‘If you didn’t know better, you’d think I had dementia’

‘THERE HAVE BEEN TIMES I FEARED FOR MY LIFE’... NHS WORKER ON HER LONG COVID NIGHTMARE

BEFORE the pandemic hit, Sian Griffiths was working as a physiotherapist in the Welsh NHS and would think nothing of hiking up mountains or cycling 50 miles in her spare time.

But the 42-year-old said her battle with so-called “long Covid”, which started as far back as May, has left her a shadow of her former self.

As well as suffering terrible fatigue and breathing problems, she admits her “brain fog” has become so severe that she forgets to lock her own front door, turn her oven off and even follow simple conversations.

“If I didn’t know myself better, or if I was 80, you would probably classify me as a dementia case,” she said.

“There have been times when feared for my life.

“My symptoms have got so bad that I’ve messaged my mum before I go to sleep to make sure someone checks I’m still here in the morning.”

Sian said she felt “generally run down”, had constant headaches and was off her food when she first started to become unwell in May.

“I just thought I was busy with work. It wasn’t the classic symptoms of Covid, so at first I didn’t do anything about it,” she recalled.

“Then the week after I was in work again and I had a dry cough and my temperature was going up and down.

“I was told to go home and test.”

Sian said she may have caught the virus from recovering Covid patients who were being transferred from Ysbyty Gwynedd to Ysbyty Alltwen, Porthmadog, for physiotherapy.

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For the following two weeks she remained at home on her own, where she struggled with her breathing.

“My parents live around the corner, so my mum was making me meals and leaving them on the doorstep for me to pick up. I had so little energy,” she said.

“When I was in bed, my lungs didn’t feel like they were expanding well.

“They felt quite sticky. Being a physio, I thought if I lay on my front all night, that would help with the breathing.”

After suffering at home for more than a fortnight, Sian decided to start going out for short walks around her community in Anglesey, which highlighted another serious problem.

“I was getting tachycardia, more commonly known as a high heart rate.

“Then I’d have a really, really bad head constantly.

“One night I just thought my head was going to explode,” she added.

“I did worry what was going to happen to me.”

Sian said her “brain fog” and inability to concentrate has persisted for nine months, which she finds intensely frustrating.

“There have been occasions where I’ve made meals for myself and left the cooker on.

“I’ve left my house and come back and realised I’ve not locked the door. I’ve said silly things like something was in the freezer when it was actually in the oven or the tumble drier.

“It’s like I’ve got somebody else’s brain in my body.”

Despite all her health issues, Sian said her GP had been incredibly supportive despite not really knowing how to treat her.

“She referred me to a neurologist in November.

“I phoned them on Tuesday and they said it’s another 10-week wait,” she said.

“There’s nothing tailored for my circumstances, nothing to help me get better.

“I’ve searched for tools to help and found Betsi Cadwaladr health board’s online course for self-management of long-term health conditions but I really struggle to keep my concentration for the full 75 minutes before the brain fog descends again.”

To make matters worse, Sian has now been diagnosed with high blood sugar levels which, if they continue to rise, will lead to Type 2 diabetes.

“My diet was healthy before but when I had Covid, I was craving sugar.

“I can work on the diet part, but it’s the brain part that I can’t control.”

Despite Sian being unable to work since May, she said she has been given her full pay by the Welsh NHS which has kept her financially secure.

According to figures from the Office for National Statistics, around one in 10 people with Covid-19 will go on to experience debilitating symptoms for 12 weeks or more after their initial illness. In Wales that equates to more than 18,000 people.

Plaid Cymru health spokesman Rhun ap Iorwerth has called on the Welsh Government to reveal what funding is going into specific research into long Covid and to detail what support will be available for people with long-term symptoms.

He said there was currently no clear guidance to help them navigate the benefits system, insurance system, or early retirement options given that long Covid may not be recognised or diagnosed as a condition.

“The Welsh Government must move quickly with a national approach. “They also need to provide detail on the funding that has gone into specific research on long Covid,” he said. On January 20 the Welsh Government launched a bilingual mobile app, developed by the NHS Wales respiratory health group, to offer support to recovering Covid patients.

It contains more than 100 videos and links to advice from therapists, psychologists, dietitians and consultants, and aims to help patients record their symptoms, track their progress, and learn to manage their condition at home.

A spokeswoman for the Welsh Government added: ““We are working on ways to better support people with post-Covid syndrome and will be setting out our national approach shortly to help health boards organise their response taking into account latest research and local needs and circumstances.”