Long Covid sufferers feel forgotten three years on

Since getting Covid three years ago Iva Safrova spends much of her time at home, often in bed

Iva Safrova's existence is unrecognisable from the full and active life she led three years ago.

Back in March 2020 she got Covid-19 when she was a health care worker on a renal ward at Cardiff's University Hospital of Wales - and she never recovered.

"My life is ruined," said the 59-year old from Penarth, Vale of Glamorgan.

"No job, no social life. Cycling, travelling, walking - everything is gone."

With the Covid Inquiry under way with the aim of learning lessons from the past, it would be easy to assume the pandemic was behind us.

But with an estimated 2% of the population in Wales reporting they still have Covid symptoms a year after diagnosis, Covid-19 is far from over for many.

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Iva became unwell right at the start of the pandemic.

"I think I caught Covid from the first patient on our ward," she said.

She went to bed with a temperature, exhaustion and a cough, assuming she would feel better within a couple of weeks at most.

But weeks turned into months, with simple tasks leaving her feeling like a "walking zombie".

"I was crying a lot and I didn't know what to do. The doctor told me to be patient," said Iva, who moved to the UK from the Czech Republic 14 years ago.

"You feel alone, you feel very alone, [with] nobody [to] help you."

She was prescribed antibiotics which did not help.

Eventually with no progress in her recovery, numerous tests all coming back clear and barely able to leave the house she was dismissed from her job because of long-term ill health.

At rock bottom she came across Long Covid Support - back then it was a Facebook group, today it is a registered charity.

"The Facebook group helped me because I was thinking I was crazy," said Iva.

Iva likes to visit family in the Czech Republic but now has to use a wheelchair at the airport

"With the illness I'm crying every day and [a girl in the group] said 'I have the same'."

Three years on she still spends much of her time in bed.

"You feel tired, tired, tired from in the morning... because I do little, sit down, do little, lie down," she said.

In a bid to get well, Iva has taken things in to her own hands and lost weight, drastically changed her diet and spent hundreds of pounds on supplements and alternative medicine - but nothing seems to work.

She said being prescribed antidepressants "saved her life" and she is due to start HRT (hormone replacement therapy).

Iva loves to swim but now finds it exhausting

Looking back over the past three years, one of the biggest frustrations has been barely being able to see doctors face-to-face.

As time moves on she said she and others like her are being forgotten.

"I think people don't know long Covid exists - it's an invisible illness," she said.

"Covid is gone [from the news] and millions of people have long Covid."

Gareth Evans has struggled to regain his fitness after getting Covid more than three years ago

Gareth Evans, 45, from Cwmbran, Torfaen, said he felt lucky compared with others with long Covid as he has been able to return to work and regain some of his previous fitness.

In April 2020 he became unwell with ear pain, fever and fatigue. With no testing available and the absence of a cough he was told he did not have Covid.

He went to bed to rest but as time went on instead of getting better he found he was developing new symptoms.

Blood tests and X-rays consistently came back normal.

He was admitted to hospital under observation and in June 2020 was told he was suffering from anxiety and depression.

Brain fog meant Gareth had to list all his symptoms before speaking to his doctor

During this time he too came across the Facebook group Long Covid Support .

"It was a great source of comfort to me in terms of sharing experiences with other people or getting that validation that I was actually sick," he said.

"I've seen messages from people where as a result [of long Covid] they've lost their partners or their homes, they're trying to claim disability but because they can't prove that they're ill they have real difficulty trying to get that help."

He said for him one of the most challenging symptoms was insomnia.

Gareth at the top of Pen y Fan before getting Covid

"I was lying in the bed for hours on end. It was difficult because it was a condition no-one knew anything about, I wasn't sure if I was ever going to recover or if I was going to live or die.

"The mental toll it took on me was enormous," he said.

Before getting sick Gareth had been training for a triathlon and was at the peak of his fitness - but he found himself signed off work and barely able to leave the house.

With so many symptoms Gareth was referred to countless specialists.

"Looking back, I've gone back and counted the number of appointments that I've had - at the moment I've had 127 appointments and that's outside of the stays I've had in hospital," he said.

"In my view isn't an effective use of resources."

He wants to see big changes in the way Wales treats people with long Covid.

"I think we'd be better served with a specialist clinic here in Wales, similar to what they have in England," he said.

He wants somewhere where patients can "access all the various tests to rule out certain life-threatening conditions and give you that peace of mind".

Gareth is speaking out to raise awareness of long Covid

He also wants to see patients involved in the conversation about how best to treat those with the condition.

The Welsh government said it has increased funding for long Covid patients and supporting them remained a priority.

Although there are no long Covid clinics in Wales, it said rehabilitation services could be accessed through GPs

Since Gareth first got Covid the UK has seen three prime ministers and, until the Covid inquiry, the cost-of-living crisis and war in Ukraine has knocked Covid from the headlines.

"Covid was everywhere in the news when you turned on the TV but nowadays you just don't hear about it," said Gareth.

"For some people we are still in the middle of the pandemic because we are suffering, we still haven't got back to our old lives."

Iva feels similarly forgotten.

"I think people don't know long Covid exists - it's an invisible illness," she said.

"I'm very worried, if I stay like that all my life will be hell, it's horrible, horrible."