This is what it's like to live with Long Covid, according to people who have it

Long Covid is now estimated to affect more than 400,000 people across the UK.

Studies suggest about 10% of Covid patients can go on to face life-limiting physical issues that linger for months after the early symptoms of the virus are gone – and there have been cases of patients still suffering after a year.

Breathlessness, chronic fatigue, muscle pain, palpitations and skin sensitivity are typical Long Covid symptoms. The condition is diagnosed at 12 weeks, if Covid patients are not improving. And scientists believe Covid could take up to two years to leave the body completely.

However, this early on in the pandemic, and pending further research, no one quite knows for sure.

We caught up with three people living with Long Covid. All three of them were fit and healthy before contracting the virus but now, up to a year after they were first infected, none of them has been able to resume their normal life.

Here are their stories.

Tim King
Former international athlete

The head of a revolutionary pain relief clinic in London’s Harley Street, former international athlete Tim King maintained his fitness into his fifties.

A training partner of champion Olympic runner Steve Ovett, Tim created his unique postural rejuvenation treatment programme and set up his CiONE Wellness Centre after his own athletic career was cut short by injury. He also lectures around the world on his biomechanics pain relief system. But nothing could prepare the married father of three for the devastating effects of Long Covid.

Tim caught the virus soon after the first lockdown began, in March last year. A year on he is still suffering.

Tim recalls: ‘I was hit really badly with Covid and had 16 days in isolation, after a former colleague at Leicester Hospital advised me not to go to hospital because it was so overwhelmed by cases. They told my wife that I should stay at home until, or unless, my lips turned blue.

‘For three days I had a temperature of 41 degrees, I couldn’t breathe, my lungs were operating at around 35% capacity and I had no oxygen relief, though the hospital called me every day. I couldn’t stop coughing, so I couldn’t lie down. I basically sat up in bed for nine-and-a-half weeks.

‘I also had chronic and extreme arthritis in all my joints. For the first three days I was pacing up and down in agony. My 88-year-old mother caught Covid from me [she recovered] shortly before I collapsed with pleurisy, bronchitis and pneumonia. It was touch and go whether I would survive. I feel lucky to be here.’

Tim’s level of fitness might have helped him. However, seven years ago he suffered a near-fatal brain haemorrhage which he believes left his immune system deeply vulnerable.

‘I had to learn to walk and talk again after that,’ he says. ‘It took me ten months to recover.’ Tim doesn’t suffer the chronic fatigue many Long Covid victims speak of, but his lungs and larynx still aren’t functioning fully.

‘A year on I still have a squeaky voice,’ he says. ‘I am having voice lessons, with breathing exercises, to retrain my larynx. I can’t run for more than 20 minutes without having getting out of breath and I am having physio to get my lungs to function better.

‘CT scans have revealed the membranes into my lungs and the chambers into my heart are damaged. I’ve been told recovery will take 18 months to two years. But the scientists can’t guarantee that. They don’t really know.

‘I have been working with an NHS programme on this. But when that finishes, I will try some of my own treatment programmes and a mixture of Western and Eastern treatments to further support my recovery.

‘It’s surprising the number of very healthy people who’ve been attacked by Long Covid. There’s some evidence to suggest those with underlying conditions, who were taking steroids, were not as badly affected as might have been expected.

‘My experience has been horrendous. But I’ve lost friends and colleagues to this virus and I know I’m very fortunate to be alive. My biggest message to everyone out there is not to underestimate it. A lot of people seem to think they’re safe. They are really not. This is no hoax. It’s horribly real. It is good to be afraid of it.’

Ivan Molina
Charge nurse and triathlon runner

Ivan Molina, a married father of two and a charge nurse for theatres and anaesthesia at University College London Hospitals, will have had six months off work with Long Covid by the time he returns at the end of this month.

‘I was fit and healthy before getting the virus on April 1 last year,’ says Ivan, 44. ‘I used to do long-distance triathlons and Iron Man challenges and was training for one of the toughest Iron Mans in Lanzarote when I was struck with Covid.

It affected me straight away. I couldn’t walk upstairs and struggled to have a shower. I had two four-week spells off work, then managed to work for about five months. I tried to tap into my triathlon mentality of pushing my body to the limit but I felt like a zombie and my body completely broke down.’

Ivan was one of the first patients of Dr Toby Hillman at UCLH’s first Long Covid clinic, opened last May.

‘It was a relief to have somebody understand my symptoms,’ Ivan says. ‘I had fatigue, chest pain, fast heart rate, neurological pain, cold hands, weak muscles, body aches and headaches. The fatigue has been constant.’

After tests including CT and MRI scans, Ivan was diagnosed with Long Covid. ‘It has been really hard, a drastic change,’ he says.

‘I couldn’t believe something could take me down as quickly as it did. I learned that it’s very important to be positive, believe you will recover, and pacing yourself is extremely important. You can’t fight your way out of Long Covid.

‘You need to get vaccinated, however strong you think you are. Or you can end up like me. You feel very low physically and mentally and everything can change in a day. It’s important to have the recognition that this is a serious illness and to have the support of your family and colleagues – not to feel alone. It’s helpful when people understand how devastating and frustrating this is.’

Sam Munslow
Life coach

Sam Munslow, a mother of four from Weston-super-Mare, left her position as a primary school deputy headteacher in 2016 to set up her own business as a life coach.

But last April she had a less desirable lifestyle change forced upon her when she
caught Covid 19.

Her illness became Long Covid, and it still affects her health today.

‘It’s not all negative,’ she insists, refusing to be portrayed as a victim. ‘My business is based from home and after the first few months I was able to work. I’ve also been able to use my life coaching skills to help other people adapt to Long Covid and I’ve written a book, We Will Covive.

‘I had very little support from doctors in the early days of this illness and I want to help other people who are going through the same thing. People have now started calling me the Covid Coach.’

In the first month of having Covid, Sam had such severe breathing difficulties that she didn’t go downstairs in her home for three weeks. Her oxygen levels were so low that doctors wanted to admit her to hospital for intubation but she insisted on staying in the 24-hour care of her family.

It was two months before she had the energy to stay awake throughout the day.

As the weeks and months passed, however, Sam became increasingly concerned that she showed little sign of recovery, though she says doctors dismissed this as post-viral fatigue.

Then in August last year she was diagnosed with Long Covid. Today, the long-term effects of the virus mean she has low immunity, chestiness, a persistent cough and palpitations.

Her skin has been left so hypersensitive that she can’t shower, dye her hair or wear makeup. ‘My body sees all these products as toxins and I come out in a huge rash,’ she says. ‘I have active days and rest days.’

She refuses to brand them ‘good’ or ‘bad’ days because of the associated negativity.

She continues: ‘The biggest tip I have for anyone else with this condition is not to fight it. I have spoken to people suffering from insomnia, fatigue and family
guilt – I suffered from this one day myself when I was so exhausted I couldn’t bear to hear my own son speak to me about a wonderful Lego crossbow he’d made. I cried for days with the guilt.

‘But the reality is that we and our families are more resilient than we know. I think it’s important to accept we’re not the people we were before the virus. I used to go on long walks and work out four times a week. I used to worry about when I’d be back to “normal”. But long term, even the scientists don’t know.

‘I think it’s important to celebrate what you can do and enjoy your time. Since Covid I’ve written a book, been on a camper van break and continued my life coaching. I would have lost those experiences if I had frozen everything till I felt “normal”’.

For more help from Sam, visit wewillcovive.co.uk.

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