Keighley Jensen

home: london

Parallel challenge: 10k

Three years ago I was training for a ballet exam. I spent hours a day in a studio practicing my turns and teetering en pointe. I loved it. I was never happier than when I was dancing. I was a bit old for ballet exams but I was determined to finish the syllabus and get my teaching qualification. I wanted to teach kids with learning disabilities to dance. Everyone should get the opportunity to enjoy such a wonderful activity.

Since then my mobility has declined quite dramatically. I went from being able to land a good looking pirouette to not being able to walk twenty paces without a walking stick in about six months. Six months after that I was in so much pain I could only stand for a few minutes at a time and had to spend any extended period of time out of the house, including at work, in a wheelchair.

I saw many consultants and took a lot of medication but nothing was really helping. Opinions varied from Fibromyalgia to depression. In February this year I met a Rheumatologist who explained that I have Ehlers Danlos Syndrome-type 3 (EDS), and that EDS could reasonably explain all of my symptoms.

The realisation hit me that there was no drug that could make EDS go away. Complicated by a type of tumour called Fibrous Dysplasia in my right femur bone I was stuck with very few pain relief options and very little information on prognosis.

Missing ballet, drinking with friends and generally being a fully participating member of society I have spent much of the last few months feeling angry. I have felt angry with doctors for not taking my pain seriously. Angry with people who offered help (I don’t want help!), angry with people who didn’t offer me help (I really need help!), and most of all I have been angry at myself for not demanding a quicker diagnosis and better treatment sooner.

So I have started a blog as part of a process to feel more like me again. The first step is getting myself more active and finding things to replace ballet (although I still cling to a hope of being able to at least get through some barre work in the distant future). That is why I’m taking part in Parallel London. I have committed to complete 10k in my wheelchair. I am hoping to raise money for a local charity called Wheels for Wellbeing, who provide adapted bikes to allow disable people to cycle. Check them out, they truly are awesome.

It is going to be really hard and I am honestly not sure how I am going to make it 10K without destroying my hands, wrists, elbows and shoulders, but it is probably going to involve a lot of tubigrips. I will be tweeting and blogging my progress but at current speeds I will take about 8 hours to wheel 10k. Worst case scenario, my wonderful (and very handsome) husband will have to push me around the 10k route at the Olympic Park but let’s hope it doesn’t come to that. I am really not a fan of people touching my wheelchair!

Top tip: Get creative. Creative solutions are key to enjoying a wider range of activities

My goal: #roadto feeling more like me again