I spend 90% of my time in bed with Long Covid, it’s debilitating – I feel forgotten by the Government, says Cork woman

A WOMAN has told how she has to spend 90 per cent of her time in bed as she battles Long Covid nearly 18 months after she contracted the virus.

Avril Dowling, from Carrigaline, Co Cork, said people like her with the condition feel “forgotten”.

Avril Dowling with son Kieran O’SheaCollect supplied by journalist

Avril says she spends 90 per cent of her time in bedCollect supplied by journalist

She feels forgotten by the GovernmentCollect supplied by journalist

Figures released this year show that over 230,500 people in Ireland have been suffering with conditions associated with Long Covid. 

While a Trinity College study estimated that up to 11 per cent of people who contracted the virus are likely to experience Long Covid.

Avril said she contracted Covid in December 2021 and tried to go back to work, despite still feeling tired. 

However, it soon became clear to her that she was not getting back to health as quickly as other people. 

She said: “I had been delighted with myself that I escaped getting Covid through the whole pandemic for nearly two years and then I got it in the December of 2021.

“But I went back to work at the end of January. Like a lot of people, maybe my job defined me a bit as a person.

“My children are grown up and what I had was my job in finance. I didn’t want to be out sick, so I pushed to go back.”

However, Avril lasted just one week full-time before she had to admit her symptoms made it hard for her to do the same hours as before. The fatigue from the illness was getting worse and after initially cutting down to 21 hours a week, she slashed her hours to 12 a week.

“I was just getting more and more tired, but I wanted to work. It was more for my mental health, I needed to work as opposed to being at home on illness benefits.

“It just continued to get worse to the stage where after four hours working, my eyes would be closing and I would be nervous even driving the 10-minute journey home as I was so tired. 

“I was eventually signed out last November. I thought the rest would help and I’d rebuild my strength and get back to work.

“But I caught a virus and that seemed to exacerbate all my symptoms to the point that I think I am so much worse now than I was at this time a year ago.”

‘PEOPLE DON’T UNDERSTAND’

She continued: “At the moment I spend 90 per cent of my time in bed. People don’t understand what it is like to have Long Covid. To go for a shower and have to go to bed afterwards.

“My arms are affected and I get pins and needles in my hands if I have to hold my hands over my head to wash my hair. 

“The migraines are severe, and I can have sensitivity to noise and light. It also plays with your brain, you can have one set of symptoms one week and the following week it is something different again.”

Avril said the mental side of things was the worst part. She said: “It is like I am taunting myself, if I try harder, it will be easier. I am my own worst enemy. 

“Long Covid is so cruel, it plays with your head, and it is so hard to have a debilitating illness. I have half a life. I would love to do the simple things, like go into Cork and look around the shops. I know that sounds silly but I can’t do that. If I am even brought for a spin in the car, I am falling asleep.”

EXTREME FATIGUE

And she said she can see why people are not too understanding of her condition. 

“Just trying to put it into words is hard. They need a new word to describe it, fatigue just doesn’t explain what it is. Everything changes, physically, cognitively and emotionally. It affects relationships and friendships because you are too tired, and anything emotional floors you. 

“My parents are in their seventies and I always went to see them but now they have to come and see me.”

She added: “It really affects your mental health, it is very hard to stay positive when you are still in bed a year and a half later. We’re not superhuman, it’s really difficult to stay positive to think one day you’ll get your life back and go to work, do ordinary things like go to the cinema, I haven’t been able to do that for so long.”

Avril said most of the day could be spent in the dark. She said: “When you are confined to a bed, most of the time you can’t do anything. Headaches mean you can’t listen to the radio or TV. Lights can affect you, so you could be lying there for hours on end in the dark with your eyes shut.”

CALL FOR HELP

Avril has been getting help at the Long Covid clinic in the Mercy Hospital Cork, which also ran Zoom meetings for those affected.  But plans are now under way to close all Long Covid clinics. 

Avril wants the Government to start taking the problem more seriously. She added: “Nobody knows if you get better or not. Doctors and teams are learning as they go along. I am getting symptoms I didn’t have six months ago. I get over one thing and something new starts.”

Despite a recent upsurge in cases, Covid centres across the country have been closed, meaning people have to buy antigen tests.  But Avril doesn’t feel they are 100 per cent reliable and said there should be a way people can get tested clinically. 

“Otherwise, people will just start continuing their lives as if they have a cold. How many people out there are vulnerable? You can’t look at someone and know they have Covid. You can look well and inside be crumbling. It’s so dangerous.”

She is calling on the Government and the public to be more sensitive to those who have contracted Long Covid.  She said: “I feel there is very little understanding out there and the Government have forgotten it too, nothing has been spoken about in so long. 

“There are people who were in healthcare who spent their days saving lives and now have Long Covid and they have been abandoned. It is a very sad state of affairs. We feel forgotten.”

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