On enduring
Some thoughts from a (former?) endurance athlete on living with Long Covid
I swam laps in my local YMCA pool for the first time since Covid last Monday.
This probably sounds like a major milestone or victory.
On some level, it is.
But this isn’t a feel-good “look how much better I am!” post. It’s a bit more complicated than that.
Before Long Covid (LC), I was an endurance athlete. I competed in triathlons (mostly sprint, though I was working toward an Olympic distance), hiked the Appalachian Trail, ran in snowshoe races, completed the Trek Across Maine, and rode in two 100-mile bike rides/races.
This was me:
I used to train roughly six days a week. My favorite cycling distance was 30-35 miles.
LC took all of that from me, thanks to two factors:
Serious exertion is SO MUCH harder now than it used to be. Anecdotally, I would say 3-4 times harder, so that things I used to do as a warm-up are now the main event. This isn’t due to loss of conditioning. My perceived exertion is way off the charts for things I used to love doing.
Post-exertional malaise (PEM). A workout being extremely hard has never been a deterrent for me. But I learned early on with LC that exercise had far deeper consequences. Not only was it much harder while I did it, but I have intense fatigue after I work out. The harder the workout, the longer the fatigue lasts. A not too bad thing can be one day of PEM. A more intense workout can be 3-7 days of it. And PEM is rough. It’s fatigue on steroids: I wake up feeling like I haven’t slept. I get extreme muscle soreness and pain. I often can barely drag myself out of bed for very basic things. My brain fog and cognitive functions tend to nosedive as long as the fatigue lasts.
First suggestion: Get active
Much of the history of LC has been doctors advising patients like me that we needed to push our bodies back into exercise.
When I was first sick with Covid in March of 2020, it was in the days when Covid was believed to be most like pneumonia. There was no knowledge of the multi-system impacts, long-term effects…heck, we were told not to use even simple NSAIDs. At the time, the protocol was to call in to a hotline to report your symptoms. You didn’t get tested because there weren’t tests, so they evaluated your self-reported symptoms and they made your diagnosis off of that, and used your subsequent calls in to determine if you were high-risk or suffering enough to warrant hospitalization.
My first faulty advice around Covid came from that hotline. About a week after my symptoms began, when I was starting to feel a bit better, the hotline advised me to return to my normal exercise routine as quickly as I could. Since the risks at that time seemed to be pneumonia-like, the thinking was that more movement would help get stuff moving in my lungs to avoid hospitalization.
My attempts to get back to working out made me feel like I was dying. I tried one 3-mile run and one 10-mile bike ride, spread out a few days. Each of these would normally have taken me under 30 minutes. On both, my heart pounded, I couldn’t get enough air, and I legit though I was going to have a stroke or a heart attack. The first was followed by days of PEM; the second was followed by weeks of it.
That experience prompted me to seek a referral to a cardiologist, because things felt WRONG in my body. So in late summer of 2020, before we had a LC clinic, I saw a fairly supportive cardiologist who acknowledged that LC was starting to be a thing. My big concern at the time was that we were starting to learn about all the lung, heart, and clotting issues and I was very anxious to try working out again.
The cardiologist took my concerns seriously and did a full evaluation, then recommended a full stress test (you know, where they cover you in electrodes, have you breathe through a mask, put you on a treadmill and gradually make it harder and harder).
He said he couldn’t see anything wrong with me and that I did okay, but seemed like I’d probably lost conditioning and suggested I add an iron supplement since I seemed borderline anemic. He encouraged me to get back to my previous levels of activity.
Two days later, I called his office to report extreme fatigue and the worst vertigo I’ve ever had. I was assured that was unrelated. It was a reassurance I ignored—I could tell they were related. There was no science to support me, but I did not get back to previous levels of activity, because that was impossible. One workout knocked me on my ass for a week; there was no way I could do six workouts in one week. I knew something was wrong, but since the specialist had told me there wasn’t, I didn’t know where else to go.
Second suggestion: Viral persistence (still get active)
In 2021, I got in to the local LC clinic that our health system had formed. It was fairly validating, but again, I was given advice to get back to exercising. This was at least based on a theory about LC, though: viral persistence.
With viral persistence, the idea is that your body can’t fully “clear” the virus, that it sort of shacks up in organ systems or muscles and builds a fortress, and the lingering symptoms are from that.
Through this school of thinking, I was advised to start reintroducing progressively harder workouts. The theory was that as I worked my muscles and pushed my system, it would help force out that lingering virus. The PEM was interpreted to be a result of this re-surfacing of virus that, once cleared away, would gradually fade away and get me “healthy.”
The clinic had a PT on-staff and he evaluated my core strength and fitness. He made me feel like it was all in my head and suggested I try a couch to 5k program.
I did try that program, over a year later. I could not get past week two—the strain on my body during the workout was awful but the PEM was unsustainable.
I stuck with 30-second run/walk intervals to complete a Turkey Trot 5k in 2022 and was so miserable from it that I shelved the idea of getting back to running.
Coming into 2024, because my body’s baseline has been so much better, I decided that this year would be the year of truly getting back to exercising. Certainly not as intensely as before, but I missed cycling more than anything.
Cycling was my first real sport, and in the nearly 4 years of LC, I had ridden on the road 3 times (each was a Herculean effort), but I’d had more success on my indoor trainer. I was thinking I could start doing more trainer rides until I rebuilt some conditioning to try the road again.
And, ever so quietly, I started planning a short thru-hike in June. I had started researching the trail and resupply points, considering what gear I’d need to swap out, and lining up support from my partner and a couple close friends who could send me packages or help get me to/from the trail.
The latest suggestion: Don’t get active
All of that came crashing down with the publication of a groundbreaking study out of the Netherlands, published in January 2024 in Nature Communications, titled Muscle abnormalities worsen after post-exertional malaise in long COVID.
The study compared 25 LC patients with a similar cohort of folks who’d gotten Covid but fully recovered. All participants worked out for 10-15 minutes on a stationary bike, gradually reaching their maximum aerobic capacity.
The researches took blood draws at several points. They also collected a muscle biopsy from the participants’ thighs before the exercise test and again one day after.
The findings are both validating and demoralizing for those of us with LC. Here’s a quick summary of my main takeaways:
Muscle mitochondria aren’t functioning properly, so LC muscles are starved for energy. Metabolites in the blood that help with energy production are severely reduced in LC patients, so we start with way less energy. And our muscles start producing lactate, a “last resort” fuel during exercise, much sooner than healthy individuals.
LC muscles themselves are compromised: we have more atrophy/fiber shrinking than healthy people.
There’s also some signs of a very disturbed immune response: we have high volumes (what the study authors call “immense amounts”) of necrosis, or cell death. Necrosis happens when immune cells infiltrate and degrade muscle tissue. They found evidence that T cells are infiltrating the muscles—something rarely seen in healthy patients.
LC is known as causing some unusual blood clotting behavior, and this study found another facet to that: LC muscles show signs of microclots within muscles. These could be part of what’s causing the mitochondrial dysfunction.
The study also found no evidence of viral persistence. While they did find some evidence of SARS-CoV-2 proteins, there was no significant difference in these levels between the LC cohort and the fully-recovered cohort.
All of this was pretty damning already, but it wasn’t until I read the excellent NPR article summarizing it that I could figure out what it “meant” for me. That article quotes David Putrino, director of rehabilitation innovation for Mount Sinai Health System:
"As opposed to what's been sold to patients over the last few decades, that symptoms such as extreme fatigue and exertional malaise are psychological or physical conditioning issues," he says. "Physical exertion does harm to the bodies of people with these illnesses."
His general guidance is to avoid exercise if you have post-exertional malaise and instead practice "energy conservation."
Feelings
On the one hand, this study is hugely validating that there are distinct pathophysiological reasons why I and so many other LC patients struggle with physical activity and PEM. It makes clear that it’s not all in our heads, which is welcome news after we’ve been collectively gaslit by a lot of doctors. Understanding these mechanisms means future studies can start to explore why this seems to happen and/or test treatments that might target some of these things (like the microclotting).
But quite honestly, when I got to Putrino’s comments about avoiding exercise and practicing energy conservation, I felt like I’d been punched in the throat.
I couldn’t breathe and it felt, briefly, as if time itself had stopped.
Avoid exercise.
No more holding out hope that I could return to triathlons in a diminished capacity.
No more trying to get back on the bike.
Worst of all: no more planning that thru-hike.
All of the grief I’d felt I’d managed about losing those athlete identities welled up and threatened to overwhelm me.
Now, you might be thinking what my partner explicitly asked me: “So what if that’s what this guy says? If you want to do it, you could still try.”
I could, for sure.
And when there was still a chance that it would get better, I would have.
But for me, having science actually support my lived experience of things being SO HARD and feeling like total shit for days afterward…and then seeing clear advice that pushing myself to do this isn’t a good idea…
I have felt like this was the clearest message that I had to let go of these hopes, these identities, for forever.
So…wtf does this have to do with swimming?
You’ve probably forgotten this post started by talking about swimming. But remember that? It did. I got in the pool and swam some laps last Monday.
I wore some new pretty prescription goggles I bought to encourage myself to go, and the sugar skull swim cap I always wore for triathlons:
And you’d be right to be asking yourself: “how are these related?” or “I thought you just said you were giving up on these things?”
But they are deeply related.
After I cried and raged for a couple days and was generally a horror to be around, I thought about this study some more.
I know that, as a (former?) endurance athlete, I have a tendency to want to push myself beyond what’s capable. Part of me wanted to push forward with all my 2024 goals because I do now, at least, have a much clearer understanding of what I’m up against. It’s a daunting challenge, and I like challenges.
But if I’ve learned anything about living in a LC body, it’s that LC bodies don’t respond well to stress.
Instead I found myself thinking.
I’ve had some success with hiking. I can’t do long/intense hikes the way I used to without days of PEM afterward, but I hike my dog the majority of days for 30-60 minutes, and we also do neighborhood strolls. In the beginning, those things were taxing for my body, but over time I have been able to get my body to a place where it seems to look forward to the activity as much as I do.
I am extremely lucky in this regard. Many LC patients can’t do that.
Why has hiking worked for me when other things generally haven’t?
For me and my body, I think it’s about intensity and heart rate.
Cycling on the road felt like death because there are hills and ever-changing terrain. Cycling on my indoor trainer is more manageable because I can control all of those variables, monitor my heart rate, and make sure I’m not over-exerting myself.
I never used heart rate zone training much as a triathlete because I liked pushing myself hard, that was the point. But the hikes that have no bad repercussions for me? I never go above Heart Rate Zone 3. My First Day Hike in January was much more strenuous, and I paid for that:
Indoor cycling is similar: if I’m on a trainer, I check my heart rate about once every 1-2 minutes and I adjust my cadence or other factors to keep my heart rate low. That seems to be the easiest way to avoid hardcore PEM.
This got me thinking: run-walk intervals probably felt way different because they keep my heart rate lower and hugely reduce muscle costs, just like cycling on the trainer was a better substitute for road cycling.
What other activities have I done where my heart rate naturally stays low?
A very small voice inside me said: swimming.
I tried to ignore it.
I don’t like swimming.
Out of all my sports, it was my least favorite. It didn’t give me the adrenaline hits of the others, it required going to a pool and dealing with people and chlorine, and I have always been bad at it. (Not bad in terms of drowning; I’m a totally competent swimmer. Bad in terms of swimming economically/quickly for the kinds of distances you need to do in a triathlon.)
But swimming is an activity where I can easily control my exertion levels. I can slow my strokes down, kick less, even switch to a less intensive stroke if I need to.
I’ve heard that other LC patients have had good luck with swimming.
And it could be a mildly social thing for me—my former swim coach Andrea has also had some major physical setbacks (thankfully not LC) and has been trying to get back in the pool, so I knew I could have an accountability buddy if I wanted one.
But can you make yourself love a sport you have never loved, Sass?
No, probably not.
But what if I could hit flow state working out again? That was the one thing about swimming laps I used to love: when I had good form, my brain would turn off, and I’d just stick to the rhythm of swimming, and for however long I was in the pool, I didn’t think about the rest of the world, I just swam.
I chewed on this last point, especially as I was writing about flow state:
Maybe specific activity goals were just the worst possible choice for 2024.
Maybe flow state is a better goal.
And with that in mind, I texted Andrea, who checked with the current aquatics director to try to find a quiet time for us to head to the pool.
We met up Monday around 1pm.
How it went
I’m not going to sugarcoat it. It was rough.
The first few laps my heart rate was soaring, and I felt like I’d completely forgotten how to breathe while I swam.
But after a long break from swimming, neither of those was shocking, honestly.
I paused at the wall and chatted with Andrea (who was having her own issues), until we both got our heart rates lowered enough that we felt we could continue.
It was clear that I had lost conditioning for swimming. Muscles in my neck, shoulders, and back were already grumpy after just a few lengths. Not an overexerted grumpy, just a “wow, you haven’t made me do this in 4 years and it feels weird” grumpy.
My next lap still wasn’t great, so I paused at the wall while Andrea kept swimming and gave myself a stern talking to.
“Sass, this is just like if you were swimming in a triathlon. You’re not out to win the swim; you’re out to have energy left at the end so you can bike and run. Except now it’s not biking and running, it’s having energy to do anything the rest of the day and tomorrow. Slow. It. Down.”
And I did.
And suddenly I was actually doing continuous laps.
I’m sure my form was awful. (I intentionally asked Andrea not to watch me even when she finished and I was still going. I know it’s bad. I don’t want to know how bad.)
It was very slow.
I stopped kicking entirely to conserve energy (not unlike my tri races). And I focused on the one piece of my form that wasn’t impacted by loss of muscle toning: my head positioning when I rolled to breathe. It’s one of the simpler aspects of the form for me, and it gave me something to focus on.
I didn’t swim for long. I couldn’t, given how weak the necessary muscles were.
But right at the end, there were a couple lengths of the pool where I let go of the self-doubt about my form, I ignored the muscles that I could feel were already weakening, and I just swam. And for those few brief lengths, I did touch flow state again.
The rest of the day was a wash.
I was so tired.
And I had PEM for about two days afterward. But it was all manageable. I didn’t feel like death. My shoulders are sore and I tweaked something in my neck, though the neck was bothering me before the swim, so I don’t blame the swimming for it.
But that initial experience makes me think this may be a sport I could come back to, because it’s one where I’ve always been moderate in my approach, and it did feel so good to feel my body moving in a familiar way that wasn’t walking.
Looking forward
So it was a bit of a win in testing the hypothesis that I can do activities if my heart rate doesn’t go off the charts.
But there is a much bigger win here.
I may not be an endurance athlete the way I once was. I don’t train six days a week. I can’t log big miles. I’m not fit or ripped or strong or even especially health, living in a chronically ill body now that I do.
But that little pool pep talk reminded me of something. Endurance is a mindset. Long before endurance entered my mind as a type of sport, I knew it by its common definition:
to endure: To carry on through, despite hardships; to undergo or suffer.
To endure, you must pace yourself and your energy, you must save more for later.
It used to be that I was saving more for the end of the race, to finish strong.
Now I’m saving more so that my body has something left over, so that I’m not totally debilitated and unable to work or function for days afterward.
But the process is actually quite similar.
Living in a LC body IS an endurance sport.
It’s not one any of us chose.
It’s not glamorous or cool.
It doesn’t look impressive from the outside.
It most definitely doesn’t give you a rockin’ body.
There are no established training regimens or protocols.
No coaches will be there to help you through it.
And it’s maybe the least fun “sport” I could dream up.
But it is an endurance effort.
And Sassfras, my dear, you have spent your whole life training for endurance efforts.
Slow it down, save some for later, and enjoy this moment while you can. 💜