'GP mistook symptoms for menopause and left me crawling to the toilet'
A woman has spoken out about the battle with long Covid that left her bed-bound and unable to make food or even 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 do was brush her teeth.
Janet, who now lives in Rennes, France, had previously enjoyed an active and busy life. Making the most of the beaches near her home, she swam four times a week, enjoyed regular brisk power walks and was a familiar face at her local surf lifesaving club.
Eighteen months later the picture was very different.
“Life was great,” Janet said. “We moved to beautiful 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 successful translation and copywriting company, swam four times a week, walked a few times a week, and went bodyboarding and for sea dips whenever possible.
“It was sociable too - the Bretons are very sociable people! I had lunch or a cuppa with a friend or colleague a few times a month, girls’ night out on Thursdays and so on. But even though I was very careful to keep a healthy work life balance and keep up the self-care, I realise now that I wasn’t listening to my body.
“I had been on the wrong thyroid medication dose for over eight years and the symptoms from that were tough but I just ploughed on, kept going. The dose was finally right in 2021 but then in 2022 when I got long Covid I just automatically went back to pushing through and that is the worst thing to do with this illness.”
When Janet first got Covid, the symptoms hit her hard. “My first infection was in June 2021,” she said. “It was brutal – a bit of a blur really. I was in bed for two weeks and took six weeks to recover. I was scared because there was so much negative press about it and the doctor wouldn’t see me - it was very lonely.
“The second infection was at the end of January 2022. It was less intense. I was only in bed for nine days and was back at work after three weeks. I worked and went back to normal life in February 2022 but in mid-March, I was hit with the most debilitating night sweats, insomnia, anxiety, dizziness and palpitations.
“And then it was all downhill from there 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. Most of these symptoms overlap with menopause symptoms.”
Janet’s symptoms were so debilitating she went to the GP regularly, only to be fobbed off and told it was ‘just menopause’. She found herself with heart palpitations and severe night sweats. As a woman in her late 40s at the time, her GP presumed the menopause was a likely cause, and kept sending her home.
“In mid-March I went to see my GP’s replacement and she said everything was fine,” Janet said: “For the next 18 months I was at the doctor’s every two months. I had many tests done and everything was fine. I was told ’it’s just really bad perimenopause and it’s upsetting your thyroid medication dose. You’re fine, this will pass.’
“I was even taken to hospital in an ambulance in November 2023 with a heart rate of 150. And still everything was fine! It definitely was, and still is, perimenopause but I have since learned that long Covid accelerates and exacerbates perimenopause – so that explains why it was so debilitating.
"In April and then in July 2022, I begged my gynaecologist for HRT but was told that it’s not given to perimenopausal women in France. I did some research and found the wonderful menopause specialist Dr Louise Newson and went back to my gynaecologist in November 2022, this time in tears because I was finding it very hard to cope, armed with information that women in perimenopause are indeed allowed HRT.
“I was only granted a tiny dose of oestrogen gel, and was told it was because I was not yet post menopausal. Now I have proper menopause care privately from the UK with the amazing Dr Sarah Glynne. I’m not on the right dose yet - but HRT, especially testosterone, is a game changer for me. I’ll be on it for life!
“It took 18 months for me to be diagnosed with long Covid. 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. He looked at all my results, was delighted they were all fine, then said: ‘When was the last time you felt well?’
“‘Beginning of January 2022’, said I. And that was that. Then I was referred to the long Covid clinic here in Rennes in June 2023.”
At her lowest point, Janet’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, and she used to marvel at women on the street and wonder how they were still functioning.
“For the first 18 months I managed to keep working, I even increased my exercise routine because, well… menopause!” Janet remembers. I remember seeing older women in the street and I wanted to ask them how on earth they got through menopause because I just felt extremely ill.
“And because the doctors kept telling me I was ‘fine’, plus my nature of pushing through, it really took until June 2023 when the doctor-on-call said ‘I think you have long Covid’ for me to realise that I was actually very ill and that it wasn’t ‘just the menopause’. By October 2022 I had no more social life and I was really struggling to get through a day’s work.
“Over two years in and I’m not fully recovered yet. I’m definitely recovering, but I’m still a long way from the top of the mountain. I feel like I’m climbing the steepest mountain in the world, with treacherous ravines that I keep falling into and have to climb out of, in terrible weather conditions.
“The initial exhaustion is as if you’ve got jet lag, and just given birth, and have the worst flu ever. I felt like I was dying. The first three months after being stopped off work were really just about surviving, my body just gave up.
“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. Luckily, I found Suzy Bolt’s Rest, Repair, Recover programme as soon as I was stopped off work in June 2023.
“It was the only support I had during those terrifying, lonely months and Suzy, her team and the community got me through it. It was like I was drowning and they were pulling me out of the water onto their boat. Then I did Suzy’s Fern programme in September 2023 and I started to very slowly improve after that. My greatest leap in improvement was when I started testosterone in June 2024.
“HRT is really helping because it reduces inflammation and long Covid is all about inflammation. I also do water therapy once a week. I only started recently because I wasn’t well enough before then to go. I also do all the recommended things for my excessive heart rate including cold water therapy every day of the year and that really helps with lots of symptoms.
"And of course, I pace. I absolutely hate pacing, which is energy management, so doing an activity, then resting, rinse and repeat until bedtime, but it is key to reducing inflammation, which reduces symptoms.”
Janet says she wishes more people would take long Covid seriously, and hopes to raise awareness of the condition. 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.
“A year on I can walk 30 minutes on a good day. I still have to properly rest with breathwork, meditation and napping three times a day. And I have to pace like crazy. 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 slower than slow.
“I can’t yet say that I’m grateful for this illness but it has made me revisit my priorities and how I was living my life. It has given me clarity about myself, and others. 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.
“And I’ve addressed a few things in my life that needed to be sorted out. I also know exactly who my friends are now and I have learned to put myself first and set boundaries to protect my health. This illness has also taught me to appreciate the tiniest 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! It’s horrendously, painfully, devastatingly slow – but it does get better. You have to dig deeper than deep some days, and then slowly 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. Our recovery is open-ended. At one stage I couldn’t even chop carrots or walk to my nearest supermarket. How crazy is that?
“I’ve been given the tools to stay positive – I’m going to get back to life.”