I fell ill with covid in March 2020. While not hospitalised, I was ill and bed-ridden for a few weeks, with chest pains, cold fever, fatigue, shaking, stomach issues, breathlessness, whole body tingling sensations and many more symptoms. I ‘recovered’ in April and started living my usual life including exercising. However, I noticed that my symptoms would return if I overdid it. Then in May I became ill again with similar symptoms. I contacted my doctor but was just told to take it easy. My chest felt as though it was full of concrete and I deteriorated throughout the month, barely able to make to it the bathroom and back. I called the doctors again and again and eventually I was given antibiotics for a suspected chest infection/pnumonia. After a few days of taking antibiotics, my chest infection resolved, but the fatigue remained.
I was barely coping with the basics of life; I couldn’t look after my son, cooking was very difficult. We lived on quick easy meals; the usually tidy house was a mess. I could manage the stairs a couple of times a day; leaving the house was virtually impossible. In late June, my partner took me for a chest x ray, which came back clear. Doctors had no advice for me other than to rest. I spent time online looking for answers; this led me to various groups of people with similar issues. This was before the term long covid had even been coined. I read Paul Garners’ blogs and realised we were both experiencing similar problems.
I googled my symptoms and was led to the ME website. Reading this was terrifying
I spent all day on the sofa; using my time to read about the growing number of people who were suffering the same thing. I joined the body politik slack group; desperately reading stories for ideas on how to recover. I googled my symptoms and was led to the ME website. Reading this was terrifying: I read there was no cure for ME and only 30% of people ever recover. All the advice on the website was on managing symptoms rather than getting better. The more I read, the more convinced I was that I had ME.
I called the doctors again asking for help. Blood tests came back normal and doctors could only advise me on managing my symptoms, they had nothing to offer as far as recovering was concerned.
I could no longer stand up for more than a few seconds because my heart rate would rise and keep rising
Then in July, my health deteriorated further. I wasn’t sleeping at all and started suffering from new symptoms. I found I could no longer stand up for more than a few seconds because my heart rate would rise and keep rising. A friend lent me a blood pressure machine and I monitored the readings. My heart rate would hit 140 if I stood up and my blood pressure would drop to readings of 84/59. I managed to speak to a doctor who told me it could be POTS (Postural tachycardia) and advised me to stand up slowly in case I passed out.
My son went to his fathers as I was by now practically bedridden and unable to look after him
My son went to his fathers as I was by now practically bedridden and unable to look after him. I contemplated giving up my beloved cats as I was unable to look after them properly. Fortunately, my wonderful partner didn’t let that happen; he came round every evening to feed them and empty the cat litter. I couldn’t stand to shower so I borrowed a shower seat. I had a home help visit most days to cook for me and clean. My partner and kind friends would take it in turns to cook meals for me and bring them round. A friend who had herself been bedridden for many years called round regularly and tried to keep me positive, reminding me how long her recovery took and assuring me I would get better in time.
The symptoms remained. I was chronically fatigued; had brain fog; had trouble breathing. I went from having insomnia to sleeping for around 14 hours a day. Whenever I stood up my heart would race so I literally had to spend my entire time either sitting or lying down. I spent the entire summer virtually bed-bound. I could walk slowly to the lounge from my bedroom on the same floor, a few times a day. Friends called but I was often too fatigued to speak to them. The simplest of tasks were a huge effort and most my time was spent lying down.
The simplest of tasks were a huge effort and most my time was spent lying down
I couldn’t get up or downstairs, couldn’t stand noise, could only watch calm TV programmes, couldn’t use social media or the internet for more than an hour or so. I could just about manage to read books and do the occasional puzzle. The world went on around outside without me. I’d look outside the window, wishing that I was well enough to leave the house. As well as being physically ill, my mental health was also at rock bottom. I’m usually a total optimist but now it was as if my brain had somehow been re-wired to pessimism. I was extremely anxious all the time about everything and totally convinced I would never recover.
The Aha moment!
I had so little energy that it was hard to do anything but slowly I began to shift my focus to research recovery stories on the internet. I found a website called ans rewire and considered paying for the course. Then in August, someone told me about a therapist who had recovered from CFS/ME, having suffered himself for 10 years, and now helped other people to recover. His name was Trevor and he was a Mickel Therapist. I decided to give it a go and in September, I started Mickel Therapy; weekly hour long sessions over facetime. I could barely manage to listen to the hour of therapy, let alone take in the messages or instructions that my therapist was giving me. But I persevered, determined to do everything I could to try and get better.
I persevered, determined to do everything I could to try and get better
This wasn’t conventional therapy – my only problem was my illness. The sessions were about understanding what had happened and following Trevor’s instructions. During our sessions Trevor explained what was happening – that my autonomic nervous system was effectively ‘stuck’ in flight/fight/freeze and was malfunctioning. He told me that, over time, I could help my nervous system function normally again and this would alleviate my symptoms. At this point I had been unable to stand, could hardly walk, and had had chronic fatigue for 4 months.
I had to interrupt my constant negative thoughts and symptoms and replace them with calming thoughts and visualisations
The steps I had to follow were, firstly to plan out my day and make sure there was more good things in my day than bad things. This was pretty tricky; I’m an active person and so literally every day was a bad day at that point. The second was to make sure that everything I didn’t want to do but had to, was followed by something nice. For me this was mostly chocolate. Likewise, anything that I was fearful of, or struggled to do, for example, going up and downstairs had to be followed by a treat or reward. I had to vary my routine so every hour I moved to a different chair, or simply got up and walked around for a short period. I had to notice when I felt an emotion such as fear or anger, work out why and write down what helped me feel better. I had to interrupt my constant negative thoughts and symptoms and replace them with calming thoughts and visualisations. I also had to stop constantly tracking my symptoms or googling and reading other peoples struggles with long covid. The aim was to calm my dysfunctional nervous system.
I also had to stop constantly tracking my symptoms or googling and reading other peoples struggles with long covid
Initially I wasn’t convinced that it would work at all. Trevor assured me that I didn’t need to believe it at first; I just needed to follow his instructions. I decided to give it my best, I had nothing to lose. I started following the method and very gradually, over quite a long period of time, I started to detect changes.
For example, I noticed that I always felt worse when I went on social media or googled my symptoms. More and more people were suffering these symptoms and I would often find myself going down a rabbit hole of reading about other people’s long covid problems, which filled me with negativity and worry. Likewise, I realised that I often felt very slightly less fatigued when my partner was with me.
I noticed that I always felt worse when I went on social media or googled my symptoms
During my Mickel Therapy sessions I came to really understand the mind body connection and how my nervous system had become stuck on high alert, this was giving me symptoms of fatigue. I learnt that I could only recover by helping my brain and body to feel safe.
I knew that one of the things that was keeping me sick was my constant focus on my illness. I had to shift my focus away from the negative so I strictly limited my time spent online. Instead, I started doing very basic yoga. I wrote a gratitude diary and tried to stop the constant worry. I’m not a ‘crafty’ person but I started making jewellery to pass the time. When the worrying thoughts appeared I turned my attention to something more positive. I kept following Trevor’s advice during his sessions; he reassured me that it would work. I didn’t notice an immediate change, but I persevered. Within a month or so I realised I had started doing very slightly more. This gave me a real boost. I kept my focus on my improvements and didn’t let setbacks get me down too much. I was focussed only on recovery.
On the road to recovery
Within 3 months and 5 sessions, I was doing more. By now it was December. From being bed-bound, I was able to go up and downstairs a few more times a day and I could cook quick meals (while seated on a stool). I started leaving the house. My first ‘walk’ was to the end of the drive and back. But soon I was leaving the house daily for very short walks. My fatigue was reducing and although I still had POTS and fatigue symptoms, I was able to stand for longer periods. I was on the road to recovery.
My first ‘walk’ was to the end of the drive and back. But soon I was leaving the house daily for very short walks
In March 2021, I had my final Mickel Therapy session. I had wondered for a while why this method of recovery wasn’t mainstream. So I asked Trevor how many of his clients had recovered using the method and he said ‘most of them’. He told me that there was little interest in the method because it was unproven. He told me about a client he was treating who had been bed bound for 25 years. After 18 months of Mickel Therapy, she was now able to leave the house for walks; and was continuing to recover. I am forever grateful to Trevor for his help.
I decided to start job hunting and in June I took a part time work at home job. I carried on using the tools I had been taught and slowly got back on my bike for short rides around the block. In September 2021, I started properly exercising again. Within 12 months of starting Mickel Therapy I had fully recovered.
Within 12 months of starting Mickel Therapy I had fully recovered
Mickel Therapy was a massive part of my recovery but there were a few other things that helped me enormously during my healing journey:
- The curable app. Curable is focused on pain (which I didn’t have) but the principles are the same. When pain (or in my case, fatigue) becomes chronic, the pain alarm becomes more sensitive to danger, fight or flight becomes activated easily and the nervous system activates the pain (or fatigue) alarm. Like Mickel therapy, Curable also helped me learn over time, how to dial down those alarms and eventually turn them off altogether.
- Meditation, breathwork and yoga.
- TRE (trauma and tension release exercises)
- Writing a gratitude diary and turning towards positives in my life
The Salt Path
It’s been over a year since my recovery, and I lead a completely normal life. During my recovery I read a book called The Salt Path, about a couple who become homeless and decide to walk the South West Coast Path, despite the husband’s severe illness. It’s an inspiring read and I promised myself that if I did recover, I would complete the 600-mile walk. My partner and I now spend our free time, walking sections of the path.
I live every day with a new gratitude for the simple things, a walk, being outside, being healthy. But I want to tell my story in case it helps some of the millions of long covid sufferers who are still suffering.
An unpopular Cure?
Sadly, this method of recovery is often widely discredited on social media as unproven, biased or even fake/lies. It’s certainly an unpopular recovery method or cure, vilified as ‘blaming the sick’. I don’t see it that way. We are not to blame for our illness. It is not psychosomatic, it is a physical illness, that is very real. But it simply isn’t an either/or situation. The symptoms are real and physical and measurable AND they can be helped and changed by these methods. My POTS was a real, physical symptom. That is true. Equally true is that, over time, I was able to retrain my nervous system and this, in turn, improved and eventually stopped the POTS symptoms.
The symptoms are real and physical and measurable AND they can be helped and changed by these methods
I truly believe that in some or perhaps many cases, we can re-wire our brains and nervous systems using these techniques. There are millions of people worldwide suffering with ME/CFS, waiting for a medical cure. I really hope that happens. But now, today, there is this method. It isn’t a magic pill. It requires effort, hard work and – most importantly -perseverance, even when it doesn’t seem to be working. It took me many weeks and months of persistence, using the techniques many multiple times a day to notice any real change.
I hope that my story gives hope to others who are sick with this awful illness.