"Former military man Gavin, a chief operating officer from Sussex, was fit and healthy when he caught Covid in March 2020. The 60-year-old soon found himself in hospital with breathing problems, sedated on an intensive care ward on ventilator and attached to a dialysis machine for his failing kidneys.
"Five weeks later he was moved to a normal ward for a week before being discharged home, having lost 18 per cent of his body weight. “I looked a bit like Tom Hanks on Cast Away and had the vacant look some call the thousand-yard stare. But I felt a huge relief for just being alive and home”.
"It took Gavin six months to get used to being at home, to walk to the end of the road, to get upstairs on his own. The NHS sent physios, home care, and the SALT (speech and language therapy) team to help him learn how to swallow and eat again, and he felt like he was getting better. But then his progress ‘just stopped’. He had difficulty breathing, aching joints, crashing severe fatigue, new lumps on knuckles and interrupted sleep that made him feel he had aged 20 years.
“At the start of 2021, like many areas of the country, long Covid clinics didn’t yet exist where I lived, and while I was part of several clinical trials, they were getting more information from me than I was from them. It was then that I realised if I was going to get better it would need to be through my own devices.”
"He tried a breath coach, physiotherapist, acupuncturist, an osteopath, and herbalist. He also found out his microbiome was severely affected and depleted, and trying to improve that he feels has been a vital part of his recovery path. “Finally, I was referred to a clinic, but they said that they didn’t have much else to offer me, but before discharging me they referred me to the ENO Breathe programme set up for people like me.”
"Thanks to this programme he felt that 18 months after leaving hospital he was learning how to breathe again. Slowly he found he was able to build up his exercise and stamina, and do short sessions at the gym. It took him two years to get from kneeling push ups and lifting a bar to bench pressing just shy of his body weight. Now he can manage 90 minutes in the gym, but it can take 30 minutes to recover if he runs for a train; some joints remain misshapen and painful, and tendons seem to damage more easily, and he does daily breathing exercises.
"Gavin also feels acupuncture has been key in aiding his continued recovery and feels he is now up to 95 per cent back to how he was pre-Covid. “I have not recovered to my former self, but I have found a new, different me, and in many ways a stronger self. The last few years have led me to reconsider the direction of my life – I now have a much better balance of work (less) and life (family, exercise, learning, volunteering – more), and am coming into a sense of contentment much deeper than the transitory happiness I used to seek…. a much better outcome than any I hoped for back in 2020”.
"Dana, a 42-yrear-old calligrapher from London,was a fit and healthy teacher when she contracted Covid in March 2020, with no risk factors for severe disease. As a mother of four children (aged four, six, nine and 12), life was permanently busy. She attended A&E on six occasions, with breathing difficulties, palpitations, and extreme muscle pains in chest and legs that made it difficult to stand or walk.
"She spent most of her days the next few months in bed, getting up for short periods to spend time with her family, but returning to bed exhausted and in severe pain. Her husband, took over everything in the household. Recovery was hindered by the development of serious digestive issues and food intolerances. Only able to tolerate minimal amounts of food because of the excruciating pain food provoked, she dropped 6kg to 42kg (under seven stone).
"Referred to her local long Covid clinic, she was seen by a doctor, and physiotherapist who showed her gentle exercises to keep her muscle function and help regulate her disordered breathing, but she felt they had little to offer her, and just the effort of getting to the clinic was deleterious: “It was too early on and no-one knew what to do – it felt I was just being used for research”.
"Things slowly started to improve but she wasn’t well enough to return to work as a teacher, and realised it was time to rethink what might be doable. Having been a calligrapher, she decided to set up a calligraphy business, and started classes that could help people with recovery. Currently she is doing a MA in Art Therapy, and feels that she is now on the right path.
"Is she fully recovered? “I still have some minor issues, with breathing and some other things, but I am able to fully function and do normal activities, and accept that this is probably the new ‘normal’ me. Acceptance has been key for recovery.”
"She has a friend in her 20s who’s just been diagnosed with long Covid, and says “it’s so important for people to understand that there is a way out of this, but it’s very possible to come out fine. Having that hope aids recovery, and holding on to the knowing that it will be ok. Time has been the greatest healer”. Her advice would be to “find a creative outlet (she took up knitting as it required minimal muscle movement and energy), and laugh as much as you can”.
"Since getting better she’s taken up tap dancing…both for the exercise and learning the movements has really helped with brain fog. “Somehow you need to feel relevant, to have hope and something to look forward to, something that brings you joy”.
"Aiden, a 68-year-old operations director from London, was previously fit and well before catching Covid. The ex-rugby player regularly worked out at the gym where he could comfortably outpace many half his age.
'Infected early March 2020, he felt really unwell, with no appetite and totally wiped out to the point that he could barely get out of bed, but no cough, shortness of breath or temperature. Sixteen days later he was admitted to hospital struggling to breathe and with very low oxygen levels. Moved straight to a high dependency unit for non-invasive ventilation, over the subsequent 24 hours he failed to respond to treatment and his family were rung to say he was deteriorating rapidly and to expect the worst.
"He was one step away from being ventilated on ITU. Nine days later he had stabilised, was given a short trial of normal oxygen, rapidly discharged home as beds were at a premium, and told he was lucky to be alive. He was three stone lighter. At home he could barely get up the stairs to bed, having to rest half way up and again when he reached the top.
"Getting to the bathroom required 15 minutes of effort and rest. But by July he was back in the office part time, cycling the 10 miles to Waterloo station, with lots of stops to rest and catch his breath on route, before getting his usual train. Over the subsequent months, his stamina and breathing improved, and his brain felt like it was functioning again.
"However, in November 2020 he felt really ill again, despite no further Covid, or other, infection. His shortness of breath and brain fog recurred, he worked more from home. By April 2021 he was improving again, and he started having phone consults with his local long Covid clinic. Eventually he was seen in person and a CT scan of his chest confirmed the damage and scarring he had to both his lungs from Covid.
"In early 2024 arthritis exploded in various small joints. He had mild pre-existing osteoarthritis in both his little fingers from years of repeated hand injuries during two decades of regular rugby, but this was something new and unprecedented.
"He has found that everything is now blamed on age by the doctors he sees…but he thinks everything has changed since getting Covid. Only a few weeks ago he was admitted again with breathing problems.
"The breathlessness limits one of his favourite pastimes – for years he has been a regular at Friday night Karaoke at his local pub, belting out Def Leopard in his deep baritone voice. Nowadays he has to suffice with more sedate jazz numbers, but “at least I’m still able to be there singing”.
“It feels like my body has fallen off a cliff. I’m not what I wanted to be at this stage of life, and the level of acceptance needed can be very hard to swallow. Many of us with long Covid can function to a good level but are a million miles away from where we expected to be, but it’s better than the alternative. I wake up in the morning, and think of all those people who didn’t make it.”
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