Long Covid: ‘I feel ashamed for not being able to work for 18 months due to mental confusion’

Welshman Sian Griffiths is desperate to get back to work, but feels “ashamed” that she is still suffering from long-term Covid, 18 months after “the fog” of the disease drove her away from her activities.

“I can’t drive very far, I forget to close the doors, I burn the food, and when I’m reading my brain turns some words into others,” she says.

Sian is part of a total of 1.3 million people suffering from long-term Covid in the UK – a record number and representing more than 2% of the British population.

For her, the only thing that keeps away the cloudiness of the long Covid is swimming in a natural environment.

“The fog seems to disappear, I can think more clearly,” says Sian.

“This lasts for about an hour and a half after I get out (out of the water), and the hope is that the longer I do this, the effect will last a little longer.”

Long-term Covid is not fully understood, and there is no internationally agreed definition. So measurements of its frequency and what symptoms are involved vary.

in natural waters

Sian, 43, caught Covid-19 in May 2020 while working as a physiotherapist on the NHS, the British healthcare system.

She says she was advised by an expert that swimming could help her recover, but felt the heat of the gym would “probably make her pass out”.

She decided to swim three times a week in natural waters near her home in Anglesey, on the coast of Wales.

“I go with a wetsuit because it helps with blood compression and getting oxygen to the brain,” says Sian, after taking a dip in a lake, surrounded by the stunning scenery of Llyn Padarn, in the mountainous region of Snowdonia, in North Wales.

“Water pressure also contributes to bringing blood and oxygen to the brain,” he says.

“I’m ashamed of what people think of me, because I can get in the water, but I can’t go to work — that doesn’t feel right to me, even though I’ve been told to do so.”

Official data indicate that 1.3 million people currently have so-called “long Covid” — symptoms that last for more than four weeks, including extreme tiredness, shortness of breath, heart palpitations, joint pain, changes in taste and smell and difficulties. memory and concentration, like Sian’s.

In Wales, the disease affects more than 60,000 people. And Sian is one of 26,000 in the tiny nation still suffering from symptoms more than a year after being infected by the coronavirus.

“I can’t lead a normal life,” she says.

“I was fine before, had a full-time job and rode my bike in the mountains, cycling 40 miles (64 km) on the road.”

“Right now, I need my mom and dad basically trying to remind me to do things all the time. It’s heartbreaking.”

Sian says her recovery has advanced after paying for a private doctor in Stoke-on-Trent — a two-and-a-half-hour drive from her home in Llandegfan — rather than waiting 12 months to be seen on the Welsh NHS.

She was diagnosed with postural tachycardia syndrome (PoTS), a heart condition whose symptoms can include dizziness and fainting. And she believes that Wales, like England, should also have specialist treatment centers for long-term Covid in hospitals.

For Sian, an “expert-led, integrated, under one roof” solution should be considered in Wales, because “you need to know if something is going on with your organs” before starting rehabilitation.

Rehabilitation programs

The Welsh government, however, believes providing support locally is better, with rehabilitation programs run by general practitioners, nurses and physiotherapists – and argues that its £5m Adferiad (“recovery” in Welsh) program (R$ 35 million) invested, it is working.

Sian was so frustrated with the situation that she contacted her local politician, who is also the Plaid Cymru party’s health spokesperson in the Welsh Parliament, known as Senedd.

“She had to travel long distances, had to pay a significant amount and put enormous pressure on her family to get a diagnosis,” says Rhun ap Iorwerth, Senedd member for the Ynys Mon area.

“It is unacceptable that this happens to anyone, it is even worse when it happens to someone who works in the area of ​​health and assistance, who was contaminated while doing their duty.”

Ap Iorwerth says it’s “not right” for a Welsh NHS worker to have to go to the private sector and pay for treatment “so they can try to get back to work”.

“We should be taking care of these healthcare workers who have been infected,” he added.

“In the same way that we should be taking care of everyone who is suffering the consequences of the long Covid, I feel like we’re not taking this seriously. There are many, many people in similar situations.”

According to the Welsh government, healthcare workers are “still learning” about the long-term Covid, but it adds that nearly 90% of users of its rehabilitation program would recommend it to others suffering from the same condition, according to a survey of 600 patients. patients.

“In Wales, we are committed to ensuring that every person suffering from long-term Covid receives support and care tailored to their specific needs and symptoms, rather than a one-size-fits-all approach, and as close to home as possible,” it said. Minister of Health, Eluned Morgan.

“We know it affects everyone differently. Not everyone suffering from long-term Covid will need to see a specialist doctor, and this model will prevent people from waiting too long for treatment.”

“We are still learning about the long-term Covid, and this survey will help us improve services even further. We will continue to monitor needed support and adapt accordingly as we learn more to ensure services are available to those who need support. “

In late January, Morgan told reporters that he “has no intention of stalling” the Adferiad program.

“It would, I believe, be remiss of us to take this program away, when it has been so successful, when clearly there is still so much demand for it.”

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