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Woman with long Covid says she’s scared to go to sleep

Woman with long Covid says she’s scared to go to sleep
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Georgia Walby was one of the very first people in Wales to be struck down with coronavirus.

She experienced a range of debilitating symptoms in the days that followed, including headaches, fatigue and a severe shortness of breath which kept her awake at night.

But fast forward 10 months and she is still suffering with the many after-effects of the virus, and to make matters worse she claims her GP has no idea how to treat her.

“Covid is not just separated out between those who have very mild symptoms and those who end up in hospital severely ill. There’s a big grey area in between where people are unwell for months on end with all sorts of symptoms whose lives have been changed immeasurably,” she explained.



Georgia Walby, 53, from Llantrisant, has been suffering with Covid-19 since March

Georgia, 53, from Llantrisant, Rhondda Cynon Taf, said she first started feeling unwell on Sunday, March 15, a week before the UK-wide lockdown was announced.

“I will never forget that day,” she recalled.

“I woke up on the Sunday morning and felt a bit out of sorts. I developed a sore throat and a headache and I just wasn’t feeling right.

“By the evening I really struggled to breathe and at that point I knew it must be Covid.”



Georgia in her job before being struck down with Covid-19

Georgia, who works as an educational coach in Riverside, Cardiff, described the first few days with acute Covid illness as “rough”.

“I sat up lots of nights struggling to breathe with my heart pounding in my chest. It was so bad I thought my heart was going to give out,” she admitted.

“I couldn’t lie down because I couldn’t breathe properly. I was researching and trying to do breathing exercises I found online. I could feel the air going into me, but it didn’t feel like I was getting oxygen out of it.

“It was really, really frightening. I would fall asleep exhausted at 5am or 6am not really knowing if I’d wake up, but I was so exhausted I was almost giving in.”



Georgia said at times she thought the disease would kill her

Despite her worsening symptoms, the overriding government advice in March was for people to stay at home, and the only people receiving a test were those who had already been hospitalised.

“I went through a questionnaire on the NHS 111 website, and one of the bits of advice stated ‘if you’re well enough to watch TV then you’re well enough to stay home’,” she said.

“A couple of weeks later though, I realised what that meant. There were points when I couldn’t follow a simple programme. By that time I didn’t have the presence of mind to call a doctor. I was just staring into space.”



Georgia was an active person before the pandemic took hold

Four months into her illness, Georgia began developing neurological problems such as “skull-splitting” migraines, blurred vision, muscle twitches, shaky hands and extreme facial pain.

“There was one day when I really struggled to walk. I just couldn’t coordinate my legs properly. There was another day when I had hallucinations,” she said.

“I went to the GP as I was so terrified, but the doctor couldn’t give me any specific diagnosis as I had some symptoms that could be MS, some that could be Parkinson’s, and some that could be something else.

“I had to walk in a straight line, touch my nose with my finger; just really basic neuro tests. And because I passed them – although I did have some difficulty – he couldn’t refer me anywhere.”




In order to find out more about so-called ‘long Covid’ or ‘post-Covid syndrome’ Georgia, along with five others, set up the Long Covid Wales Facebook group.

To date it has in excess of 650 members and more than 200 different coronavirus symptoms have been listed.

“People’s stories of long Covid are heartbreaking. They have lost jobs as they’re still not well enough to work more than a few hours a week,” said Georgia, who had no underlying health conditions before the pandemic.

“People have been in and out of hospital, have suffered organ damage through this who were fit and well at the start. I don’t know if I’ve got long-term damage as I’ve not had any tests to check.

“It hasn’t been quantified yet, but a conservative estimation from the few surveys that have been done is that at least 10% of people who’ve had Covid are having symptoms for over three months. That’s a huge amount of people.”




She added that it was important for specialist coronavirus clinics to be set up in Wales so that medical professionals can build up a better understanding of how to treat it.

“At the moment the Welsh Government are simply saying that everyone with long Covid should just go to their GP and get referrals from normal pathways of care. They don’t want to set up separate clinics as the system to care is already in existence,” she explained.

“The problem is that individual GPs are not seeing many long Covid patients, so they are not having a chance to develop expertise. If there was a specialist clinic which only deals with long Covid, the clinicians would become experts in it.”

Georgia said she has found “some degree of improvement” in her health through trial and error but is still unable to carry out any exercise due to the high risk of relapse.

She has found that a low-histamine diet, such as avoiding ready meals, has helped with her shortness of breath and reduced her heart palpitations.

She’s also managed to get H2 antagonist antihistamines prescribed to her which have helped boost her energy levels.

“Going back only a couple of months I was sleeping 12 to 15 hours a day and I was really exhausted all the time,” added Georgia, who believes she may now have a condition known as mast cell activation syndrome (MCAS).

“These things have worked for me although they won’t for everybody as some people have a different pathology.”



Georgia believes more research and investment is needed into long Covid treatment in Wales

Summing up , Georgia called for a Wales-wide plan to tackling long Covid which will need significant investment.

“I’m frustrated with the Welsh Government approach because it’s been left to every individual health board to develop their own response to long Covid,” she said.

“Health boards haven’t got any money to set up separate clinics and they don’t have the staff either, particularly at the moment when many of them have to work on the frontline.”

A spokeswoman for the Welsh Government said in response: “We are taking a personalised approach to meet the specific needs of each person with post-Covid syndrome because it has such a wide range of long-lasting difficulties.

“We want people with post-Covid syndrome to be able to access the majority of the services they need – be that assessment, diagnosis, treatment and rehabilitation support – as close to home as possible or via remote services, only having to travel for more specialised services, which have to be provided in an acute hospital setting.

“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.”

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