"Recovery" from Long Covid

some thoughts

When I see people that I don’t regularly speak to, they ask me how I am doing (usually in regards to Long Covid). I don’t mind this question and appreciate being thought of, but sometimes feel it is asked with the expectation of a positive answer. So I usually say something like “I’ve been feeling quite good recently and seem to be slowly recovering”. It’s not a lie, I do feel like that. I have definitely improved over the last year, but how much of that is “recovery” and how much is adapting and using techniques to manage fatigue and breathing to improve my quality of life. Also, I am lucky with the severity of my symptoms in the first place. But I have no idea whether I will actually ever fully ‘recover’ from Long Covid (and that’s NOT me being negative).

This illness has forced me to slow down, change how I live my life, and live in the present as much as possible (if I think too far ahead it makes me paniicccc). I feel lucky and happy most of the time, especially when I compare how I am now to 8 months ago. Plus the fact I have been able to move back home and have built up a good network of friends here, and have good family and friend support network generally. I am happiest when I am accepting of where I am at that moment. I appreciate every little thing I am able to do, enjoy or see. I am not thinking much about recovery, just about maintaining a healthy baseline level, going day to day and adapting based on how I feel or what I need to do to manage my symptoms. It is difficult to describe, because I am not glad I am ill and wish I could be well, but I feel more content a lot of the time now then I did a few years ago; always feeling like I wasn’t having enough fun or maybe that I wasn’t enough as a person. But now I have been forced to feel worthy as a person without being able to work or do much at all, and I know I am.

But then the hope of recovery sneaks back in, after I suddenly realise I have been feeling quite good compared to my baseline for a week or so. I get overexcited and stop resting as much as I should be to maintain pacing, while continuing to avoid a crash. Then comes the “Omg I must have recovered or be recovering!!!! This is me going back to normal”. I try to rationalise and hold back the excitement of it all, and tell myself that this is a really bad idea. Before I know it, it of course comes crashing down again. I realise I have been creating a false reality and therefore RUINED my pacing and gone back into a ‘boom and bust cycle’ which is bad for my health. I then feel prettyyy bad for a few days in a row with fatigue and headaches, poor sleep, and have to rest for most of it. The hangover effect of that will then continue for a while and force me to decrease activities, rest more etc to get back to baseline.

That has happened over the last week or so, with the thought of being ‘recovered’ happening while I swam a few lengths in an open water pool and felt okay, only to come home and feel awful. Suddenly I found myself on the verge of feeling more low than I have in weeks, because I am brought back to the reality of the fact I still have Long Covid and have not miraculously recovered. 5 days on and I can still feel the headache and fatigue lurking at the side of my brain just waiting to take over. Even now when I know I should be resting I am writing this. No matter how many times this happens and how much I know the info I can’t seem to stop it. I have changed my attitudes a lot over the last year but definitely have more work to do.

ps. I’m feeling alright now as making my way back to the accepting stage of it all lol x