a no-lift (two out of three judges perceived an elbow wobble), but it didn’t matter. A 40yo 76kg lifter needed a 126 total in order to quality for the Masters World Championships, and I had just earned a 128. I was going to Finland! 🎉
Something valuable that I learned at that meet was that taking a “brain break” after the snatch — just as I had done during that terrible neuro crash in New Jersey — helped me significantly in terms of fatigue burden when it came time to clean and jerk. (According to Dr. G, the reason this helps is because it gives my brain a chance to clear out excess dopamine — in this case, stemming from the bright lights and heightened visual stimuli of a competitive setting.) I wouldn’t have thought to do it had I not struggled somewhat with the drive to Nashville and needed a couple of brain breaks in various gas station parking lots… but each time I took one, I’d be good for another 90 minutes of driving before getting uncomfortable again, so it occurred to me that this would be worth trying during the ten-minute break between lifts. There’s a fairly hilarious picture of me lying flat on my back on the concrete floor, clad in my singlet and lifters, arms and legs splayed like a snow angel, eye mask firmly on my face. 😂 We also (coincidentally) snagged a warmup platform where I was facing a plain black curtain; there was nobody lifting in front of me as a distraction. This, too, was a massive help, and is something I will 100% try to deliberately do again at all future meets.
After my session (and hitting my goal of qualifying for Worlds!), I was (in hindsight) amped on adrenaline. In the moment, I didn’t recognize that; I just thought I felt unusually great, like I was getting a ‘meet miracle’. Hey, no crash! Let’s go explore Nashville! I drove into the city, walked around Music Row, got a burger, took some skyline pictures, watched my own lifting videos 84625 times. It was a great afternoon.
I didn’t sleep well that night (in retrospect: continued adrenaline)… and then the next day, it was time to drive 9 hours back home to North Carolina.
———
I am generally not someone who makes the same mistake twice, but this was VERY reminiscent of the disastrous day in New Jersey after Nationals in March, and in hindsight, I feel like a prize idiot for structuring things this way. I wish I had recognized that PEM was very likely, because I would have planned things differently. 🤦♀️
I first drove 45 minutes (the “wrong direction”) back into Nashville to meet a friend for brunch, then buckled down for a 5-6 hour eastward trek to meet my cousin for dinner near Burnsville before driving the rest of the way home to Durham. For a large chunk of the way, it wasn’t feeling nearly as bad as I had expected! On the drive TO Nashville, I had split it into two 4-hour halves by staying with my aunt overnight, and I had done “okay,” not awesome. Driving this direction, though, the sun wasn’t glaring as badly as it had been on the way there, and although I still stopped for brain breaks (literally putting on my eye mask and lying down in the backseat of the car for ten minutes), I was overall feeling much more comfortable. I even posted a Story on IG about how much better I felt this time.
…which, of course, promptly jinxed me. I developed a headache almost immediately after that post. But I told myself it would be okay; I’d get a break while eating dinner, the food would help, the sun would be down, it would only be another 4 hours back to Durham from that point… no problem!
Famous last words. 🤦♀️ I couldn’t finish even half my dinner due to nausea and head pain, and felt truly horrible by the time I was getting back into the car. Instead of the lack of sunlight feeling soothing, the headlights glaring at me from the other side of the highway were giving me what felt like the mother of all migraines — head splitting, super nauseated, lights stabbing me. Within 20 minutes, I was crying (actual tears) like a toddler, “it’s too bright, stop shining at me!” We were on the highway, and I was deliberately following a semi, with a bright rectangle of red lights around its back end, because I was having trouble seeing.
…and right about then, the semi hit a deer, and its body cartwheeled across the highway and smacked into the median. 😳 In the moment, it just felt like a bad omen — but objectively, if I’d been one car up, I almost certainly would have hit it myself.
I finally conceded that literally ANY rational adult would take one look at me and tell me to stop for the night while I still had the option of going to my aunt’s house (which was still about 35 minutes away, and in the moment, even THAT distance felt genuinely insurmountable). I pulled off the highway, took a LONG brain break in a gas station parking lot until the nausea receded, and texted my aunt. Got back on the highway, made it ten miles, and had to pull off and rest with the eye mask again. What a mess. 😭
I finally made it, and per usual, 20-30 minutes lying down quietly with my eye mask restored me to ~90% of myself. But this was a bad one, definitely the worst crash since March. By the time I finally got to lie down, I was shaking as though I were freezing cold, but the shivers were coming mostly from my neck and chest muscles. (Dr. G would explain to me later that this was a “tapped out” sympathetic system that was no longer properly inhibiting the parasympathetic system. In other words, I’d been riding an adrenaline wave for 36 hours that finally broke in a big way.)
It was an incredibly demoralizing feeling, to go from what had been essentially maximum capacity (snatching 60! qualifying for Worlds!) to being virtually helpless. It really took the wind out of my sails, and I was pretty mad at myself after that experience. “I should have known better than to trust how I was feeling after the meet; it was too good; that’s not normal for me anymore.” I talked with my coach, and we made a rule: arrange future travel plans such that there will be no significant driving or other new/stressful circumstances the day after competing. Dr. G also agreed with my suggestion that the night after a meet might be a really good time to strategically take a clonazepam before bed. (As a sedative, it’s a parasympathetic stimulant, and getting true restful sleep would likely “break the wave” such that the following day wouldn’t be so tenuous.)
Dr. G also thought my vestibular system had probably played a role in that drive being so terrible, so at my next visit, she put me back on the tilt-table and we ran through another treatment there, just as we had back at the beginning. I was skeptical — I associate the vestibular system with “dizziness,” which has never been a part of my symptoms — but she was right again. That was the first and only appointment where I walked out of the office feeling significantly physically better than when I had walked in. I couldn’t even define WHAT I was feeling, just that I was sitting more comfortably inside my body somehow.
The next few weeks, though — late November and early December — were still very ‘nonfunctional’. On most days, I could either train OR work (never both), and that was pretty much it. In October, I had been able to count on having the bandwidth for one additional errand (a client meeting, a trip to the grocery store, etc.), but by the end of November, that was no longer possible. I was having groceries delivered because I couldn’t manage going to the store. There was one occasion where I even had to turn down work because I knew I couldn’t cognitively handle what was being asked. That scared me in a way that nothing else had. “Am I going to lose the ability to financially take care of myself?”
———
One bright spot, though, was going down to Florida to spend Thanksgiving with my family. Two significant things happened on that trip. The first was a huge uptick in energy — as anticipated, with deep blue skies and longer daylight, I perked up like a little sunflower. 🌻 The first two days were only marginally different, and then I woke up on day three feeling very close to my old self! My HRV was almost double what it had been in North Carolina, and although I was still napping in the afternoons, now it was only for 20 minutes or so. It was a pretty amazing shift.
The second significant event was that I saw the eye doctor for the first time in five years. This is another “WHY-didn’t-you-do-that-sooner” moment — turns out that although my left eye had remained very stable since my last visit, my right eye had taken a steep plunge into astigmatism — from “mild” to “moderate-severe”. The eye doctor was surprised at the degree of change, and told me I needed to start wearing correction all the time (not just for nighttime driving). “Your left eye’s been doing more than its fair share.” (You don’t say?! 🤦♀️)
I found it interesting that it was my RIGHT eye that had taken such a dive (the right side is the “underactive” side on everything else, too), but the eye doctor and Dr. Gabella both agreed that this was unlikely to be a PASC manifestation. As a teenager, my right eye was always a full point worse than the left one, and since I’m post-LASIK, the right eye now has a unusually flat cornea from the correction, making it prone to astigmatism. Since the optic nerves are each pulling from BOTH sides of the brain, the asymmetry was likely just a coincidence.
Coming home from Florida was heartbreakingly rough, though. I had felt so good, like taking a deep breath for the first time in months — and then within minutes of leaving the airport in NC, my poor little HPA axis was suddenly uncomfortably aware of how low the light was and how PALE the sky was by comparison. I could feel a sense of tension rising in my body before I’d even made it all the way home, and by that night, I was having a sobbing meltdown for absolutely no discernible reason. Even as I was crying, I was saying out loud, “this is stupid, this is STUPID, there’s literally nothing wrong!” 😭 It was like an amplified version of seasonal affective disorder (which, for the record, is also thought to be largely mediated by the HPA axis).
Late November and early December weren’t fun weeks. I continued to put one foot in front of the other — taking my supplements, using my blue light every morning, keeping to my usual schedule — but it all felt “flat” and pointless, and I know I wasn’t much fun to be around. I had zero bandwidth for any social interactions or activities outside of work and the gym, was struggling to eat, and worried about my future as a business owner if this was how my brain was going to behave for six months out of the year. Everyone else was gearing up for American Open Finals, one of the biggest weightlifting meets of the year — and when asked how I was feeling about it, I admitted more than once, “I’m having a really hard time caring.” The thing that kept me going was the assumption that the solstice would be a turning point, that I’d start to slowly feel a little better after that as the days gradually lengthened.
———
As it happened, though, the adrenaline once again showed up when it needed to, and AO Finals — my first USA Weightlifting meet — actually ended up being my best one of the year. Although I didn’t go 6/6, I hit a PR total (130) by snatching 60 on the platform AGAIN 🔥 (after not attempting it in training at all in the interim), and also being credited with the 70 CJ that had been ruled a press-out in Nashville. And I did all of this despite an incredibly chaotic snatch warmup AND no time for a brain break between the two lifts. This was the third straight meet where I had a real insight into the mature competitor I had become, and was really proud of her. 💙
This meet was only about two hours from home, so I did have to break the rule of driving the day after a meet. I had assumed it would be fine because it was so short, and it was fine… but the odd part was, it felt NORMAL, with no hint of a need for a brain break. I had learned from my Nashville experience and taken a clonazepam the night before, so I had slept well, and it was a gray, rainy day with no harsh sunlight and nobody on the road. The time flew by; I felt like I blinked and was back in Durham… symptom-free. 🙌🏼
And the next day… still symptom-free.
And the next. And the next.
No crashes, no naps, no headaches, no light sensitivity. Normal energy levels. And… even reasonably happy. Kind of itching to go to the gym, actually.
What the hell?!
Since we had determined that this symptom pattern was a “seasonal slide,” I had fully expected that I’d be feeling bad until the spring. I had no idea what had changed.
At my next visit, Dr. Gabella’s theory was that my brain — specifically, my circadian rhythm and HPA axis — had been struggling to calibrate to the shortening daylight. As a general rule, Long COVID patients have low cortisol, and cortisol is an important part of circadian rhythm. As we continued to lose a minute or two of light every day throughout the fall, my brain had been racing to try to keep pace, but never quite catching up. December 11, the day when I snapped out of it, was just ten days from the solstice; by that point, we had lost essentially all the daylight we were going to lose. Her thinking was that the slowing pace of light loss had finally allowed my brain to “catch up” and lock onto a winter circadian rhythm. I didn’t necessarily disagree, but I also wondered whether it could have been due to increasing my Vitamin D dosage a week or two prior to this “switch flip”. It takes a while for D levels to rise in response to supplementation; perhaps that level had just finally reached a tipping point. Or maybe both dynamics were true. Unless I experience the same thing again next fall, we’ll probably never know.
———
Christmas in Florida went exactly like Thanksgiving had: two days to find my feet, and on the third day, I woke up with HRV through the roof, energy levels normal, excited to train and to celebrate the holidays at home. I’m not going to say I was completely my normal self, as I still needed a few naps and was definitely quieter than usual on Christmas morning when we had family over, but I felt dramatically better than I had all year.
And this time, coming back home to NC was not nearly as dramatic of a “crash”. My Garmin knew something was different (HRV began to drop immediately 🤷♀️), but I didn’t FEEL bad, which was far more important to me.
As I’m writing this in the first two weeks of January, I’m continuing to feel inexplicably good… damn near normal. I haven’t needed a nap since getting home from Florida, I’ve been able to do 100% of my normal activities without needing to modify, and although it’s too early to make this declaration, I’m very tempted to say that I feel “fully recovered” for the first time all year. After my setbacks in the summer and fall, I’m highly aware of how rapidly this can change, but for now… I feel shockingly MYSELF.
———
So where does this leave me?
That’s a hard question to answer. Honestly, I’ve been on an absolute roller coaster of emotions for these past few “good” weeks. Now that my brain is clear, I can see how much I HAVEN’T had the bandwidth to process over the past year — tremendous losses as well as a lot of wins — and I’m trying to catch up. I feel like anything I say right now might feel untrue five minutes from now.
Let’s start with the easy part. Physically, just as ‘a human in the world’, I’m doing very well. As above, I currently seem to be able to do everything I want to do whenever I want to do it… which feels pretty miraculous.
Physically as an athlete… also doing very well. I’m on a bodybuilding cycle right now (high volume, low intensity), and my body and brain both seem to love it. I can be in the gym for 3-4 hours and still have plenty of energy for the rest of my day, which wasn’t true at ANY point in 2023. Granted, it’s entirely possible that I’ll struggle again when I try to get back to higher-intensity training (Oly and metcons), but I’m feeling optimistic based on what I’ve seen so far. Another really positive sign is that (thanks to adaptogens and lower-intensity training) I’m also tolerating a calorie deficit just fine at the moment 🙌🏼 which, as documented above, was not possible in June. That represents clear progress.
Visual ability is also continuing to progress; I’m seeing Dr. G on just a monthly basis now, and my eyes are functioning much better on MOST days now that I have contact lenses that are fully correcting my vision. I’ll still have a random “bad day” here and there where my eyes just will NOT stay on their mark while weightlifting, especially if there are lots of people moving around in front of me, but that’s not the norm anymore. I also still have the ability to hold a spot during a gymnastics movement (for example, I can SEE my knees while doing a pullover), which isn’t an ability I had before this year and is definitely one of the few GOOD things to come out of this saga. It still feels like seeing color for the first time and realizing what you’ve been missing all your life. 💙
Will I be physically able to COMPETE in CrossFit again (meaning, withstand the demands of seven high-intensity workouts over three days) — jury is still out. I haven’t done a super-high-intensity conditioning workout in the past month, so I don’t yet know whether I’ll get PEM again when I do. What I can say is that regular conditioning has felt fine, even good. Holding a heart rate over 165 is pretty uncomfortable right now, but that’s fully expected after a year of very little cardio. I’ve only had one workout in the past month that felt truly neuro-ish (and it was “12 Days of Christmas,” definitely not a “normal” workout!). Bottom line, it will be hard to know what my long-term capacity is until I get a few more conditioning workouts under my belt and can start to identify trends. Competitive CrossFit has been indisputably off the table for the entirety of 2023, but it won’t necessarily be off the table in 2024. 🤞🏼
But… how I’m doing mentally? Emotionally? Yeah, that’s the harder stuff.
😰 I definitely have a new sense of my own fragility. I’m very aware of how easily I could become disabled, AND how difficult it would likely be for me to get any kind of assistance. (This is not unique to me; honestly, we are ALL just one breath away from stepping off a curb exactly the wrong way and cracking our skull. In the words of my therapist, “People get really uncomfortable when they realize everything is an illusion.” Pro tip, y’all: get a long-term disability policy… COVID for sure isn’t the only unexpected medical thing that can take our whole livelihood away.)
🙏🏼 I also have a HUGE sense of gratitude that I shifted to working for myself when I did, because I would absolutely not have been able to handle a clinic job this year. I’m not sure how to explain to healthy people that eleven-hour days of 30+ patients and staring at screens would have legitimately not been possible. Every day would have been like those two horrible post-meet crashes. I would have ended up on medical leave, probably in dire financial straits, and would have gotten far sicker than I did (it goes without saying that I would have been totally unable to train athletically at all). The universe was really looking out for me on this one. 🙌🏼 There were definitely periods of time where I did nothing BEYOND client-facing work — but because I had the flexibility to only do extra when I had the bandwidth to do so (AND had had a year to build up a full client load and to reach a point where I was pricing myself fairly), I was able to make it work. Most are not this lucky.
😰 The survivor’s guilt is also real. There are 67 MILLION people out there with Long COVID, and a lot of them have been housebound for years. Why did I get to be lucky enough to NOT be severely affected? Why did I get to land right in Dr. Gabella’s lap almost immediately? Why did I get to recover? Why am I the one who has the cognitive clarity to TELL my story? Why me?
😷 I’m also finding myself extra upset with those who still won’t mask in crowded spaces during periods of high infectiousness. Right now, we are in the second-worst surge of the entire pandemic — it’s estimated that 1 in 23 people is currently positive! — and the general public is acting like nothing is happening, still packing together in airplanes, concerts, theaters, etc. with MAYBE a dozen masks in the whole crowd. Granted, the healthcare provider in me has been telling everyone to mask since day one of the pandemic, but the Long COVID patient in me now feels personally offended by those who don’t. “Do you have any idea how awful this year has been for me? Don’t you SEE what this can do to people? Do you want this for yourself, or for those you love? Don’t you CARE?” 🤬😭
🏋️♀️ And as an athlete, frankly, I feel like a completely different person. What I’m most sad about is the loss of a sense of purpose. My athleticism is still the thing that I’m most excited to get out of bed for every morning, but it’s not the all-consuming enthusiasm that it was before. That may yet come back — I hope it does — but for months now, I’ve felt flat and disconnected from the process in a way that I never did before… and frankly, the absence of that fire is highlighting how lonely my life is otherwise. I really miss the joy. 😭
However, while I may have brought different levels of capacity to the table on different days, I literally didn’t miss a single training session throughout the entirety of 2023. 💪🏼 I’m still going through the motions, because on some level I know that these strengths and skills and abilities are still things I deeply want. One thing I do fully ‘feel’ at this point is the deep emotional pain of seeing other people performing the hard-fought movements that I once did, that I so badly want to be able to do again. Butterfly chest-to-bars, strict HSPU, toes-to-bar, handstand walks, the long-sought ring muscle-ups that I briefly tasted in 2018 and have been coveting ever since. I know there’s still some fire inside me somewhere, because I wouldn’t start crying at the mere sight of someone doing CrossFit if I didn’t still want it.
My intuition says that — at long last — now that my head is clearer, I’m slowly starting to find a way out of this ‘flatness’. Most of my “whys” still make sense — community, physical health, travel opportunities, personal fulfillment. And it isn’t a lack of self-belief; while the intensity of CrossFit competition is still a question mark, I do know that I’m still capable of getting stronger, lifting heavier, regaining capacity in my old beloved skills. And I also know that if my body ultimately doesn’t allow me to compete at the highest levels again, that I will find other athletic challenges to tackle and will, in the long run, be okay.
The biggest surprise these past two weeks has been how much the bodybuilding cycle and calorie deficit are helping my mental state. It isn’t really about aesthetics; it’s about feeling “at home” inside my body. I did a very good job of staying neutral during the stretch of time that this wasn’t within my power to change, but now, feeling just a tiny bit more familiar to myself… after a year when I have not felt like myself at all… is disproportionately comforting. The fact that I’m physically tolerating the process this time also restores a bit of my sense of the usual partnership between myself and my body — “I take really good care of you, and in return, you rise to the challenge when I ask you to do hard things.” That hasn’t been true this year, and (I can articulate now) it has felt like I’ve been missing a teammate. Feeling her come back into the game is a pretty big deal. (In the words of my therapist, “it’s like you’ve been hugging your body for a whole year, and it finally hugged you back.” 😭💙)
And I do have to admit — PASC // Long COVID hasn’t brought all bad things. I remember saying early on, when the visual magic was starting to kick in, “what if this ends up being the best thing that ever happened to me as an athlete?” (That was prior to my two relapses, so I can’t say I feel the truth in that statement at THIS point 😂 but I can acknowledge that:
👀 I can hold a spot while lifting or doing gymnastics, which means I have athletic potential that I would not have ever accessed without neuro/vision therapy.
😵💫 My vision doesn’t go black when I stand up out of a chair anymore. That never would have happened without neuromodulation.
💙 I have a vastly increased degree of sympathy for those with ‘invisible’ illnesses. I “knew they existed” before, but now I’ve lived it.
👩💻 As a single, self-employed human, I have an increased sense of what protections need to be in place for my business and my livelihood, to make sure I never again come this close to losing it all.
🏋️♀️ And… I love competing in Olympic weightlifting. From a purely competitive standpoint, I might even like it better than competing in CrossFit. The structure of a meet is ideal for me (three HOURS rather than three days), the sport offers international competitive opportunities, the strategy of it plays beautifully to my particular mindset, there’s huge longevity potential, and the community is hands-down the best I’ve encountered in any sport. It might not feel like quite ‘enough’ for me all on its own, but I also don’t plan to ever stop doing it. It was definitely the best thing to come out of this shitstorm of a year. 💙
———
And no book-length blog post would be complete without acknowledging the people who helped me most along the way:
🧠 My functional neurologist (Dr. Angela Gabella at Precision Brain Center) is the first provider to change my ‘allopathic’ thinking around the world of functional medicine. Pulling together a bunch of tenets from vision therapy, vestibular PT, and the functional world, she fixed my unstable blood pressure within two tilt-table treatments, got rid of my exercise-induced anaphylaxis, got me off Prozac, and helped my visual system exceed its pre-COVID capacity. She understood my supplement skepticism and did not recommend any until I had a setback ~9 months into treatment; when that happened, I saw virtually instant benefit from the adaptogens she advised. I’ve been so grateful for a provider who understood this (essentially) brand-new health condition via a different lens than most allopathic providers would have used, and who never hesitated to explain WHY we were doing the things we were doing. This year has required me to be both discerning AND open-minded in equal measure, and while the functional medicine world at large does contain a frightening number of grifters, I’m so glad I took the leap with Dr. G, because she is hands-down the person who did the most for my recovery. I’m a better athlete by virtue of all the work we’ve done together, and with my newly improved set of eyes, I have potential now that I wouldn’t have had if I’d never gotten sick.
🏋️♀️ My coach, Justin McClintock (Feel Strong Fitness) has been a friend for over a decade and ‘officially’ my coach for nearly five years now. I leaned on him really heavily during this time, both logistically and emotionally. Logistically, there were LOTS of programming adjustments that had to be made in order to keep me appropriately challenged, not overloaded, and not demoralized in this ever-changing situation, while also still competing in six Olympic weightlifting meets in one year (!), and I feel like we overall did a pretty great job of striking that delicate balance. And emotionally, as someone for whom ‘athlete’ is a main identity, it was terrifying for me to have my former goals feel completely inaccessible, and for my body and brain to feel so different in ways that I didn’t understand and often couldn’t predict. Justin added a daily journal prompt into TrueCoach: “what were some WINS you experienced today?”, which served not only as a daily reminder that positive and negative could coexist, but as another line of communication with someone I trusted. I’ve received a lot of skepticism this year, and Justin was one of the only people who consistently accepted my perception of myself at face value; I always felt safe with him because he never tried to “talk me out of” my lived experiences. However I showed up on a given day was always okay. He’s seen me through a lot these past five years, but never have I been more grateful for him than in 2023. 💙
👯♀️ One of my best friends Anisha, is a pediatric ER physician and is unfailingly COVID-conscious, honestly even more so than I am. She’s been the person I’ve been able to swap studies with (“Did you see this one about creatine?” “No, did you see this one about co-Q-10?”) as well as day-to-day observations and frustrations (and Garmin screenshots 😂). Along with her friendship, having another medical provider to exchange ideas with — especially on a condition that’s still very new and not well-understood — was absolutely invaluable. One of Anisha’s love languages is evidence-based information 😂 and her sending me links to new PASC studies she came across made me feel like she cared about my progress and was trying to ‘help me help myself’. She’s another of the few people who has always accepted my experience as my truth without question, even if we didn’t understand why things were a certain way. I never had to pretend to feel anything other than my reality. 💙
🗣 My therapist, Erica at Room to Breathe (Chicago-based, but serving multiple states) was also an incredible resource. I hadn’t been to therapy for any extended length of time before, but when the “seasonal slide” started, I realized I needed some more support. I went into it hoping for some ‘concrete’ tools (how to pace, etc.) to help me cope with the uncertainty and the losses — instead, what I got first was permission to be angry about the uncertainty and the losses. To have somebody else say “no, this legitimately sucks and you don’t have to be OK with it” was a surprisingly big help. Beyond that, getting more comfortable asking for help was another focus — I’m accustomed to doing everything for myself, partly because I generally have to (#single 🙋♀️), and partly because I don’t want to “bother anyone” by asking for assistance. One of the biggest mindset shifts I got from Erica was that I don’t need to be worried about someone “not liking me anymore” if I ask for help that they secretly don’t want to give — because if someone doesn’t want to help me with something, the onus is actually on them to recognize their own boundaries and say no. (🤯) I also appreciated that she knew when I was ready to ‘graduate’ from therapy — it’s still occasionally hard for me to see the forest through the trees, but Erica could see the bigger picture of how much I had worked through regarding the emotions around this diagnosis, and she understood when our main objective had been accomplished. I admit that I miss her a little 😂 but I know she’s there if I get knocked for any future curve balls down the line.
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Okay, now the FAQ stuff (that I assume you want if you’ve read this far!)
Where do I find a functional neurologist?
Go to ACFN.org/directory and search for providers with the FABBIR designation; this is what ensures they’re specially certified in brain injury and rehabilitation.
What supplements did you take?
(I am not your healthcare provider and this is not medical advice.)
For my (presumed) low cortisol levels and fatigue, I took three adaptogens — rhodiola, ashwagandha, and holy basil — which all helped promptly and significantly. I briefly tried a fourth adaptogen, eleuthero, and didn’t find that one to be effective for me one way or the other. There are others (maca, ginseng, etc.) that I haven’t personally tried.
I also took a large amount of fish oil (roughly 3g/day — I was told to aim for a minimum of 1200mg of EPA and a minimum of 900mg of DHA). This was intended to target any residual neuroinflammation.
I took daily creatine as well, which I had been taking on training days even before getting sick, but ramped up to EVERY day after having COVID. Creatine is best known for its benefits to muscle health, but a lot of recent studies have shown benefits to brain health as well; there have actually been specific studies demonstrating both low creatine levels in the muscle/brain tissue of PASC patients AND symptomatic improvement when PASC patients took daily creatine. Pretty compelling!
With my autumn relapse, I belatedly increased my Vitamin D from 2000 IU to 6000 IU, and added 100mg of K2 for improved absorption (I did not know before this year that the general rule of thumb is to take 100mg of K2 for every 5000 IU of VitD). Increasing the D MAY have been one of the things that helped me “suddenly” feel so much better as of December 11th (roughly 2 weeks after the dose increase), but I can’t prove this. Maybe I’ll have the opportunity to test it again next fall (but I kinda hope not 😂).
My only two other supplements (that I was already taking, but continued during Long COVID), were zinc (because it can be depleted by the birth control pill) and magnesium glycinate (for sleep and muscle relaxation/recovery). However, I’m currently adding co-Q-10 and alpha-lipoid acid based on the results of this study from 2022, since it has now been confirmed that mitochondrial dysfunction is a key factor in the fatigue and post-exertional malaise and that antioxidants may help significantly. It’s only been a few days, but I feel as though I’m noticing significant improvement, and really wish I had tried this sooner! N-acetylcysteine is another antioxidant supplement that many Long COVID clinics recommend — and although I haven’t tried them myself, both low-dose naltrexone and nicotine patches (yep) have also been anecdotally reported to be very effective in a sizable percentage of patients.
Do you think you would have naturally gotten better in your own time even without neuro rehab?
I’ve asked myself this question a lot. I’m sure I would have IMPROVED — but no, I don’t think I would have reached the point of recovery that I have.
As mentioned in the post, COVID didn’t “cause” the underlying compensations; it just unmasked them // caused them to become pathologic. My autonomic nervous system had ALWAYS been a little slow to raise my BP upon standing; I had NEVER had excellent/symmetric visual function; I had occasionally experienced exercise-induced anaphylaxis (under different conditions) as early as age 22. Given enough time, my brain might have re-learned to compensate to some degree, but the UNDERLYING neurological inefficiencies wouldn’t have been fixed without intervention.
Also as mentioned in the post, there were several magical days where I went into the gym following a neuro session and realized I could suddenly SEE in a way I hadn’t been able to before. 🤯 I’ve never experienced anything like that. Being aware of the bar during pull-ups, or able to hold a visual spot across the room while snatching, isn’t a skill I had ever realized I was supposed to have, because I had never been ABLE to do those things. I don’t think I would have ever accessed those abilities if someone ELSE hadn’t recognized that I was lacking them.
Having said all of that — my understanding is also that my particular rehab program pulled together resources that COULD probably have been found similarly in other places, specifically vision therapy (my eye exercises) and vestibular PT (the tilt-table work). In other words, my way isn’t the only way. I ended up with one-stop shopping, which was convenient, but the help that I got might have been patched together via other providers, too, assuming a patient could accurately identify their own issues (which I could not, at least not in the beginning) and knew where to look for help.
Were you vaccinated before you got Long COVID?
(For some reason this question is common.) Yes, I’m a healthcare provider, so I was among the very first to be vaccinated, and had had a total of five COVID vaccines (all Moderna mRNA) prior to ever getting sick. I’m convinced that played a massive role in why it wasn’t WORSE for me. My acute illness was extremely mild and my Long COVID symptoms were confined to dysautonomia and some (comparatively) mild fatigue/PEM. I haven’t dealt with the crippling fatigue, mast cell activation syndrome, breathing problems, viral persistence, or other systemic changes that so many others have (and we know that there is a correlation between acute illness severity and Long COVID severity). There are an estimated 67 million people around the world with Long COVID, and the patients who are most severely affected are, in general, those who were infected in 2020 before vaccines were available. I’m grateful for the “head start” that I had in terms of my vaccinations, because I believe it protected me. I would absolutely do it all over again the same way.
Have you been vaccinated since having Long COVID?
Yes, I had a booster (Novavax) in mid-October 2023. (I chose Novavax only because there was some evidence that the adjuvant may work in such a way as to increase our immunity to future variants.) People’s mileage seems to vary with boosters; there’s a sizable portion of the Long COVID community who feels BETTER for a while after getting them, as though their immune system is responding helpfully to their underlying condition as well as to the booster. I was not in that category (which is one of the reasons I feel fairly certain I don’t have viral persistence), but I didn’t feel WORSE, either. As usual, my only symptom was a sore arm, and even that was minimal; I had no fever or systemic symptoms at all. I did notice a bit of a racing heart and feeling more “neuro-ish” than usual during a conditioning workout the next day, but that had resolved by the next workout. I was already in a “seasonal slide” at the point of getting the booster — my energy declined from the beginning of September through early December until a “switch flipped” just before the solstice — but I didn’t perceive that the booster contributed to this at all.
Is there anything you would do differently?
The biggest thing is, if you test positive for COVID, please REST until your test turns negative. There is a correlation between PASC and the inability to rest while positive (this is one of the reasons it’s often seen among lower socioeconomic groups and frontline workers who have limited sick days). I felt so good that I didn’t feel like I NEEDED to rest, but, real talk: that day-seven squat session still haunts me. 🤷♀️ I’ll never know whether that was a factor, but if I had it to do over again, I would have removed two large stressors: the drive back to NC on day 6 and the workout on day 7.
Beyond that, though, I got into treatment with the right person just about as fast as humanly possible, so I don’t think I’d change anything other than be a little faster on the uptake when it came to figuring out the significance of certain symptoms. Twenty years from now, we’ll have a roadmap for this condition, maybe sooner — but right now we don’t; everyone is affected differently, research is lagging, and the net effect is that there’s very little guidance for either patients OR healthcare professionals. Given that I was at the crest of the wave, I did the best I could and I have very few regrets.
What happens if you get COVID again?
I think you mean WHEN I get COVID again; all of us are going to encounter this virus more than once. The answer is: nobody knows. Some long-haulers get BETTER after a repeat infection, especially those who are more severely affected. Based on the trends I’ve seen in recovery groups and my limited ability to guess, I don’t think I’d be one of those, especially since I didn’t feel better after my booster. On the positive side, Dr. Gabella believes that my brain is far more “bulletproof” than it was before thanks to all this work, and that I wouldn’t experience the same symptoms a second time… but COVID can obviously do a whole lot more than what it did to me during this go-round (blood clots, mast cell activation syndrome, etc.), and I’d rather not test the theory until I have to. 🥴 In the meantime, I’ll continue getting boosters, will continue masking in grocery stores and on public transit, and will try to delay the inevitable for as long as possible. I hope you do the same.
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(I feel like I should introduce some kind of Easter egg for anyone who reads all the way to the end. Or… maybe I just owe you a coffee? 😘)