Karen's long covid journey

'Being told there was nothing wrong structurally and that my illness was considered fully reversible was incredibly reassuring.'

It's wonderful to feature a recovery story on the blog this month. It comes to us from Karen Vincent, who used the neuroplastic approach to recover from long covid. Karen's chronic symptoms following covid left her relatively housebound and using a wheelchair. Having recovered, she is now delighted to be building her business as a personal trainer, yoga instructor and trainee health coach. 

Long covid took me by surprise

In September 2022, I caught COVID-19 for the second time. I had brain fog and incredibly low energy, although I did eventually have cold-like symptoms and tested positive for 10 days. My energy was so low I remember saying flippantly to my manager I could do with about 6 months off, which I came to regret quite quickly! I thought I knew what I was dealing with - after the infection I’d need to take it easy for a few weeks, allow myself time to recover and I’d be fine, like the first time around. Of course, I then went straight into two busy weeks at work, trying to meet the commitments in place before I was sick!

I didn’t make it through those two weeks. I was standing at the sink washing up at work when my legs started to feel weak. I didn’t think I was going to fall but I wasn’t completely sure so I left work early. Over the next few weeks, the weakness left me unable to stand or walk and it spread up my body into my chest and arms. I started to experience extreme physical fatigue, pain in my joints, muscles and from the clothes on my skin, swelling in my joints, hands and feet, covid toes (or chilblains!) and dissociation in my legs - the feeling that they didn’t belong to me.

My GP suggested part-time hours for a few weeks, but by the end of those weeks, I was also experiencing crushing brain fog, which made working impossible. My GP ran a whole battery of tests - neurological, blood markers, blood pressure, heart rate and oxygen saturation. All came back normal and I was diagnosed with long covid.

By early December, I was signed off work for three months, housebound, furniture-cruising from bed to sofa, unable to look after myself and using a wheelchair outside the house. It was a huge shock to become so unwell so quickly. 

Karen using a wheelchair as she struggled with long covid symptoms 

The slow snail of recovery 

I think I was lucky that I had a relatively solid foundation of health before I got long covid. I was active as a part-time personal trainer and yoga instructor, and had healthy habits around sleep, nutrition and meditation, all of which I think supported my recovery. With rest, I saw some gradual improvement in my symptoms over the next few months.

I started my return to work on 1-2 hours a day in February 2023 and started working with the Cambridge and Peterborough Foundation Trust post-covid service the following month. Through this service, I accessed an 8-week virtual programme where I learnt about pacing, prioritising and planning my activities and tips to manage my symptoms. I also accessed peer-to-peer support, occupational therapy and later, when I was on the way to recovery, a return-to-exercise programme through the clinic. 

2023 was a huge struggle. I was trying to build up my work hours, manage my symptoms and post-exertional malaise (PEM; where symptoms flare 12-72 hours after activity so it's not always clear what’s causing it) and have a life. Honestly, it was overwhelming, exhausting and lonely. I felt like I was barely surviving, let alone living!

One year in, I took the difficult decision to resign from my job and focus on my health. I was still experiencing extreme fatigue, PEM, brain fog, pain and dissociation in my legs. I was dependent on my partner, relatively housebound and unable to stand for 10 minutes or walk for more than 20. ​

Hope and the missing ingredient

I’d hoped that stopping work would help me recover. Instead I spent months in boom and bust activity cycles and almost gave up hope completely. The techniques I’d learnt had only got me from 10 to 30% capacity, which was not enough to live normally and I couldn’t see a way out. In November 2023, I missed a weekend away with friends and it was the last straw. Something had to change. I wanted my life back!

That weekend, I started to watch recovery stories of people with long covid or illnesses that seem similar like ME/CFS, and it gave me a tiny ray of hope. The next week I saw the specialist long covid GP for the first time. He checked me thoroughly and then gave me an explanation for my symptoms that changed everything. He said that there was nothing detectibly wrong with my body’s hardware - its structure or tissues - instead it seemed that it was my body’s programming or software that was going wrong. Our brains are very good at keeping us alive and my danger system was hyperactivated. My subconscious was seeing danger everywhere and giving me debilitating symptoms to stop me from doing activities it thought was dangerous in a misguided attempt to keep me safe. The long covid doctor explained that I had a 'functional disorder' (also known as a neurophysiological or mind-body condition*). 

I’d never heard the term functional disorder before, but it was an explanation that made sense to me given my symptoms. I remembered from my biochemistry degree that fatigue is not generated by a virus, instead it’s part of your body’s own response to the virus to encourage you to rest in order to aid recovery. In this case my subconscious brain was just getting it wrong! I was given information about functional disorders and the neuroplastic approach, including access to a mind-body app called Curable. Curable is designed for chronic pain but can help with any chronic symptoms with no obvious underlying physical cause (other resources are available!). 

I started immediately and worked my way through the materials. Being told there was nothing wrong structurally and that my illness was considered fully reversible was incredibly reassuring. It was empowering to finally feel that I could treat the root cause of my illness rather than just manage its symptoms and impact. The mind-body techniques I learnt fell into four areas: education, brain training, expressive writing and meditation or visualisation. Education helped me understand how my brain worked and how my symptoms were generated. Brain training taught me how to retrain my brain by consciously influencing my subconscious. I learnt how to send my body signals of safety through exercises such as word swaps**, pep talks, somatic tracking*** and creating a safe sensory home base. Expressive writing supported emotional release and helped me understand my thought and behaviour patterns so I could shift them. I also kept an evidence sheet of what I could do that didn’t trigger my symptoms and added to it over time. Meditation and visualisation helped to calm my nervous system and embody my brain training, new thoughts and behaviours. Throughout it all, I continued to watch recovery stories!

Amazing results

Four weeks later, on New Year's Day 2024, I walked for 4.5 miles along a beach in Norfolk to see seal pups . Given I’d been walking for only 20 minutes at a time before discovering the mind-body approach, it was amazing! Don’t get me wrong, it was hard work, I had many breaks and I had some fatigue afterwards, although not as much as I expected. I’ve continued to improve since then by practising the mind-body techniques. I’m now back at around 90-95% capacity and am able to live my life again. That little ray of hope has become a beaming sun and I’m confident I’ll see a full recovery in time. 

We are delighted to share this recent photo of Karen, practising yoga and enjoying good health. Thank you to Karen for sharing her personal photos and story to inspire hope in others on the recovery road. 

References:

* There is differing terminology used to refer to chronic symptoms and conditions rooted in nervous system dysfunction, including 'mind-body' and 'functional'. At Living Proof we tend to use 'neurophysiological conditions' and the 'neuroplastic approach'. 

** Word swaps involve swapping our everyday word use for another that has a more positive impact on our brain and therefore our body. For example, I swapped “crash” or “flare” to describe an increase in my symptoms for “bounce”, which makes me think that I’ll rebound higher than before in my recovery. I also swapped “I’m in pain” for “I’m slightly less comfortable” today. Just saying the word "comfortable" can make our brain and body feel more comfortable! 

*** Somatic tracking involves observing sensations within our bodies while we’re sending our brains signals of safety. These safety signals are often sent through lying down in a calm state focusing on the breath. It can be uncomfortable to start with to notice the sensations but the aim is not to judge them or worry about them, simply to observe what’s happening. Over time, this can reprogramme the brain to associate those sensations with safety rather than danger.