by Jeanne Hambleton ©
NFA Leader Against Pain-Advocate
PAIN 24/7 - What does that suggest to you? A constant reminder that you have chronic fatigue syndrome, myalgic encephalomyelitis or fibromyalgia (CFS/ME or FMS) together with the other nasty problems that can exist when you are suffering with chronic pain 24 hours 7 days a week.
That is what I thought. I also considered the fibromyalgia syndrome was so complex with so many symptoms with pain that move around the body – neck, back, shoulder, joints, muscles and even the butt.
If someone asks you how do you describe fibromyalgia and chronic fatigue, the chances are you will pick out different symptoms – just like putting a jigsaw together to build up the whole picture – our picture.
You can now see how this book was born. I thought long and hard and it took some time to decide what I should call this book, written and drawn together as a ‘labour of love’ and out of pure passionate to raise awareness. The name came to me in a flash of inspiration.
I was angry about fibromyalgia as it changed my life. I sat in an armchair and believed I might never walk again. But I did and I had the strength to write and edit this book after years as a journalist writing about other people’s pain. Now it is my turn to tell the world what a rotten debilitating syndrome this really is and how you can learn to live with it.
The ‘labour of love’ bit is not just figuratively speaking. It is for real. No one is receiving any recompense, or expenses, and money raised to self publish this book will mean money from the sales will go to research – maybe to find a cure – who knows?
Finding a cure for a syndrome that has so many symptoms may not be that easy but if funds can be raised to provide a quicker diagnosis, educate our GPs, or open even one FMS/CFS/ME clinic it will be worth it – anything that will make the life of those with acute pain easier to live with. It is my hope the book will help to raise awareness as it travels around the world to the clinics of those who have contributed to the book.
This book will be truly international with contributions already received and on the way from New Zealand, Australia, Israel, Spain, United States, Canada, Northern Ireland, Scotland and England.
In this my first article devoted to the new book, I must thank all of those involved – people who have shared their expertise, friends who have offered to help and provide guidance, and Penny Jarritt who has toiled without a murmur, reading chapter after chapter to look for typos and obvious mistakes.
I must not forget those who have given donations, large and small, to what has become affectionately known as “the print-it fund”. Without their belief in the mission of this book it would not have happened.
We hope to offer some self help those with chronic pain, to enlighten those who think they might have FMS/CFS, and to awaken those who will eventually realise their aches and pains, chronic fatigue, sleeplessness, fibro fog, are symptoms of these syndromes. The book will also help those under pressure from stress overload, which is considered to be one of the main triggers for these invisible disabilities. We hope they will change their lifestyle, enabling them to carry on living and working with FMS/CFS.
We have been most fortunate to have help from some of the leading experts in the field of FMS/ CFS, chronic pain, fibro flares and all the other nasties we have to live with. Specialists have written about children with fibromyalgia and their growing pain, and there is news concerning the recognition of Gulf War Syndrome.
Others have shared their motivational stories with us. While fibromyalgia, chronic fatigue and pain may have changed their life they have pulled up their ‘boot straps’ and got on with living to the benefit of others suffering the same pains.
There is news of claims relating to nutrition and how this has eased the pain of fibromites. The book will include information about gentle exercises, complementary therapy and some funny fibro fog stories.
There is so much to say and still much to learn about this rotten syndrome. The book is now moving forward and we are looking forward to publication possibly in the springtime next year – 2008.
From time to time I will be bringing news of some of the interesting information I have gathered while researching this book.
If you do not want to miss the publication date and wish to send a comment to me about this, I will add your name to the advance notice list so that you will be one of the first to have access to the book. I already have a list of fibro folk who have each donated £25 to guarantee a copy of the first edition, with their name and a brief dedication printed in the book next to others who have faith in the book. It is really very humbling to receive support of this kind and all of us, who are involved, are very grateful for this support for ‘our’ book.
I will be back soon. Jeanne
