COVID and Me – My Personal Story part 4: Aftermath

This is the transcript for my YouTube video "COVID and Me – My Personal Story part 4: Aftermath".

Before I pick up the story from where I left it, I’d like to say that I’d be genuinely interested in hearing from anyone who spent time hospitalised with COVID especially anyone who was put on a ventilator to find out if there are any similarities to my experience.  I also wish to warn viewers that discussion of COVID can be triggering; I know this from personal experience because just having to remember what happened to me has triggered me and I’m not covering the experience in great detail.  Finally, you will get the most of this account if you watch the entire video.

When I arrived home I discovered that my ex-wife had cleaned my flat to hospital standards and, because she knew when I was due to arrive, had run a bath for me as I’d informed her that I was desperate to have a decent soak.  She couldn’t be in the flat when I arrived as I was told to self-isolate at home for 14 days.  She did, however, come to my front door to welcome me home.  I was still a bit uneasy with regards to my mental state so I can’t remember who attempted to initiate a hug but I pushed her away.  It was partly because I didn’t want to pass anything onto my ex-wife but was mainly because I was frightened that she’d pass something onto me.  I felt terrible pushing her away the way I did but my mind wasn’t in a good place at the time.

After she left, I got in the bath for a long soak.  It was heavenly.  My muscles relaxed and I could have stayed in that bath all night, however, I wanted to get to bed as soon as possible as I hadn’t had much sleep the previous night.  You would never have been able to tell that I’d had trouble walking a couple of days beforehand as I moved from room to room as if nothing was wrong.  Even my arms didn’t feel the exertion of carrying my heavy bags from the car to my flat.  I dried off and went to bed.  Ah, the feeling of clean sheets and the warmth of my duvet were sublime.

I woke the next morning struggling to catch my breath and my muscles ached like I had never previously felt before.  I was back to feeling like an old man, shuffling around my flat and needing to sit down as soon as possible.  I went to my living room window, opened the curtains and felt a wave of terror crash down on me.  The outside world was not merely a place that made me uncomfortable, it was a nightmare of disease for me now.  I closed the curtains again, needing to shut out the world.

Those 14 days of self-isolation was Hell for me.  Due to my nightmare-fuelled delusions and enforced solitude in my lonely side room I was desperate for physical human contact but I couldn’t have it.  I didn’t have a problem with being on my own before COVID but I always had the choice of going out if I felt like it.  For these 14 days I didn’t have a choice and I couldn’t let my ex-wife come in either so it was a lot harder to take.

I felt like I’d gone 20 rounds with a championship boxer so my routine for the next fortnight was get up, have my meds, watch TV, go to bed and repeat.  I read the booklet I was given about what to do after a stay in Critical Care and did what I could.  I was weak as a kitten and desperately lonely.

I didn’t want to over-burden the nursing staff on the COVID ward so I waited until a couple of days to call to see how my friend Peter was doing.  I was shocked to be informed that he’d been moved to a community ward already.  The nurse couldn’t tell me where he was moved to because I wasn’t a family member so I had to wait for Peter to contact me.  He never did so I don’t know whether he was discharged from the hospital or whether he died.  It’s only recently that I’ve even thought that I may have given him the wrong telephone number in my confusion and haste.  I have plenty of regrets in my life, losing Peter is one of the biggest.

I was on the long road to recovery but COVID casts a shadow over my life even now, four years after falling victim to it.  After my period of self-isolation was over, I was finally able to hug my ex-wife and life reached a new norm.  When I was on the COVID ward, I had told Peter that I wanted to ask my ex-wife to marry me again but, in the cold light of day, I realised that re-marrying was a bad idea for both of us.

The two months’ worth of false memories kept haunting me so I figured I was suffering with PTSD, a fact that was only confirmed last year, almost three years after leaving the COVID ward and it was only around March or April this year that I started getting any help for it.  My local mental health Trust doesn’t have any PTSD specific therapists so I have to have my sessions via video call with a therapist from another Trust.

I’ve had a couple of instances of getting the feeling that I’m not really here in this reality, that I may still be in hospital or, worse still, that I’m still a lab rat being preyed on by the unscrupulous scientists from my delusions.

Two months after my discharge, my hair began to fall out in handfuls.  That worried me because I wasn’t told that it’s a common occurrence following life-threatening illnesses.  I’d recommend that patients be told that possible side effect before they leave the hospital but no one listens to me so why bother?

I still sometimes lose myself in time due to the fact that I have two months’ worth of fake memories on top of what I remember from my time in hospital so I made a SAR request for my medical records covering that period.  I’ve discovered that I did indeed struggle with someone at the start of my hospitalisation, yanking my canular out, but that was based on the blood splatters on my trousers.  I also did tear the CPAP mask from my face.  Apparently, it happened more than once as my medical records mention a number of panic attacks whilst being treated with the CPAP machine.  I can confirm that I did fall out of bed during what I thought was my escape attempt but it was actually me trying to get away from the smell when I soiled myself during my delusions.

I lost two teeth because of COVID, not directly you understand but due to the fact that I suffered so much jaw pain post-hospitalisation that I just told the dentist to pull the bloody tooth and the second had to be removed as I assumed the pain was still COVID-related jaw pain until it was too late to save it.

I didn’t get referred to the Long COVID clinic for about a year after my hospitalisation and was given very little in the way of tests so I still don’t know what long-term damage has been done to my lungs, heart or brain.  No one seems to want to acknowledge the decline in my memory or cognitive functioning so I haven’t had any scans done, something that I think should be done to anyone who’s been hospitalised with COVID.

In 2021, following a bout of salmonella poisoning and a perianal abscess, I was diagnosed as having a urethral stricture.  That was caused by the catheterisation I underwent whilst sedated and paralysed on the ventilator.  I had been having a split urine stream for months following my time in hospital which was apparently caused by the lack of force of the urine passing the stricture.  Two weeks later, I had another perianal abscess and a third started developing soon after my operation to fix the urethral stricture.  By the middle of 2022 I had had five operations under general anaesthetic and had to postpone another operation to fix a hernia that I was diagnosed with at the same time as the urethral stricture.  The abscesses and the hernia aren’t related to COVID but my slightly lower than average oxygen saturation levels since COVID have made general anaesthetics more problematic for me.

I’ve still got a lot of the symptoms related to Long COVID but, whenever I go to the GP, whichever doctor I get doesn’t let me rattle off my various symptoms because of the ‘one problem per appointment’ rule.  A cursory internet search shows that my symptoms can be Long COVID related or caused by Post Sepsis Syndrome but, as my discharge summary doesn’t mention sepsis, my GP probably doesn’t even know I had it (or a respiratory arrest for that matter) so my GP plays whack-a-mole with individual symptoms rather than consider there may be an underlying cause.  Looking at all the symptoms to see if any are related might solve all the problems at once so I may not be being treated properly as a result.

COVID’s shadow has left me constantly fatigued, gives me periods of breathlessness and my memory and cognitive functioning have declined to the point that it’s taken months to write the scripts for and record these videos.  Four years and I’m still affected by a single illness.  No one can tell me when or if I’ll ever fully recover and it’s this uncertainty that weighs heavily on my mind.

The delusions I suffered with while I was on the ventilator still affect me now but, thanks to the EMDR therapy I’m currently receiving, I’m coping with the traumatic memories that my brain concocted out of my fears, anxieties, hopes and the limited sensory input it was receiving at the time.  However, the therapy is also uncovering deeply buried traumatic memories that were triggered by my delusions as well.  In some ways, the therapy is causing future problems that I’ll have to deal with if I can ever get the one-to-one psychotherapy that I’ve been on the waiting list for so long when the PTSD-focussed therapy is over.

Will I ever get the tests and scans I need to fully deal with my symptoms?  Who knows?  Can I ever really be able to trust my mind again? And how many other people are in the same boat?  Again, who knows?