I struggle on with my aches and pains trying not to bore folk with my ‘pain in the butt’ – yes it really are fibromyalgia down there. But there are times when I feel particularly humble and this is one of them.
I think you will agree with me when you read this little story. We have all been shouting about the Fibromyalgia Awareness Week in September and encouraging folk to do their bit to raise awareness. I even said raising awareness was more important than fundraising – silly me!
But this week I had a nice surprise. A lovely lady who lives in a little village in the heart of Bedfordshire, UK, had organised a coffee morning with her own bedside manner, from her bed and entertained 62 people in her home, raising over £591 for the fibromyalgia cause. Before her coffee morning she wrote to me and said, “Have felt very unwell. It is so easy to lump every thing together and say this must be FM.”
She did it her way – with fibro flair!
In spite of terrible pain with her fibromyalgia and other complications, which she may not like me to mention, Joan Chappell with the help of her husband Graham, family and friends went ahead with an event she had been planning for weeks. But like all fibromites she had no idea how she would feel on the day. As it happens she was full of pain and a bit more than “indisposed”.
A fibro flare is the onset of severe aches and pains often with chronic fatigue that can be triggered by stress, a family upset, a change in the weather or lots of things. You can look so well and feel so awful. The severity of the flare can mean bed for a few days or feeling sorry for yourself while sitting in an armchair. This however was not quite the case for Joan Chappell and her report of what happened gives no indication of how she was really feeling.
In her own words she wrote, “As it was Fibromyalgia Awareness Week and I realised that not many people locally had probably even heard of fibromyalgia, I decided to hold a coffee morning at my house to try and raise awareness, and at the same time raise some money to help things along.
“I was delighted to find that my friends were willing to help me with this and they took over running a cake stall, bring and buy, and a raffle. I also had some help pre-selling tickets. I was also amazed at the support I had from local shops in donating raffle prizes.
‘Thankfully the day was a great success. When we counted up afterwards we found that we had raised a substantial £591.50. I therefore decided to donate £441.50 to the Surrey and Sussex Fibromyalgia Support Group, who has supported me so well in the last year, in spite of the fact that I live in Bedfordshire.
“The remaining £150 is going to Jeanne Hambleton to help with the publishing costs of her new book Pain 24/7 The Fibromyalgia Jigsaw ©, as she is donating the profits from the sale of this book to FM Research.”
For the book this is a great donation and it means I am a little bit nearer publication date. You may ask why I am soliciting money to go into print? Self-publishing the book by raising the costs before printing, means there is no publisher’s commission or writer’s commission to pay and more sales money can go towards research. The book becomes non-profit making.
Whether we find a cure in the next five or ten years through research remains to be seen. Fibromyalgia is such a complex syndrome with so many symptoms and diseases cohabiting, that it will be almost impossible to find one cure to help all of these problems. But if we can help fibromites feel less pain, have no chronic fatigue, sleep better, have clearer thoughts with no fibro fog, live with a positive attitude, and not feel isolated or depressed, we will have made some headway towards making their lives better. Failed marriages with partners who just do not understand are quite the norm for fibromites.
I hear stories of youngsters helping their mothers with cores, brushing their hair and helping them dress. Others are not so lucky and lay and wait for help to come. Fibromyalgia is a dastardly disease,
Fibromites are disabled people who deserve respect and should be recognized by the Government’s funding programme for research into conditions with no known cure.
On that sobering thought can I give you a very gentle reminder please? If you have not already done so, please sign the e petition for “FibroFunding”. It takes no time at all and does not hurt a bit.
LESS THAN EIGHT MONTHS
I know you are going to hate me for this but here goes anyway. Today I saw diaries for 2008 on ale in the local shops. My first thought was, it is now less than eight months to World Fibromyalgia Day – May 12 2008. Is it too early to start thinking about what you will do to raising awareness on that day? I think not!
How about a million letters to the Prime Minister? All about fibromyalgia, of course. That would take a bit of organising but if you start now….let me know if you need any help?
If we are not in print with the book Pain 24/7 The Fibromyalgia Jigsaw ©, before World Fibromyalgia Day, May 12, it would seem like a pretty good day to have a book launch. Watch this space!
by Jeanne Hambleton © 2007