What I need is a chair… with wheels

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Wheelchairs. Oh, wheelchairs, wheelchairs, wheelchairs. One of the most terrifying and daunting prospects facing all newly diagnosed MSers is the need to use a wheelchair. For the first couple of years after my diagnosis I was so scared of needing to use one that I went into a state of complete denial. You see, during that time (before I was on hard-core medication) I really did need a wheelchair but would never have admitted it. Many a time I found myself clinging to railings, stubbornly dragging my feet along the pavement or even crawling pathetically along like a drunken slug. Or I would bounce from lamppost to wall to bench to passer-by… whatever or whoever I could find to keep me upright and keep me moving. I did NOT need a wheelchair thank you very much. If there was nowhere to sit I sat on the floor, even in a queue. At one point I had a walking stick that, in the right hands, smoothly transformed into a portable seat; alas in my hands it was a rather clumsy transition and I therefore found it more trouble than it was worth. If I could go back in time and slap myself I truly would. The amount of fun I missed out on and the amount of stress my limited mobility caused could have so easily been avoided if only I’d stopped being so pig-headed and accepted that a wheelchair would vastly improve the quality of my life.

Then one day I was struck with unexpected envy at a lady using a wheelchair and in an instant my attitude changed. I was visiting the beautiful city of York and despite having a wonderful time we found ourselves constantly worrying about where the nearest seats were and which routes were the shortest to various historic sites. Anyway, I was strolling along (oh, who am I kidding? shuffling, I was shuffling along desperately clinging to my husband’s arm) when a man whizzed past pushing a lady in a wheelchair. Oh, to be in that chair, I thought. My legs were screaming, my eyes were screaming, my whole body was screaming and right there and then I experienced some kind of revelation. I need a wheelchair. There are times when I do actually need a wheelchair. And so I now use one whenever the need arises – and having children means I’ve even been known to form a train with me pushing a buggy and my husband pushing me. On a side note, if you ever want to feel really tiny then sit in an American wheelchair – On arrival in San Francisco I was met with the hugest, widest wheelchair I have ever seen in my life – there was easily room for both myself and my husband. With my feet dangling off the edge of the seat I felt like a little hobbit being wheeled around by Gandalf disguised as a butch American airport guy!

An incident that prompted this post happened while I was at the Norfolk & Norwich hospital for my latest Tysabri infusion. I arrived at the Rheumatology Day Unit (where infusions are usually administered) only to find that the nurses had been kicked out of the unit and sent over to a disused private ward at the other end of the hospital. One of the nurses kindly led the way as I had no idea where I was going. Well, blow me – the speed at which she proceeded to march through the maze of corridors – I was left dragging my feet and grabbing for the hand rail along the wall in an effort to keep up (and I’m sure the heat in that place made the whole thing worse). By the time we arrived I was on my knees! Thankfully my Neuro nurse saw that I was struggling and wheeled me back at the end of my infusion. There must be a way of introducing some sort of corridor train or Segway system to hospitals…

How do you feel about using a wheelchair? Do you embrace it as a means of helping you live your life or do you stubbornly resist? Or maybe you’ve never actually needed one but have the fear of needing one hanging over you?

First published 2 February 2018

 

4 thoughts on “What I need is a chair… with wheels

  1. Yes im still in the denial place.My passion for being a great shopper has diminished due to my 6-8 hours of walking the lengths and breadth of the city now down to 2 hours max and it’s either castle mall or chapel field with 2-3 coffee stops and I’m shattered but in 10 months my daughter gets married and I don’t want to be in a wheelchair so my stubbornness prevails and ‘I’m fine’ gets me by.

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    1. Keep the stubbornness! And don’t lose your passion for shopping – you just need to adapt to a new way of doing it, which it sounds like you’re already doing with multiple coffee breaks! It took me a loooong time to accept that I can’t do all the things I used to do, or at least not in the same super speedy, confident way that I used to. But the key is to never give up or give in : )

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  2. I did my best to avoid using a wheelchair for 6 months. We had one as I am progressive. Finally I gave in and it is amazing how many other wheelchair users are around…. I use it most of the time and am constantly experiencing the non awareness of other people who stop suddenly or step back unexpectantly. If it helps embrace it. (Ps airlines will transport them free)

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    1. Awesome, glad you’ve managed to embrace it! It’s interesting to see how people react / interact with you when you’re in a w/chair, hey?! I’ve experienced a lot of surreal and awkward moments with people who assume I’ve had an injury (maybe because I look young and healthy?) and then get really flustered when they realise I have an actual condition! High five! Emily

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