In September 2023, Sam Williams wrote for Central Bylines about his life with long COVID. Clare Sansom has now spoken to him for East Anglia Bylines about his experiences of seeking – and occasionally obtaining – help to manage his condition.
Clare Sansom: Can you start, please, by telling us a little about yourself?
Sam Williams: I live in Okehampton on Dartmoor with my wife, our 18-year-old daughter, and our two dogs. I’m unable to work because of long COVID, and I also have other consequences of long COVID: POTS [postural tachycardia syndrome] and suspected angina. I also had a diagnosis of autism that arose because I no longer have the energy to mask my autism by imitating neurotypical behaviour.
CS: How did you first catch COVID19, and how badly were you affected by the acute disease?
SW: I caught COVID19 early on, in March 2020. I remember first feeling ill on March 15: a memorable date, the Ides of March. My wife caught it at the same time and was ill for about a week. I was and very feverish for a good couple of months. That was before the first lockdown, and there were no masks and no tests. During that lockdown my wife, who works in the building trade, was furloughed and I spent most of the time in bed ill.
CS: How did your long COVID develop?
SW: A few months after my first infection I started feeling better and went back to training as a counsellor. We came out of lockdown, went on a low-key holiday in the UK and my training course went back in person. But I noticed that I was getting more and more fatigued if I had to do any walking, for example from the car park to my college. Now, I date my long COVID from when I first caught COVID, but that wasn’t what it felt like at the time.
Symptoms and drugs
CS: How have your symptoms fluctuated over the years, and what is it like now?
SW: I have a kind of baseline of ‘bad’, but if I get another infection – it could be a COVID reinfection or a cold – it always makes things worse. I have gradually had to give up things I enjoyed such as driving and reading. I used to review a lot of books, but now I can’t concentrate on a book for more than a few minutes or watch much TV because it’s too noisy. I have to walk, because I have dogs, but I can only walk very slowly. My long COVID fatigue is not just physical but mental. I wrote a bit in my last article about depression and other symptoms arising from an inflammation of the brain that is one of my key problems.
CS: Have you found any useful drugs that can help with the symptoms?
SW: Only once. I was recommended to try an antihistamine called loratadine [which is prescribed for allergies]. That improved my symptoms, but only for a couple of months.
Help and support
CS: What support services have you been offered from the NHS?
SW: I was referred to an NHS Long Covid clinic, but it took about a year for me to get through the referral process. And once I was through it, the services I was offered were pretty poor. I have never seen anyone face to face – everything has been on Zoom – and as there is nothing offered on the NHS for long COVID itself, it’s just symptom management. They aim to help you to control the various symptoms that you have, many of which overlap with other chronic illnesses – so these services were there anyway, and now long COVID patients are being signposted to them.
The first service I was offered was the HOPE course. This is a generic NHS service for people with chronic illness, which aims to teach you to manage your condition by, for example, breaking tasks down into tiny pieces and keeping a diary of energy levels. And they also tried to shoehorn in CBT [cognitive behavioural therapy] to encourage positive thinking, which was of course very difficult as I was deteriorating. I was also offered group talking therapy, help with my poor sleep, and a graded exercise routine that was very simple. But it made me ill!
And I was always being asked to fill in forms, keep diaries and whatnot. I couldn’t manage this because I have such problems concentrating. I had to discontinue some of the courses as I couldn’t provide all the information they needed. People with long COVID have similar problems when applying for PIP [personal independence payment] and other benefits: they don’t have the energy to jump through all the hoops.
CS: Is there anything that you’ve found helpful?
SW: Most of the things I have found helpful I have had to go looking for. Like, for example, I was able to get my POTS diagnosed on the NHS – which is usually almost impossible – because of a doctor who I made contact with indirectly via Twitter. I was then able to get a drug for POTS that has helped me a bit, and I know people who the same drug has helped more. Also, I am still seeing the therapist I had when I was training to be a counsellor, and she has helped keep me sane. I would recommend anyone with long COVID to see a counsellor, either privately or on the NHS. So there are things out there that can help, but you need to know how to find them. Or you need to be able to pay.
CS: Do you have any experience with clinical trials?
SW: Not yet, but I’d like to. I was offered one, but I had to turn it down. Last year, a doctor who is following me on social media gave me a private consultation as a birthday present, and that led to my being prescribed another drug for POTS… But that was one of the drugs in the trial, and I didn’t fit the criteria for taking part.
What the rest of us can do
CS: What support would you like to see, and how can concerned people help you and your fellow sufferers in this advocacy work?
SW: You can support organisations like Long Covid Support and Long Covid Kids, which provide really excellent services. I volunteer with them, helping people tell their long COVID stories to the COVID Inquiry through Every Story Matters. You can think more about how society can make space for people with disabilities, which is what I believe long COVID to be. And remember, above all, that COVID is not over, and that it is still airborne. Get air filters installed wherever possible and bring back masks, at the very least into healthcare settings. We really need to value clean air.
