A long Covid sufferer has told how the virus has robbed her of her former life and left her a prisoner in her own home.
Grandmother-of-three Miriam Cullen first caught the virus in March 2020 and has not been able to return to work since. The 62-year-old, from Walkinstown, needs a ventilator to help her breathe and has been diagnosed with a brain disorder.
She said: “I was so active with my grandkids and work. I’m in a yukelele band and there was rehearsals and a social life around that. I would consider myself now just 30 per cent of what I was. It breaks my heart. I didn’t even realise how much I was grieving for my lost life.
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“I can’t go out. I can’t walk far because my breathing is very bad. I’m just getting over pleurisy. The other evening was lovely and I said, ‘I’d love nothing more than to go to Dun Laoghaire and walk the pier and have a cup of coffee’.
“But I can’t do that. I have no energy, the coughing is horrendous – dry retching, headaches. I’m in a situation now that I might have to talk about using a wheelchair outside the house.”
Miriam has had her own childcare company for 22 years but her business partner has run things since she got Covid over two years ago. When her illness persisted she went to A&E three weekends in a row but medics, who were still trying to get to grips with a new virus, could not help her.
She said: “I was very, very sick. I had chronic respiratory issues, chronic cough, huge fatigue, body tremors. The only criteria for admission was low oxygen levels, so I was deemed to manage at home.
“I said to my husband one Sunday morning, ‘I’m going to have to say this out loud, I’m in a very dark place’. I felt I couldn’t carry on like this. I was very frightened about how I was feeling.”
Miriam explained her mental struggles to her GP and was prescribed medication and psychotherapy sessions funded by the HSE via mymind.org. Months later, she was diagnosed with Functional Neurologial Disorder, which affects how the brain and body send or receive signals.
Symptoms of FND can include limb weakness and seizures.
Miriam added: “I had upper body tremors for ten months before I even said anything. I had pains in my joints, quivers, pains in my arms, dropping things from my hands, couldn’t hold a pen.
“With FND you do mad things. I thought I was buttering the bread one day at the counter and I was actually using the knife like a hair brush. So I was buttering my hair. My husband said, ‘Do you realise what you are doing there?’”
Miriam, who is a member of Long Covid Support Group Ireland, made a written submission to the Oireachtas health committee which was delivered last week by Dr Jack Lambert. She called for Long Covid clinics in every county providing physiotherapy, occupational therapy, neurology, cardiology and respiratory therapy. Miriam also wants the HSE to set up a database on Long Covid.
She said: “Long Covid is the great unknown, they don’t have any sort of central information. It affects everyone differently. I got Omicron in February 2022, two years after my first diagnosis, and it affected my eyes.
“GPs are at a loss where to send you. There should be more information on the HSE website, this could save people’s lives. Other countries are listening to sufferers, but it feels like they are not listening here at all.”
Studies show up to 20% of long Covid patients have unexplained anxiety, depression and PTSD, and some turn to alcohol in a bid to cope. In his address to the Oireachtas, Professor Lambert, consultant in infectious diseases at the Mater Hospital, told how “brain fog” was the most persistent symptom of Long Covid.
He said: “Early on it was my clinical observation, and also the observation from review of the medical literature, that the brain was the primary target of Long Covid.”
Dr Lambert explained many long Covid patients are still “disabled” a year after catching the virus, and he called for an awareness campaign after claims some patients were exaggerating. Primary school teacher Claire Browne, 33, got Covid in June 2021 and though she returned to work in September she has since had to go on a three-day week.
She said: “It was when I got my mid-term break that all my symptoms came back far more severe than before, it took me three weeks to recover from that crash.
“I have never been fully better since. I would say Covid just attacks what is vulnerable in the body and each case is unique. Treatment needs to be tailored to each individual. It’s 13 months on for me, I would say my symptoms are ever-evolving, over-exertion will result in post-exertion malaise.
“On Saturday morning I hung up the washing – suddenly, I was not able to stand, my motor skills stopped working. I couldn’t put two feet in front of the other.
“Another day my heart rate was out of control, I had to lie down and wait for it to pass. Sometimes I get snippets of the old me and it’s so brilliant, but I can’t predict what will happen day to day.
“Living with this invisible illness is a very lonely place.”
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