To understand what living life with myalgic encephalopathy (ME) entails, imagine this scenario: you sleep badly, wake up exhausted, your mind trying to shake off the confusion of disturbing dreams. With disbelief at how it is possible to feel so hungover without having consumed alcohol the previous night, you proceed to embark upon the day with the best of your ability.
Pooling all energy reserves you dress at midday and force yourself to venture to the corner shop, feeling dreadful and pushing yourself to the limit. Where upon you meet that person who inevitably says: “Hello, you’re looking well!”
The very nature of ME – an essentially invisible illness – means empathy and sympathy are scarce, understanding poor, and acknowledgement and support from health professionals is a long time coming.
But I’m pleased that all of the above are finally turning around.
Nine years ago when I was diagnosed with ME there were no local treatment or support and I was offered no way forward. All attempts to receive funding for in-patient management at the closest ME specialist hospital – 100 miles away – were refused on the grounds of insufficient evidence to suggest improvement.
Now I receive regular domiciliary visits from one of the many ME professionals working in specialist units, which the government have opened across the country. They give ongoing support and invaluable advice on ME management.
Throughout this experience, I have come to accept temptation as it bangs on the door with its “boom and bust” encouragement.
I have found a way of enjoying life within the constraints of a debilitating illness. Social services have also contributed to this quality of life, through the flexibility offered by direct payments, a godsend in having such a fluctuating condition. The support I receive in performing daily living activities frees up precious energy and enables me to make progress.
I still face a daily battle of weighing up having fun and living life versus the rigidity necessary to aid recovery. Plus I am trapped in the zone of “age amnesia”. I may be 31 now but psychologically I am forever 22, the age I became ill. All around me the world moves on and my friends and family enter new stages of their lives, but I am frozen until my life truly restarts again.
In the meantime, I see humour as my tool to survive, smiling inwardly at facets of my behaviour. From failing to hold a coherent conversation to squatting on the floor in shops to restock energy levels while simultaneously appearing “normal”, I take it all in my stride, no longer letting it hold me back. I am still subject to the “you look well” comments but I have come to realise this is a compliment and an achievement. I’m still looking good despite the odds. The difference being I no longer have to explain or justify myself.
Diane Shortland has ME and uses direct payments