Sunday, 15 May 2016

My article for ME Awareness Week 2016

My article below was published during ME Awareness Week 2016. This was followed by the 'Missing Millions' global awareness day for ME which resulted in empty shoes being left outside the UK Department of Health (photo attached here) : 

Describing ME is almost beyond words. Like many long term health conditions, it is like living in 'another country'. Some say ME is similar to 'unrelieved 'flu' but this simply does not describe a condition that affects the body comprehensively. If one were a mobile phone, one's battery would have gone completely flat, on a desert island.

Yet lack of physical and mental energy is only part of ME's complexity. The worst part is feeling toxic in one's DNA ('ongoing malaise'), prematurely aged (caused by having a chronic illness) and deeply confused (due to cognitive issues).

The level of disbelief (and even scorn) directed at ME is disheartening and undermines relationships. It adds to the burden of what many see as a cruel, frustratingly invisible, multi-system health condition. I'm very proud that my workplace applies the 'social model' of disability to ME, making it possible for ME to be treated equally with other health conditions in the workplace.

I've worked full-time with managed ME for a number of year, with support from workplace adjustments. I work regularly from home which helps me manage a complex diet and gets me away from air pollution in London, high levels of which I try to avoid in heat. A high screen to reduce cognitive/neurological over-stimulation and low carbon overhead lighting relieves residual photophobia. Without these adjustments, my sick absence would rise.

I see my ME as a result of the Western lifestyle and its high sugar, processed diets lacking real nutrition (though I accept that others may take another view). Having corrected this, I now look and feel very well. For years, I could not walk, think or talk much: it was like having a stroke and my brain took some years to re-network. I still avoid pushing my muscles and I never cycle (which I used to love). I use Nordic walking poles for uphill walking and avoid all chemicals. I eat a detoxifying organic, unprocessed and additive-free diet to stay fit enough to work.

When I was ill, I lived in cold, damp and mouldy conditions on a very low income. I felt that a low income delayed my recovery which again, reduced my potential income for years. I much prefer working running a central heating system at 19 degrees than languishing in a Catch 22 situation that I can only describe as 'having fallen through society's safety net'. In my case, I could not get sickness benefits, either.

Most people with ME can operate within strict parameters by doing 70% of what they think they can. The ME 70% rule is known as 'pacing'. I treat ME with both pacing (I now do 95% of what I could do) and diet. I energise my body with optimum, high performance nutritious 'fuel' and make health my number one priority. 'Health' is my secondary career....

Some people develop ME and think they need total bed rest, yet those who get better tend to exert themselves - often for others - which can be energising. They walk but never overexert their muscles, or do any sport.

The complex 'all system' impact of ME can shock the most resilient and able in the workplace by threatening their sense of identity, based on strength and achievement (which some never recover from). I see it slightly differently: where would I be now but for The Equality Act?

There are benefits in having ME. I found that people with ME are 'real', open and cooperative - like many people with disabilities. The renewed sense of well-being on recovery permanently heightened my perceptions. ME opened my eyes to children in need. I founded the national charity of children with ME The Tymes Trust, recent winner of the Queen's Award for Voluntary Service. It was having ME that made me want to fight for our toxified planet.

Where am I now? I live between invisibly marginalised realists and a world of fit people some of whom are possibly skating on thin ice, in terms of ongoing health.

I am ambitious to publish a cookbook on an ME recovery diet. I would like to offer individuals short respite care for ME. For more information see:

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