By Jeanne Hambleton© UK Fibromite
I know I am always going on about raising awareness and fibromyalgia and this is especially important as far as the UK Government is concerned. Although we have E Petitions allegedly for the eyes of the Prime Minister, asking for support for various aspects of fibromyalgia, I have my doubts as to whether these will actually achieved any funding for research or recognition for FM – oh me of little faith.
Two of the 4 E Petitions about fibromyalgia on the No.10 Downing Street website will end this month (August) and as a supporter I am hoping to receive comments from the No.10 Downing Street web team (almost certainly not the Prime Minister). I feel sure the Prime Minister does not have time to read all the E Petitions – too busy with his politics. I almost have the impression the E Petitions were designed to save the postman delivering hundred and hundreds of letters which someone has to open and read, although rumour has it the idea of E Petitions was thought to be a bad idea.
As a matter of interest my new E Petition is to help replace those that are about to expire and can be found at the following website. It only takes a minute to do and you will feel go you have supported us. PLEASE would you please sign? I need 1000 signatures before it will be considered – 2000 would be nice. Tell your friends and family PLEASE. I am not on commission!
But my reason for writing is other ways to raising awareness during Fibromyalgia Awareness Week.
For us here in the UK and possibly the world over, the 8th to 15th September is Fibromyalgia Awareness Week. We do still of course have another annual event on 12th May – World Fibromyalgia Awareness Day. If you did nothing on that day to further the cause, now is your big chance.
Yes you have guessed it. I am going to talk about doing your bit for this FM Week. Raising funds would be a plus but raising awareness is far more important. Not sure about you, but I am pig sick of people looking at me and saying, “Fibro what?” If you listen carefully you can hear them thinking, “Poor girl – I wonder how long she has to live?”
If you are going to dismiss that thought be sure to tell them, we may not die from FM but as sure as eggs are eggs we will live with the pain for the rest of our lives or until someone finds a cure. (That is why you are signing the E Petition!)
What can you do? I have made several suggestions below with varying amounts of effort, so no excuses please.
NOT TOO HARD WITH FAMILY HELP
Find everything you have in your home that refers to fibromyalgia and invite your friends and neighbours to a need-to-know coffee morning, or afternoon tea and cake (if you don’t do mornings!) You can talk about each item connected with FM, or ask how the last 10 years has been for each of your visitors. When it is your turn you can recall what you used to do and how disabled you are now. Remind them it is an invisible disability and although you look so well you feel so awful.
Keep it bright and light with a few funny fibro stories. This event could even provide you with a few fit helpers for the future if you stage a fund raising event for FM to help your local Support Group.
If life is a struggle and a coffee morning is all too much, you could start your own letter writing campaign. Here in the UK you could write to your MP or in the States try your Senator? The MP’s address will be in your local telephone book. If you cannot find it ring the local paper. If you are feeling inspired you could write to the Prime Minister himself – Gordon Brown PM, 10, Downing Street, London, SW1A2AA, or email his assistant email@example.com. David Cameron can be reached at firstname.lastname@example.org. I am guessing here but I would think that Sir Menzies Campbell could be reached using email@example.com
The mail address of most MPs is their surname followed by the initial and the address – for example the Health Minister Alan Johnson MP – his address is firstname.lastname@example.org.
If you are using snail mail send your letter to your MP at House of Commons, London, SW1A 0AA
For information about websites, biographies and email addresses search for your MP in alphabetical order at http://www.parliament.uk/directories/directories.cfm
If you do not know who your MP is try http://www.theyworkforyou.com/ and type on your postcode. This will produce a message box, so have our message ready to cut and pate into the box.
If you think you have written a good letter to the PM, the Health Minister and your MP about your FM appealing for Government support for research to find a cure, and speed up diagnosis, including details of your life as a person with an invisible disability – the symptoms – pain 24/7, chronic fatigue, sleeplessness, cognitive problems, IBS, RLS and all the other nasties – send a copy to the Editor of your local paper. Ask him to print it with the readers’ letters, adding your own comments about what you hope the PM will agree. It is a good idea to use bullet points for the symptoms (easier to read).
Now you are on roll! Why not send a copy to your local radio station and the regional TV station? You never know they just might wonder – like everyone else – exactly what fibromyalgia means.
GOING OUT TO THE PUBLIC
If you access to lots of fibromyalgia literature you could ask your local superstore manager if you can stand near the entrance one busy afternoon and hand out literature. If you have friends you could have a table and chairs with fibromites who can talk about the syndrome and maybe encourage anyone interested to join the Group.
EDUCATING STUDENT DOCTORS
By now you should be full of confidence and really ready to go anywhere to tell your story. Contact you local PCT – Primary Care Trust (details in your local telephone book) – who are responsible for the hospitals and doctors in your area. Ask if you could talk to a class of student doctors about fibromyalgia from a patient’s perspective? You could answer their questions and help them become more knowledgeable about diagnosing FM for future patients. You would indeed be raising awareness by doing this, as so many GPs believe it is all in our head. The Fibromyalgia Association of the UK, http://www.fibromyalgia-associationuk.org, has prepared literature for the medical profession. I believe the American NFA – http://www.fmaware.org – also had medical literature for doctors.
Yes we now believe it is all in our head – but not as the GP suggests. Does your GP think it is in your imagination and that you are a mad malingerer? If so tell him it is now said that FM is due to a chemical imbalance in the brain.
My final thought would be to festoon your house or garden with balloons with a sign in the window saying “Happy Anniversary Fibromyalgia”. Someone is bound to ask you who is Fibromyalgia. Take a photograph and send it to the local paper with a caption saying you are celebration Fibromyalgia Awareness Week. I feel sure you will find this an uplifting experience and enjoy the fun. At the end of all this raising awareness you will feel you have achieved something by spreading the word – which as we know is FIBROMYALGIA.
Do write and tell me about your achievements – we can then have another go at more publicity for FM.