Long Covid: Woman's life has 'been turned upside down'

Credit: Media Wales

Two months ago, Llio Angharad thought nothing of hanging the washing on the line, taking a morning shower, or popping out for a coffee with a friend.

However, since catching coronavirus in February 2022, the 34-year-old's life has "been turned upside down".

When she first tested positive for the virus, it didn't take long for her to realise what she was experiencing was a far cry from the "bad cold" her friends were describing.

Despite seemingly being fit and healthy, within days Llio's condition had deteriorated to the point where she was vomiting constantly, had diarrhoea, severe fatigue as well as other Covid symptoms.

Llio Angharad's condition had deteriorated to the point where she was vomiting constantly.

So much so, that when she visited her doctors they told her they hadn't seen somebody suffering so badly from the effects of the virus since before a vaccine was available.

The food and travel blogger from Cardiff has never fully recovered from the debilitating effects of the virus having since been diagnosed with long Covid.

Every day has now become a struggle for Llio, who on some days can't get out of bed or even turn on the television. She is now so exhausted that she often sleeps between 18 and 20 hours a day and needs constant rest.

"I just couldn't believe how bad I was," said Llio. "I’d see people around me having Covid and just having a bit of a cough, and then they're fine and I was like, ‘Oh my God, I've had three vaccines and I’m still this bad’.

"I remember going to the doctor's at the time, they had a special Covid room, and the woman who saw me couldn’t believe how bad I was.

"She [Llio's GP] said she hadn’t seen people as bad as me since before there was a vaccine basically. Since then, I haven't I haven't been the same."

She used to travel the world, review new restaurants, and promote businesses in her home city, but now even popping out for a coffee is a huge achievement and something to be "proud of".

"Every day is different, but an average day would mean sleeping between 18 to 20 hours," she said.

"It just depends on what I do, it's a struggle, sometimes I can't even put a wash on the line. Sometimes it's really hard even just to have a shower.

"What I do every morning now is I make a little list and it could be ‘go for a shower', ‘put a wash on’, ‘put them on the line’ and that’s it - and anything above that is a bonus. And it could take all day to do those things, but it’s about being proud to have done them because you’re so tired all the time."

Llio has had to stop working, both in her full-time job and on her blogger business, due to the ramifications of the virus.

Llio used to travel the world, review new restaurants, and promote businesses in her home city. Credit: Media Wales

She said she recently met a colleague for lunch who was "shocked" at how unwell she was. "I think he struggled to see how bad I was," she said. "I don’t think I realise how ill I am because people around me are used to it.

"I have brain fog and so I struggle to speak and think about what I’m going to say, so I stutter a bit which didn't happen before. That comes and goes, if you’re comfortable it can be okay but if not, even talking can be quite hard." She says she often finds herself struggling to breathe which she describes as "quite scary".

She said that the severity of her illness while having Covid, as well as the struggles of long Covid, have been difficult to come to terms with.

"I was like ‘why me’, I’m young. I honestly thought I was dying, I had palpitations, I couldn’t breathe, and that was after having Covid."

She also says it is difficult to come to terms with the uncertainty around how long she will be unwell.

Llio says that she was diagnosed with long Covid at the start of April 2022, a relatively short time after catching the illness due to the severity of her side effects.

As of December 2021, data by the Office for National Statistics showed that an estimated:

While many people feel better after a few days or weeks, and most recover within 12 weeks after testing positive for Covid, some people's symptoms can last longer.

The most prevalent symptom of long Covid is fatigue, however, this differs from person to person. "It’s been such a shock, and I don’t know what the next couple of weeks look like and that’s scary. Everybody’s different, some people have it for four months and others have it for three years so its really hard to know," she said.

Llio said her day-to-day life is now "unpredictable" and she has no idea how she is going to feel from one day to the next. "You can’t plan, you know you can’t say ‘oh yeah I’ll come to your wedding’ because you don’t know how you will be.

"And you will build it up and put so much pressure on yourself that you will make yourself stressed and ill. And the thing with stress is, it knocks you back and you’ll be ill again.

"One of the scariest things is you don’t know your limits. I don’t know when I have pushed myself too far and it will have a knock-on effect. You just have to constantly be careful. I had an incident not long ago, it was my partner's birthday and he wanted to go to Newport to the market. I was really building myself up to go, I didn’t want to be stuck in the house on his birthday.

"We went there and had a few bits to eat and stuff like that and then I just felt so tired, it just hit me. I got so upset because I was spoiling his day, but I just couldn’t do it. I said 'I’ve got to home and I’ve got to go to bed otherwise I’m going to fall asleep here', you get upset then because you can’t control it. When it hits you have to lie down there and then, it’s awful."

Another side effect of the virus which has had a huge impact on Llio's life is how it has affected her diet, and ability to eat certain foods. She now suffers from high potassium levels which means she has to avoid dairy, has to be careful with foods like potatoes, and cannot eat bananas - all of which prove difficult for someone who has forged a career as a food blogger.

"I’ve had to stop work. I’ve never in my life wanted to work so much. You go to work and you have a moan but actually, when it’s taken away from you it’s difficult. I felt so guilty that I couldn’t do my normal job because I do a lot of support for small businesses and I felt like I couldn’t do it. It’s hard to explain to people."

Llio said long Covid has had a huge impact on her mental health. Credit: Media Wales

According to the NHS Covid recovery website, long Covid is an informal term that is commonly used to describe signs and symptoms that continue or develop after an acute infection of the virus. It is generally diagnosed between four and 12 weeks after a person has contracted the virus. Llio says her doctor diagnosed her with the condition at the start of April, around eight weeks after she tested positive.

"I’ve had X-rays, I’ve had a lot of tests, and there’s a lot of imbalance in my blood tests and so on. My doctor has been absolutely fantastic. I couldn't rave about them enough, to be honest. They phoned me every week just to check that I'm alright, and I tend to chat with him weekly because I'm having tests I've been quite involved with that."

"The main symptom of long covid is considered fatigue, but from my experience, I think it's actually mental health. It's a very lonely illness, it's hard to explain to people," said Llio

It was her GP who suggested she be referred to the Nuffield Rehabilitation long Covid course. The programme is described as "a blend of physical and emotional support designed to help an ever-growing number of people who are finding it difficult to recover from the long-term effects of Covid-19."

It is a 12-week course with a group of around 10 people who suffer with long Covid and will provide things like physiotherapy, physical and mental health support and a rehabilitation specialist.

The course has been designed for people who are suffering from fatigue, muscle pain and weakness, shortness of breath, anxiety and low mood, memory loss, sleep problems and generally, not being able to do the activities or return to the lifestyle you had pre-illness.

Until recently, Llio had not spoken openly about her struggle with long Covid but increased feelings of loneliness and isolation have pushed her to share her illness in the hopes of connecting with others and raising awareness.

She said: "I think it's a very lonely illness, and I haven't seen many people talk about it or say that they’ve got it. In my circle, or even on my social networks, really, I haven't seen many people talk about it.

According to the NHS, whilst most people recover from Covid-19 promptly, some people experience symptoms that last weeks or even months after the infection has cleared. This is sometimes referred to as “Post-Covid 19 syndrome” or “Long Covid”.

Every individual’s experience with long Covid can differ to the next – with patients reporting symptoms of varying in strengths and for different amounts of time. Whilst many people feel better after a few days or weeks, and most recover within 12 weeks after testing positive for Covid, some peoples symptoms can last longer.

The most common symptoms of long Covid include:

  • extreme tiredness/fatigue

  • shortness of breath

  • chest pain or tightness

  • problems with memory and concentration

  • difficulty sleeping

  • heart palpitations

  • dizziness, pins and needles

  • joint pain

  • depression and anxiety

  • tinnitus and earaches

  • feeling sick and diarrhoea

  • stomachs aches

  • a loss of appetite

  • a high temperature with a couch

  • headache

  • sore throat or changes to sense of smell or taste

  • rashes

"The main symptom of long Covid is considered fatigue, but from my experience, I think it's actually mental health. It's a very lonely illness, it's hard to explain to people.

"I have been kind of keeping it to myself and struggling on and trying to act normal, especially because I do a lot of food and travel sort of stuff but it just stopped me in my tracks. I thought why am I fighting it? I’ve just got to accept that I've got it. And you know, maybe there are other people out there.

"I was in bed, I'd been in bed all day, I couldn’t even put the telly on or do anything and I thought I wanted to tell people. I was just sitting there on social media all day. It's an escape for me from what's happening and to be immersed in other people’s lives and what's going on. Mainly to get away from the fact that I am just lying in bed."

Since sharing her story on her social media accounts, Llio says she has been inundated with messages from other long Covid sufferers who have found themselves in the same position and who understand what she has been going through. "Now we have a little network that I can talk to and hopefully support them back. I don’t think people really talk about it enough," she said.

"I think it's really important that if you do have long Covid to talk about it, to connect to people and to talk, because it's so it can be so lonely.

Even with my partner, it’s so hard to explain why I’m tired all the time. It's really important to speak to people or to reach out to people who might also have it so you don't feel alone because actually, it can really impact your mental health.

"But I wanted to tell people that long Covid is around and how lonely it can feel. I never thought at the age of 34 I’d feel so alone -and it’s alright to tell people you feel alone.

"It’s awful and it’s upsetting. If I feel alone then I’m sure a lot of other people feel alone. I felt like I was holding everything in, I thought there must be people out there like me lying in bed who can’t do anything and will want to talk about it.

"The thing is, there’s no pill. There’s nothing you can take. You just have to ride the wave until you feel stronger. It doesn’t matter what your age is or what your health is like - this impacts everyone differently."