On the 29th December 2021 my life took a devastating turn. I didn’t feel right that evening, but I didn’t give it much thought and went to bed as normal. When I woke up I instantly knew that something serious had happened to me as I felt like the plug had been pulled from my body. I barely had the energy to crawl to the bathroom and my legs and arms felt like lead weights. My tinnitus was horrendous, I felt nauseous and my body ached. It felt like my worst hangover, the flu and exhaustion after a long hike all rolled into one. I had no idea what was going on and just felt incredibly scared. When I reflect now, I realise that this was the perfect storm that had been years in the making. At that time, I had been going through a lot. My dad had died, I had a new job, I developed a nasty bout of Covid and then reacted badly to the flu and Covid jabs. For many years leading up to this I had not heeded the warnings, listened to my body or reacted wisely to the symptoms. I thought that I was invincible and could just push on. The brain however, had other ideas!

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2022 was the toughest year of my life. I made a little progress early in Spring, but I pushed far too hard, too soon and this led to a complete collapse of my mind and body in July 2022. From that point things got worse. I was housebound and often bedbound. These were very dark times as I just didn’t have the energy to do the most basic of tasks. The hardest part was just not knowing what was happening to me and the medical profession didn’t have the answers that I was looking for. Advice was vague and inconsistent and I felt let down by the NHS in England time and time again. I was at one point diagnosed (incorrectly) with an aneurysm on the brain and it was suggested to me that I might have cancer. I was hospitalised three times and at my worst my wife had to wash me.

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These were some of the symptoms I experienced over that period:

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- Debilitating fatigue that left me housebound and often bed-bound for long periods

- Nausea

- Swollen lymph nodes

- Heart palpitations (My heart rate was regularly at 160).

- Loss of short-term memory

- Tinnitus

- Brain fog

- Sensitivity to noise and light

- Flu like symptoms

- Heavy legs and arms

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I was eventually diagnosed with both FND (Functional Neurological Disorder) and CFS/M.E, however I was no further forward in finding a solution. It became very obvious that I was going to have to find the answers myself, so when I was eventually well enough to read, I put all my waking hours into working out the answer to 3 questions.

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Why did I become ill?

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For most people this is a long time in the making. A number of stressors and traumas wreak havoc with the brain and the autonomic nervous system. For some it is a sudden, one off event e.g. a car crash, a virus, the death of a loved one etc. For others it could be that their personality type e.g. being a perfectionist or a people pleaser have put a lot of pressure and stress on the body.

 

For most, it is combination of all these things. There is a breaking point, a perfect storm. You probably experienced symptoms before you developed the illness, but like me, you ploughed on and ignored them. I believe that this was the brain sending out warning signals.​​​​​​​

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What is happening to me?

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The perfect storm leads to the nervous system becoming dysfunctional. It becomes hyper sensitive, on high alert and symptoms are experienced in response to this e.g. fatigue, pain, tinnitus, nausea, dizziness etc. There are two schools of thought here. One is that the software in the brain has gone wrong, the connections between the brain and the nervous system have become dysregulated, where, as the other school of thought is that the brain is doing exactly what it was designed to do. keeping you safe from any further harm.

 

There are many theories as to what is specifically going on in the body e.g. cortisol spikes, mitochondrial changes, wilds swinging of the sympathetic and parasympathetic nervous system, digestive changes, immune system issues etc. This is obviously very complex and whilst it is useful to have some understanding of what is going on, I do not believe that it particularly relevant in terms of recovery.

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What can I do to make progress and recover?

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From all my research I developed an acronym that I believe covers all aspects of recovery support. There is certainly no ‘one size fits all’, however there are generic strategies that will help all people with these illnesses. I do not believe that there will ever be a pill to fix these types of illnesses. What is needed is a holistic strategy that focuses on bringing the body back into homeostasis (normal function.) This needs to largely focus on the root cause (the dysfunction of the nervous system) and not on dealing with the many symptoms. I now have an unshakeable belief that everybody can recover from these illnesses. It is however going to take time and a lot of dedication.

 

In January 2023 I had enough energy to start reading and researching into the condition. I did over 600 hours of research into CFS/ME and related conditions. I spent most of that year reading recovery stories (about 300), learning about the nervous system and the brain, the mind body connection and working out why people stay stuck and are not getting better. I also did an online programme working with two chronic fatigue specialist coaches.

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From all of this, clear patterns started to emerge. There was clear evidence that many people were recovering from CFS/M.E, Long Covid, Fibromyalgia etc and that the approach they were taking had remarkable similarities.​

 

From this research I developed my RESTAND approach (see section on The RESTAND Framework.) I used this as a framework for my own recovery and it has enabled me to make a lot of progress in a short period of time. This is the very same structure I use when I am working with all clients.

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I am now working with the NHS in England on nervous system disorders and supporting clients in a number of countries around the world. I have learnt so much about myself, the medical system and the range of illnesses. When I was lying on my bed, and I felt no hope, I always said to myself that if I ever recovered then I would spend the rest of my working life supporting others to theirs!