Living with Long COVID often feels like being in a relationship with your own body, but not the kind you’d hope for. It’s more like a turbulent relationship, where one minute, everything’s fine, and the next, your body’s throwing a tantrum, leaving you questioning everything you thought you knew about how much you can handle. Enter Post-Exertional Malaise (PEM)—that uninvited guest who arrives right after you’ve tried to do something normal and makes you regret ever thinking you could be productive.
The love-hate relationship I have with PEM is complicated, to say the least. Some days I think I can get away with a bit of light activity, only for my body to turn around and remind me that I haven’t earned the right to feel “normal” yet. And it’s not even the same every day. One minute, I’m out for a brief walk and thinking life’s looking up. The next, I’m flat on my back, wishing I’d stayed in the sofa like my body was practically begging me to do.
The Unpredictable Nature of PEM
The unpredictability of PEM is one of the hardest things to deal with. It’s like playing a game of Russian roulette, but instead of a bullet, you get an instant hit of exhaustion, brain fog, and muscle pain. And there’s no way to know when it’s going to hit, or how bad it’s going to be.
The other day, I thought I’d get a jump on the day by getting some housework done. Nothing major, just a couple of loads of laundry and a quick tidy up. I was feeling mildly optimistic, so I decided to throw in a little bonus task—a bit of hoovering. Seems harmless, right? Well, about fifteen minutes later, I was horizontal on the couch, unable to move or get any more done. My body had spoken. Loud and clear. “No more for today.”
I thought I could handle a small task, but PEM loves to remind me just how far I can push it before it kicks in. Some days, it feels like my energy is like a glass of water that’s slowly running out—and no matter how careful I am with it, I always end up with a dry glass sooner than expected.
Mild, Moderate, or Severe: How PEM Varies
PEM isn’t the same for everyone, and it’s definitely not the same from day to day. For some, mild Long COVID means PEM is a nuisance, but manageable. For others, it can leave you bedridden for days or weeks and more. What I’ve learned is that my body doesn’t really follow a set rulebook, and sometimes I’m caught off guard by the severity.
I remember a time when I thought I could “push through” a little bit of activity. It was a Sunday afternoon, and I had plans to go to the local park with my daughter. It was a quick trip—just a short walk and a bit of fresh air. We sat on a bench, shared an ice cream, and I felt okay. But by the time we got home, I was done. And I’m talking about completely done. All I could do was lie on the bed and go to sleep. It felt like I’d run a marathon without the benefit of actually moving very much at all.
That’s the thing with PEM—it doesn’t really make sense. One day, I can do something simple like emptying the dishwasher, and the next, I’m wiped out after just walking around the house for an hour. It’s never predictable, and that’s what makes it so frustrating.
Managing PEM: It’s a Mental Game
If there’s one thing I’ve learned from dealing with PEM, it’s that managing it is as much mental as it is physical. It’s not just about resting and pacing—though those are crucial—it’s about constantly weighing the risks of doing something against how much it will cost me later. And sometimes, I get it wrong. Sometimes, I do something and immediately feel the consequences. But that’s okay. We’re all just doing the best we can, right?
There’s a strange feeling of guilt that comes with needing to rest. After all, I’m not technically sick, but PEM feels like it’s teaching me how to listen to my body in a way I didn’t before. I’ve had to learn the art of pacing, something I never thought I’d need to do in my life. I used to be a “go, go, go” person, but now, even the smallest task has to be carefully considered.
The Bottom Line: Learning to Be Kind to Myself
One of the hardest things about living with PEM is the mental strain it adds to an already challenging experience. I’ve had to unlearn the “no pain, no gain” mentality that so many of us are raised with. The truth is, Long COVID isn’t a challenge you “power through”—it’s something that requires patience, compassion, and self-awareness.
There are days when I feel like I’ve let myself down because I couldn’t do something “normal.” But I’m learning to be kind to myself, to accept that the small victories are just as important as the big ones. Taking a walk with my daughter, even if I have to rest for hours after, is still a win. Having a moment of connection, even if I can’t stay out for long, is still a triumph.
So the next time PEM strikes, I’m going to try not to be hard on myself. I’m going to recognise that my body is just doing its best, and maybe—just maybe—I’ll be able to laugh at the ridiculousness of it all, knowing I gave it a good go.
(This article was written last year)
Long Covid Journey 