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by Natalie Wilson. Originally posted on Metro UK on 22 Aug 2018
I’ve always had Ehlers–Danlos Syndrome, a rare inherited condition that affects connective tissue. But at 19 a blockage in the back of my brain meant my condition deteriorated fast.
I went from being a student out partying all the time to not being able to walk, talk or get to the toilet. After brain surgery it still took me a good three years to leave the house, and I got very deconditioned which caused problems with my joints and muscles.
I believed that if I built up my strength I’d find life easier, but I never foresaw a time when I wouldn’t be disabled.
My husband and I purchased a recumbent trike which I began riding to go food shopping. It gave me such a feeling of independence to know I could do things for myself again.
I started doing longer rides, and then, one morning, I woke up feeling that I needed to achieve something. When you’re sick a lot of the things you always thought you could do get away from you. I have always been fascinated by our country, so I spent three months planning the trip that would take me round the entire British coastline, covering 5,000 miles in three months.
It took me a while to build up my mental strength. I was scared knowing that I wouldn’t see anyone for long stretches of the road but in the end, so many people joined me along the way.
Some just did five miles, others came in their wheelchairs. I met people as far away as the Orkney Isles who had EDS.
I was in the local newspaper and the next day I walked into a shop and the shopkeeper recognised me, saying ‘I’ve got EDS too!’ It brought the EDS community a little closer together.
Indeed, meeting people along the way was one of my highlights.
Riding a recumbent trike, people always ask questions. On one occasion, I’d had a really bad day with torrential rain and I needed some dinner.
I turned up at the village’s little pub and the landlady said they didn’t serve food, but she had some frozen chicken nuggets and chips she could cook for me.
Categorized in: Ehlers-Danlos in the News