By James Ward, PA
A woman who was among the earliest Covid cases in the country is still experiencing intense symptoms one year after her diagnosis.
Aoife Moore, 38, a mother-of-two from east Galway, is one of thousands of people across Ireland suffering from what is known as “long Covid”.
Her life has been upended since she first began experiencing symptoms, before St Patrick’s Day last year.
She said: “Make no mistake about it, if you get long Covid, it’s going to affect every facet of your life.
“It affects every single part of you – your mental, your emotional, your physical, your financial, your relationships.
“You feel so alone, you feel like nobody else gets this. The medical community aren’t providing any help because they don’t know themselves.”
Ms Moore is an activist who has worked on numerous campaigns, including for the pro-Choice movement and Direct Provision. She is a manager to the author Erin Darcy and stay-at-home mother to her daughter Aibhlin, five, and son Diarmuid, three.
“I was the kind of person who is constantly busy, constantly doing something, involved in plenty of different things.
“Unfortunately I’ve had to give pretty much all of that up now,” she told the PA news agency.
Everything changed when she got her positive Covid diagnosis last year.
She said: “I started feeling really unwell. I was very cold and I just could not get warm. I just couldn’t regulate my body temperature. The way I describe it is like your lungs are being grated. It was like nothing I have had before.”
While her condition has improved since then, Ms Moore is still dealing with a range of symptoms including chronic fatigue, severe coughing, difficulty concentrating, inflammation, swelling, mouth sores and various aches and pains.
“I constantly feel like I’m being knocked back and knocked back. It’s really hard,” she said.
“The worst one would be the chronic fatigue. It’s a whole body thing. Your head is too heavy to lift off the pillow. Your arms are heavy and so are your legs.
“I would get that on top of my symptoms. So I had to try and find a balance between doing too much and doing too little.
“If I did too much, I’d be in bed for up to a week if I pushed myself too far. I would not be able to get out of bed.”
The cough that came with her initial diagnosis has never left.
She said: “The cough stays with you, it doesn’t ever go. The way I describe it is I feel like I have two knots in my chest, in my lungs. They’re constantly there and sometimes they’re more aggravated than not.”
One of the biggest impacts long Covid has had is on Ms Moore’s family life, particularly for her husband Kerill.
She said: “My husband is effectively my carer. He looks after the house. He’s a software engineer and he works from home.
“On top of that he looks after the kids. He’s basically almost like a single parent in one respect because my ability to physically do things is hugely impacted.
“I can’t lift the kids from a standing position. I can’t bath them. I can’t do simple things like getting their dinner together.
“From day to day I have to assess what my energy is like. My energy dictates my ability to do anything. I constantly have to prioritise and make choices.
“If I decide I’m going to go for a shower, that might be my activity for the day. That means I can’t do something else.”
Her son Diarmuid was diagnosed with autism last year, and she fears he has regressed as she is unable to give him the same level of attention as before.
“Mammy was there all the time, I was kind of his main person. The next thing I get sick, I’m in bed and he can’t come in to me. I’ve just disappeared from his world.
“That was really hard. He kind of regressed for a while,” she said.
Professor Danny Altmann, from Imperial College London, said last month the number of people suffering symptoms of Covid-19 weeks after their diagnosis could be as high as 20% of those who get the virus.
He has called for long Covid clinics to be opened across the UK, and Ms Moore wants the Irish Government to do the same thing.
She said: “We need clinics that aren’t just based in Dublin or Cork. They have to be nationwide, they have to be available to everybody across the country. We need these centres that aren’t urban-centric.
“I know we’re getting the vaccine. It doesn’t mean that this is going to go away. We don’t know how long we’re going to have this for.
“Surely somebody can do something, surely someone with better knowledge than us can do something about it.”
The group Covid Cases Ireland has been a source of support for Ms Moore. It now has 1,600 members across the country and has petitioned Government for stronger support.
“That’s the one support, the one good thing. You feel like we’re all in the same boat together,” she said.
She said she believes long Covid is a result of the virus lying dormant in her body.
She said: “When you have long Covid, I do honestly believe that it’s still somewhere in my body, dormant. And when I get run down, that it activates and you get a relapse.
“You get the symptoms and you think ‘Oh God, this is what it felt like at the start’.”
A spokesperson for the HSE said: “Specific guidance on what has been referred to as the ‘long-tail’ is presently under development both here and internationally.
“People who have had Covid-19 are being followed up by their doctors as appropriate – this is usually their GP and in the case of those who required hospitalisation and/or ICU admission, this is hospital-based.
“Longer-term observational studies will be required to understand the health consequences presently being attributed to post-Covid-19 infection.
“The HSE has been in touch with and will be engaging a group of people who are suffering post-Covid symptoms.”
It added: “A national approach to long Covid is currently under consideration.”