Hi there, my name is Vicky and I have multiple disabilities including EDS which is a connective tissue disorder and POTS as well as many associated conditions.
EDS is a heritable connective tissue disorder that affects the collagen in my body. My 14 year old daughter has it too and I am currently supporting her through the operations and obstacles I faced at her age.
My beautiful daughter
Collagen gives strength to the skin, bones, blood vessels, ligaments, tendons, cartilage and gut, but it's faulty. Therefore I have widespread chronic pain, chronic fatigue, easy bruising, skin fragility, bowel and bladder problems and my joints dislocate.
PoTS is a condition that affects the autonomic nervous system; this means my heart rate vastly increases when I'm upright, causing heart palpitations, dizziness, extreme shaking and fainting. I also experience chronic migraines, to the point that I can't even open my eyes.
My son is 16 and has just finished his GCSEs. I am so incredibly proud of both of them and being their Mum is my proudest achievement.
My handsome son
My life is very full and I am incredibly blessed. I am passionate about fighting for the rights of disabled people, and have been actively campaigning for about 4 years now. As well as blogging at Around and Upside Down I write for many publications and blogs, mostly talking about my life and it's comings and goings. I love the fact that myself and other disabled people have had the opportunity, largely through social media, to put faces to the tens of thousands of disabled people out there, and to have our voices heard. This is what drives me. As much as I want to see change now, I am concious that we are sowing the seeds of acceptance for the next generation. I hope that my daugher will not face many of the barriers I have and that more than anything is what keeps me going.
Here's the thing...
My current powerchair is 4 years old. It is rickety and unsafe, and the steering no longer works properly. After just a few hours in my chair I am in intense pain as the back no longer reclines, something which is necessary to take the pressure of certain areas of my body. I rely on my chair for independence but currently have to make a decision between going out into the world and living my life, and spending the following days in agony, or staying inside. I am almost back to where I was before I started using my chair and I hate that my world is getting smaller again.
Unfortunately I am not able to afford a powerchair and due to strict NHS guidelines they are not able to give me much help or support either. The money raised will be used to buy me a powerchair that will fulfil my medical needs and keep me living life to the fullest, and not from my bed, in pain from an outing in my current powerchair (pictured below)
Any funds raised over the current goal of £2000 will go towards much needed mobility equipment.
I would be so thankful if you could donate anything at all, it would make such a huge difference to my life and I would be forever grateful.
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