Most people nowadays know someone who has been touched by ME, chronic fatigue or post viral syndromes; even though it is still largely misunderstood and incredibly difficult to get a formal diagnosis. When I began to suffer, in 1988, it was a suspected bout of mononucleosis or glandular fever that triggered a 9year struggle with nonspecific pain, exhaustion and immune impairment. I was only 10 years old.
The inability to stay healthy, for a child raised on a farm being active and captain of every sports team at school, was as debilitating as the fatigue itself. Physical and psychological battling to just make it through each day meant great swathes of time in utter collapse. There was no diagnosis, just test after test that came back negative. At 17, approaching mock Alevels and driving test, I awoke one morning unable to get out of bed. I was in a wheel chair for the better part of a year- with episodes of being totally bedridden. Changes of GP, trying to make sense of my condition, led to finding a GP who had a niece with similar complaints and a tenuous diagnosis of ME- myalgic encephalomyelitis and told the only thing to do was rest, total rest. Give up education, sport, everything. This is not an uncommon tale, even today. But at least it had a name.
I made it a mission to find alternate view points to this and other nebulous conditions. Studying in Hawaii, having read everything I could get my hands on about the immune system and the mind-body connection in the western traditions, I found Lomi Lomi. It was not just the physical approach to the body, but the whole culture of anatomy that made sense. Looking at the body as part and parcel of the person, emotions and life events rather than a separate notion made total sense. The way of listening to the clients body- the strains and unique cellular reaction, as well as the words they use to describe their experience allows you to help settle broader systems and release tension throughout. Through releasing physiological reactions to stress, I learned the importance of the mind in this and all dis-ease.
I went on to study Vipasanna meditation in Thailand, ordained in a monastery. Vipasanna is often called acknowledgement or mindfulness meditation and is the training of the brain to be able to prioritise and focus. The simple act of acknowledging experience as it is, separate to our emotional reaction to that experience allows you to not burden yourself with the stress that daily life can stack up on you. It is a living practice- one that you can practice all day long going about your daily life, not just sitting in a quiet room. The strength of the mind is phenomenal and having coping mechanisms for dealing with life is a vital part of anyone’s well being, ME or not.
For many, life touched by ME is forever. I am fortunate enough to say I live completely without symptoms although I have changed my life to stay that way. As a self employed single mother with a mortgage, you would think there were enough causes to send me into relapse, but knowing the path to health and the signposts along the way to illness mean I can stretch what people think is possible. In 2012 I swam the English Channel and 4 months later I became the first British woman to swim the Molokai channel in Hawaii. This summer I am attempting a world first- to swim from Cornwall to the Isles of Scilly. The relentless nature of ME created the drive I am imbued with that I can survive, the cold water is not as uncomfortable as the ache of fatigue and the dogged nature of recovery allows me to keep going long after good sense and reason dictate I should get out!
The journey to health is not a straight line and takes into account nutrition specific to you, your personal reaction to the stresses in your life both positive and negative, your approach to life and where you are trying to get to. Unpicking long standing habits is challenging and sometimes scary, but can give you the freedom to move forward and achieve your potential, far beyond your accepted limitations.