Don’t ignore ME
Carolyn speaks out about the isolation, fatigue and coping with her chronic illness
“My husband’s life has had to change as drastically as my own in order to accommodate my condition, and over the years he has often had to act as my carer. Our life as a couple has completely changed as there is so little we can do together.” ignore ME. “At the start of my illness I metaphorically dropped out of sight - from my working world and from my social world,” explains Carolyn.
“As my illness persisted, contact with previous friends and colleagues became more and more sporadic.
“Clichéd though it may be, I discovered the true friends who were willing to stick by me.”
People with ME experience severe, persistent fatigue associated with what’s called post- exertional malaise ( the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘ payback’) and chronic pain.
Any physical or mental activity can trigger a flare- up in symptoms.
“Careful planning is essential in order to avoid too many activities in one week,” says Carolyn.
“Even if I have a clinic appointment or hair cut in one week, I have to be sure that I build in rest days before and after such events in order to be able to cope with general day to day existence.
“Noise and light sensitivity rule out visits to the cinema or noisy restaurants.” Carolyn adds: “It was joining a local writers’ group which proved to be most beneficial in making new connections.
“I have the chance to meet people face to face when I’m well enough. When months go by when I am unable to attend, I am still able to feel part of the group via their online community; this has proved vital and I have now established a new group of friends.
“I recently turned 60 and as part of my celebration, was able to enjoy an afternoon tea party for two hours, with 15 friends old and new.
“As I said on the day, what made it so special and poignant was that it was the first time in 19 years that I’d been able to do such a thing. I think even they were shocked by that fact.”
UK charity Action for ME is taking action to end the ignorance, injustice and neglect experienced by people with ME.