The Long Covid Collective

Hey Triona,

Thank you so much for bravely sharing your story, it really moved me and I felt quite emotional reading it! I am so sorry to hear how touch your journey with long covid as been. I can only imagine how awful it was to be admitted to hospital for struggling to breathe. I have had this sensation lots of times, only less severe, so it must have been extremely scary. And then to be told that ‘nothing is wrong’ must have also been so tough too! I am pleased to hear you have support around you but at the same time I can imagine that being a mother places an incomparable toll because you just want to be a mother and you aren’t able to do everything you want to for your daughters. But I am sure they understand and just like you are for them, they only want the best for you and just want you to get better! Which I know that you will!

I am so pleased that the injections the consultant gave you helped and that your symptoms slowly got better. But then to hear that you were reinfected honestly broke my heart! You certainly did not deserve that! However it’s good to hear you are experiencing good days and Triona, you got through your darkest of days twice over now, that’s got to count for something right? You should be so proud of how far you’ve come.

Your journey through this tough tough time demonstrates your inner strength and determination, you should honestly be so proud of that. I completely agree that it’s so hard to be positive and that’s okay! It’s okay to be angry and negative about it. But I know that overall your positive strength shines though and that’s the main thing! Thank you so much for sharing your story, my heart goes out to you but I also feel inspired by it, so thank you.

Sending so much love to Triona and wishing you all the best with you recovery. I really hope those nasty symptoms start to alleviate soon. Thank you for doing your best to stay hopeful, that’s all we can do! You aren’t alone with this and we will get through this. Keep in touch! Jemma ❤️

Also thank you to @Charlotte for your lovely reply to Triona too - I just love the long covid community we are all a part of ❤️

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!