The long shadow of coronavirus: Hackney Downs woman, 32, unable to walk five months on
- Credit: Francesca Locastro
A previously fit and healthy 32-year-old woman from Hackney Downs is one of 60,000 Long Covid patients in the UK, who is still living with the debilitating effects of coronavirus, five months after she came down with the illness.
This week the government acknowledged that some people who have experienced both mild and severe coronavirus symptoms can experience long-term health effects - like Francesca Lo Castro who still cannot walk for more than a few minutes unaided five months on.
She was struck down with a fever, cough and shortness of breath in April, after having chillblains on her fingers for four weeks - which are now also thought to be a symptom of Covid-19.
“I thought in a week or two I’ll get better,” said Francesca.
But the breathlessness got worse and she was bed ridden for six weeks and rushed to A&E twice.
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By the third week she was experiencing migraines “like never before”, along with conjunctivitis, insomnia and photosensitivity, and was diagnosed with lung inflammation.
“Doctors told me they were aware of patients taking time to recover, and told me to rest and take it easy,” said Francesca.
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Six weeks in, she had a “major relapse” and “felt the worst she had through the whole thing”.
“I started wheezing and gasping for air and had a tingling sensation in my head. I couldn’t keep my eyes open because it was too much,” she said.
At the time some professionals were sceptical the illness could last so long, and one A&E doctor suggested she spoke to her GP about taking anti-depressants.
“I was shaking and I wasn’t able to stand still,” she said. “That was very scary. I was worried and I was telling him I was previously active and healthy, and explaining I wanted to get back to normal - but all of a sudden I would get a cough and not be able to breathe or keep my eyes open.
Eventually she came across the Long Covid Support Group on Facebook and the website LongCovid.org, which has been a relief.
Discovering others were experiencing similar ongoing neurological symptoms was reassuring.
“The people behind these groups have done a huge amount of work advocating for us and campaigning for medical attention,” she said.
“When we have received care we have had to really fight for it,” she said.
“When you are so unwell you can’t be chasing doctors and health care providers.
“I wanted the government and NHS to revise their guidelines to alert people that Covid isn’t just either mild or critical, and there are a lot of people in between like me who weren’t bad enough to be hospitalised but who still suffer from the debilitating effects of this illness.”
Public Health England finally did concede this week that about 10 per cent of patients with coronavirus who were not admitted to hospital have symptoms lasting more than four weeks. An estimated 60,000 people have been affected for more than three months.
Symptoms are diverse and range from respiratory problems, cardiovascular symptoms like chest tightness and heart failure, and inflammatory disorders, to mental health problems and liver and kidney disfunction.
Francesca is plagued with headaches, extreme fatigue, weakness, and still cannot walk.
She has been given respiratory exercises to aid her recovery and has to make adjustments to help manage the symptoms - like resting before a half-hour chat with this paper.
Because of the lack of available tests in the UK when the disease first broke out, Francesca didn’t ever test positive for coronavirus - although medics, and thankfully her employer, do believe she had it.
When she first went to A&E no tests were being done, and by the time home tests were available, she ran into trouble. The first kit wasn’t ever delivered, the second one wasn’t collected, and the third result was unclear. Two swab tests carried out in June, three months in, came back negative for coronavirus.
“The testing strategy has been a huge mess,” said Francesca.
“I had a terrible experience using home kits and I wish swab tests were done by professionals and the burden wasn’t on ill people to sort out everything and administer the test as well.
“When I finally had the test in A&E I was struggling with how deep they had to go into the nasal passage. It’s uncomfortable and it’s hard to do that yourself.”
Francesca is grateful her employer is understanding and she can work reduced hours.
“In my case the lack of testing hasn’t been problematic because my employer is supportive and interested in looking after my health, but I know that many other employers aren’t like that and they will ask you to return to work if you can’t prove you’ve had the illness,” she said.
She feels uncertain about the future.
“I’ve had to adjust my expectations about recovery several times. “It’s not just being tired. I sleep and need an hour when I wake up to get out of bed because I can’t even move.
“Now it’s five months and it could go on a year or maybe longer.”