There are more than 100 symptoms of what is known as long Covid, and Georgia Walby has had almost every single one of them.
“I’ve had nearly every symptom in the book, and there’s a list of over 100 – from crawling skin and really strange stuff, at one point my nervous system went haywire,” she said.
“In the middle of June, there was some horrendous, scary stuff and I struggled to walk as I couldn’t coordinate my legs and when I went to speak I couldn’t form long words.
“I even started hallucinating. One night in bed I looked at the wall and saw a giant orange spider.”
Long covid is the name given to the on-going impact of Covid-19 that some people suffer.
In the early days of the pandemic there was a perception that a coronavirus infection could go one of two ways – a relatively mild illness that lasts less than a fortnight for most and a smaller proportion of people falling seriously or, sadly, fatally ill.
But as hospitals battled the tide of patients hospitalised by the new virus and the public stood on doorsteps to applaud our heroic key workers, there were those who fell into a third category.
Some people, partiularly those who had a mild case of coronavirus, found themselves in a relapsing loop of fatigue, shortness of breath, muscle aches, fever, a pounding heart and even hallucinations.
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Many had to stop working and otherwise healthy adults suddenly found themselves bed-bound or unable to walk beyond the end of their street, reduced to “furniture walking” around their homes, as one sufferer said.
Georgia, 53, was one of them, and is one of the founding members of the long Covid Wales group. Set up just a couple of weeks ago, it has 300 members and around 50 new people joining each week. It is a branch of the UK long Covid group whose membership runs into the thousands.
She has found ways to relieve some of her long Covid symptoms but is still unable to return to work or socialise.
She used to work over fifty-hour weeks in her day job as a neuro-linguistic programming trainer as well as volunteering at an animal rescue centre near her home in Llantrisant.
Now, Georgia rarely leaves her house and doesn’t feel able to risk meeting friends at a restaurant or coffee shop for fear of once more contracting the disease that has sapped her of all her energy.
“I got ill in March before the first lockdown. The surgeries were closed and I wasn’t ill enough to go to hospital. The advice from NHS 111 at the time was that if you were well enough to watch TV you should stay at home and recover.
“I spent ages pondering that because a lot of mental confusion came along with Covid, I live on my own and I couldn’t work out whether I was well enough to watch the TV or not. I realise with hindsight that I didn’t have the presence of mind to make that decision.”
Georgia had “a number of nights” over a two-week period where she “really struggled to breathe”. She said on a couple of occasions she “didn’t think I’d see morning.”
On day nine of her illness she began to feel better and tentatively went to her allotment as all her symptoms were gone. The next day, she felt “terrible” again.
At one point, Georgia ended up in A&E because she was struggling to breathe but, thankfully, her oxygen levels recovered by the time she got to the hospital and she was not admitted.
This has been the pattern of her life since then, each week she has a day she feels better but then the symptoms hit her again.
“I’m basically still in lockdown. I can go out for an hour or so a day but I’m exhausted.”
Georgia added that she now “can’t do any exercise at all” even though she used to regularly cycle to and from her office most lunchtimes.
If she tries to cycle now she pays for it the day after with “post-exertion malaise.”
“I worry about being re-infected and wonder what damage I have already done without having any idea. There’s a lot of people getting imaging with heart and lung damage showing up and we don’t know if that’s repairable or not. I don’t even know whether I’ve got organ damage.”
After eight weeks of symptoms, Georgia went to her GP when the surgeries re-opened. She was offered antibiotics for a secondary chest infection and was sent for a chest X-ray.
“The antibiotics didn’t do much and the X-ray isn’t the right imaging, I need an MRI or CT scan to pick up any damage,” she said.
She said her doctor had given her a clinical diagnosis of coroanvirus, even though she had never had a positive test, and said “none of the GPs I spoke to have argued with a diagnosis of Covid-19.”
Georgia, like the others in long Covid Wales, is campaigning for multi-disciplinary support as well as emphasising the need for long Covid to become a recognised medical condition.
Georgia said she had found some relief from the worst of her symptoms by changing her diet to a “low histamine diet”, aiming to ingest as little as possible that might cause an intolerance or reaction to her immune system that is in “overdrive”. She cut out processed foods and cooks simple food with fresh ingredients.
Regular acupuncture has also helped relieve some of her pain.
Georgia hopes that financial and employment support will be available for people with long Covid in the future.
“A lot of people in paid employment are struggling to get sick notes or sick pay as we’re struggling to get it recognised.
“A GP won’t put long Covid on a sick note so people are being pressured back to work.”
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The people in the long Covid group come from all walks of life and some of them are from the army of key workers who put themselves in harms way during the first wave of the pandemic.
It is claimed that as many as one in 20 people who contract Covid-19 will experience some form of long Covid, with unknown costs to the health service, economy and mental health of the population.
Here are some of the other people dealing with the debilitating condition:
Leanne Lewis – Nurse
A part-time specialist nurse in complex care across hospitals in the Cwm Taf Morgannwg University Health Board area, Leanne, 45, went full-time as hospitals filled up during the first wave.
One morning, as she walked to work, she began to feel unwell with coughing and a sore throat. Leanne never made it as far as work that day and was sent home to recover.
At that point, she returned a negative coronavirus swab and her GP put the symptoms down to tonsilitis.
Leanne returned to work and had regular testing for a couple of weeks afterwards. After experiencing serious symptoms, including a spiking temperature of 38 degrees over one weekend, she didn’t go into work on the Monday and finally returned a positive test on October 12.
“I’d been experiencing symptoms since the end of September and I haven’t been right since. After my first negative test I went back to work for a week and a half after a telephone consultation with my GP, and since then it’s literally knocked me for six.
“I’m not even functioning at the moment. I’ve always been an active person and I’m only 45 with no major health issues.
“I was born with a heart condition but that’s always been well managed.
“Now, I’m extremely short of breath – to walk up the stairs it’s as if I’m climbing Pen y Fan. Sometimes, I literally can’t do it, the pain is horrific.”
Leanne said she got pain in her joints and lungs and was short of breath even after “minimal exertion”.
“Most of the time I’m furniture walking around, holding onto things to get around the house,” she added.
Leanne’s husband also tested positive for coronavirus but only had minor symptoms and has since been able to return to work. Luckily, her teenage son tested negative but he worries about leaving his mum alone at home when he goes to school.
Leanne added that her son used to worry about her going to work too, and would text her saying: “Please come home, mum, I don’t want you to die.”
Brain fog and cognitive issues are also affecting Leanne. Bilingual in Welsh and English, she said she couldn’t place certain words when she was on the phone and that when she called her mum to ask her to pick shopping up for her she often forgot why she’d called.
“I’ve lost past colleagues who have lost their lives to the virus.
“Long Covid doesn’t only affect me it affects my family, my son, as well. Yesterday was my first day alone and my son was very reluctant to go to school because he was afraid of me being on my own.
“As unwell as I am, I gave him reassurance and told him I’ve got good support and my phone with me, it’s not fair on him,” Leanne said.
Leanne praised her GP who has given her painkillers and taken an active interest in the symptoms she is experiencing. However, she says it’s a “vicious cycle” between the “horrific” symptoms of long Covid and the sickness caused by the strong painkillers.
Like many in the long Covid group she is calling for further help from the Welsh Government and NHS: “I know the pressures the NHS is under, I’ve seen it for myself, but I think they need to put something in place.
“We need multi-disciplinary specialist clinics to diagnose long Covid because each individual is very different, you need to have a number of specialities in that area to treat each individual holistically.”
Dr Ian Frayling – NHS scientist
Dr Frayling, 61, a recently retired NHS genetic scientist from Vale of Glamorgan, who is married to a virologist, is, like Leanne, well-placed to understand the mechanisms behind coronavirus and the affects it has had on his body.
He started feeling serious symptoms of coronavirus on March 13.
“I had a little bit of a temperature and just didn’t feel well. Then I started to feel more and more fatigued, my sense of taste changed and I went off my food.
“It completely fell on me on Friday, March 13, and it was then four or five days of hell.
“I had really bone-cracking fever, an appalling headache and the coughing got steadily worse. I was confused, couldn’t think straight and my blood pressure dropped to my boots, it was scary.
“It then changed my breathing. I started hypo and hyper-ventilating and, to a doctor, that’s a clinical sign which gives you extreme concern.
“Believe me, this is nothing like the flu, I’ve had that a couple of times and glandular fever. This was frighteningly awful, this one really frightens you and you fear for your life.”
After not eating for 10 days, losing seven kilogrammes in weight and experiencing worsening symptoms, Ian told his wife: “If this continues, I’m done for.”
He added that if he had these symptoms two weeks later he would have “stuck his hand up and gone to hospital”, but the advice at the time was to stay at home and “weather it out.”
Luckily, Ian’s symptoms began to subside but he knew it was going to be “a long ride” to return to health.
“I was gradually getting better and was pottering around the garden until my neighbour, also a doctor, met me over the fence and said: ‘You don’t look well, Ian’.
“I said: ‘I don’t feel well and I don’t know what’s going on’. I was feeling tired and just awful, it felt like a relapse.
“I would get a bit better and then go down again, it was what we call chronic relapsing.
“It works in a cyclical pattern. A couple of times, I’d go for a walk around the lanes and once I did about a mile it trashed me completely the next day, I have to be really careful.
“To be honest, this has locked me down at home regardless of what is going on in the outside world.”
Ian described his reoccurring symptoms as “life-sapping fatigue”, painful muscles and cognitive problems.
He has had several antibody tests, which showed he had a high level of antibodies and confirming he had coronavirus. He is now planning to administer tests to others in the long Covid group who lack a positive test to back up their diagnosis.
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“We want doctors to understand that there is this condition and that they can diagnose it on the basis of history.
“Also, that diagnosis does not need a specific lab test because you can get long Covid when you have a negative antibody test. You don’t need to have a positive test for the virus to get these symptoms.
“We want doctors to acknowledge that this is a definite condition and not dismiss people saying that it’ll get better or you just need rehab or to start exercising.
“We want GPs to be supported by specialist diagnostic clinics in each health board so that relatively early after the acute phase people can be assessed for dangerous levels of heart, lung or nerve damage so they can then access services they need.”
Ian warned of the dangers of prescribing “graded exercise therapy” as a rehabilitation treatment for long Covid patients.
This form of therapy is normally used to treat chronic fatigue syndrome but, according to Ian and others in the long Covid group, should not be used to treat the condition because people may have undiagnosed heart or lung damage and, therefore, exercising could be extremely dangerous for them.
Ian has donated blood and plasma as part of several trials for coronavirus treatments – including one for Regeneron which was used to treat US President Donald Trump when he was admitted to hospital with the virus.
The president raved about the antibody “cocktail” which he hailed as nothing less than a “cure” for the disease. Regeneron costs between $1,500 and $6,500 per treatment.
“What was injected into Trump must have been modelled on what I gave,” Ian added.
The latest research shows that long Covid affects people of all ages, with around 10% of 18-49 year-olds who become unwell with Covid-19 experiencing lasting symptoms.
Although men are more likely to be admitted to hospital with Covid-19, it appears that women are more likely to suffer from long Covid (14% compared to 9.5%)
Should the repeated tides of infection be brought under control by mass vaccinations, the true extent of long Covid is likely to become clear in its wake.
A Welsh Government spokesperson said: “We are continuing to learn more about what the National Institute for Health and Care Excellence is calling post-Covid syndrome, including from research and people’s experiences. We know people are experiencing a range of longer-term difficulties and while every person is different, these include fatigue, breathlessness, pain and cardiac, respiratory and neurological issues.
“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.”
It was recently announced that 40 “long Covid clinics” would be set up across England to help with the long-term affects of the virus, it is unclear whether Wales will see something similar soon.
Lee David Bowen, an opera singer from Caerphilly who after suffering with long Covid struggles to learn the simplest elements of new music, summed up the frustration of people living with long Covid in Wales.
“I’m not a medical doctor, it needs to come from a higher place and the government need to take it seriously.
“And it’s not only for our health – if you’ve got a lot of the working population off sick it’ll have a massive effect on the economy.
“That’s why we’ve got a devolved Welsh campaign now – when we were told England would get these 40 clinics, in Wales we’re saying ‘what about us?’”