William’s Story

ABBEY: What was the pandemic like?

WILLIAM: The start of the lockdown was a surreal experience. Walking Shadow through almost empty streets, all very quiet; shops and offices closed, bemused seagulls with nothing to scavenge.

Of course, there were people about - other dog walkers, a couple of elderly ladies talking a regular constitutional, a care worker having a quick fag between clients and even parking attendants! Over the weeks nods progressed to hands raised in acknowledgement, to pleasantries exchanged across the empty streets - all well? partners? neighbours? - and Shadow, at the full extent of his lead, happily accepts biscuits ("these are my special diabetic ones") from the ladies. And, careful as we all appeared to be, reports of friends and relatives "going down with it" became more frequent.

Occasionally, there was amusement. The bulging shapes of the well-intentioned (but, I’m afraid, pointless) hand-made masks, the doomed-to-failure solutions to fogged-up glasses, coloured drawings on children's masks and - most bizarre - a man who had cut a hole in his face mask so he could walk about with a cigarette between his lips.

Necessary shopping was a strange ritual. Marshalled into the store, a squirt of anti-bac, basket handle wiped, avoiding being at the same display with other people, observing a two-metre gap in the check-out queue. I always preferred human check-outs. They gave the chance to say thank you, and ask how things were going. Some of the stories were awful - abuse for refusing to allow people to take more goods in short supply than they were entitled, ridicule at the perspex screens being installed, insults about their “nose nappies” and blue gloves, the horrifying story of a man who deliberately coughed on his money before offering it as payment. And once home, wash your hands, wipe all the tins and packets, wash again. Washing; always washing.

A: When did you become ill?

W: I attended my first inoculation on 9 February 2021. That night, I became very ill. At first, we thought it was a reaction to the vaccine, and was reported as such. Then, as my symptoms failed to improve, it was concluded that I had, in fact, managed to contract COVID-19 either just before or actually at the clinic. However, unlike most people, I did not recover in the usual space of time.
Once I was able to get off my sick bed, I discovered I had profound fatigue and aching joints. I was no longer able to walk more than a few yards. I also realised that I could not think clearly or process information. As symptoms persisted, my GP prescribed antidepressants, which suggested to me that it was all in my mind. That was the only treatment I have ever received.

As the months went by, I eventually saw another GP in the practice and raised the possibility of “Long Covid”. I was told that that would only be a “diagnosis of last resort”. There were no treatment centres, no drugs, not even condition management programmes. I should just keep “taking the tablets”.

A: So doctors haven’t helped?

W: We were finally able to make our planned move to Arbroath in March 2022. My new GP introduced the phrase “Post Viral Fatigue Syndrome”. I am unclear whether this means Long Covid has been granted a more (pseudo?) clinical description by the medical profession or whether it has been lumped in with other conditions. In any case, “fatigue” does not do justice to my lived experience. I actually find the description quite demeaning.

I know that some doctors continue to doubt the reality of Long Covid. Some maintain that the “fatigue” is caused by sufferers simply losing the habit of exercise and acquiring an “irrational and debilitating fear” of it. They call this “kinesiophobia”. Again, it’s all in the mind.

A: What is “Long-COVID”?

W: There seems to be the perception that Long Covid is just “lingering Covid”, symptoms that are simply taking a long time to clear up. The label itself has become an enemy: it sounds like an infection that will clear up, not a life-changing disability. Fortunately, a new description is coming into circulation: “post-COVID-19 syndrome”. Unfortunately, it is described thus: “The patho-physiology is not known, nor have the viral or immunological responses been defined.” Or, in lay-speak, “We know it is real, we just don’t know what it is.”

A: Have you taken any steps to help yourself?

W: I joined several online Long-COVID support groups, but I find reading about the sufferings of others very upsetting. Some people are a lot worse off than me. There is always a frisson of excitement at some new report, trial, or finding. The likelihood of micro-clots and auto-immune effects causing permanent damage to my body doesn't encourage me.

On the other hand, there is occasionally - very occasionally - good news. When I started to prepare this account, I read of a Long-COVID sufferer who is, finally, after 1,284 days, “only just beginning to feel close to how I was before March 2020”. So, perhaps, there is hope.

I read of fellow sufferers who have had scores of appointments with various specialists. I have had none. And I fear that my other health conditions (pre-dating COVID-19) are being neglected.

A: How about the medical professionals?

W: My original GP appeared to be clueless about COVID-19 symptoms that were expected to go away but didn't. Was I just imagining my symptoms? Had I actually contracted something different? Something even more sinister? Was I skiving? Trying to claim benefits?

I was prescribed antidepressants “because they appear to help”. What was his evidence? How could they help? They certainly made me feel “it was all in my head”. Have they made my mental health worse? I am still taking them, and my current GP has not suggested coming off them.

A: What is “Long Covid” like?

W: My symptoms remain multiple, complex, variable, debilitating, and frustrating. It is a genuine physical, intellectual and emotional disability and has a huge effect on my ability to perform everyday tasks. There have been studies collecting and categorising people’s Long Covid symptoms. One lists 196 different symptoms before it goes into sub-symptoms. I have 30 of them. They range from relatively trivial to severely debilitating. There are days when I wake up with the smell of petrol or horseradish in my nose, days when everything tastes of oily fish, and others when everything tastes like the smell of damp cardboard.

My physical capabilities fluctuate. I now use two sticks to walk (unless I am in a confined space, like a corridor where I can touch the walls if needed). On the best of days, I can, at a snail's pace and with frequent pauses (I pretend to be window-shopping), manage a short walk. Usually, my limit is a slow 500 metres. On several days a month, I can't get out of bed. I drift to the left when I walk, which is very disturbing for other people on the pavement. I can't get through any day without my “nursery nap” of 1.5 to 2 hours of deep sleep in the afternoon.

I usually go to bed at 8 p.m., and it is rare that I sleep through the night. I am beset by disturbing dreams that border on nightmares. I talk, shout out, and thrash around, causing distress to my wife. I struggle with my intellectual processes. Concentration is now very curtailed. I find it almost impossible to hold a conversation. I am unable to hold a thought for more than a few moments.

“Brain fog” is frequently mentioned. I take this to mean difficulty in navigating thought processes, developing an understanding, constructing an argument. I also suffer from what I call “marshmallow head”. This is when all my mental processes suddenly stop, often in mid-sentence. I am left without a clue about what I was saying, even if I am prompted. I find writing easier, because I can glance back and work out what I am trying to communicate. But everything takes a long time.

A: How do you feel about having “Long Covid”?

W: Without exaggeration, Long Covid has ruined our life: we are unable to do what we had planned for our retirement, especially travel. I had intended to take up painting again and to write more.

However, my hands shake, and my dominant hand is prone to sudden spasms. When it became clear I would be unable to use traditional methods, I began to experiment with digital art. Unfortunately, I have been unable to maintain sufficient enthusiasm.

Writing is only possible because I am resigned to very slow progress. Keeping focus is very hard, and I can only write effectively by dint of copy-paste and the ease of inserting text later. I am unable to write by hand.

Inevitably, all this affects my self-esteem, confidence, and sociability. Giving in to melodrama, I swim in a flow of despair. My wife is now my housekeeper, carer, and nurse; I am merely a drone. And it’s quite a strain.

A: Hopes for the future?

W: Thanks to the work of a therapist, I’m pretty much adjusted to my new life. I suspect it is harder for other people.

I now do voluntary advice work, which I really enjoy. I was feeling very lonely and isolated. Being part of a group is really helpful for my emotional health. This project has been hard at times, but it has been a very positive experience. I am feeling more confident.

Even though I get easily confused and am prone to panic, I am able to travel again. I happily accept passenger assistance when I travel. The railway people have been fantastic; airports can be a bit hit-and-miss. But it is very tiring. Of course, when I get to my destination, my limitations have travelled with me! Where I used to delight in wandering strange streets, now I must just sit and rest. But resting in the sun is good.

I think we need to face up to the real possibility of another pandemic. My most earnest wish is that we do not repeat the mistakes that were made with COVID-19.

As we speak, the Covid Inquiry in London is underway - such a depressing saga of stupidity, willful ignorance, indifference, and selfishness by those we were trusting to manage the situation. I’m only able to contain my anger because a voice in my head asks, “What did you expect?” The law was allegedly broken every single day by the people in Number 10 Downing Street. There were frequent drunken parties. What did they have to celebrate? These are the people who had us banging pans for the NHS workers. Were they laughing at us all that time?