Last post, I wrote about my experience having COVID in January and not being able to access an at-home PCR test (or any other useful support). Recovering from COVID was a slow and arduous process, but in March I felt I had maybe regained 80% of my pre-C function – that’s still not great, considering how little functionality I had to begin with, but probably as good as it was going to get.

Unfortunately, after a week with a few high-energy commitments, I crashed hard. The activities – a few appointments – were exhausting but broadly within my energy envelope in the past. I could previously have recovered with a few rest days, or a week. But now, these activities affected me so badly that I felt I had COVID again. Obviously, I didn’t, but this was my body telling me I had way overdone it, and just in case you didn’t get the message, here are your COVID symptoms (fever, weakness, difficulty speaking) back again.

My previous estimate of 80% function regained was way off. I think I’m more like 50-60% of where I was last year. Not only has my baseline changed, in terms of what activities I can safely undertake, but my symptoms have changed too, with the addition of what I can only describe as long COVID symptoms.

I was extremely fearful and cautious of catching COVID, as I knew the chance of my condition deteriorating and/or developing long COVID was high. To have my worst fears come true, after what has frankly been an incredibly shit time already, is a huge blow.

There’s not much I can do now, except the soul destroying task of reevaluating what I can and can’t do, and adjusting my entire life to match. It’s hard to understand what that is like unless you have chronic illness. The best way I can describe it is being surrounded by an invisible electric fence, in the fog. You are feeling your way around as best you can, but the only way to know if you’ve hit your boundaries is to be zapped, and if you do this too many times the fence starts shrinking in around you, reducing your function even further.

Now that fence has changed dimensions again, squeezing the last drops of functionality out of my existence. All I can do is to painstakingly map it out, and try my best to stay within its borders.

Author: Siobhan S

30 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic disability advocate.

4 thoughts on “Long COVID”

  1. So so sorry to hear this, Siobhan. I can’t even begin to imagine how this must feel – totally sucks. Wishing you a further recovery🤞

    Liked by 1 person

  2. How absolutely shitty. So sorry to hear this- I know several people smashed to the ground by long Covid, and they didn’t have chronic conditions, so this must be beyond belief. Sending you GREAT BIG SPOONS, and floofy kittens. xx

    Liked by 1 person

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