Monday 6 October 2014

Claire: Exploring Dysautonomia through the Arts for Dysautonomia Awareness Month 2014

Today, for Dysautonomia Awareness Month, Claire is sharing her unique crafts and how they fit into her experience living with Dysautonomia. I rather like Claire's kickarse attitude towards Dysautonomia and life with chronic illness and how this is revealed in her talents. 

Hi I'm Claire in the UK. I was knocked off my feet, literally, by Dysautonomia 11 years ago. It took 8 years to be diagnosed by Prof Mathias and his team. Along the way I collected a few labels to add: POTS, hypermobility syndrome/EDSIII, Alpha1 antitrypsilin deficiency, COPD, and vestibular disorder. My life 11 years ago was very different as a full time teacher and single mum. But after going to hell and back, I now live in West Wales in a beautiful cottage by the sea , surrounded by good people and my ever faithful hound. I feel like I am on permanent holiday (on the good days). Every cloud has a silver lining. :-)  

Mens neckties are, to me, a symbol of bureaucracy, of pen pushers, ticking boxes and jumping through hoops. In the 11 years I have spent living with my Dysautonomia, this has been the bane of my life. Hours spent fighting, straining and stressing, trying to work the system and generally making my conditions worse when I should have been putting my little energy reserves in to being well. Trying to fit into boxes  that neck tie wearing idiots had created, that me and my collection of syndromes and symptoms could never fit into.

I took this symbol and started to play with it. To see if I could turn into to something positive. To make something useful and beautiful out of something that for me had been so negative. This being a metaphor, for my attitude to being laid low by these godforsaken syndromes. Always trying to find the good in everything. Along the way I have made bags , cushions, skirts, dresses, shawls, flared trousers and several Joseph's Technicolour Dream coats! But for me the cushions mean most. With one middle finger pointed skywards I say 'penpushers I show you my arse' and I sit on them (cushions that is). Oh and for extra special added joy Christmas stockings.

*(POTS: Postural Orthostatic Tachycardia Syndrome)

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,700, keep donating and hopefully we can reach $10,000.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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