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Reimagining my mobility

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

katy by a lake

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.

Personal story progressive MS
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Rachel Gill (not verified)

You are truly inspirational- thank you for sharing your story. I have a scooter for long days out mainly for fatigue and being wobbly after long periods walking. Making the decision to get a scooter felt like complete failure that I was giving up, but in fact it has enabled me to have long days out with my family which I wouldn’t have had. Often it’s finding new ways to adapt and live life to the max and not letting feeling ashamed of that.

GrazinaBerry

Katy - thank you so much for sharing your honest and incredibly inspiring blog. Your determination, positivity and warmth are truly inspiring. I hope you continue to enjoy the freedom even more when we're through the pandemic.

Linda Boueke

Thank you for sharing your story, I am sure it will help people to reframe their view on the wheelchair!

Sue Holmes (not verified)

Katy, this is a wonderful blog and really makes me think how fantastically you are handling your life style. I agree, you have a fabulous family and you are always up to one adventure or another. It has made me realise I do not need to be feeling sorry for myself just because I have one arm out of action at the moment, the rest of my body works and I must make the most of it! Thank you for sharing with everyone. XX

Nigel Bartram (not verified)

A wonderful piece Katy, thank you very much. Clever photo too!

Constance (not verified)

Hey Katy. You probably won’t remember me but we met over a decade ago on an engineering related activity. I’m not super active on social media but I came across this blog and I just wanted to say thank you for sharing. You are an amazing person for wanting to share your experiences and many will appreciate it. Wish you all the best! Take care.

Laurie Ferraro (not verified)

Hi Katy, like everyone else responding to your blog, I wanted to thank you for sharing your mobility issues and coming to terms with what you need in your life to make it better for both you and your family.
I too, need to use a device to help me get around. This was hard for me to accept but during the teacher's strike here in Ontario, Canada in 2019, I could see that I was not able to manage on the picket line with my cane so I got a walker. That walker has allowed me to go around the block of my home and bring in all the bags of groceries in one fell swoop, plus provides me an instant chair to luxuriate in the sun at it gets stronger and stronger with the coming days of spring.

After reading your blog, I think in the future I will opt for a motorized scooter so I can go for longer hikes with my family. Thanks again for emphasizing and re-affirming the the freedom that comes from mobility devices that are at our disposal.

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