by Jeanne Hambleton©
Did you guess what WYSIWYG meant? Ten brownie points – go to the top of the class if you did. For those of us who might be a trifle slower (i.e. fibromites), it means WHAT YOU SEE IS WHAT YOU GET. Yes it took me a time to work it out.
This is part of my new outlook on life – I was going to write philosophy but I was not sure I could spell it. (Maybe it is filosiffy?) Did you know you can sepll wdros anawy you lkie and popele will still raed and unredtsnad it. Only the first and last letter must remain in the correct place. It is amazing – that is if you can read it.
This has nothing to do with fibro fog – my problem. FF (fibro fog) makes you wonder how to spell a word you have used all your life – silly I know, but it is true.
I had to smile when a well-known American author described fibro fog as “the wheel is still turning but the hamster has left town”.
Sometimes when someone speaks to you it is like a gabbled unintelligible radio message, which suddenly becomes clear in the middle of a sentence. You then find yourself saying, “Sorry, I missed that. Can you say that again please?” All very embarrassing! But you get used to our funny little ways.
Does this brain fade-cum-fibro fog happen to you? Fibromyalgia can take years to diagnose and many doctors do not even recognise the symptoms. What is more at least 2% of the population have it and maybe 10% are walking around undiagnosed and wondering what ails them. Every week I hear about patients telling their doctors they believe they have fibromyalgia – a thought that has not entered the doctor’s head. We do need to raise awareness.
But to get back to the plot, I have decided to let everyone know about the real me – warts and all – come out of the cupboard if you like. Since my diagnosis of fibromyalgia in 2002 at the end of a very very stressful job, when I believed I would never walk again, I have struggled to get back to where I once was – but no such luck. Of course I choose to forget it is five years on – and during that time I have regularly been in denial. I would pretend I was fit and well and even made applications for jobs – but it did not work out. Now we have a law to support the disabled that might all change. I live in hopes. Anyone looking for a witty feature writer/columnist with a strange sense of humour and a few quirky fibro ways?
I now realise if I am to achieve what I have decided is my destiny- writing and editing a book about this awful syndrome with so many nasties – that I must put my hand up to being proper poorly sometimes.
So I am out of the cupboard, shouting the odds, writing a book here in the UK as a labour of love about fibromyalgia from a patient’s perspective, after 5 years of research into this dastardly disease and invisible disability. Now it really is What You See Is What You Get!
So as I have decided to put my cards on the table I thought you might like to hear what I have been up to and a bit about the book I am involved with…the book includes my interests, what I do every day and my long term hopes for the future.
It all began when I went to California on 18 months ago to attend a short intensive conference about fibromyalgia, courtesy of the Surrey & Sussex Fibromyalgia Support Group. The conference was called FAME (Fibromyalgia Awareness Means Everything) and it was hosted by the American National Fibromyalgia Association. It was amazing and turned out to be a life changing experience.
I am obsessive about collecting give away literature – facts – I love facts and hate fiction. I collected so much paper on that US trip that I had to buy an additional suitcase to bring it all back to the UK and pay for excess luggage. Back home I had all this knowledge about new research and wondered what to do with it. Josephine Fisher, the then chairman of the Group and I talked about feeding the information in the bi-monthly magazine but decided it would take years to spread the word. I did a short report for members but there was still a mass of information to be talked about.
Eventually I came to terms with the fact I would have to write a book. At that time a very smooth Canadian handsome businessman I had met in the States, agreed to fund the book for the first print run. I was on a roll and there were not enough hours in the day to spend on the book. This went on for months until I was almost square eyed looking at the computer. At this stage the book was destined to raise awareness, especially in the UK, and raise some funds towards the cause – FM. I even hoped it would become a milestone book and dared to dream it might be a best seller among books about health. You have to have a dream – and I had mine.
Picture this – it is Christmas week 2006 – nine months after the book project began. The children had written to Father Christmas (so had I), the decorations were up and the fairy tree lights shone brightly. I hoped my presents would include additional ink for the printer, a bigger memory for the computer, more A4 paper and a medical spellchecker – to keep me going.
I was at the computer thinking about taking time off for the festive season when an email arrived on my desktop. You have guessed it. My smoothie businessman had chickened out – some business crisis – and there would be no money. What a Christmas greeting and shocking timing– to say I was gutted would be an understatement. Maybe he thought it was a good time to bury bad news. I will never know. We are not speaking right now.
After Christmas as I was commiserating with another fibromite, she suddenly pushed £20 in my hand and said others would chip in to my publishing fund. At that stage I did not even know I had a publishing fund. The book was at a standstill – I had nothing to lose.
I know some things are sent to try us and we learn from adversity – but this was one big lesson – a king sized learning curve. I felt passionate about what fibromyalgia had done to my life. It had robbed me of my career and a fit and happy lifestyle. I loved my work and was a workaholic beyond redemption. I was glad I would not die from fibromyalgia unless my compromised immune system took a turn for the worse, but I also knew I must live with the pain for the rest of my life.
I wanted to raise awareness and like so many other fibromites, I wanted a cure. I had not begged for money for the book at this stage, as I believed the handshake and promise would hold good. If I was to raise enough money to publish I needed a purpose and I had one.
The lack of funding changed everything except my intention that I would not profit, in any way, from the book. It was decided that the project would be entirely a labour of love – a non-profit making book. There would be payment for contributors, no fat fee for any publisher, or commission to the editor/author – it would all be about the passion to raise awareness and to support funding for some urgently needed research into any of the problems associated with fibromyalgia.
My New Year resolution was to spread the word, tell friends, write articles and I sent so many begging letters I almost lost friends over it. I now seem to have two lives, including one where I no longer bore my family and friends about my fibromyalgia or details of the book unless they ask.
Now nine months on we are steadily building up a balance with £5 here, £25 there and a couple of pledges from groups who will donate when (not if) we publish the book. I say we, because it is no longer my book, but a community book. It belongs to those who have sponsored and believe in the book’s mission – to see it published and raise money for research and bring some self help to those isolated, depressed and living a life with fibromyalgia.
But this is not the end of the tale. Someone with more power to their elbow than I could ever hope for, has now come into the picture. I have always believed I had a Guardian Angel but there the belief stopped – until now. One of the fibromites, Denise, whose story I wanted to publish, was knowledgeable about angel healing. We talked about doing something for the book about this form of healing.
What happened next even surprised me – a cynical journalist and news reporter of some 30 years experience. I was given the address of a renowned angel therapist who I wrote to and asked if she would contribute to the book. She agreed, said she was humbled to be asked, and said the angels had asked her to help me. So who has friends in high places then?
So Michelle Robertson-Jones of http://www.sanctuaryofangels.co.uk will be teaching a group of people in search of healing and their Guardian Angel, through an Angel Experience Day, to help raise funds to publish the book. I think this is the best kind of help you can get. This will be her very last Angel Experience teaching as she is moving on to other angelic things.
This will happen in West Sussex, UK, possibly in November or maybe January, but Michelle’s clients come from far and wide – even from Russia and I am sure that is ‘with love’.
That is not my only good news. The Sussex Freemason Charities encouraged by the Pagham and Felpham Lodges, who gave me their support for the publication of the book, have also promised me a grant. I really am getting the help I so badly needed.
So there is now a real light at the end of the tunnel and I look forward to hearing the presses rumbling in the not too distant future. By the way the book is called Pain 24/7 – The Fibromyalgia Jigsaw ©.
If you are interested there is a way you can get your name in print in the book – become a sponsor. If you want to know more about sponsorship and to be notified when the book is published, email me at firstname.lastname@example.org. Forgive me if there is a delay in replying but some days I have my head in the book writing away and dare not stop and read my emails. Let us talk soon. Jeanne