Tuesday, April 03, 2007

A Story

The story begins with a Girl.

The Girl was having an argument with her brother. She believed that she could walk across London in a day. Her brother said she’d never do it.

The Girl’s girlfriend (I know, too many girls) – sometimes known as lilwatchergirl – is also a factor in this story. Lilwatchergirl has Fibromyalgia Syndrome (FMS), a condition that causes chronic pain, severe fatigue and other random, none-too-pleasant symptoms. The Girl and lilwatchergirl have been learning a lot about this condition, and about life with a chronic illness in general, over the past eighteen months or so. Interestingly, no one else knew very much about this condition – not friends, not family, not even doctors. Most were willing to learn. There just wasn’t much information around. From others, though, we met with real prejudice - from an assumption that the condition is ‘all in your head’ (not true - this is a neurological condition, not a psychological one), to a worrying unwillingness even to believe in Fibromyalgia (which is recognised by the World Health Organization). There definitely, we realised, was a need for people willing to work towards better awareness of the condition.

So when The Girl was challenged to walk across London, she decided to do so in aid of a good cause. The Fibromyalgia Association UK is an organization that supports people with FMS and works to raise awareness of this little-known condition. The Girl is walking to raise money for them, and to raise awareness of Fibromyalgia Syndrome – so that no one else in this country has to meet with confusion, prejudice and misunderstanding when they are diagnosed with it.

Realising that walking from one side of the M25 to the other was difficult (not least because of a lack of roads), The Girl is going to walk from one end of the North Circular to the other. Her 17-mile walk will begin at Gunnersbury in the West of London, cross the City and finish at East Ham. This, incidentally, is the route of the District Line on the London Underground – and along the part of the line that she’s walking, there are only four wheelchair-accessible stations. As lilwatchergirl uses a wheelchair to travel longer distances, this lack of access to transport in London is another issue to which The Girl would like to draw attention. She’s walking on 12th May, 2007 – just in time for Fibromyalgia Awareness Day on 13th May.

The end of the story involves you. We need your support, and of course your money! Keep reading the 'walk' blog, and discover all the ways that you can help us raise awareness of Fibromyalgia Syndrome. Here are a few to get you started:

- You could mention the walk, and this site, at your blog, site or posting board.
- You could follow The Girl’s progress here as she trains for the walk, with (seated) encouragement from lilwatchergirl.
- You could sponsor The Girl at the 'walk' blog – either per mile walked (contact us if you want to do this) or with a donation.
- Most importantly, you could find out more about FMS from the Fibromyalgia Association UK.

Help us to inform others about this condition, with the goal of more equality for those with FMS - and for improved access for all disabled people, including those with ‘invisible disabilities’.

With love and thanks from Naomi (lilwatchergirl) and Sharon (The Girl), and our fabulous supporters – Vigo, our wonderful web designer, and Sharon II, our talented tech support!

P.S. Proper update to follow here soon. I've been struggling with inadequate carers, 'fibro days' and stress. All to be documented when I feel a bit better. :D