'Long Covid struck me down with 34 different symptoms'
A Cambridge graduate who caught Covid-19 right at the start of the pandemic has revealed how she suffered months of severe after-effects including a “brain fog” that left her so confused in the early days she couldn’t work out how to use her kettle.
Rachael Clubb came home from skiing in France last March with a cough, fatigue and a loss of taste and smell, which was later diagnosed as a case of Covid-19.
But unlike her family, who all caught the virus and recovered within days, Rachael was plagued by a huge range of symptoms over the following months – from neurological issues to severe fatigue, breathing problems, gastric problems and allergies.
She has been taking part in a research project at Addenbrooke’s Hospital, funded by the Addenbrooke's Charitable Trust, on patients with long-lasting post-Covid symptoms, which has helped her return to her old self and she credits a very gradual exercise programme with giving her back much of her strength.
Treatment through the study has also helped her to recover fully her memory and concentration and she is now applying to study a PhD.
Rachael said: “I first got it in early March when we were skiing with my two youngest kids in France. I think I caught it while taking a bus to the shops.
“We were being so careful because we had heard the news coming out of Italy and were worried. So we were not using any cable cars, only using drag lifts and chair lifts and we were always using hand sanitiser. Then for some stupid reason we got on the bus to pick up some shopping. What on Earth possessed me to think it was OK to get the bus? But we just forgot about it. I don’t see where else it could have happened because we weren’t inside with anyone.
“I felt really, really unwell for about eight days and then I felt better. I thought I would be fine because I don’t have an underlying condition. I was only 50 and I was really fit because I had been skiing six hours a day, six days a week. So I had expected to shake it off quite quickly.”
After five days, Rachael seemed better and the family drove home. But then the symptoms came back.
“I was OK for two days but then it hit me really badly on day 11,” says Rachael. “And I was much worse than the first week. Since then I have had 34 different symptoms over 11 months.”
Her husband and children came down with the virus six days after they returned from France.
“I think by being in the car I just increased the viral load too much in a small space,” she explains.
“But they all got over it within a week to 10 days. They were OK.”
Rachael went on to develop some truly terrifying symptoms in the first few weeks.
“The worst one was the breathing difficulty, which was horrible and really frightening. But I had done yoga previously so I knew breathing exercises from that and I knew it was important to keep opening your lungs up right to the bottom.
“Even so, I couldn’t lay on my back because if I did my oxygen levels went below 90 per cent. We had a pulse oximeter and I could see what was happening to my oxygen saturation.
“So I had to stay on my side or lay on my front. At night time we used to jam pillows under me to keep me on my side because obviously if I fell on my back my oxygen levels dropped and I would have to have gone to hospital. We were trying to keep my oxygen levels at 92 which is the limit before you need to go to hospital. So that was the worst.
“Then my heart rate dropped down to 40 but then it went up to 160, sitting down. There was no ability to regulate my heart at all. That was all the early stuff.
“There were then other really weird things. At one point, my tongue became swollen. Also I couldn’t sleep because when I did I stopped breathing. When I met the neurologist as part of the Addenbrooke’s study, he told me the breathing issue was a neurological symptom. I told the doctor it wasn’t sleep apnoea – I would literally wake up and have to tell my body to breathe. I didn’t wake up gasping.
“Nobody would believe me until I saw the professor of neurology who said, ‘Yes, that’s a thing’. That was all really frightening.”
As time went on, more symptoms appeared and Rachael’s GPs were understandably confused by this new illness.
“When I first had it, no one knew about ‘long Covid’,” she says.
“You were either in hospital or you got better. There was no in between, so I thought ‘what on Earth is going on with my body?’. I also had body tremors, which were really weird, and lots of gastrointestinal issues and headaches.”
One of the worst symptoms was a “brain fog” which many patients with long Covid have described
“I have had neurological issues, which thankfully are much better now,” says Rachael.
“This was in the summer, about four months in. I came downstairs and looked at the kettle and it has two buttons on it – one is to lift the lid and one is to turn it on and I couldn’t work out how to turn the kettle on. I had no ability to remember or work it out. I had to just press the buttons to see what happened and there were loads of things like that. It was almost like I had to relearn basic things that had disappeared from my memory.”
On another occasion, Rachael forgot how to find her friend’s house. She says: “I went outside in August when I would walk a little distance. My friend lives up the road and I was going to walk to hers, have a cup of tea and walk back. But I got outside my house and could not work out how to get to hers. I could see her house in my head and I knew where I was but I couldn’t work out if I needed to start walking left or right.
“Before I saw the neurologist as part of the research study, people were a bit incredulous about it, saying ‘Well, we haven’t heard of that to do with Covid’. My GP surgery was really supportive but just said there was nothing they could do. If I had a particular symptom they would help me. For instance, I now have very severe acid reflux and they have helped me with that.
“I don’t blame them because there was no information being disseminated down to GPs, even when they were seeing this in hospital.”
Rachael, from Ely, suffered such bad fatigue that all she could manage was to walk downstairs to make a cup of tea, sit down in an armchair and then walk back upstairs.
“I would go back to bed then and have to sleep because I was so tired,” she says.
It came as a huge shock because Rachael has always been fit, working as a garden designer and enjoying mountain biking and spin classes in her spare time.
“Until the end of August I really wasn’t capable of doing anything other than showering myself, coming downstairs to eat the dinner I was given and I made myself cups of tea. I forced myself to do it because I knew one of the risks was deconditioning. I tried not to stay in bed because it is important to keep up some movement or you are at risk of blood clots.
She described the Facebook group ‘Yoga and PT for gentle Covid recovery’ as a “complete game changer” for her.
“I’m better off than some people I now know who can’t even get up to clean their teeth. There were times when I sat on the bottom of the shower tray, admittedly, but I did always have a shower.”
The turning point for Rachael came when she discovered Facebook support groups and one in particular that offered a series of very gentle exercises that got her moving again.
Rachael says: “Facebook support groups were an absolute godsend. I would recognise my symptoms there – for every weird symptom you had, someone would ask a question about it. That was really supportive.
“For a long time I felt very lonely and frightened about what was happening to me. We are luckyenough to live in a society where generally if you have a medical problem you can get some help, but for that period between the end of March and August that wasn’t the case in the UK.
“You couldn’t get any help unless you needed to be admitted to hospital.”
She described the Facebook group ‘Yoga and PT for gentle Covid recovery’ as a “complete game changer” for her.
“I want everyone who has ongoing fatigue from long Covid to know about it because it really helps.
“The lady who set it up is a yoga teacher and I have been following her Covid recovery training courses since September. I do that five days a week and it is almost like physio exercises. You start off at a low level with four repetitions of something really simple like a leg lift. Gradually, as you build back strength you can add in low level weights like tins of beans and resistance bands. That massively increased my strength, which means my body gets less fatigued from everyday life because I am stronger.”
Rachael has built up to a daily hour-long walk and gentle yoga for an hour each day.
“I still get tired and I don’t lead a normal life yet but I’m getting there,” she says.
The second thing that has helped with her recovery is becoming part of the study of post-Covid symptoms at Addenbrooke’s Hospital. All other participants had been hospitalised with Covid-19 but when researchers heard about her symptoms they admitted her as she appeared to be a classic case.
“The appointment was such a relief,” says Rachael. “The level of understanding and support, and the way they listened to me and were really respectful about it, were all very important to me.
“They confirmed I definitely had post-Covid syndrome.
“I’ve learnt that if you are in a negative space you can’t heal. Your mind is so busy panicking that you are in fight or flight mode so getting my brain out of that was really helpful and the yoga helped with that.
“Part of that is being recognised as well. I definitely knew it was real because we had an oxygen monitor and we could see my oxygen levels dropping and the heart rate being all over the place.
“But I did think ‘Am I going mad?’ because this is the most bizarre set of symptoms anyone could have and the GPs put their hands up, saying ‘We don’t know’. I know a lot of people are really struggling with their mental health as a result of this.”
“It was shocking because it made me realise the extent to which my brain didn’t work in the way it needed to
Rachael credits support from her husband, the research project, support group and the yoga for her retaining her mental health.
“I am also very determined,” she says. “My husband and I have talked about this and sometimes we wonder if I’m not dead because I was so fit before I got sick. But it might be something to do with my genetics that means I am predisposed to this.”
For the research, Rachael has had two MRI scans of her brain, a host of problem-solving and memory tests, and tests of her breathing and heart rate while riding a stationary bike.
During the memory tests, Rachael realised how much she had been affected.
She says: “It was shocking because it made me realise the extent to which my brain didn’t work in the way it needed to. They would list words, then talk about something else and go back and ask me if I could remember them.
“They also took a history of my education so they knew I have got a degree and a masters from Cambridge, so they would expect this person’s ability to be within a certain range.”
Knowing that she wanted to pursue a PhD, Rachael was determined to get her cognitive abilities back. She has worked with a clinical psychologist to get her concentration levels and memory up to speed again.
And one curious method included watching the sitcom Friends.
Rachael said: “She advised me to do puzzles and jigsaws, meet with friends and get out in the world. I found that I could chat with a friend if I sat down but I couldn’t walk and talk.
“I would walk with a friend and her dog and if I was struggling to get a sentence together she would just stop until I’d got the words out then we would carry on. Gradually, over a period of time I got back to normal.
“There’s no doubt that we joke in our PT and yoga class that recovery is like a full-time job. The other thing is personality. I always intended to do a PhD. I was going to do whatever was needed to get myself back to a position where I could do academic research.
“The clinical psychologist helped me when I said I wasn’t able to concentrate on research papers. She told me to break it down and do half an hour of work then 10 minutes lying on the floor with my eyes closed. Then I watched an episode of Friends for 20 minutes and I would do that in a cycle.”
“I do still get tired now, but I can do two hours at a stretch.”
Now Rachael wants to get back to peak physical fitness.
“The aim of recovery is not to do too much and trigger yourself back into a relapse.” she says. “At the beginning, the worst symptoms were from my heart and lungs. I was terrified they were damaged but my fitness tests have come back fine. It is what you would expect from an active 51-year-old. But I’m nowhere near back to where I was. Even now I can’t do hard exercise. I can walk but I couldn’t do a spin class. A lot of people wouldn’t notice because they don’t do that level of exercise. But we are a very active family and like mountain biking and I can’t do that yet. I’m confident I will get that back.”
