Lingering health problems are making life a misery for people infected by Covid-19 and who failed to make a sustained recovery.
Membership of a new support group has jumped to more than 400 as it provides solidarity and focus for people who had seemed at first to be recovering, only to succumb to ongoing illness several months after being infected.
While most people who recover from coronavirus infection return to normal living, recurring health problems are bedevilling the lives of a group of survivors throughout the country.
Some people felt isolated and lonely when it seemed they were not being believed or taken seriously when they spoke of strange symptoms that flared up after a period of recovery.
Covid Cases Support Group Ireland was set up by Claire Twomey (33), who has a variety of symptoms, including devastating fatigue, headaches, coughs and rashes. Some of these symptoms have recurred for several months since she first became infected.
Palpitations and gasping to breathe are among the other symptoms experienced by many of the group members.
The Facebook page she set up for people with similar experiences has seen a rapid rise in membership.
Membership is confined to those with lingering symptoms and to family members of those affected.
Relief has been expressed by members, who said it was hugely important to them that they no longer felt they were the only ones enduring a prolonged illness which has made it impossible for them to return to work or resume normal activities.
They expressed hopes that they will eventually break free from a variety of after-effects of the infections.
Among those who spoke to the Sunday Independent were Claire, a social care worker from Ashbourne, Co Meath, a nurse in a major Dublin hospital named Jacqueline, and Ron Lawrence (58), a quality manager for a scaffolding manufacturer in Leixlip, Co Kildare. We have paraphrased their stories in today's paper.
Many people with lingering symptoms have spoken of feeling unsupported and misunderstood.
Claire and Jacqueline said they are both receiving follow-on monitoring and treatment in hospitals in Dublin and they are grateful of the support they are getting.
There has been growing evidence around the world that coronavirus has resulted in chronic, persistent infections in certain cases.
Sometimes these persistent infections can occur in places in the body that may be less accessible to the immune system and where it is difficult to eradicate all viral infections.
The group members are finding strength in learning of the experiences of other survivors.
All of them continue to hope that they will return to full health and get back to living an active and normal life as soon as possible.
'I felt like a freak but discovered others in the same boat'
TIRED: Ron Lawrence, who is recovering from Covid-19. Photo: Mark Condren
Ron Lawrence (58), a quality manager for a scaffolding manufacturer living in Leixlip, Co Kildare, became ill with Covid on March 18. He lives with his wife Neasa and their 15-year-old daughter. This is his story:
"I became ill on March 18 when I began to suffer with a fever. I telephoned a doctor and I was told to isolate myself in the house. The fever went, but I developed a cough.
"I was informed I was one of 40,000 on a list to get a Covid test, but four days later I was told that the tests were being allocated instead to health care workers.
"I stayed at home in isolation for two weeks and it was like being in a cell. When the two weeks were over, I went out and painted a wall and I got pneumonia.
"I was suffering from a pain in my back, shoulder and chest. A doctor I contacted was reluctant to see me. I was prescribed tablets over the phone and I was ordered back into isolation.
"When I was finally examined by a GP, I was sent by ambulance to Blanchardstown Hospital. I was given tablets in the hospital and sent home.
"When I finally got a Covid test it was negative because too much time had passed. Three doctors and a consultant told me that all the signs were that I had picked up a Covid infection.
"In the weeks that followed, I was ill and suffering hallucinations. One night I felt at a very low ebb. I eventually ended up as a patient in hospital.
"I later got a CT scan, an MRI scan, a chest X-ray, and a lumbar puncture.
"At one point I had been on a Covid ward and then I was placed in a normal ward. I was 11 days in hospital and got out on May 4.
"I then enjoyed two weeks of good health and my brain felt clear.
"On May 24, I went for a walk and became so breathless I had to sit down. Since then, I have had difficulties with breathlessness and heart palpitations. I have headaches and I have developed sores on my head.
"This virus has slowed up my thinking. It has slowed down my speech. I have had two tests for dementia and I passed both of them.
"At the moment I am really tired all the time and I have been vomiting and suffering headaches.
"I have more bad days than good. X-rays show that my left lung has scar tissue caused by Covid.
"I was ill so long after getting Covid that I have thought that I must be some kind of a freak.
"When I tell some people that I am still sick after Covid, they scarper. A local person jokingly brought me a Mass card and that certainly did not make me happy.
"I am going to try and beat this virus and I am receiving counselling.
"I hope they find a cure and I hope that all doctors listen to their patients.
"I was very encouraged when Claire Byrne spoke openly about her own experiences with Covid.
"I am so glad that Claire Twomey set up Covid Cases Support Group Ireland. I think it is very important to know that others are in the same boat.
"People must stay as vigilant as ever to avoid this virus even when there is no lockdown.
"The members of the Nphet committee have done a tremendous job to protect the Irish population. And I feel that, while mistakes were made, the Government has done a good job overall.
"I hope that one day soon the scientists and medical researchers find a vaccine for this virus and discover a cure for those already afflicted. The world needs to be rid of this once and for all.
"What annoys me is that the government figures say there have been 26,000 people infected with Covid. I guarantee you the true figure must be 100,000."
Visit our Covid-19 vaccine dashboard for updates on the roll out of the vaccination program and the rate of Coronavirus cases Ireland
Claire Twomey (33) tested positive for the coronavirus at the end of March
Claire Twomey (33) tested positive for the coronavirus at the end of March. She explains:
"My parents Joe (65) and Nora (60) were both infected with Covid-19. My mother's condition worsened and she ended up in critical condition in intensive care at the Mater Hospital. We were extremely concerned for her. Thankfully, she was finally able to return home after four weeks. She continues her recovery at home. My father still suffers from fatigue.
"As I had brought my parents to the hospital, I was tested, too, and I was positive. Myself and my father were monitored at home. At that point I did not have the usual symptoms but I had ferocious migraine and bad sinus pain. I lost my sense of taste and smell.
"After the first couple of weeks, I slowly tried to get back to my usual routine of running and yoga but I was having trouble breathing. I got tired after completing simple household tasks.
"I am a trained life-coach and I was hoping to resume my job as a social care worker. I attempted to return to work but it aggravated my symptoms and I ended up with a fever lasting four weeks. I continued to feel completely lethargic and I still suffer coughing fits.
"My parents continued to recover but I felt isolated and thought I might be the only person who was not getting better. I set up the Covid Cases Support Group because I believed I couldn't be the only one, and I wanted to know what I could do to help myself to get better.
"Members of the group told me they had not been able to talk about feeling isolated in their struggle. Covid starts with isolation. For those who struggle to recover, they are still experiencing isolation.
"Our group brings people together online and is a powerful way to share your story with someone who knows exactly what you are going through. The group is secure and safe and helps them realise there are other people out there like them.
"It would be beneficial if there were Covid recovery centres set up to give support for the many areas of illness people experience. People are struggling to recover in their own homes and are doing a lot of work sourcing supports while others are sitting on waiting lists."
Nurse - I've chills and brain fog
Jacqueline is a nurse at a major Dublin hospital. Married with two sons, she became ill on April 17. Here is her story:
"Our hospital had a number of Covid patients and I remember I began to feel a bit off in work. That night I woke up at home with a very high temperature and an unusual headache. I knew immediately it was Covid.
"I spent two weeks isolated in the bedroom with food being left outside my door. My sons, aged 10 and 12, would speak to me through the door. I don't remember much about those two weeks as it seems like a hazy dream. I suffered occasionally from shortness of breath. At the end of the two weeks, it was like a celebration when I finally left the room. I felt well and at the end of the third week I was headed back to work. I am usually very fit and I decided to go for a walk in the park before going to work. But I ended up in the A&E department because I could not breathe and became quite distressed.
"I spent five to six hours in A&E before being sent home. They checked bloods and an X-ray and told me it might just be anxiety. Although the doctors were good, I felt dismissed.
"I began to experience a lot of recurring pain in my back, neck, hip and wrist. The pain felt like it was inside my bones. I was overcome frequently by a profound fatigue. I would have to sit down for hours and wait for it to pass.
"My concentration went. I was finding it very difficult to find the right words when speaking. There were weeks when I did not drive. I would be driving along and then realise I had completely forgotten where I was going so I would turn around and go home.
"I continued to have memory lapses and would completely lose my train of thought. It is like a brain fog. My whole body got chills and feelings of numbness. I find myself gasping for air regularly.
"In a typical week, I would have five bad days and two good days. My last relapse lasted 10 days. I've just had four really good days but I fear a relapse is just around the corner.
"My sons have been very good and some of their summer days are taken up with doing chores that their mother normally does. I drove my son to the playground and he asked me if I was too weak to push a swing.
"I am an assertive person and I feel I have to fight every day for people to listen to what is happening to me. At times, I feel I am not being believed. My husband is very supportive.
"I am glad I am now being seen by a team in St Vincent's Hospital and they make time to listen.
"I have not been able to return to work yet. I'm grateful I have support in work. I sometimes wonder will I ever get back to my own baseline of a fit and active life which I wish for. It causes me a lot of worry and distress. I am doing all I can to heal myself.
"I am very grateful to Claire Twomey for setting up Covid Cases Support Group Ireland. It has been a big help.
"Unfortunately, Covid was first portrayed as an elderly person's illness and some people still think if they get it, they will be OK in a while. Thinking like that can be a big mistake."
