To say that CFS, or Chronic Fatigue Syndrome is 'disruptive' is somewhat of an understatement. It affects every one of the 20 million people who have it in very different ways.
Even with five years and 10 months of pain and suffering, I’m still learning to live with my complex array of dibilitating fluctuating conditions. Personal conditions such as mind fog, aching musels, arms, feet and joints, Inflammatory Bowel disease, inability to stand and walk, chronic exhasution even after 19 hours sleep, depression, irrtability, poor attention span and forgetfulness. The social cost is loss of income, isolation, a profound sense of loneliness even with loved ones. Everything is an effort the impact of which has to be planned for.
The name “Chronic Fatigue” implys “being tired with flu like symptoms”. For me this is not in any way a useful mental picture. That's why I wanted to give a TEDx talk - so that I could help people understand what the impact really is, and crucially to share my solution as to how we can all raise our awareness of our everyday health, and find better and kinder way to take care of ourselves and eachother.
So attending a breakfast meeting would seem simple enough but every effort has a cost. A few weeks ago TEDxBristol held a sponsor's breakfast at their premier partner's offices Burges Salmon - a jolly affair aimed at raising more support for this year's event.
I arrived in a reasonable state for my invisible condition. When it was my turn to present, it seemed like five years and 10 months of suffering found a clear voice and channel. I can’t recall what I said, but the audience appeared to be following my every word and were carried by the atmosphere and presence of human honesty and directness. I dared to disrupt how we relate to one another and offering a positive soulation!
Once at home I felt inspired mentally but exhausted physically and emotionally by talking, like I had run a 45 mile marathon. I went to bed and had 10 hours of unrestful sleep, moved around the house as if I was learning to walk again, and tried to have the simpliest of conversations, forgetting family names and unable to complete my sentances. The next day was the same, nothing on my to do list got done. Two hours of effort lead to 29 hours of attempting to rest intensively aware of the variety of bodily pain. Only three days later was I able to return to what is now my optimum state of four hours, made up of 20 mins of useful activity here and there, across a day. The cost may seem high, but it is was certainly worth it.
Health professionals still treat CFS as a psychological condition treated by pain killers and counselling. That’s as careless as attempting to treat, say Ebola with Cognative Behavioural Therapy! More people need to know about this hidden condition, and while we wait for research to establish the cause and possible cures, we all need a better set of tools and compassion to support our plight. That’s why I invented the WIB®, (Wellbeing Indicator - see blue dial on pic above!) Thats the topic of my TEDXBristol talk - how we can use something as simple as a number to indicate how we are feeling - when words feel too much.
If you would like to know more, come and dare to disrupt our shared consensus reality and hear how I found a disruptive healing solution by talking in numbers to enhance wellbeing.
Alan's TEDxBristol talk Wellbeing:What's Your Number is on 2nd November 2017 at TEDxBristol: Dare to Disrupt, Colston Hall. You can read more about his talk here.