It’s been a while since I last posted. A lot of that has to do with the fact I have been unwell since I had Covid last April (2020), with the most severe symptoms kicking in at the end of August last year, following over-exertion and a mild cold. I won’t bore you on this post with the extent of them, but suffice to say I am fed up of the condition at this point, as well as the constant myriad of symptoms that plague me daily.
Here in Scotland, we don’t have Long Covid (LC) clinics, so every single referral is to a separate service. To date, I have had basic testing which, from research amongst my peers, doesn’t necessarily show the extent of what’s going on. I have had few explanations as to what is going on. Currently, I am believed to have what is called Postural Orthostatic Tachycardia Syndrome (PoTS), waiting on cardiology appointment. That’s next month. Given how things have gone, I’m expecting to be told to go away and nothing further to be done. There is one PoTS specialist in Scotland and they’re not in my trust area. I am reliant on the PoTS U.K. website for support and suggestions, but much of my symptom alleviation is down to self experimentation with supplements recommended by peers within the community. My online community, found through joining Facebook (FB) groups, has been my saviour, literally.
Coming up for Christmas, I am here wondering what the future holds. I have not been able to afford Christmas presents, especially as I was told on Friday that my career is now at risk due to the level of absence I have had. Partially this is down to some kind of weird limbo I am in due to diagnosis of Long Covid, as in I do not formally have one, despite the National guidance on the subject. Why don’t I have one? I got sick during the few week window where testing at home was not done, but if you couldn’t drive there was no transport. So I was not tested. Given I am in debt, I am sitting here faced with losing my home, on top of the multiple other indignities ongoing. I am currently thinking about income streams, so perhaps I will ask for donations to help write this blog. I have two feline children to feed, after all.
I will write more in the coming days and weeks about my experience. I will also write more, if nothing else to justify one of those coffee donation account things. I may even set up a gofundme as it’s looking like I will need one.
If nothing else, over the last year, my LC journey has made me realise I have to treat my disabled body with respect, that it won’t keep up with everyone else’s. Unfortunately, the world expects my disabled body to do so, meaning it frequently breaks down due to the continual stresses and strains of being Neuro divergent on top of the now more obvious physical constraints I have.
Be well. For me it’s now day two of Hanukkah and I’m off out to find me some soufganiyot (that’s jam doughnuts to you). Chag Sameach Chanukah, if you celebrate this.
