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The Long Covid Collective

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Hi, I’m Estera and contracted Covid in April 2022. It was mild but after few weeks I had a concussion as well and was super stressed at work and all of that made my body crash.

*please let me know if you had similar weird symptoms :)

I have not known I have long covid until last week because I was told that I burnt out, have anxiety and depression. But my weird symptoms did not fully fit in to this.

It started with me crashing at work and needing to go home a lot.

Soon after that I started having facial tics, uncontrolled muscle movements, spasms, cramps and even paralysis. It pogressed to a point where I couldn’t physically move any part of my body for up to 2h.

Later I would have “fit-like” episodes with my eyes rolling in the back and my whole body in spasm or uncontrollably moving (while being conscious).

No doctors knew what this is. I was at the point of checking myself to a mental hospital in hope to find an answer, as I was convinced it is all anxiety and depressions.

I still crash very often, and sleep for days at times. My muscles are aching and are extremely weak (as if I ran a marathon).

One of the wierdest symptoms is not being able to walk when crash hits me suddenly, and “freezing” in one position. As if my brain forgets how to move my body.

oh and of course brain fog like no other!

I don’t work but I really want to go back, because I loved my job (Worked in dog rescue center! :))

Jemma Bella
Jemma Bella
Jemma Bella
05 sept. 2023

Hello Estera! Thank you so much for writing this post and I am so sorry have gone through this extremely tough journey since April last year. It is so interesting that you felt burnt out and stress at work, I was exactly the same. I felt so silly feeling so unwell and thought I was being weak and that I just needed to push through, which I did do until my body just crashed completely. Very similar to you.

I am so sorry you did not have a diagnosis of long covid until now, I can not imagine experiencing all of these awful symptoms and not knowing why or what it was. It must have been so confusing and scary for you, especially because they put it down to mental health, which is, of course a factor to consider, but when you have all these crazy symptoms you just know there is something else going on! I feel very sad that you did not get the answers you deserved and perhaps weren’t believed. But I am so happy for you that you have finally gotten the diagnosis and hopefully you will go on to receive more support for it. I think just knowing that it is something like long covid and not something thats ‘all in your head’, allows you to come to terms with it. And you can then start to accept it, which I believe is on of the first steps in recovery.

The symptoms you experience with the facial tics, uncontrolled muscle movements and paralysis must be very difficult to navigate, how scary for you. I have not personally experienced the symptoms to the same extent you have, but I have definitely experienced the ‘ zombie like’ state of not being able to talk to move. At times, it has definitely felt as though my brain and body have become disconnected and it’s the most bizarre feeling! This fatigue can be so powerful and debilitating.

I just absolutely love that you worked in a dog rescue centre (feel like that would be my dream job!). I am so sorry you are not able to go back to work yet, but I am really hoping that sometime soon you are able to. I just know that the dogs would be very pleased to see you! I have a rescue dog called Autumn and she is the best thing in the world - so if it wasn’t for people like you running the rescue shelters then I wouldn’t have my Autumn, so thank you for doing what you do, not just for the pups, but also their future families 🐶.

I am so happy that you wrote a post for this community, thank you so much. Really hope you start to get on the right road to feeling better. Sending so much love ❤️

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