‘I get out of bed feeling like an 80-year-old man with zero energy’ says long Covid sufferer
Since being diagnosed with long Covid, John Cairns, 43, from Comber has been on an embattled journey for relief. He tells JOANNE SAVAGE why the Department of Health needs to do more to help the estimated 22,000 grappling with long Covid in Northern Ireland
John Cairns, a 43-year-old operations manager for a distribution company in Belfast, contracted Covid in January 2021, before the vaccine rollout.
The devoted husband and father of three, who is originally from Scotland but moved to Northern Ireland 13 years ago after the birth of his first son, developed a cold and cough initially and a PCR test confirmed his diagnosis.
“I wasn’t feverish, but I was coughing all the time and at night I was struggling to sleep because of this incessant cough. I began to have breathing problems and attended A&E at Ards Hospital near where I live in Comber and was subsequently referred to a respiratory specialist but I have still not been seen and remain on a waiting list.
“My symptoms continued through March, April and May and I began to realise that I wasn’t getting any better, even though as a 43-year-old with no underlying health problems I had been initially certain that after a period of rest and isolation I would be back on my feet again quickly.
“I began to develop serious aches and pains, particularly muscular problems and severe back pain. I now feel tired all the time and get up in the morning feeling like an 80-year-old.
“After a consultation with a private doctor it was confirmed I was suffering from long Covid and I have not been able to return to work since January 2021. It has been the worst year of my life and I don’t feel like myself anymore.
“I have to pace myself and plan my days and can do very little because of the overwhelming tiredness. So on a typical day I might be able to do the school run, then have to rest up after that, maybe go for a short walk or on a Saturday take my son to watch him play rugby. But even that tires me out and afterwards that’s me in the house for the rest of the day.
“As an operations manager I had only had something like four sick days off in 20 years with the company I work for, and now I can only walk short distances and have so little energy. This has completely transformed my life and as time has gone on it has become very difficult to stay positive psychologically and not feel frustrated as I have seen no real improvement in my condition.”
John has tried a variety of techniques to eradicate the burdensome fatigue that plagues him, including acupuncture, physio, yoga and taking various vitamins and supplements, but none of these have produced a significant difference with his mobility or energy levels.
He was eventually able to take part in a long Covid course organised by local charity Northern Ireland Chest Heart and Stroke, which focused on breathing exercises, fatigue management, learning how to structure and plan one’s day, how to establish a workable routine, the importance of sleep hygiene and good nutrition, although for him the best part of this Zoom initiative was being able to meet others suffering from long Covid who have a first hand understanding of what he is going through.
Last November, in response to the estimated 22,000 people in Northern Ireland suffering from long Covid across the province (around 1.3m in the UK as a whole are said to be struggling with the condition that is still only embryonically understood by scientists and medics with symptoms ranging from brain fog to heart and gut problems and a panoply of others - somewhere in the region of 200 different symptoms of the condition have been recorded), health minister Robin Swann finally announced the opening of long Covid clinics that are now operational across all five health trusts, with what the British Lung Foundation has called a wholly “inadequate” investment of 1m.
“I got an assessment just before Christmas as part of a long Covid clinic with an occupational therapist over Zoom. She was a lovely lady and spoke to me for over an hour. But she said because I had been so proactive in trying to find solutions and ways to manage this she was unsure what the NHS could really do to further help me in my recovery.
“I’m desperate for trials of medicines to be done that might be able to help me, but I honestly feel at a bit of a loss because it seems that treatments for long Covid that are effective are not really currently available here beyond advice on managing fatigue, breathing exercises and the like. I definitely think more needs to be done to assist the significant number of people who are struggling with what I have certainly found to be a massively debilitating condition.
“At the moment I have been referred to what is called the Conditional Management Programme (CMP). I’ve spoken to people on this and it sounds similar to Northern Ireland Chest Heart and Stroke’s Taking Control Programme, and actually, from what I’ve heard, it’s other long Covid sufferers who have been coming forward with ideas to share with others including the medics on how this condition can be managed and lived with day to day.
“But I feel like with no medications and limited treatments it’s more or less about teaching people how to live with it which is a less than adequate response.
“I would like to see more investment in this and more engagement from the health minister and the Department of Health in assisting people with long Covid whose lives have more or less been upended by a condition that is still only really beginning to be understood and from what I understand can involve a very serious range of symptoms which for some people can amount to a long-term disability.”
In his increasing frustration John also contacted local mental health charity Aware NI and completed a course called Mild Depression which proffered techniques on managing low mood which one can imagine is a natural consequence of the massive energy drain, overwhelming fatigue and other life-changing symptoms associated with the condition.
“My mood was plummeting because I was getting no help and no support,” said John. “My GP had put me on a waiting list for help with chronic illness. But I still hadn’t been seen and saw a Zoom six-week course with Aware NI advertised on Facebook, which I did find beneficial. It gave me some ideas about how to improve my negative thoughts and how to sleep better. It’s given me more educational tools on how to handle this, but at times I still feel as though it is really just too much. It’s easier said than done. Long Covid patients need proper treatment and recovery plans that will actually make a tangible difference.
“The Department of Health must urgently stand up and do more.”
John has talked about the pain of how his deterioration has negatively impacted his family.
“I mean people see me at the school gates leaving my children off, and they look at me and see me there and think ‘He must be OK’ because you can’t see this kind of illness, but I am far from OK.
“My wife, who works in the NHS and distributes vaccines, has been amazing, and I just don’t know where I would be without her or my children. They are the ones who keep me going on my darkest days.
“Here, I am, I just turned 43 or New Year’s Eve, I want to be back at work and looking after my kids. But my energy is so low, and you don’t know what I would give just to take one of my sons out for a game of golf.”
He added: “Long Covid has robbed me of the life I had before and I hope that by sharing my story other people will realise that they are not alone in this.
“So many people here are suffering with long Covid and my message to the health minister Robin Swann is that we need to see more funding for long Covid clinics and more research into the condition that is now responsible for ruining thousands of lives across the province.”