'Long COVID left me so exhausted I felt like I was dying'

A woman has shared her dramatic battle with long COVID, which left her bed-bound and unable to make food or watch TV.

Janet Johnston-Oger, 50, a translator from Northern Ireland, was so badly affected by the illness that some days the only activity she could manage was brushing her teeth.

Johnston-Oger, who now lives in Rennes, France, had previously enjoyed an active and busy life.

Making the most of the beaches near her home, she regularly enjoyed sea swims, regular brisk power walks and was a familiar face at her local surf lifesaving club.

But fast forward just eighteen months and the picture was very different.

"Life was great," Janet recalls. "We moved to Brittany in 2016, had settled in, made good friends, and spent two weekends every month by the sea.

"I worked full time running my own translation and copywriting company, swam four times a week, walked a few times a week, and went bodyboarding and for sea dips whenever possible."

When Johnston-Oger first contracted COVID, the symptoms hit her hard.

"My first infection was in June 2021," she explains. “It was brutal. I was in bed for two weeks and took six weeks to recover.

“The second infection was at the end of January 2022. It was less intense and I was only in bed for nine days and back at work after three weeks."

But in mid-March Johnston-Oger says she was hit with a new wave of symptoms.

"I had the most debilitating night sweats, insomnia, anxiety, dizziness and palpitations," she explains. "

"It was all downhill after that as new symptoms seemed to arrive every month: migraines; head pressure; internal vibrations; joint and muscle pain; nausea; low blood pressure; brain fog; and extreme exhaustion."

Johnston-Oger's symptoms were so debilitating she went to the GP regularly, but as many of her symptoms could also be attributed to the menopause doctors believed that was the likely cause.

"For the next 18 months I was at the doctor’s every two months," she continues. "I had many tests done and everything came back clear.

"I was told perimenopause was upsetting my thyroid medication dose and it would pass."

While Johnston-Oger believes she was and still is experiencing perimenopause symptoms, she has since learnt that long COVID can accelerate and exacerbate perimenopause.

"So that explains why it was so debilitating," she adds.

Johnston-Oger says it took 18 months for her to eventually receive her long COVID diagnosis.

“On 15 May 2023 I had to crawl to the bathroom and we called a doctor-on-call who worked it out after only five minutes," she says. "He looked at all my results, which were all fine, and asked me when the last time I felt well was."

Johnston-Oger said that it was the beginning of January 2022, just before her second bout of COVID and the doctor joined the dots.

"I was referred to the long COVID clinic in Rennes in June 2023,” she continues.

At her lowest point, Johnston-Oger's fatigue was so extreme that some days all she could do was shuffle to the bathroom and clean her teeth.

At one stage she couldn’t even walk to her nearest supermarket.

"Over two years in and I’m not fully recovered yet," she continues. "I’m definitely recovering, but I’ve still got a long way to go.

"The initial exhaustion feels as if you’ve got jet lag or have just given birth, and have the worst flu ever," she says of her symptoms.

"I felt like I was dying."

Johnston-Oger says the first three months after she stopped working, in June 2023, were about surviving.

"My body just gave up," she explains. "I couldn’t leave the house because I was too weak and I just slept all the time; my meals were often brought to me in bed; I showered sitting down, only a few times a week; and I couldn’t chat on the phone, read, or listen to the radio, watch TV or see friends."

The turning point came when Johnston-Oger found Suzy Bolt’s Rest, Repair, Recover programme.

“It was the only support I had during those terrifying, lonely months and Suzy, her team and the community got me through it," she explains.

In September 2023 she did Suzy’s Fern programme and says she started to very slowly improve after that.

"HRT is really helping because it reduces inflammation and long COVID is all about inflammation," she continues. "I also do water therapy once a week."

Johnston-Oger wants to tell her story to raise awareness about long COVID and encourage others to take it seriously.

"I wish more people knew that it is real," she adds. “That it isn’t just in our heads. That it isn’t ‘just menopause’.

"Last September I could only walk to the first lamppost outside my house, on a good day," she explains. "A year on I can walk 30 minutes on a good day.

"I still have to properly rest and do breathwork, meditation and nap three times a day. I’m not able to live ‘normally’ yet, or work, but I can do more things in the house, see a friend for a chat once a week, swim about 50 metres in the sea and can see that I’m constantly improving, albeit slowly."

Though she doesn't claim to be grateful she is living with long COVID, she does say it has made her revisit her priorities.

"It has given me clarity about myself, and others," she explains. "I have slowed down enough now to literally stop and smell the flowers and hear the birds singing.

"I’m not the same person anymore: I’m much calmer and happier, even though I’ve lost my job," she continues. "I also know exactly who my friends are now and I have learned to put myself first and set boundaries to protect my health."

Johnston-Oger says the illness has also taught her to appreciate the small things in life: being able to make a cup of tea; being able to shower and get dressed; being able to walk to the local shop 10 minutes away.

"For anyone going through this too, please know that it does get better," she adds. "You have to dig deeper some days, but there are glimmers of improvement and that’s what you have to hang on to.

"The thing about long COVID is that it isn’t like a broken leg, where a doctor can say you’ll be better in a few weeks," she continues.

"At one stage I couldn’t even chop carrots or walk to my nearest supermarket. How crazy is that?"

"Thankfully I’ve been given the tools to stay positive and I’m going to get back to living my life."

Find out more about the Rest, Recover, Repair programme at https://www.360mindbodysoul.co.uk/

Additional reporting Deborah Cicurel

Read more about COVID

• Long COVID study outlines possible causes and potential treatments (Yahoo News UK, 4-min read)

• COVID 'is an all-year round virus' expert warns (Yahoo News UK, 7-min read)

• Oxford University study shows long COVID twice as common in most deprived group (Oxford Mail)