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2023-01-04 | #health #longcovid #disability
I want to provide an update on my [first longcovid post] after two years.
COVID-19 Stole My Body From Me
This series will be touching on several aspects of my life lately:
I originally intended to make this one single post, but I've been struggling with low energy and it took me a week and a half to produce the below. I figured it was better to release this part and stop worrying myself.
Throughout this series I will be using the **longcovid** and **CFS** terms fairly interchangeably. **Longcovid**, or *Post-Acute Sequelae of COVID-19* is the post-infection symptom set after one survives a COVID-19 infection. **Chronic Fatigue Syndrome** is another incredibly similar symptom set that often results from viral infections. There is incredible overlap and the particular specialist I'm seeing treats the two the same. I have not encountered enough information to draw a hard line between the two syndromes. In fact, as I enter more discussion about disability and post-viral symptoms, I see the "long-" naming applied to things like longpolio too. In short, at this time, my best understanding of the difference between **longcovid** and **CFS** is that with longcovid we can point specifically to a COVID-19 infection as the cause of our CFS.
Here's a quick rundown of my most common symptoms: post-exertional malaise, fatigue, joint pain, muscle pain, brain fog, difficulty with word recall. There's more, I'm just struggling to think of them at the moment.
Simply put: I am not working anymore. When I wrote the first post I was not working either, but just a couple months later I landed a Junior DevOps position at a large tech company. There are several factors that led to that position being incredibly stressful which caused me to quit.
My fatigue isn't just triggered by physical activity, no that would be too easy. I could plan around that. Emotional stress and extended mental effort can drag me down just as severely.
COVID-19 Stole My Body From Me
I think this is really hard for a lot of people to wrap their heads around. Being tired from physical exertion is something a lot of people can relate to. Perhaps even a sense of tiredness after a particularly long fight with a loved one or a breakup. But that is typically fleeting. What sets chronic fatigue apart is that rest _does not_ provide relief or energy. I remember when I was young my father could come home from work and sleep for a couple hours. It didn't make any sense to me because he was a software engineer. He had a desk job! He didn't move around a lot! Why was he so _tired?_ After college I worked at a small managed services provider where my position was 80% desk job and 20% field work. Sometimes the physical labor involved in the field work was really intense and it would tire me out, but I never got exhausted from the desk job side of it. I only began to understand my dad's exhaustion once I began getting exhausted from mental activities with longcovid. I know he had some ailments at that time, but I don't know what his current status is as I do not talk to the man at all (I don't know if I will make a post about that). Given that he was usually ready to go again after just a couple hours of napping, I don't think he was dealing with the same type of fatigue that I am, but there was certainly something going on with him at that time. Anyway, the point I am trying to illustrate is that you just don't understand how exhausting mental exertion can be unless you suffer from something extraordinary I think.
I was excited about the job. DevOps felt like it was going to be similar to much of my previous desk job experience. And at first it was actually fun! They hired me as a junior so I was learning a lot on the job which was really great. Until they just kept me running the same tasks over and over again because the mentor assigned to me didn't actually know how to teach. There was also no one else who could be assigned because the specific subteam I was hired to was him and me and one other guy who was maybe leaving, maybe not. I kept asking him where the documentation was for how they do things and it culminated one day in a verbal fight. His stance was that documentation is pointless. Mine was that I cannot do my job without documentation. I walked away from that fight very shaken and extremely worn out. I think I took the next day off. I was so fatigued from that, and that was when I realized I could no longer stay at this company.
There were other issues too, like being stuck on a computer that couldn't actually be used for my job, with IT refusing to budge on anything, and my manager dragging his feet for half a year to get me a MacBook that IT did not manage. I had some shadow IT solutions to the situation I was in, but by the time the MacBook arrived, I didn't even open it up. I quit two weeks later. Looking back, I think that nearly every interaction with that man caused major fatigue issues within the next 48 hours. I was often left on my own for weeks on end struggling to figure out how something worked because the script repository was a mess, there was no documentation of our internal tools, and my mentor seemed incapable of offering actual help. The stress was too much for my health, and it never let up. I had two meetings with my manager about the mentor, hoping to come to some kind of solution, but nothing changed. There was no point in having more meetings, or more fights, or even trying. I gave my two weeks notice. They wanted me to wrap up the work I had been doing and submit a report. I hadn't done any work. In eight whole months, they never gave me a proper assignment or task to complete. I was just left alone with the codebase to learn it with minimal direction or guidance. I made sure the exit interview focused entirely on my experiences on that team, as I'm certain I could have managed my fatigue better in a less stressful environment.
But that's it, I quit in February 2022 and haven't worked since. I did briefly apply and interview at a few places, but a couple turned out to be transphobic and the others just ghosted me entirely. Since then I've been trying to focus more on my health, which will be discussed in later entries in this series.
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