You might be wondering why this site has slowed down over the past six months. Here's why.
I've had covid twice, once in June 2023 and once in November 2023, despite being up to date with my vaccinations. To be blunt, it has ruined my life.
I've never been the fittest person and I'll admit to that. But I wasn't unfit either. I used to fence regularly and go biking when it was warm out. In the summer of 2023, I was biking for an hour or so at a time without any problem. After the first time I had covid, I completely lost the ability to exercise at all. I'd become desperately out of breath after only 5 or so minutes and couldn't manage to go longer than 10 minutes at a time. When I'd get back from trying, I'd find myself lying down, struggling to breathe, and suffering intense muscle pain. It would take days to fully recover from any attempt. Even walking around grew difficult and painful, feeling like I'd been walking for hours after only a few minutes. My lungs became very sensitive. I'd have frequent and painful coughing fits if I inhaled any smoke, on days with high air pollution, when I walked around too much, or sometimes just from laughing too hard. I was noticeable more tired and fatigued. I spent more time lying in bed doing nothing but waiting for my body to feel better.
Despite that, I began my masters degree in September 2023 and, while I had to refrain from any kind of exercise, I was able to keep up.
I caught covid again in November 2023. The infection came with a fatigue so intense that I struggle to properly describe it. I was bedridden for two weeks while sick. After that, everything went to hell. I limped through the end of the semester, botching an exam, an assignment, and missing a deadline on marking for my TA duties. I told myself that it was just a rough end to the semester and I'd feel better after winter break. The full scope of what was now wrong with my body didn't become apparent until later.
My mom said recently that she should've known something was wrong during Christmas 2023. Normally, I help with cooking when I visit my family for the holidays. That year, I found myself helping for just a few minutes and then needing to sit down and catch my breath.
The winter 2024 semester was a complete disaster on every level. I started off telling myself it was a bad day. Then a bad week. Then a bad month. I stumbled from obligation to obligation, badly out of breath the instant I stood upright. I slept for 12 or more hours a day, struggling to get out of bed at all in the morning. I couldn't concentrate on anything at all. My brain would shut down within minutes. It felt like I was constantly at the tail end of an ill advised all-nighter, even when I'd slept all night long. I had constant intense muscle pains. I was maybe managing a few minutes of useful tasks each day followed by lying down for hours trying to recover. I started to have frequent shortness of breath attacks where it would feel like my lungs weren't working. I would go out to run my tutorials, stumble back home, and collapse for the rest of the day. I was completely unable to keep up with the tasks of a grad student. I was exhausted, unable to think, and in incredible pain.
Even taking care of my basic needs became too much. I love to cook and used to amaze people with my dedication to producing complicated dishes multiple times a week. That stopped very quickly, my diet collapsing as even going to the grocery store became too taxing. Standing up to cook became too much and I ate less food and less healthily. I couldn't keep up with cleaning the apartment, cleaning my room, laundry, or sometimes basic hygiene.
In March, I had a shortness of breath attack so bad that I would up in hospital. They ran a bunch of tests and told me they weren't sure what was wrong with me, but I should start looking into long covid. I took the rest of the semester off, failing a class, leaving the courses I was TAing in the lurch, and missing out on several research deadlines I'd planned to hit. I had to resign from the graduate student council.
I moved back in with my parents for two months while I tried to recover. The first two months were awful. My body took a long time to be able to do anything more than lie in bed all day. I was in constant pain, struggling to breathe, and sometimes I could feel my heart behave strangely. If my parents hadn't been taking care of me, I don't know what I would've done.
Once I stopped trying to push past my limits to keep up with everything, it became a lot clearer what my limits were. Seemingly the hardest part for other people to understand is that all my symptoms vary strongly with how much I try to do. If I lie in bed all day, I can seem perfectly normal for brief periods. But the longer I do so, the worse the symptoms will get until I'm again bedridden. Everything I do is a complex balance of how much I can do versus what needs to get done. I can barely take care of myself, struggling to maintain enough energy to even just keep myself fed, clean, and safe.
Some examples of my limits are:
- I can barely walk, feeling intense pain and breathing hard after only a couple of minutes.
- I need a lot of sleep, frequently napping through the middle of the day
- I can't concentrate on anything for very long. I find I get about a half hour of useful hard brain work per day. This includes anything from coding to even just holding complicated conversations or playing a board game
- I have a lot of random muscle aches, particularly in my legs
- I have occasional shortness of breath attacks, sometimes lasting hours
- My immune system is significantly weaker. Vaccines take me out for days, colds leave me bedridden for weaks, and I live in eternal fear of catching covid again
- I have to dedicate most of my day to lying down and not doing anything requiring any energy to remain functional
- If I do overdo it, or sometimes for seemingly no reason, I crash hard, at which point I become extremely fatigued and bedridden. I've only been able to navigate these by retreating to my parent's house to be looked after.
- My circulation is noticeably poorer. I struggle a lot with temperature extremes, having crashed both from heat waves and cold waves. My body distributes temperature poorly, frequently simultaneously too cold in one area and too hot in another
- I feel less intelligent than I was. My brain feels slower, my memory a little poorer
Treatment options have been slim. My doctor sent me for a number of tests on my heart, lungs, and blood, all of which have come back negative for any specific condition. He prescribed me Duloxetine for the muscle pains, which has helped a lot with the pains but comes with side effects of increasing my fatigue. While this increases my quality of life, it does nothing for my ability to do things. I applied for a drug trial for long covid, but they were already out of participant slots. Apart from that, my only option seems to be to wait and see if my body will recover on its own. It is hard to tell if I'm trending upwards or simply better at pacing myself. As I had several nasty crashes this winter, likely to do with the cold, I suspect it's the latter.
I've had to undertake a number of adaptations. I order my groceries online. I use a wheelchair, pushed by a friend or family member, whenever I leave my apartment. I don't leave my apartment very often, though. I struggle to keep things clean, frequently needing help from my family with more complicated chores like laundry. My diet has changed dramatically. Where once I made sure to cook one new recipe every week, now I struggle to cook even the most familiar recipes. I've needed a haircut for months but been unable to walk out to get one. Even taking the trash out would leave me winded for days. I don't exercise or go to visit friends. I struggle to even read or watch tv if the plot is slightly complicated. I've been on long term leave from grad school since May 2023. I'm unsure when, if ever, I will return.
I'm sad, I'm tired, and I'm angry. If I could offer any advice, it would be this: don't catch covid. You don't want any part of this.