Long Covid: ‘You think you are making progress...then it rears its ugly head again’

Women the primary sufferers of a condition for which there is no known cure yet

Marcus Stewart and Sue Wrafter with their daughter Sofia (2). The couple caught Covid-19 early in the pandemic and have been suffering bouts of extreme fatigue due to  long Covid since. Photograph: Nick Bradshaw/The Irish Times.

Marcus Stewart and Sue Wrafter with their daughter Sofia (2). The couple caught Covid-19 early in the pandemic and have been suffering bouts of extreme fatigue due to long Covid since. Photograph: Nick Bradshaw/The Irish Times.

 

On March 3rd last year Marcus Stewart and Susan Wrafter found themselves among thousands of travellers at Innsbruck Airport.

Austria had just confirmed two Covid-19 cases and immediately went into a lockdown. Tourists feared they might get stuck.

The couple originally planned to go skiing in northern Italy, but this was cancelled when the region became Europe’s canary in the coal mine of the pandemic. Their alternative holiday in Austria was cut short, too.

Stewart and Wrafter spent 11 hours at Innsbruck Airport waiting for a flight. On the day before they left the Saint Anton am Arlberg resort, an older lady they had met went into hospital with suspected Covid-19 symptoms.

At the airport Wrafter (37), a personal trainer and pharmacist, developed a cough. “I genuinely thought it was psychosomatic. We were so saturated with news of coronavirus,” she says.

When they arrived in Dublin, both were exhibiting flu-like symptoms - a heavy fever and fatigue. After two weeks they thought they had seen the back of Covid-19, but a year on they are still suffering.

Stewart (40), producer of RTÉ’s Eco Eye programme, says the symptoms never really went away.

“We’d be grand for a while and then we would be hit with it again. We don’t get the fever anymore, but we get the extreme fatigue,” he says. “Every time I exercise that’s when it really kicks in. I just hit the wall. I feel and look like death. I’d be up all night sweating vinegar.”

Stewart and Wrafter have long Covid and because Covid-19 is a relatively new disease, sufferers do not know when it is going to end.

Before catching the disease, both had trained as fitness instructors. Wrafter represented Ireland at touch rugby two years ago, but now struggles at times to carry their daughter Sofia (2) up the stairs without becoming breathless. She has been in and out of hospital for the last year.

“There seems to be no rhyme or reason to it. You think you are making progress, you think you are over the worst of it and then it rears its ugly head again.”

Most at risk

Long Covid mainly affects women, according to Prof Frances Williams of King’s College London, who is part of an international team overseeing the Zoe Covid Symptom Tracker App study, which has produced findings about who is most at risk of long Covid.

“Women tend to come forward more readily with symptom reporting, but our work with the Zoe app shows there is an increased risk in women and this is reflected in the fact that women are more likely to get post-viral fatigue,” she explains. “Fatigue and chronic pain in women can be a factor in long Covid and the menopausal symptoms don’t help that as well.”

Williams says it is difficult to get a statistical handle yet on the prevalence of long Covid in women compared to men as the definition is still evolving. The UK’s National Institute for Health and Care Excellence has defined long Covid as symptoms that persist after three months. The previous definition was eight weeks.

Around 2 per cent of people infected with Covid-19 develop long Covid. It is not a huge proportion, but amounts to around 5,000 people in Ireland.

Stewart says it is a debilitating condition.

“The hardest part is not knowing then it will end or if this is a permanent situation. Myself and Sue both go through phases where we think we’re getting better and improving but then we’re hit again.”

Debilitating sickness

Oonagh Carr (45), who lives in Clontarf, Dublin, picked up Covid-19 last March from her husband, who was working in London at the time. He fully recovered, but she has endured a year of sickness that has required her to take long periods off work.

“After being out of work for 10 weeks I returned in June but had to sign out again in October as I had a bad relapse of symptoms,” she says.

“I have been having extreme dizzy spells (a new symptom) and gastrointestinal symptoms, too. I still have some issues with vision despite having had my eyes checked and the ophthalmologist not finding an explanation for this.”

Tanja Buwalda (46), from Crosshaven, Co Cork, said her symptoms were initially so mild that “it could be confused with anything”. She felt tired and run down, and then lost her sense of smell. Six weeks later she noticed she was out of breath.

“Symptom after symptom started to pile on during the summer. From August to October I was bed-ridden.”

She discovered an online community that had 35,000 people worldwide with long Covid signed-up. She now says she is 70 per cent better, thanks to a cocktail of supplements.

“I have had to come to terms with the fact that I have a chronic illness. My energy levels are very low,” she says. “You have to hope that the science will catch up. They are still learning so much about this disease.”

Anita O’Leary (39), from Thurles, Co Tipperary, had two underlying conditions before contracting Covid-19 last March. She is a coeliac and has an underactive thyroid. She now has another autoimmune condition, Psoriatic arthritis, which she says she developed as a result of long Covid.

Nothing working

Doctors have given her everything they can to help, but nothing has worked.

“I am taking myself off tablets because nothing is helping me,” she says.

She has been offered anti-depressants by doctors but has refused them.

“I have never been an anxious person. I am very much the person who gets up and copes. I have never liked being a victim in my life before, but it is very hard when you are getting to the stage that doctors are offering you anti-depressants.”

Prof Clíona Ní Cheallaigh , an infectious diseases specialist at St James’s Hospital in Dublin, says there is a lot doctors do not know about the disease.

“We don’t understand what causes long Covid at all. Until we understand it, we don’t know how to treat it. It’s a wait and see approach,” she says.

What is certain that it is a disease that primarily affects women of childbearing years.

“That may be a clue as to what is causing it. Some women report that symptoms come with their menstrual cycle and it may be related to oestrogen or progesterone.”