You may not guess from his appearance that Howard Avis has a frequently debilitating illness.
But the 49-year-old has chosen to speak out about a condition that led him to abandon his dream of becoming a solicitor and occasionally makes his life “hell”.
Howard is just one of the 250,000 men, women and children in the UK affected by the chronic, fluctuating condition Myalgic Encephalomyelitis, better known as ME. And by sharing his story during ME awareness month, he hopes to help others understand what it’s really like to live with it.
Howard said: “I feel ill, tired and washed out most of the time. My parents are my main carers. I can wash and dress myself, but cooking, cleaning and most mental and physical exertions make me very tired.
“Planning everything in my life is a real struggle – I never know from one day to the next what I might be able to do on any given day. I can no longer do things on a whim or spontaneously and I will often have to cut short an activity when I start to feel tired or risk feeling exhausted for several days afterwards.
“My body clock is dysfunctional. I occasionally suffer from insomnia when I don’t sleep at all which makes my daily life hell.”
Not only is ME a very variable illness, with symptoms changing over time, but it also affects people in different ways and to differing degrees. Some people make good progress quite quickly, while others can remain ill for a number of years. For many, the illness fluctuates, with periods of remission and relapse. A small minority are severely affected – bedbound or housebound – for long periods.
The biology of ME is still not properly understood, and there is no definitive test for it. This means that many patients wait a long time for a diagnosis.
Howard was studying full-time to be a solicitor before he became ill 16 years ago. He has reduced mobility and is restricted in all activities of daily living. This has a huge impact on those around him, too.
He said: “My family and friends are generally supportive but have had to get used to me not being able to do things spontaneously or for very long. Sometimes they have to get used to me cancelling events at short notice because I am just too ill.
“I work part-time as a local authority councillor. I doubt most of my council colleagues know I have an illness because to most people at first glance I don’t look ill. ME is like diabetes or epilepsy: if you didn’t know I had it, you would never guess by my appearance.”
Howard copes with his symptoms by balancing what energy he has with regular rest periods. This approach, known as pacing, is reported by many people with ME as helpful in managing their symptoms. But it is not a cure – and there is no cure for ME.
Action for ME says more research is needed into the condition to find out what causes it and why it affects people the way it does.
The charity campaigns and invests in pilot research projects, as well as offering support and information to anyone affected by ME, including carers and family members.
Visit www.actionforme.org.uk or call 0845 123 2380.