Published in InterAction 75, Spring 2011
M.E. is a horrible illness but sometimes it puts us in touch with friends we might not otherwise have met. We asked readers to share their stories.
Rebecca writes: “When I was first diagnosed with M.E. 20 years ago, I put an advert out (I think in InterAction!) asking for contact with other creative, inspired M.E. people. In the end about 10 of us decided to create a postal circle and telephone friendship network (there was no internet then).
“We used to chat about all aspects of the illness – from the physical symptoms, and the emotional and mental stuff to deeply philosophical and spiritual discussions about illness and the meaning of life.
“We would send letters and parcels around the circle, too, along with interesting or uplifting articles, relaxation cassettes, letters and ideas or just plain silly things that would bring a smile through the dark times.
“This was a lifeline for me, and I’m still in touch with some of the friends I made then. In fact, the beautiful village I live in now was a place I discovered after a member of our group suggested a retreat together in South Devon.
“I’ve found it immensely supportive to share experiences with other people who have M.E. Despite the variations in symptoms, it is both a relief and a joy to talk to other people who really understand what you’re going through because they’ve been there too.”
“At the beginning of last year I decided that my challenge for 2010 was to start up a self-help support group for people with M.E./CFS and/or fibromyalgia – I have both. I already had several friends with these conditions living locally, so I talked things through with them and all agreed it would serve a useful purpose.
“I wanted to keep the group very informal and friendly and, at the moment, we meet at my home. At the October meeting, we had about 16 attending – this just showed me what a need there was locally – and made the setting-up so worthwhile.
“I know only too well how isolating a chronic illness can be, how it can lower one’s self-esteem and cause low mood. I have, so far, had a lot of lovely feedback and we all are able to have some laughs... a definite must!
“I wanted the name of the group to be upbeat so I came up with Positive Pals. My wonderful husband David does the refreshment side, the envy of many of my female friends who would like to borrow him. Without his support I would never have got to the place I am today.
“I am starting my seventh year with M.E. and fibromyalgia but feel that I am improving. The friends I had already made, and the new ones I’m making, have certainly helped me so much, just knowing I am not alone. I hope they all feel like me and have something to look forward to each month with Positive Pals.”
“I have got to meet some fantastic people with varying degrees of M.E. over the last 20 years. They are all very caring people, and although I have nearly every symptom going – and other complications! – in just the last couple of weeks, friends have told me I’m ‘amazing’ and ‘remarkable’ and have talked about my ‘very positive attitude.’
“I keep telling myself it could be worse – and, so long as I NEVER lose my sense of humour, like many others, I will survive!
“Just over two years ago I was very dangerously ill, in hospital for eight weeks, and have had to relearn all the life skills, to walk, talk, eat, feed myself, regain the use of my hands, etc.
“Having to persevere and be very determined, finally I regained the skills in a few months. I progressed from not even being able to hold a pen to reaching the light at the end of the tunnel. I defied all the experts who thought I’d die. One day a real cure for M.E will be found – roll on that day!”
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