So here is my recovery story: how I got ill, life with a chronic illness and how I got on the road to recovery. Writing this has been emotional for me as it was such a difficult part of my life, and one that is all too easy to forget when you are well, but so many people are still suffering every day and I hope this helps someone, somewhere, somehow…
Life with ME/CFS
My first big wave of fatigue hit me when I was living in Greece volunteering in a community centre supporting refugees. I had been there for several months working 12 hour days, 6 days a week when suddenly one day I couldn’t get out of bed. I started sleeping 16 hours a night and struggled to get up.
My body was so heavy and weak, like it was made of lead.
A few days later I felt back to normal and assumed I had just had a virus. But this experience began repeating itself. I knew I had been over doing it and needed to rest but no amount of rest was giving me back my energy. I left Greece and came back to my life in the UK working as a vegetable grower on an organic farm.
For a while things seemed better, working outside in nature felt good, but eventually the symptoms returned along with some new ones: heart palpations, numb hands, brain fog, muscle pains and insomnia. I began missing days and then weeks of work and when I did make it I would have to spend my evenings and weekends in bed recovering. I had gone from someone who walked their dog before and after work, doing a physically challenging job, to this. A friend asked ‘Could it be ME?’. I didn’t know much about it other than it was a debilitating disease and I felt terrified. After several visits to my doctor and a variety of tests it turned out my friend was right, I was diagnosed: Myalgic Encephalomyelitis.
My symptoms continued to get worse and as a result they told me to do even less…and less…and less.
My doctor told me there was no known cure and I would likely have this condition for the rest of my life; I had to learn to live with my symptoms. After this diagnosis and prognosis I began spiralling further and my symptoms began to get even worse. I soon found myself missing too much work and I was eventually signed off sick. As a result my boss told me it seemed unlikely I could do such a physical job and suggested I should start to think about another career. I was devastated, my job was my passion and my direction. My doctor advised that I reduce the amount I was doing each day to live within my capacity and find a balance that worked. However, my symptoms continued to get worse and as a result they told me to do even less…and less…and less.
I lay in bed or on the sofa; getting dressed and eating was a notable achievement. Normally when unwell I would watch TV or read a book but my brain fog was so bad most of the time I couldn’t even binge watch my favourite programmes. My life seemed to be disappearing before my eyes.
I had always been such a capable person, passionate, sociable and active. And now I was struggling to make my own breakfast, let alone maintain my relationships or keep my job. I’d always dreamed of having a baby and as I was heading into my late 30’s I was thinking about the future; that ticking clock that people talk about was getting louder and louder. By the time I reached rock bottom I was spending most of my time staring at the wall grieving the loss of my life. It was from this very low, dark place that I realised I had to find a way out. Fortunately I still possessed some of the stubbornness I had before becoming ill.
I had firmly believed, as I had been told by many professionals, that my condition was a purely physical illness with a purely physical cause. They didn’t understand it or know what that cause was, but they said it was 100% physical. I even asked if it could have anything to do with past trauma and was told ‘no’. In some ways this was reassuring as it meant it was out of my control: I hadn’t caused it and there was nothing I could do about it, I was helpless and could give up. But when I reached these depths of myself I knew something had to shift. My choice was to continue believing what I had been told and resign to a life on the sofa: no hobbies, no job, no social life and no hope of having children, or I could question what I thought I knew, get curious and try to find a way out.
The beginning of recovery
I had always felt a strong connection with nature and so I tried to go outside everyday. It was often incredibly difficult and I felt terrible, but I tried. I tried to meditate but felt nothing other than symptoms. I tried to read books and everything I could find on the internet about ME/CFS. I had acupuncture and was taking all kinds of herbal medicine and vitamins. All of this was leading me slowly closer to understanding what I was experiencing but I was still very unwell and unable to do anything that brought me joy.
A few months earlier I was told about a friend of a friend who had recovered from ME/CFS with The MindBody Reconnect (or Mickel Therapy – it’s predecessor) but I had dismissed it. By this point I had been suffering with regular symptoms for over 3 years and I felt offended at the idea I could cure my illness by talking to someone. If I could recover by myself without medicine or medical intervention then it suggested to me that it wasn’t real, I was causing it and I was to blame. No matter how hard I had tried there was no way I could ‘think my way out of this’. And it went against what the medical professionals had told me, so surely it was nonsense? But by this point I was desperate and needed to try new things. As soon as I read the basic concept of the technique so many things made sense to me. I was still very sceptical as I couldn’t believe anything could work that well, it felt too good to be true, but it was time to give it a go or give up.
I met Clare Caldwell (the founder of the MindBody Reconnect) and she explained how our brains work out what are bodies need through our emotions but trauma and stress can interrupt this process and cause symptoms to be generated.
I realised that emotions playing a part in illness did not mean it wasn’t physical, or that it was ‘all in my head’.
Our brains are physical and they play a big part in how we react to viruses and diseases. My emotions, thoughts, brain and physical symptoms are all part of one system: me. Treating them separately was keeping me ill and in reality making me more unwell.
As I began to understand how my symptoms were generated I had already began to feel a bit better as I knew there was hope. Everyone’s journey is different but the first thing I was advised to do was to calm my nervous system and reconnect my body and mind by feeling the emotion that is usually the easiest to feel: joy. I had felt emotionally numb for some time and wasn’t exactly sure what would bring me joy so I had to work pretty hard at this. I took a risk and got up one morning and watched the sunrise with my dog, then baked a cake, walked in the woods, and eventually bounced on a trampoline! As each activity gave me a bit of energy I was able to do the next. Thanks to Clare I was no longer feeling the constant anxiety and fear of the illness as I understood it, and was learning to engage with the moment I was in, which allowed me to properly feel for the first time in years. I was ecstatic- I almost couldn’t believe it.
Life isn’t all sunrise and cakes, and most journeys aren’t linear, so there was still a lot more symptoms to come after that and a lot more work to do but it showed me I was on the right track. This work is simple but it is not easy. I learnt the difference between thoughts and emotions and how these impact symptoms. I learnt to feel what my body was telling me and put boundaries in place to protect myself and create a life that was meeting my needs. I learnt that it is great to give and support others but you must be full yourself to have energy to spare so you can be fully present and not empty yourself. And I learnt to stop judging myself and others so much and have compassion for where we’re each at and how we got there.
I stopped being a victim to my past and became empowered to make the changes I needed in my life.
All of these changes, bit by bit over time, can have a massive impact on your nervous system and the messages your brain is receiving. It turned out I was right to be suspicious of a cure because there is no magical cure or supernatural healer. There is knowledge, self inquiry and hard work.
All this went well beyond my illness. I became completely symptom free, felt more fulfilled and whole than ever in my life, trained as a MindBody Reconnect Practitioner, got pregnant and now have an amazing daughter. And I even have the energy to run around after a toddler!
What a journey… and one that I continue to be on everyday. Being present and staying connected to myself is a lifetime’s work but it’s a challenge that I fully embrace and feel passionate about sharing with others.