Not Recovering from Anything

According to some, the pandemic is over with. Done. Finished. History. Well, I’d say it’s certainly history. Living through such a disruptive and frightening period is certainly historic. I’m not going to go into statistics or figures here, because it’s a constantly changing picture so I cannot be exact. By the time anyone reads this it will have shifted. But in the UK, people are still getting very sick, being hospitalised and are dying of the Virus. There’s an estimate that one in ten infections leads to Long Covid, and given how entirely poorly the similar condition of M.E (myalgic encephalomyelitis https://www.meaction.net/learn/what-is-me/) has been understood and those with it treated shockingly badly, there’s not much in terms of help or progress with research.

My first run-in with the virus was before we knew it was present in the population. There were notices about anyone coming back from the Wuhan province in China, but back in those innocent days, we just didn’t know. I’d been unwell but it was February 2020 and I thought it’d just been a ‘flu-like cold. So I did my usual February work trip to Austria. After a very early start and a rough flight (the last twitches of Hurricane Bernard) I was feeling awful. We had an early supper, adjourned to our rooms and that was when the crisis hit. I can’t actually remember much, other than being on the floor of my bathroom, feeling like I was dying. I found it hard to breathe, fever spiking, coughing, somewhat out of my head. I’d been hit by waves of terrible nausea, hence heading to the bathroom. Around 2 or 3am I somehow managed to get to my feet, boil my kettle, make a herb tea, fill my hot water bottle, take some pain killers then collapsed into bed. I remember regretting not taking my key out of the door, thinking they’d maybe have to break it down if I didn’t make it. The next morning, I woke, feeling as if I’d been put through a mangle repeatedly. I could not eat. But the crisis had passed. I dragged myself through the rest of the week; truly I don’t know how. It wasn’t until much later in the year when I had my first vaccination that I realised I’d already had the virus. Anecdotal evidence was that those who had already had the virus reacted strongly to the first vaccine. I ended up in bed for a week. The second jab made me feel fantastic – again, another confirmation of previous infection.

2020 came after the dreadful 2019 where family illnesses, crises and the passing of my father, had already knocked the stuffing out of me. I’d had shingles twice during the most stressful parts. So I put my lack of energy from February 2020 down to the effects of that on top of my existing M.E, and the other intractable health problems. In the first week of the initial UK Lockdown, my mother died suddenly. If you have dealt with the aftermath of a loved one’s death, sudden or expected, that’s tough enough. But add on the confusion and sense of complete untethering of the normal run of life brought on by both pandemic and lockdown, the stress was catastrophic.

For the record, there were aspects of lockdown I appreciated. The quiet. Being able to sit in the garden and hear the cuckoo calling a few miles away. The lack of traffic. The increased bird song. The cleaner air. I miss those. As an introvert, I didn’t find the enforced isolation a problem, certainly not at first. Social media was already a source of fellowship. At home, it was just my husband and myself, our daughter being far away in Germany. Skype calls kept us close. We watched TV series we’d missed the first time (“The West Wing” had passed us by – I’d highly recommend it) and we rewatched dvd box sets of favourites. I spent part of many nights plagued by insomnia (grief does that) sitting rereading old favourites on the sofa.

When my gym reopened, with well-spaced out equipment, I returned. I realised I was probably not well. I’d walked every day I could, during the strict lockdown, and when it was finally allowed to drive somewhere for a walk, we went to the coast about 45 minutes away. In the wake of a storm, I found two pieces of amber within a few paces. But despite having tried to keep fit, I was not returning to pre-Covid levels.

That first summer of lockdown, I was finally moved up the queue for an autism assessment, and by the autumn I’d had my appointments by video link. I don’t think I will ever fully forgive the assessors. When I first put in my request, I had been asked if they might speak to a parent or someone who knew me as a child. At that stage my father was frail and my mother had dementia. I made it (I thought) very clear this wasn’t appropriate. When they contacted me again the autumn after my father died, I was asked this again. I was upset and angry. There can be no other health assessment that asks adults if they can talk to their parents. As the process went on, I was asked another SIX times. I became distressed each time and made it clear this was not possible. The two people I saw, one a clinical psychologist, the other a speech therapist, were nice, pleasant and seemed quite sensible. But even they kept on asking, even suggesting speaking to a sibling. I had agreed they could talk to my husband as he’s known me since we were 18. I imagine there was a supervisor behind the scenes demanding this. I hope that was what it was. I considered making a formal complaint but in the end, what’s the point? I had no energy and no stomach for a fight. When my statement arrived, I seethed. It made it quite obvious that there was no doubt, that I was clearly autistic. They didn’t need to speak to anyone else. They’d put me through such distress needlessly. If by chance either reads this, I’d say be ashamed of yourselves and do better; the system will only change if YOU change it. I can’t.

I’ve had Covid again, just before Christmas. It wasn’t as severe but it was horrible, alien-feeling as if someone not earthly was running through my nerves and veins. It took months and months after that to get back to what I’d been before. It varies day to day still. I’m still not able to go to the gym 2 or 3 times a week, and long walks are impossible. I get weird symptoms. I find taking an antihistamine (Loratidine is best) sorts many of those, which suggests that the after effects include mast cell activation issues. Mentally, I get very foggy. Writing is harder than it’s ever been. I’ve limped away at “On Hob Hill” sometimes managing a few thousand words a month, sometimes nothing at all. It’s now gone past the 90k words mark and is almost finished. Go, me. I get dreadfully low and depressed, and anxiety hits sometimes like a silent invisible tornado. Going among people is awful. I’ve realised that the human world is intolerably noisy and chaotic. Shops play awful music, traffic is like thunder. Human beings are driven more than before by a me-first mentality and the greater majority of them are anathema to me. I’d like to go and live in my cave in the mountains.

Last year I had shingles again for the third time. I also had to be treated for Lyme disease when a bull’s eye rash came up on my foot. There’s a plethora of ongoing health issues, none of which will kill me but all together make life less than delightful. Constant chronic pain feeds into low mood and anxiety. I’m not recovering from anything. I’m not bouncing back. And if I’m not, many, many others aren’t bouncing back too. People are pretending it’s all over. Government is trying ruthlessly to suppress evidence of a host of things, including the sheer numbers affected by Long Covid. I’ve written here in the past about the Just World Fallacy and it strikes me that a lot of people simply don’t want to believe that a previously normally healthy person can be struck down and not fully recover, because it could happen to them.

I’m aware this blog post might well sound a pity-me, poor-me, kind of affair. It’s not a bid for sympathy. In some ways it’s a bid to remind folks that for many the last 3 years are not going to be relegated to the dustbin of history, that many will be living with the after-effects of all kinds for a long time to come. There’s also a host of revelations that will emerge in the coming years that will show how very badly those in charge have treated the country (I can only speak of the UK) and I hope that one day, justice will be done.