'I’m not really living, just surviving': Long Covid victims' two years of misery

Some Long Covid sufferers say they are still struggling with a host of debilitating health problems two years after catching the virus.

Three patients, who believe they caught Covid-19 over the festive period in 2019, have spoken exclusively to Metro.co.uk about their 24 months of misery.

But one hopes that her story of recovery – to about 70% of her ‘old self’ – can help other UK sufferers, who number an estimated 1.2 million, according to self-reported stats from the Office for National Statistics in December.

The MP leading an inquiry into coronavirus has branded them the ‘forgotten victims’ of the pandemic.

Nic Mitchell, 54, said six months ago that she felt like she had aged 20 years, after first getting coronavirus symptoms on Christmas Day 2019.

The media marketing consultant has battled a host of horrifying health problems, loneliness and misdiagnosis since staying at a Gatwick Airport hotel overnight on December 22, when she believes she came into contact with passengers from Wuhan.

By the 25th, she was unable to taste her Christmas lunch in St Lucia and went on to face countless debilitating symptoms, including organ damage, stroke and memory and hearing loss.

The infection came before testing was widely available in the UK, with Long Covid not being recognised until months after.

Former BBC journalist Nic says the infection initially felt ‘like a fire-breathing dragon was inside me’ as she faced swollen, discoloured joints and struggled to open her eyes because of light sensitivity.

After 18 months with Long Covid, she was delighted to take her own dogs around their local park for the first time since getting ill.

Having lost her job and partner, by December she was thankful for getting more mobility and independence back.

But she told Metro.co.uk: ‘I still cry every week because I’m not really living, just surviving. I am disabled, possibly for life, but like millions of others totally forgotten, like a casualty of war.

‘Simple pleasures in life like enjoying a meal, smelling bread, taking a nice country walk with my dogs or just being able to jump in the car and go to a shop or café are all still impossible.’

In the last six months, her arthritic joints, brain fog and regular infections have remained at similar levels.  

She can now walk much better than in July and her shortness of breath has eased, while skin rashes are less frequent.

But Nic’s fatigue has worsened and she now sleeps so deeply that doorbells and phone calls are missed, while her depression, anxiety and emotional breakdowns have all increased.

She hit out at Government support for those with the condition, branding the current help available ‘worse than ever’, despite ministers’ promises.

‘Clinics have been closed, GPs are unable to do face to face meetings and only virtual Long Covid support is on offer for a lucky few’ she said, adding that help with mental health is severely lacking.

She claims death by suicide are ‘far too common’ among sufferers.

Metro.co.uk was unable to contact Mike Raven, who told us in July about his exhaustion, back pain and breathlessness 18 months after a suspected Covid infection, in January 2020. 

The condition of the previously active gardener and golfer, who was 77 when we last spoke to him, is unknown.

Many Long Covid victims recover fully over varying periods, but others are less lucky.

Helen Oakleigh says she is ‘still very poorly’ and that ‘health wise’ six months ago ‘feels like last week’.

Since speaking to Metro.co.uk in July, she is now hopeful that a drug called apheresis, which is being trialled in Germany, can help her recover.

Helen is on a German waiting list for the treatment, but adds: ‘I simply do not know if I would be well enough to travel, even with significant help.’

She suspects her initial infection came on January 1, 2020, when she flew to Wuhan, though she visited the Chinese embassy the week before.

By February, Helen had the beginnings of Long Covid but suffered a ‘huge relapse’ in August, which has left her heavily disabled and saw her hair fall out.

The Londoner previously played team sports several times a week, trained, worked out and ‘cycled everywhere’ but now says she faces daily pain, tremor and wheelchair use.

The actor, writer and director, in her 30s, feels ‘lucky to be alive’ after suspected heart attacks, paralysis, temporary blindness, loss of speech and being bed-bound for months at a time.

‘Two years is long enough to wait – we need to try actual treatments now’, Helen said.

The founder of the Long Covid support group agreed there is an ‘ever more urgent need’ to find a cure for the ongoing health condition.

Claire Hastie told Metro.co.uk: ‘Long Covid (needs) to be a core consideration for policymakers in order to prevent more cases.

‘People are continuing to lose their jobs and missing out on education, and the advocacy work of patient organisations such as Long Covid Support and Long Covid Kids is vital to help those struggling to access support.’

Yet another sufferer, who Metro.co.uk is speaking to for the first time, believes there is hope and help available for other sufferers.

Kirsty Stanley, a self-employed occupational therapist, believes she was infected just after Christmas 2019.

The 43-year-old, from Poole, Dorset, had fatigue issues, asthma and an underactive thyroid before getting Covid, and says recovery is initially about getting back to a ‘new normal’ rather than your old self.

Now she is urging those trying to get better to work ‘within their energy levels’.  

Kirsty, who believes her ADHD may have played a part in the severity of her symptoms, faced coughing, shortness of breath, fast heart rate, fatigue, brain fog, tinnitus and joint pain – all of which were accentuated during her period.

She also says financial pressures from struggling to work have impacted her, with fatigue meaning her parents still come to walk her dogs a couple of times a week.

But her condition has improved, with some help from steroids and new inhalers, and Kirsty believes she is at around 70% of her old self now, after two years – with her lowest point at ‘around 20%’ in the early few months.

‘I am not convinced I will make a full recovery until they have done new research,’ she explains, adding that she thinks she would still meet the criteria for ME or Chronic Fatigue Syndrome.

Her advice to others is to focus on their recovery slowly and steadily while listening to their bodies – and to expect relapses.

Layla Moran, the MP chairing the All-Party Parliamentary Group on Coronavirus, told Metro.co.uk: ‘Those living with Long Covid remain the forgotten victims of this pandemic and while there has been some progress in research and specialist clinics, the patchwork of rehabilitation services has created a postcode lottery, leaving too many struggling to access the support they need.’

She urged the Government to collect ‘reliable data’ on the number of people living with the condition and continued: ‘Ministers need to also recognise Long Covid as an occupational disease, provide formal guidance to employers on the issue and create a compensation scheme for key workers who have been unable to return to work after catching the virus.’

The Department of Health told Metro.co.uk that it is committed to supporting Long Covid sufferers and ‘ensuring services are available to everyone who needs them’.

‘We’ve opened 90 Long Covid assessment centres for people across England, with specialist services for children and young people’, a spokesperson said.  

‘We are also providing more than £50 million for research to better understand the long term effects of the condition and develop the right treatments for patients.’

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