‘I get out of bed feeling like an 80-year-old man with zero energy’ says long Covid sufferer

John Cairns has not been able to return to work since contracting Covid in January 2021 and insists we need more research into the range of symptoms now associated with long Covid. For John, overwhelming fatigue and severe pain have left him unable to function normally

John Cairns, a 43-year-old operations manager at a distribution company in Belfast, contracted Covid in January 2021 ahead of the vaccine’s launch.

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, initially developed a cold and cough and a PCR test confirmed his diagnosis.

“I didn’t have a fever but I was coughing all the time and at night I had trouble sleeping because of this incessant coughing. I started having breathing problems and visited the emergency room 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 am on a waiting list.

Register to our public interest bulletins – get the latest news on the coronavirus

Register to our public interest bulletins – get the latest news on the coronavirus

“My symptoms persisted through March, April and May and I began to realize that I wasn’t getting better, although as a 43-year-old with no underlying health issues, I was initially certain that after a period of rest and isolation I would be up quickly the legs.

“I started to develop serious pain, specifically muscle problems and severe back pain. I feel tired all the time now and get up in the morning like an 80 year old.

“After a consultation with a private doctor, it was confirmed that I have been suffering from Covid for a long time and have not been able to return to work since January 2021. It’s been the worst year of my life and I don’t feel like myself anymore.

“I have to schedule myself and plan my days and I can do very little because of the overwhelming fatigue. So on a typical day I might be able to do the school run and then need to rest, maybe go for a short walk or take my son to a rugby match on a Saturday. But that also makes me tired and after that I’m indoors for the rest of the day.

“As a manager in 20 years at the company I work for, I’ve only had about four sick days and now I can only walk short distances and have so little energy. This has completely changed my life and over time it has become very difficult to stay psychologically positive and not get frustrated as I haven’t seen any real improvement in my condition.”

John has tried a variety of techniques to get rid of the annoying fatigue that plagues him, including acupuncture, physical therapy, yoga, and taking various vitamins and supplements, but none of them have made a significant difference in his mobility or energy levels.

He was eventually able to attend a lengthy Covid course organized by local charity Northern Ireland Chest Heart and Stroke, which focused on breathing exercises, managing fatigue, learning how to structure and plan the day, establishing a workable routine and the importance of Sleep hygiene and good nutrition, although for him the best part about this Zoom initiative has been meeting others who have been suffering from long Covid and understanding first hand what he is going through.

Last November in response to the estimated 22,000 people in Northern Ireland who fell ill with long-term Covid across the province (around 1.3million in the UK total are thought to be battling the disease, which scientists and medical professionals with symptoms are still only… understood in the beginning from brain fog to heart and gut problems and a multitude of others – somewhere in the region of 200 different symptoms of the disease have been recorded), Health Secretary Robin Swann finally announced the opening of long Covid clinics, which are now in all five in operation are health trusts, with what the British Lung Foundation has described as a totally “inappropriate” investment of £1million.

“I received an assessment via Zoom just before Christmas as part of a long Covid clinic with an occupational therapist. 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 deal with this, she was unsure what the NHS could really do to further help me in my recovery.

“I’m desperate for drug trials that might help me, but honestly I’m feeling a bit at a loss because it seems treatments for long Covid that are effective aren’t really available here at this time without advice on how to deal with fatigue, breathing exercises and the like. I definitely feel that more needs to be done to help the significant number of people who are struggling with what I have certainly found to be a massively debilitating condition.

“At the moment I was referred to what is called the Conditional Management Program (CMP). I’ve spoken to people about this and it sounds similar to Northern Ireland’s Chest Heart and Stroke Taking Control program and in fact from what I’ve heard it’s other long ill Covid people who have come forward with ideas to share with others, including the medical community, on how to manage this condition and live it in everyday life.

“But I feel like without drugs and limited treatments, it’s more or less about teaching people how to live with it, which is a less than appropriate response.

“I would like to see more investment in this and more commitment from the Secretary of State and the Department of Health to help people with long Covid whose lives have been more or less turned upside down by a condition that is still not really understood and by what I understand can involve a very serious set of symptoms that can lead to long-term disability for some people.”

In his growing frustration, John also contacted the local mental health charity, Aware NI, and completed a course called Mild Depression, which presented techniques for dealing with bad mood, which one might imagine is a natural consequence of the massive Loss of energy, the overwhelming fatigue and other associated life-changing symptoms are a prerequisite.

“My mood dropped because I wasn’t getting help and support,” John said. “My family doctor had put me on a waiting list for help with chronic illnesses. But I still hadn’t been seen and saw a 6 week Zoom course with Aware NI promoted on Facebook which I found useful. It gave me some ideas on how to improve my negative thoughts and sleep better. It has given me more educational tools on how to deal with it, but sometimes I still feel like it’s really just too much. It is easier said than done. Long Covid patients need proper treatment and recovery plans that actually make a noticeable difference.

“The Department of Health urgently needs to step up and do more.”

John has spoken about the pain of how his decline has negatively impacted his family.

“I mean, people see me at the school gates and let my kids go, and they look at me and see me there and think ‘He must be fine’ because you can’t see that kind of disease, but I’m way off from being okay.

“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’re 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 go back to work and take care of my kids. But my energy is so low and you don’t know what I would give to take one of my sons to a golf game.”

He added: “For a long time Covid has robbed me of the life I had before and I hope by sharing my story other people will realize they are not alone.

“So many people here are suffering from long Covid and my message to Health Secretary Robin Swann is that we need more funding for long Covid clinics and more research into the condition that is now responsible for killing thousands of lives across the province to ruin. ”

Leave a Comment