My experience with long covid
I know there’s much (much) bigger things going on in the world, that my reality is one of extreme privilege and my health situation is just a tiny speck of dust in the vast universe of human pain. I wrote a bit about my experience with Long Covid, if you care to read.
26 Feb 2022: It’s 2 months today that I tested positive for covid. I didn’t even have that bad a dose of it, no hospital, just felt like a normal cold with really bad night sweats for about a week, after which I felt mostly ok, ready to get on with my life.
Then life goes: “lol🤪”
A week later all the symptoms came back, along with a series of new ones and this awful full body exhaustion.
Most of my days since then have been some version of this photo: lying in bed with cats.
Some days I’m a little less exhausted and I’ll manage to sit in the garden for a bit. Some days I can barely stand upright by myself. I’ve reduced my work hours, and still most days I can’t work at all, and when I do, I work in bed.
I’ve been handed off to the Long Covid clinic where they had me do many tests and concluded nothing is “wrong” but that’s just what Long Covid (also called Post-Covid syndrome) is: symptoms that persist months after the acute infection and «cannot be explained by an alternative diagnosis.»
There’s no treatment plan, the main recommendations are borrowed from chronic fatigue management: “full rest” and “pacing” which is basically energy management: for example if I know I need to shower tomorrow, today I’m going to avoid doing much so I can charge up my energy; or if I need to make a phone call, I need to be sitting or lying down. It’s life altering and bothersome and frustrating. And that’s just dealing with my fatigue.
With a list of over 200 symptoms across 10 organ systems, each day is like a terrible roulette to see what’s gonna show up.
Most days I have debilitating brain fog (I forget words, lose my train of thought, find it hard to process things which means I can’t read books😒, my short term memory is very patchy), I have this full-body all-engulfing fatigue that is like nothing I’ve ever felt, my muscles hurt, my chest hurts, I get out of breath just trying to finish a sentence, my resting heart rate is ridiculously high (110bpm lying down), some days I have nausea, other days my taste disappears or I have blurry vision and see stars, in one moment I’ll be super cold and the next sweating, bad headaches, nerve pain, horrible heartburn and digestive problems and now my hair is also starting to fall. The surprises never end.
It’s hard to be dealing with something where no one knows exactly what’s at play. I admit I wasn’t very aware of that this could look like and I’ve been grateful for all the many many people who have been dealing with Long Covid for months/years and have shared experiences, information and tips online, because it makes me feel a bit less lost and isolated. (Some studies estimate 20–30%, others say over 50% of all the people diagnosed with covid will experience symptoms months after the acute infection).
I’m incredibly privileged and grateful that I live in a country that isn’t being invaded, I have a flexible job & workplace and a wonderful team and I get to work as little or as much as I can, I have a comfortable home to be recovering in, I have a steady mindfulness practice that has been fundamental in keeping me from spiralling, I’m under no financial stress, I have a partner that has taken on the entirety of our household needs on top of his full time (high pressure, long-hours) job, I don’t have kids to care for and I have pets that keep me joyful and a beautiful Portuguese winter where I can sit in the sun if I have the energy to brave the steps to the garden.
I also have the weird “advantage” of having already had to recover from brain surgery so this surrendering to my body isn’t new and I feel that makes me better equipped to deal with all these ways in which my body and brain are slower right now.
But my heart goes to the millions dealing with this in less fortunate conditions. I really feel like we’re not talking about Long Covid enough and it’s overwhelming to think of the numbers it has the potential to affect. And what is happening to all the “long haulers” and all the people with disabilities in Ukraine, with no physical energy, health or means to flee, shelter or protect themselves?💔
I know many places are lifting mask mandates and it feels like covid is over but the virus is no joke and if you’re thinking “I’ll just catch it and get it over with” – Don’t! It’s awful, don’t risk it.
Mind yourselves❤️
