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01 March 2021

Reimagining my mobility

Katy shares her experience with coming to terms with using a wheelchair and the new mobility this has given her.

My name is Katy Deacon, I am a mother of two young, lively children and a wife to a wonderful man. We all live in West Yorkshire, a very hilly and fairly inaccessible part of the world.   

I am heading into my tenth year diagnosed with MS and I have been very up and very down throughout my experience.

Receiving a diagnosis

I was diagnosed with MS in 2012. My symptoms began the year before with the failure of my bladder and bowel, followed soon after by difficulty with my legs. Now I am considered doubly incontinent.

By 2017 I was unable to balance and had to walk with two crutches for short distances inside or use a mobility scooter for anything more than 10m outside because clonus would take over and knock me down.

However, an MRI in 2016 showed that whilst I had additional lesions from my 2012 scan, they were very old and I had absolutely no activity in any of the layers of the MRI scan. So my neuro suggested I should consider myself as having a spinal cord injury rather than having multiple sclerosis. So by managing my MS and following the OMS pillars I’ve managed to successfully put my MS to sleep.

That’s all well and good, but it doesn’t help the clonus in my legs or my ability to walk. I eventually got to a point where I was damaging my arms and wrists because of the pressure I was putting them under with my crutches. The whole situation was causing considerable anxiety, especially as my main concern was always “can I get to the toilet in time?”. I was very limited to the distance I could walk, which meant missing out on activities with my family. With hindsight, I can see that I needed a different perspective, but I just did not want to let go of my ability to walk.

Life in lockdown

Then, in March 2020 we went into lockdown and everyone’s world changed. I decided that in this scary situation I needed to be brave. I had a wheelchair which sat in the garage, to aid me getting from the house to the car on a bad day. I decided to bite the bullet and see what could come of being in a wheelchair throughout the day, seeing as if I wouldn’t be seeing anyone at work to be able to get any therapeutic effects from outside of the house.

Whilst this could’ve been looked at as a step backwards, it actually was a mighty leap forward. In the breaks between lockdowns, because I was in my chair, I was able to go out with my family! We had days out to theme parks, to the cinema and to the local park every weekend to see family members and I was able to be with them. It was such a special time and really helped me realise that my wheels give me a new ability and a tremendous amount of liberty.

As I don’t actually have a spinal cord injury, I don’t qualify for NHS support. So, I researched the support that I can access. There are some fantastic websites out there and brilliant charities. The training that is provided on the back up app is wonderful and really helped me.

In this lockdown world, I now can make a cup of tea for myself and my husband and take it into the living room by myself, which I hadn’t been able to do for all of the years I needed to use crutches. I am able to do physical activity which I have missed for so long and I feel fantastic for it. I still do mindful physio with my legs every night and I make sure I am using my standing frame to maintain my leg strength as much as I can

I am now looking forward to the adventures that our vaccinated world will bring, with additional mountain bike style wheels to my wheelchair which will allow me to go off road!

I held on to my walking ability for so long, but I eventually realised it was limiting my actual ability to live. I really miss being able to skip down the road with my children, but those times have gone now and I need to look at what opportunities my wonderful, wheeled world can provide.