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The Long Covid Collective

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Hi! My name is Charlotte. I contracted Covid in February 2023.

Mid february I got the flu pretty badly and I called in sick to work for 2 weeks. I tested positive for Covid only 5 days after being out and about again, so I felt too guilty to call in sick again. Since my symptoms weren't half as bad as with the flu, I decided to work from home and do 80% of my normal hours. I would brush away the fact that I had no energy left to excercise or do chores because it felt shelfish to request less hours so that I could have energy left for my family or my physical health.

But around mid April my symptoms started to worsen. My heart rate would be spike all day, I had trouble concentrating, I started having fevers after any excersise and I had heart palpitations. I went to my GP who gave me the 'all clear' and said I just needed rest. So I sat down with my teamcoach, explaining that I would go down to working 3 hours a day and trying to build it up.

For a few weeks it went great. I could walk further, I could excercise more, my heart rate slowed down and I started to work more hours. But then my TC asked me to not just work more hours, but also increase my sensory input (meetings, calls with clients, presentations). And a few bad days turned into a few bad weeks.

I felt that I needed to rest so I tried to take a few days off to recover, but my TC wasnt having it. She told me to 'try to do what I could, even for just a few hours a day'. And so I tried.

And now I am having the worst covid flare up I ever had. I am having symptoms I haven't had before. I even need to sit down whenever I shower. But the mental part is the hardest. Feeling like I am failing at recovering (which in some sence I am, because I keep maxing out to please my boss). I feel guilty towards my partner for not being able to help around. I feel guilty to my friends, whenever I have to cancel. I feel guilty when I am resting eventhough I have energy because I could be doing something. And I feel so anxious towards my work, because they seem to wiggle my boundaries whenever I set them. Most of all I feel stupid, because I know what I need to do in order to recover, but I often feel to guilty to rest which is only pushing me further back.

It is especially hard since the first 2 months I had all this progress and now I am here relapsing. But I am going to have a talk with my boss tomorrow, and this time I wont be pursuaded and I registered for covid-physiotherapy. 🌼

My symptoms are

- limited energy & very easily overloaded sensory wise

- can walk max 10 minutes

- forgetting words

- hair loss after 3 months

- food sensitivities gotten worse

When I have a covid flare up

- pressure on chest

- throat ache

- stiff muscles in the morning

- fever

- nauseau

- heart palpitations.

Be kind to yourself! 🩷

Jemma Bella
Jemma Bella
Jemma Bella

Hello Charlotte,

Thank you so so much for sharing your story and experiences. It is actually crazy because we seem to of gotten covid around the same time and also seem to have similar personalities in terms of the guilt thing! This is what I wrote my first blog about because I just could not take the pressure and guilt anymore! I am so sorry that you have been struggling with this all and also that you have continued to push on, felt pressure from your work and felt all the guilt! I honestly know exactly how you are feeling. ❤️‍🩹

If there is one thing I have learnt, its that we can’t push our way out of this. It took me a long time to realise this because I was always so used to pushing on before this and ‘exercising my way through things’. I was in complete denial that I could ever have long covid, I remember I would wake up and genuinely think I’d be okay - I though this was all a short-term, temporary thing!! Especially when I would have a few days where I felt better and was able to do things, I thought I was back to my usual self but then the crashes would come. Similar to you! Also extremely similar in the fact that your GP gave you the ‘all clear’ and said to rest…that was so tough to hear and I did not know what to do with myself! How on earth could I just rest?

Another things I have noticed is that my PEM comes more from emotional and mental activity, compared to physical (although I have not done much of that!). But I would feel worse on the week days and actually feel better on the weekends, and I genuinely believe that was all down to my internal stress from the guilt of not being able to be at work. So that is definitely something to consider that the amount of sensory input and stress you receive really does influence your symptoms and recovery.

I am sure you know this but it definitely sounds like you are in a ‘boom and bust’ cycle of just feeling better and doing more and then crashing (I have been there!). These boom and bust cycles are really not sustainable and the only way to stop them is to strip everything back to basics, completely rest and prioritise yourself and stop everything that you can thats causing you stress. I know that might seem impossible, but I did and I can honestly say these past few weeks I am finally in control of my pacing and feel so much more positive about my recovery (I think its the accepting it!). I have researched and learnt so much from other sufferers and they’ve all said the same: there is no way we can push through this, the only way out of this is to rest.

You are not stupid! Please never feel stupid! Because I have felt exactly the same as you. But I promise you the more you learn to set these boundaries and prioritise yourself, the easier it becomes. Employers have a responsibility to look after their employees and if they aren’t supporting you like they should, there are route to go down. Also if you get a ‘fitness for work’ note from your GP, your employers have to respect that and put everything in place. If you haven’t got a ‘fitness for work’ note already, then I would definitely recommend getting it from your GP for as long as you need. I have been incredibly fortunate that my work have been really good with me and supported me during this time I have had off work (I have been off work since the start of March). When they first gave me one it was for 3 weeks, I literally was in shock and thought I would not use it at all, but look where I am now! The guilt has gotten a lot easier the more I have learnt that this isn’t going to get better unless I truly rest and prioritise myself. I am a teacher so I felt like I let down my colleagues and all my students (especially my year 11s!), but it was absolutely necessary for me to be signed off work because I was not able to continue the way I was going.

Also completely agree about the mental part being the hardest. I feel the exact same. There are so many emotions that comes with it and also the ‘not being understood’ factor too. But I understand you and there is lots of people that understand you too, we aren’t alone on this!

Anyway, I really really hope you start to get some relief soon. Thank you so much for sharing your story, its really helped me feel less alone today. Please keep in touch or message privately if you wish, I would love to keep in touch! Sending so much love ❤️

Ps. Someone told me recently that guilt is a wasted emotion and those 5 words have literally changed my life. If you have decided that you have to have time off work or cancel on friends, then there’s no point feeling guilty about it because its already happened. Took me a long time to start feeling less guilty, but I am slowly getting there!

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