‘I was once a healthy mum… now my body is attacking itself from the inside’ - the effects of long-term covid
PUBLISHED: 12:39 23 September 2020 | UPDATED: 16:49 23 September 2020
Battling painful symptoms of a virus they contracted several months ago, for these four coronavirus survivors, the fight is far from over.
With medical professionals struggling to support them, Emily Townsend investigates the impact of ‘long Covid’.
It’s just over six months since mum-of-two Tara Scott burst into tears at work; shaking with every single muscle hurting and barely able to stand up.
She had coronavirus, medics on the other end of the 111 call told her, although she would wait eight weeks for a test.
Fighting through secondary infections and numerous relapses in the months that followed, the Manningtree mother’s life is far from back to normal.
Once a healthy business owner, there are times, six months on from contracting Covid-19, that she finds it hard to string sentences together.
The 42-year-old has to use inhalers, suffers from severe headaches, and her periods have stopped.
Little is known about so-called ‘long Covid’, which puts survivors of the virus through debilitating symptoms ranging from chronic fatigue to headaches to persistent loss of smell and taste. Last week, researchers at University College Dublin found more than half of people recovering from the illness reported ongoing tiredness and exhaustion.
Professor Tim Spector of Kings College London, who leads the Covid Symptom Study, said 60,000 people have reported having symptoms, ranging from kidney dysfunction to clotting disorders, for more than three months.
Doctors in Suffolk and north Essex, where more than 3,000 people have contracted Covid-19, are treating a growing number of patients experiencing ongoing shortness of breath, weakness and tinging in the limbs, and general exhaustion.
Dr Christopher Browning, of Long Melford Surgery, said the local NHS is hoping to set up a dedicated service for these patients, to help manage symptoms and provide support.
Elsewhere in England, a small number of post-Covid clinics have been established, with NHS England also rolling out a YourCovid online resource pack for those recovering.
“Long Covid-19 syndrome is an emerging condition that we’ve only been aware of for a few weeks to months. We don’t know that much about it yet,” said Dr Browning.
“Because of this, these patients are being put through the mill diagnostically, with lots of bloods being taken.
“In many, but not all cases, people have tested positive for Covid-19. There is considerable overlap with what we know as chronic fatigue syndrome.
Dr Browning added: “Most of the time, bloods come back normal. But these patients just can’t get back to normal life.”
For Tara, Covid-19 initially gave her a sore throat, persistent cough, high temperature and a feeling like her “skin was on fire”.
“Now, I’m left with inhalers, my trachea makes me sound very harsh and sometimes I lose my voice. I have recurring chest infections. One day you’ll be fine, the next you can barely get out of bed.
“I was a really healthy person, had a couple of businesses, now I haven’t. For long-haulers like myself, at the beginning, I felt there was no help whatsoever. I didn’t see my daughter for three months.
“When you’re recovering, it attacks your throat. Your body goes into hyperdrive and starts attacking itself. You get severe reflux problems and I kept getting a recurrent yeast infection in my chest.”
‘It attacks your weaknesses’
Before Covid, Jon Kelly from Ipswich was a contract electrician working on the railway. The 62-year-old was struck down by the virus at the end of March. Only last week did his oxygen saturation get down to normal levels.
“I’ve had some obvious symptoms, for instance a temperature of 39C plus, hallucinating, being confined to my bed,” he explained.
“Some have been not so obvious. I’ve had painful toes, like the early onset of frost bite, much worse than chilblains. I could not stand the smell of cooked fish fingers.”
Mr Kelly, who has had to stop working as a result of the virus, said he also finds it harder to concentrate, hand-to-eye coordination has reduced, and his hearing – which was already poor – has got considerably worse.
“It’s like it attacks any weaknesses that you already have,” he said.
“The problem, is it is less than a year since patient zero so no-one really knows what the long- term effects are going to be.”
Medics are seeing a handful of patients per surgery experiencing long-term Covid symptoms, Dr Browning said, with numbers in the hundreds rather than thousands.
The region’s hospitals have set up a team to help patients recover, made up of physiotherapists, speech and language therapists and other health professionals who are treating everything from PTSD to brain fog.
Penny Cason, who leads this team, said: “The needs of our patients post Covid-19 is still an evolving picture, but we know a significant number of people are experiencing respiratory issues, as well as neurological complications and over 70% have fatigue and memory loss.
“Recovery can be so difficult, but we want to empower our patients to manage their symptoms to boost their confidence, so they can see their improvements and return to leading fulfilling lives.”
After undergoing rehab, those leaving hospital are assessed by a therapist, who will follow-up on their progress once at home. Six to eight weeks later, they will be signposted to support services already out there.
But while some support is in place, Ms Cason admits the virus “is so individual to each person, there’s no textbook picture and Covid-19 doesn’t discriminate”.
A significant proportion of those battling post-Covid syndrome had mild symptoms when they first caught the disease, and were not hospitalised.
Claire, 30, who works in the NHS, contracted coronavirus in April.
“When I first got Covid-19 it was very mild, between a cold and flu. I didn’t have a temperature, I didn’t have the chest pain or the cough - the only symptom I had was the smell,” she said.
“Now, I still can’t smell, I can half-taste, I have headaches, fatigue – awful fatigue. You think one day you are alright, the next you are floored by it.”
Zoe Brand, from Woodbridge, only discovered she had Covid-19 after her medical records showed she had tested positive for coronavirus antibodies.
Her sense of smell completely went just before lockdown. Six months later, it hasn’t returned.
“I do smell some things – like an air freshener – and then other times I stick that under my nose and I can’t smell it at all,” the 46-year-old, who had no long-term health conditions other than underactive thyroid, said.
“It’s quite random. If I really inhale something, I just about get the smell. I’ve got this taste and smell that’s exactly the same, whatever I am smelling and whatever I am eating.
“It’s getting frustrating now, I wish it would just go away and one day my taste and smell would come back.”
Also struggling with the prospect of having no end in sight, mum-of-two Claire feels more support needs to be in place for ‘long-haulers’ like her.
“I used to love going to the gym, I’ve got two kids, you’re just stuck in this limbo of not knowing when it will end,” she said.
“You can’t live your life, and no-one knows what to offer you in terms of what you can do, or how long it’s going to last.”
Tara, who has a teenage son and daughter, agrees.
“I get angry with myself because I can’t do what I used to do,” she said.
“I think the Government needs to put a recovery pack in for people like myself. If something isn’t done soon, you’re going to have so many people out there with nowhere to turn to.
“Yes, it’s affecting thousands of lives, but it’s also affecting thousands of livelihoods. I can only work part-time now, before, I was doing six days a week running businesses.”
In early September, health secretary Matt Hancock officially recognised long-term Covid and cited it as a reason for younger people to take the virus seriously amid a spike in infections among their population.
“We’ve seen younger people make the argument that they are less likely to die of this disease, but young people can have debilitating long-term consequences from coronavirus,” he said.
But what can be done to support those battling through a post-viral syndrome with unknown consequences?
Dr Browning says management of the illness at the moment is tending to be based around traditional treatment for ME.
Mr Hancock told MPs that the NHS set up so-called ‘Long Covid Clinics’ in July. But he said he was concerned not all GPs knew how to access them.
NHS England said earlier this month that it was “rapidly expanding new and strengthened rehab centres”. Your Covid Recovery, a 12-week programme of online-based aftercare, can be accessed here.
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