“Need help”-people suffering from long covids

Longcovid can leave people suffering from embarrassing or debilitating symptoms such as chronic fatigue, joint pain, and memory loss. Affected people are screaming for help, Barry O’Kelly reports.

Linda Dalton was staring at her screen vaguely. She was trying to tell her story in a video diary. This is the story of her life over the past year.

But she couldn’t remember what she was talking about.

Not for the first time, Linda lost her memory.

This is one of 200 potential symptoms associated with the protracted effects of Covid, a condition known as Long Covid.

Linda, 46, has been suffering from long covids since having a relatively mild experience with covids in October.

“There are days when I can’t remember the simple things,” she told RTÉ Investigates.

“I said a few minutes ago, this month I even forgot my daughter’s name.”

However, Linda’s worst symptoms are chronic fatigue and severe pain in her joints and upper chest.

One in ten people infected with the virus suffers from long covid. Symptoms and the severity of the symptoms vary.

Until last year, Linda was a taekwondo, avid cyclist, swimmer, and black belt. But Longcovid left her struggling to walk. In a video diary recording her experience in February, Linda was clearly out of breath while explaining the effects of Longcovid.

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“I take morphine three times a day and it doesn’t work. I’m just overcoming the pain here,” she said.

“Each of my feet feels like 100 stones. But I have to keep going. I can’t just sit in bed and give up. But I don’t know what to do.”

Linda is one of the many Long Covid people who recorded their experience at RTÉ Investigates. For each of them, their journey through the healthcare system was a traumatic experience.

The provision of long covid services is not centralized and for some patients the quality of service may depend on where they live.

This zip code lottery means that Linda needs to travel nearly 100 miles from her home in southern Kilkenny to access Dublin’s services.

Back in February, she was still waiting to be seen by neurologists and clinical illness specialists. “I need help. Please help,” she pleaded.

Linda has since been seen by clinical disease professionals. But just last week she was still waiting to see a neurologist.

Her condition seemed to have deteriorated and she walked with the help of her husband Graham.

“I’m very old,” she said. “I find it very useless.”

There is no cure for Longcovid yet. Studies have shown that it can be caused by an autoimmune response to Covid infection.

Patients often require interdisciplinary support because many organs in the body are potentially vulnerable to this condition, which is currently not available outside of many parts of the country, especially Dublin.

However, this can change quickly. RTÉ Investigates understands that HSE plans to set up new hubs nationwide to treat Long Covid.

According to Eoghan DeBarra, a consultant and lecturer at the Royal College of Surgeons, the hub offers interdisciplinary support in each of the eight national hospital groups.

When asked about the plan, an HSE spokesman said, “A national approach to posting Covid or Long Covid has been developed and HSE is currently looking for a position as an implementation leader for the Long Covid Care Model.” Said.

But for now, many patients have to fight to access patchwork for the service. “The service is completely inadequate,” said Aidan O’Brien of the Irish Thoracic Society, who represents a respiratory consultant.

Limited public health information is available for Longcovid. Linda Dalton had to learn some of her coping strategies in a difficult way.

She now realizes that she must limit her physical activity, even when she has a bout of energy.

“If I overdo it, I’ll do simple things like taking a long walk, then I’ll have to sit on the floor and sleep,” she told RTÉ Investigates.

This is a familiar experience for many who use Long Covid.

“This is called post-exercise fatigue. People in Long Covid can relapse if they overdo it. It’s usually an easy task,” said a spokeswoman for Long Covid Cases Ireland, a Facebook campaign group of 2,000 people. The person in charge, Claire Twomey, said.

“But this is the information we had to find ourselves. There is no guidance from HSE and there is very little information on their website about Long Covid.”

“There is no guidance for the GP, no national program has been deployed yet, and the waiting list is very long.”

Asked about servicing the Longcovid people, an HSE spokesman told RTÉ Investigates that “there are a variety of support available in the general practice and hospital environment.”

They said HSE is working on “further development of those supports”.

“Currently, treatment is focused on managing specific symptoms.”

Some of the symptoms of Longcovid can be embarrassing. After signing with Longcovid last March, Eugene Van As lost power with his left hand. He is a large, wide-shouldered man, over 6 feet tall.

But in one video diary, he tried to grab 0.5 pounds of butter. When his hand shook uncontrollably, he was forced to drop it.

Eugene also suffers from trembling feet, blurred vision, and sleep apnea, and must wear an oxygen mask at night.

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It took Eugene over a year to access specialist services in Blanchardstown, western Dublin. He is currently on his way to meet various specialists in November.

When Eugene spoke to RTÉ Investigates again last week, he showed little improvement since he started recording his diary seven months ago.

He struggled with a small flowerpot in his left hand, and after walking in the garden for about five minutes, he was exhausted and out of breath.

“It’s really frustrating to have to wait so long to find out what’s happening in your body,” he said.

In West Cork, she sometimes suffers from fainting while 39-year-old Shana Cassen waits for a professional consultation.

“I can’t be my parent,” Shana, a mother of five, told RTÉ Investigates.

“I faint when my blood pressure drops too low. A few months ago I fainted on the stairs and when a two-year-old kid patted his head and woke up, she said the mummy would wake up.”

Frustration in coping with the symptoms of long covid and lack of a clear route to care can impact the mental health of some patients.

Rachel Dandy was clearly suffering from mental health while recording a video diary.

“The level of pain is something I’ve never experienced before,” she said.

“I need to figure out something. It’s the light at the end of the tunnel. I’m looking for it, but I can’t find it.”

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Rachel, 40, a bank manager and two mothers, was lucky enough to access the PostCovid Clinic after signing with Covid last November and waiting two months.

However, when she was introduced to see a neurologist in January, she was informed that she had a waiting list of more than 12 months.

Rachel chose to make a private promise when she discovered that this was a public waiting list. But the earliest promise she could get was September 24th.

Formerly healthy and healthy, Rachel was still struggling with the symptoms she spoke to RTÉ Investigates at her home in Greystones, Wicklows last week.

“Longcovid affects me in many ways, including shortness of breath, chest pain, heartbeat, kidney pain, inflammation, anxiety, and depression,” she said. “I cry a lot.”

According to experts, Long Covid can develop even if the initial symptoms of Covid are mild or asymptomatic.

However, for patients receiving intensive care, such as Fredy Guarín, there is a long way to go for recovery.

He was still walking with walking aids and oxygen when filmed with Fred at Tarat University Hospital in January of this year.

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This was three months after he spent 51 days in the ICU and was discharged from a hospital that almost died in Covid.

His consultant, Professor Seamus Donnelly, showed him the effects of Covid on Fred’s lungs. Professor Donnelly pointed to an X-ray of his office and said he had a lot of scar fibrosis in his lungs.

But there was some good news about his second lung.

“Acute inflammation is reduced, which is why your good lungs come back and you can do more,” he said.

“I had a critical care syndrome because I stayed in the ICU for a long time. Covid got worse and then got a critical care syndrome that affected my muscles and nerves, especially my arms and legs. It’s slow, but everything It’s improving. It’s great to meet you. “

Fred is fortunate to be a patient at Tarat University Hospital, which is funding one of the few interdisciplinary postcovid services in the country. According to Professor Donnelly, his recovery has been slow but steady since then.

Last week at his home in Sagath, Dublin, Fred was able to roam the apartment without help.

But as he walked a little across the room to water his plants, he was out of breath and had to sit down.

He still needs walking aids and oxygen supplies to walk outside his home.

Fred is improving, but he knows that the science surrounding Longcovid is still evolving and his future is uncertain.

“That’s scary,” he told RTÉ Investigates.

“I don’t know if I’ll be back. Your future is a bit blurry. I don’t know what your future will be with Long Covid. When will it stop?”