Flexing My Way Through Long COVID
Flexing My Way Through Long COVID
Sort of a b-side to my Love Letter to Running
Back when I was still healthy, I sometimes contemplated what would happen if I could no longer do the activities I loved. What if I could no longer run or ski tour deep in the mountains? There’s always a risk of injury with high-output activities, and I already had an unstable neck from an old bike accident, so the notion always lurked that I shouldn’t take my lifestyle for granted.
At the time, my (mostly) strong, healthy self had reasoned that if something ever happened, I would have to be flexible and willing to explore my neglected sides. I could spend more time drawing and painting. I could start playing the piano again, and maybe finally write that novel that everyone jokes about writing, but most of us never do. This shifting of gears would take me back to my teenage self and follow a path I could have taken without thinking twice.
One of the hardest parts of envisioning such a life shift was the idea of losing my community, which probably wouldn’t follow me down this new path. The loss would be huge, but new endeavors might result in building new communities. Acknowledging that these other interests existed and that they could offer solace in a difficult time, relieved some guilt I felt for not making time for them in the present. They would be there for me when I needed them.
In the first year or so of the pandemic, some of these activities did have some opportunity to show themselves. I had several painting requests from family and friends that kept me busy, and when my neck injury flared up during this time, I doubled down on drawing. While my friends surfed, I was stretched out in Tofino with a drawing tablet, just letting myself get used to doodling again like I did when I was a kid.
There were also unexpected things that cropped up during this time. I developed an appreciation for computer games which I hadn’t given much thought to since the days of Commander Keen. It started with an afternoon of playing a sassy goose in the Untitled Goose Game in April 2020, and progressed to many late nights of Don’t Starve Together during peak pandemic. Finally, we downloaded the Viking survival game Valheim, which recreated the feeling of being deep in the mountains, and I spent hours building quaint cabins within the game. I didn’t realize how much creativity can be found in games.
Pandemic isolation and neck pain felt temporary though. During those early COVID years, I felt my community around me strongly. We were going through it together, and things would get better, which they did. Almost.
I got sick in July 2022, and have been dealing with long COVID ever since.
Adapting to chronic illness/injury has now become a real and all-consuming situation. Looking back, my past optimism on how I might adjust while facing injury felt far too simplistic. The real prospect of losing what I so deeply identify with is incredibly painful. Secondly, my backup plan didn’t work. While physical activity is a no-go with long COVID, mental and emotional strain is just as problematic. I would pick up a pencil to draw, and immediately feel a painful squeezing in my brain. I’d sit there staring at the lines swimming on the page with my head feeling like cement, needing to close my eyes. I’d try to think of things to draw or write but the creativity wasn’t there. The fog was too thick.
Computer games were difficult too. Survival games were replaced with cosy games like Stardew Valley, but I’ve learned the hard way that even Stardew has its limitations. I recently got sucked into a Junimo Kart challenge that triggered a fight-or-flight meltdown bad enough to send me on an inflammatory spiral. My long COVID friends, If you think fishing is bad, stay away from Junimo Kart.
So how do you switch gears when everything feels like a dull, throbbing pile of sludge filled with hidden mines for your dysautonomia? The best way I’ve found is having my interests become the act of doing what is good for me. I’m a big fan of mood lighting. My jams are the latest binaural beats. Meditation is pretty fun, especially on a nice beach in Tofino. I can’t tolerate warm baths anymore, so I enjoy cold ones. If you have the clarity and energy for rabbit holes, there’s a new world of things to discover. Breathwork, gut health, diet, genetics, research papers, anecdotal reports, Facebook groups, Reddit communities, Discords, supplement stacks, abandoning supplement stacks. Endless experimentation. Diet, fasting, new medications. New results. In a way, I’ve never had so many options for hobbies. It’s easy to go overboard with trying to heal yourself, but balance and slowness is key. Take one step at a time. Don’t overdo it. Be kind to yourself, and importantly: accept where you are, at least for now.
The severity of illness can vary widely with long COVID. The range of symptoms involved, and what it takes to manage them, means that many quietly disappear from their lives. The risk of losing your community is real. When I do show up, it can be hard to know how to connect. Group hangouts can be deeply FOMO-inducing, but it also makes me happy to hear about all the awesome things my friends are up to in their lives, and it’s a win that I’m present. We may not see each other as much, but when I’ve reached out in need of help - whether it’s a ride home from the hospital, or a delivery of ice cream and a catch-up, people have been there. I don’t think I could have done this alone. Having my partner who is willing to help read papers, discuss ideas, and generally believe in me, has been huge. I often feel pressure - like there’s an expectation that this shouldn’t be long-term, and that I’m disappointing everyone by not being better yet, but honestly, no one has placed that pressure on me except myself. (Side note: I’ve seen enough online to know that this is really lucky, and hasn’t been the case for everyone. It’s hard knowing how many people haven’t been believed or supported. This is one of many reasons why long COVID awareness is important.)
I have realized within my local community, how many others have gone through their own serious health problems. Some are still figuring them out, or are having to manage them, and some may be fully out the other side, but carry the impact of their experience. It is not just a community of fast-fit people who will drop you on a dime. If my specific problems ever feel unrelatable, I have a handful of people I know with long COVID and we can go to each other for support. The online world of people suffering from this illness can be a huge wealth of information and relatability. So in fact, my new interests have resulted in new communities, even if some never meet in real life. I’ve developed a much deeper appreciation for what an online community can offer.
In university I studied environmental resource management. We used to joke about the concepts of Hedging and Flexing, loosely applying them to daily life. Hedging would involve making hard decisions - giving up on best-case scenarios to prevent the worst-case outcome. Avoiding COVID-19 takes a lot of sacrifice. It is unfortunately nearly impossible to do so entirely. Maybe it would have been worse if I got it earlier. Maybe hedging wasn’t a total fail. I’m still willing to make sacrifices to limit exposure, as the fewer rounds with this beast the better. As for flexing, I take some comfort in finding ways to adapt and strive for the best-case outcome. Sometimes that involves calculated risks, but I tiptoe ahead cautiously. I celebrate the wins, learn from the mistakes, and always remain optimistic.
At this point, I am much better than I was. My blood flows. My brain is clearer. My lungs have shown significant recovery. I can go with friends to the north shore and submerge myself in the wonderfully cold river. I still malfunction in some scary ways. I still get frustrated easily by drawing, and I’m never going near Junimo Kart again. I don’t feel the creative juices quite enough to write that novel yet, but venturing into non-fiction feels like a start. If sharing my story can do even the tiniest thing to raise awareness so that long COVID is taken more seriously, it’s worth it.
