Long Covid: ‘My shame over 18-month work absence’

Sian Griffiths is keen to get back to work but feels “ashamed” that the “Long Covid fog” has kept her from doing so for the past 18 months.

“I can’t drive far, I forget to close doors, I burn food and when I read my brain turns some words into others. I’m losing focus,” she said.

Sian is one of a record 1.3million people in the UK living with long-term Covid – more than 2% of the population.

The only thing that lifts the long covid cloud for them is wild swimming.

“It feels like the fog is clearing, I can think a little more clearly,” Sian said.

“It lasts about an hour and a half after I come out and I hope the more I do it the longer the effect will last.”

Long Covid is not fully understood, and there is no internationally agreed definition – so measures of how common it is or what symptoms are involved vary.

Sian, who contracted Covid in May 2020 while working as an NHS physiotherapist, said she was advised by a specialist that swimming would help her recovery.

But the 43-year-old felt that after being at a leisure center the heat would make her “probably faint”, so she has been swimming in open water three times a week, usually off the North Wales coast nearby of their home on Anglesey.

“I go in a wetsuit because it helps compress blood and oxygen to the brain,” she said after a dip in the lake in the dramatic setting of Llyn Padarn in Snowdonia.

“The pressure of the water also helps with blood and oxygen to the brain.

“I’m ashamed of what people think of me because I can go in the water but I can’t go to work – it just doesn’t suit me even though I’ve been told I should.”

Official data suggests around 1.3million people in the UK are suffering from ‘Long Covid’ – symptoms lasting more than four weeks – with symptoms such as extreme tiredness, shortness of breath, heart palpitations, joint pain or changes in taste and smell.

It is affecting more than 60,000 people in Wales and Sian, whose memory and concentration problems are another major long-term Covid symptom, is one of 26,000 in Wales who are still showing symptoms more than a year after contracting the coronavirus.

“I can’t live a normal life,” she said.

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

“Now I have to have my mom and dad who basically try to remind me to do things all the time. It’s heartbreaking.”

Sian said her recovery was helped after paying for a counselor in Stoke-on-Trent – two and a half hours’ drive from her home in Llandegfan, near the Menai Bridge – rather than waiting 12 months for the Welsh NHS .

She has been diagnosed with Postural Tachycardia Syndrome (PoTS), a heart condition where symptoms can include dizziness and fainting, and believes Wales, like England, should also have specialist long-stay Covid treatment centers in hospitals.

She believes an “adviser-led, networked and under one roof” solution should be considered in Wales because “you need to know if something is happening to your organs” before people start rehab.

But the Welsh Government thinks local support is better, with rehabilitation being carried out by GPs, nurses and physiotherapists and their £5million Adferiad scheme working.

Sian was so frustrated that she contacted her local politician, who is also Plaid Cymru’s health spokesman in the Welsh Parliament.

“She had to travel long distances, pay significant amounts of money and put enormous pressure on her family to get a diagnosis,” said Rhun ap Iorwerth, member of the Senedd (MS) for Ynys Mon.

“It is unacceptable that this should happen to anyone, it is even worse if it happens to someone who is a health and care worker who has been infected on duty.”

Mr ap Iorwerth said “it is not right” that a Welsh NHS worker has to go private and pay for treatment “so that she can aim to get back to work”.

“We should take care of these health workers getting infected,” he added.

“As we should look after everyone who is suffering the effects of long Covid and who feel they are still not being taken seriously. There are many, many people in a similar situation.”

The Welsh Government said healthcare professionals are “still learning about Long Covid”, but added that almost 90% of users of its rehabilitation scheme would recommend it to others affected, according to a review of 600 patients.

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

“We know it affects everyone differently. Not everyone suffering from long Covid needs to see a specialist and this model will discourage people from waiting long for treatment.

“We are still learning about Long Covid and this review will help us continue to improve services. We will continue to monitor the support needed and adjust accordingly as we learn more to ensure services are available to all who need support.”

At the Welsh Government briefing on Tuesday, Health Secretary Eluned Morgan told journalists she had “no intention of stopping the Adferiad scheme”.

“I think it would be remiss of us to take away this program when it’s been so very successful,” she said, “when there’s clearly still a lot of demand for it.”