Living with long Covid: 'I can't work, I can't be a mum, I can't be a partner - I feel useless'

A midwife from Swansea has spoken of the "crushing" effects Covid-19 continues to have on her - a year after she first developed symptoms of the virus.

Mum-of-four Sarah Sutton is one of thousands of people estimated to be living with so-called 'long Covid'.

The 42-year-old, who had recently qualified in her dream job as a midwife, has been out of work since March 2020 as a result.

Sarah shared the impact of coronavirus on her life with ITV Wales in December. Four months later, and she is still no closer to recovery.

Among her symptoms are extreme fatigue, acute asthma and brain fog, which have also forced her to give up driving.

"It's crushing. It feels like it's hard work to even be," she said.

Sarah has not seen any signs of recovery since she last spoke to ITV Wales in December. Credit: ITV Wales

Sarah explained just how little she is able to do due to the debilitating symptoms she lives with.

"Throughout this year my sort of bench-line for every day that I won't break if I can possibly help it is that I have to brush my teeth twice a day, and some days that's it.

"On a good day, I tend to work on a basis that I will get up and dressed, and maybe there's one other thing I can do, and then that's it.

"Some days I can barely talk, I'm just so overwhelmed by everything."

Although long Covid is a new and little-understood condition, some have compared it to preexisting conditions such as ME/chronic fatigue syndrome and dementia.

Speaking about her brain fog, Sarah said: "I used to care for people with dementia, and it feels very much like how they used to react.

"You get so angry because you can't find a word, and I remember being on FaceTime to my daughter trying to explain - I can't think of it now - the triangle things you put guacamole on. Tortillas!"

She continued: "There are days when I can't open the washing machine because I can't work out how.

"You just feel so stupid because normal things just don't feel normal anymore."

Sarah said long Covid has not only affected her work, but her family life too. Credit: ITV Wales

Sarah has been out of work since March 2020 - having only been working as a midwife for four months.

"It's affected everything. I was working full-time plus overtime - I haven't worked since last year."

She added that the long-term effects of coronavirus have also affected her relationship with her fiancée.

"We've only been together four years, so a quarter of that I've been unwell.

"He's been amazing, but it's certainly not what he signed up for."

She described the added challenge of home-schooling her children while dealing with her symptoms.

"It's been necessary, of course, but it's been so hard because sometimes I'm looking at his stuff and I think 'I can't even help you', and not just because they didn't do it like that in my day, but because I can't make sense of what I'm seeing."

"I can't work which is a huge part of my identity, I can't be a mum, I can't be a partner, I feel a bit useless."

Sarah feels she has lost part of her identity after being forced off work by long Covid. Credit: Sarah Sutton

Sarah is among hundreds of people who have been calling for better access to specialist treatment in Wales.

She feels long Covid-sufferers have been let down by the Welsh Government.

"I don't think they have a clue. I've submitted evidence recently to the Senedd enquiry, so they should have a clue, they are being given information.

"But their response is just woefully inadequate."

Highlighting the need for better support, she said: "Nobody knows what to do with me.

"My GP has been brilliant, but there's nothing left for them to do.

"NHS specialists aren't able to see you quickly either, and you end up in this limbo.

"You're not ill enough to be in hospital, but you're certainly not well enough to work or function normally, and there's no provision there. It feels like you've been abandoned."

  • How is long Covid defined?

The healthcare watchdog NICE defines long Covid as lasting for more than 12 weeks, although others consider it to be when symptoms that last for more than eight weeks.

Studies suggest one in 50 coronavirus patients will still be ill after three months.

On Wednesday, a Senedd committee for health heard evidence from long Covid experts and those suffering with the condition, including Sarah.

More than 60 clinics were set up across England last year for people with the condition, which can result in brain fog, anxiety, depression, breathlessness, fatigue and other debilitating symptoms.

The sites provide access to specialist doctors, nurses, physiotherapists and occupational therapists offering physical and psychological assessments and refer patients to the right treatment and rehabilitation services.

But Wales' health minister said the Welsh Government would not be providing a range of designated clinics.

Vaughan Gething said part of the challenge in responding effectively to long Covid was that it effects people through a wide range of symptoms.

"The challenge is it's different for different for people. There isn't one single condition, one single set of treatment symptoms to deal with.

"We're still learning about long Covid, about its ability to reoccur, and because it will affect different people differently we need to have a treatment path that looks at all those different professionals who need to be involved."

He added that the Welsh Government has worked with healthcare professionals, therapists, GPs and doctors in secondary care to devise that plan.

He said this could see different specialist help provided in different parts of Wales, but that support would be organised around the individual.