I am here copying a draft which doesn't include final changes. The name in my native language is written at the bottom. I don't know, how you see it.
Hi! I met Doddie in another community where he mentioned his struggle with long covid. He kindly referred me here if I wanted to find out more about his experience. I have this condition myself but I don't know anyone else IRL, so I often feel alone and misunderstood. I don't wish LC for anyone, but I must admit that I was kind of glad to have found someone else. Someone who understands.
Firstly, I want to say that I smiled when I saw this forum because I'm old school and I don't use social media. I prefer this kind of conversation because it feels more structured. I was quite active on forums in the early 2000's so it brings back memories.
However, I love how friendly this place actually is. It's rare to find a community where people don't argue (immaturely), judge or make fun of others.
Anyway, I would like to share a bit of my own experience and perhaps comment on some of the posts along the way. I apologise if I've misunderstood or overlooked anything important.
I tested positive for Covid in early February 2022 (Doddie, I miscalculated the year in the other thread). I contracted the virus (probably Omicron variant) at my workplace which still makes me a bit angry because the employers didn't really care about security measures. So several coworkers also got Covid, but I'm the only one to have longterm consequences. I didn't expect any serious consequences because I'm relatively young (36) and I took two vaccine shots before getting infected.
My symptoms were/are a bit (if not quite) different from Doddie's. It's interesting how different everyones journey is. I'll try to give a rough timeline of how the illness progressed.
Feb 22'First several days were just like a common flu and I felt fine afterwards. It went downward after about 10 days when I no longer tested positive on rapid test. I was tired like never before in my whole life. I felt dizzy and extremely weak. I was in bed most of the time because even sitting was tiring. My chest and muscles hurt. I coughed a lot. I had very short breath after climbing the stairs from first to second floor. I was sweating A LOT. I got a mild case of rash on my chest.
I gradually started some short distance walks but they gave me stabbing pain in my chest.
I tried working from home for a week (with laptop in bed) but then my employer said that it would be better if I went back on sick leave to fully recover ("full recovery" sounds a bit ironic now).
MarSometime in March I returned to work. It was hard but I somehow managed it - I work on computer and I was only employed for 30-hour week at the time. I was annoying coworkers with my persistent cough. It was gradually getting better. It never got like it was before but I was functioning. At that time cognitive symptoms like brain fog and lack of focus started to show.
AprI thought I was quite better. I don't remember having any pain.
May1st relapse, 2nd sick leave. Flu-like symptoms, painful chest, dizziness...
Aug3rd sick leave.
Sep4th sick leave.
Dec5th sick leave. It was worse than previous months, I could hardly function for about a month. I was prescribed painkillers for chest pain. Holiday socialising was quite a struggle because I was extremely tired. Relatives visited (I didn't have to go anywhere) and they helped with Christmas cooking so I could take some rest if I wanted. However, I felt embarrassed because I couldn't focus on conversations or playing board games.
Other months in betweenThere was a pattern - every month I would have some symptoms for about one week (chest pain, sore muscles, weakness, cough, dizziness brain fog...). The rest of the month was more or less normal. Employers extended my contract in autumn and I felt well enough to start working 40 hours per week.
Every single time I got better I was happily thinking: Yay, it's over! It took me a long time to accept that it's chronic.
Exactly a year ago, my doctor finally referred me to LC clinic (I had no idea it even existed). They listened to me and took me seriously. Told me that there is a lot of similar cases. Sent me to take more tests. As on previous tests, everything looked perfectly normal. I know I should feel relief if tests are ok, but I don't have any "black on white" proof to show that anything is wrong with me physically. So frustrating!
At the clinic they admitted that they don't know much about LC and that there isn't any cure. They gave me unhelpful advice like "exercise more".
Told me to come back if it got worse but I'm just so tired of all the doctor appointments and tests that I started to avoid those if possible (the outcome is always the same).
Jan 23'No improvement, I couldn't tell my employer when I would be able to return to work. We agreed to try working from home for a while (otherwise they would need to find someone else to do my work). CEO usually doesn't allow working from home but I have a good boss who trusts me because he knows that I'm honest and hardworking.
MarWe (my partner and I, we don't have kids) adopted a puppy.
It was (and often still is) a struggle to juggle an energetic dog, full time job and basic household chores when you're in pain and tired all the time. That being said, I think it helps that I have a responsibility that includes daily walks to a nearby forests. I doubt that I would do it otherwise. Some time our walks are super short, sometimes a bit longer - I believe some walking and fresh air are beneficial. I often have to take a nap after a walk. I still can't imagine running or working out like I did before.
TodayI still work from home. Also in the evenings and weekends because I often need longer breaks. I feel thankful to have the ability to work on a flexible schedule. I hope they will allow me to work remotely as long as I don't get better.
Symptoms I had in the last weekchest pain - In 2023, I had pain in my chest every single day (which is far more often then a year before). It ranges anywhere from mild to moderately severe, but I usually don't need to take painkillers. The pain isn't all of the time - it comes and goes during the day. It usually feels like stabbing in the lungs. Sometimes it feels like tightness around my chest.
dizziness, even while sitting
dry coughjoint and muscle pain - Sometimes it feels like sore muscles, this time it's like when you have a flu. Yesterday muscles in my legs kind of throbbed and involuntarily moved several times (I don't know how it's called).
shortness of breath, mild
feeling very tired and weaksweating at night - a lot, often with a kind of "releasing toxins" smell
cognitive problems like brain fog, trouble concentrating, poor memory, forgetfulness, trouble remembering words and completing sentences - like there is a switch in my brain that suddenly goes off and I can't recall what I was saying or doing...
Summa summarum: I can function. But it's hard. I try to take it day by day, hour by hour. Some days I can do more, some less. I'm getting major brain fog ATM, so I'm going to wrap up this post (it took me all day to write it and several days to go through this thread). I want to add more, so I will later write a separate post with some comments on what has been written here. It felt good to talk about it. I don't believe I could do it if I wasn't on vacation this week.
Doddie, I hope you don't mind that I've written such a self-centred post in your thread. I didn't want to open my own and mostly wanted to comment on your posts but that's how it turned out as I went with the flow. Part 2 coming tomorrow.
Take care,
Maša
