Hi everyone 👋 I'm Sophie and I'm 39. I've had Long Covid since August 2022. Before that I'd had Covid 5 times and had also been vaccinated. The last tike that I had Covid I was virtually asymptomatic but a heavy feeling like walking through cotton wool remained for a long time after. A couple of months later I started getting dizzy when standing but assumed I was anemic as have been before. But then the heart palpitations started and I was struggling to walk and suddenly felt really generally unwell when standing. After a few tests including a tilt test (horreandous for anyone with any sort of orthostatic intollerance or dysautonomia), I was diagnosed with POTS and Long Covid. The NHS prescribed me with beta blockers, salt and rest. But the beta blockers only masked the problem by temporarily lowering my soaring heart rate and the salt didn't seem…
The Long Covid Collective
Does any else struggle with the loss of their old self? And if yes, what helps you?
Yesterday I faced a lot of things that I am (currently) not doing anymore. I tried another work out from my covid programme but again my body responded poorly. So I decided to distract myself by logging into my work laptop, hoping to speak to some colleagues but they were all busy.
And that made me realize, just how much the covid flare up from 6 weeks ago took from me. How little there is left of who I was. I have always been an active person, and I was so happy and proud that during my covid recovery I was able to walk again and work out. But I can't do that right now. And I was working a little every day, so I had some purpose and I was talking t…
This is such a good point you have made Charlotte and I have definitely experienced all of these same thoughts. I completely agree that the loss can feel so big because of how much it takes. I almost try really hard not to think too deeply about it or else it can tend to make me feel very sad indeed!
I think loosing your sense of purpose can be an incredibly difficult thing to come to terms with. Especially since so many LC sufferers seems to have similar personalities with a strong work ethic and their commitment to others…so loosing the ability to excel in these areas are so incredibly hard to come to terms with.
I am so sorry that you feel so much is on hold at the moment with your job and your trip to Mexico and even simple things like dates. I honestly feel exactly the same as you in terms of these little and bigs things that aren’t possible right now.
I really like your question about how do you find yourself. Because I have been asking myself this in many different ways too. And yes, I completely agree…I try so hard to focus on the small things and be grateful blah blah blah… but you are so right - it does not always cut it!!
I guess although it is frustrating, it is focusing on what you can do and what you are able to plan for (so basically the small things - eurghh!). I feel I am going through such a brain re-wiring - not just with the long Covid nervous system regulation, but also with how my brain responds and preserves things. So I am working on placing less emphasis and value on what I achieve in a day and instead just learning to ‘be’. Although it is a lot harder to do than said. But to be quite honest, I haven’t figured it out fully yet, and not sure I will ever… sometimes it’s okay just to be bloody angry and frustrated and confused and upset. And it’s so great you wrote it all down on here so beautifully Charlotte. Thank you so much! It has really made me think!
Hope you’re doing okay and I just know that soon (maybe not now) but soon, you’ll be headed to Mexico!
Sending so much love ❤️
Hey Sophie,
Thank you so so much for sharing your experiences. I am so sorry you have gone through all of this, it must have been a whirlwind, especially with 2 children. I have never heard someone describe the feeling of walking through cotton wool, but that is such a great description for how I can feel at times too.
I am so pleased that you were able to get a diagnosis for POTS and long covid, but it must have been incredibly frustrating to not have seen improvements with the beta blockers and also for your symptoms to get worse. How awful.
That is such great news about the Breakspear Medical, I have not heard of them but I just think it is fantastic they were able to help in so many different ways. You seem so so knowledgable about this, so thank you so much for sharing it! I am honestly so pleased that you are now feeling a lot better and can play in the park with your children, how sweet. Also its fantastic that your Husband is so supportive, I am so happy that is the case but I am so sorry you’re still struggling with some of your symptoms though.
You are so right about being grateful for these online communities - I genuinely do not know where I would be without them! I am so grateful for everyone involved, I think I would have gone crazy if not…I just felt so alone and confused. So hearing stories, such as yours, helps so much (although I wish we all did not have to go through all this!). Thank you again Sophie for sharing all this and also mentioning about the Epstein-Barr Virus, it is so interesting and I definitely believe I should research more into it.
Sending so much love and really hope you continue to see improvements and continue to play in the park with your children - that is just so wonderful! ❤️