What’s a full time wheelchair user?

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I’m a full time wheelchair user. I have my current indoor/outdoor electric wheelchair for 18 months. Before that, I had a powered indoor electric wheelchair for, if I remember correctly about 10 months and before that I had a manual wheelchair for a good few years. I am not paralysed and I don’t obviously have any mobility issues. I don’t really think of myself as someone in a wheelchair either because I don’t meet my own mental criteria for what a full-time wheelchair user should look like.

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My joints dislocate very easily. And they do so every day. They partially dislocated even easier. I just have to breathe all day every day for respiratory muscles to get tired and allow my ribs to slide out of place. Walking puts a lot of strain on joints, but the less I move, the weaker my muscles get and since my muscles are virtually the only things holding my joints together, the worse and more frequent dislocations get if I don’t keep them in good shape.

As a result I am Schrödinger’s cat, both able and virtually unable to walk. It’s not that I can walk short distances safely, I dislocate joints more often than not in the first step or two I take. It’s that I have to keep moving regularly despite it or I significantly worsen my condition pretty quickly. This means that as assessments go, if I’m lucky, the general clinical conclusion is that I am virtually unable to walk as walking causes rather serious detrimental effects and potential permanent damage. But the average person does not have access to this information and all they see is an average woman seemingly healthy riding around in a wheelchair, parking it and then getting out!

When I first started using the wheelchair, I hated taking it out in public. The first dozen trips or so ended with me in tears, crying because I hated how much attention it attracted and how people stared at it. I’m not sure if I’m just noticing more people using wheelchairs, but it doesn’t feel like people stare at me as if I’m the first person in a wheelchair they have ever seen. Maybe I’m more comfortable, but going out in the wheelchair is no longer a big deal for me most of the time. I do still feel like I’m being evaluated, particularly once someone has seen me use the wheelchair and not use it. The instant conclusion the vast majority of people make is that I’m faking my disability.

I dislike feeling pressured to conform to an image people have in their head. I need to walk a little at regular intervals. I get stiff, the strain of sitting start to impact on my muscles and joints and despite the partial dislocations, walking is necessary to maintain muscle strength and bone density and adding bones that break easily to my list of issues is to be avoided. I find it difficult to find a balance between walking and using a wheelchair.

At home, it is easier.I use the chair when there is no help around to reduce the risk of falling when no help is at hand. I use it in the evenings and for the worst parts of the day. I use it whenever I have dislocated joints bad enough that I have to rest them. Not just ankles and knees but also wrists, elbows and shoulders.

If you’re going to partially dislocate stuff walking, you tend to grab onto things and shift your weight to your upper body. If you put your body weight through a recently dislocated shoulder, that then pops back out too and now you not only have a dislocated ankle but a screwed up shoulder too, which means you probably can’t get either back in easily.

I have it on standby all the time, never knowing when I will not be able to walk at all to get to it. I make sure that if I walk from the lounge to the bathroom, someone is around to go and get it otherwise I use the ‘chair. I have been stuck sitting on the bathroom floor waiting for help to arrive too often to even take small risks like that. Even worse, I have had an occasion where I thought being stuck on the floor with a dislocated kneecap that wouldn’t go back in with the wheelchair sat in the lounge was bad planning. When I then starting having breathing problems, (I have brittle asthma type 2 so that’s a pretty serious thing potentially), I realised I was alone and my inhaler was in the wheelchair pocket, also in the lounge. My husband came home and found me virtually unconscious on the floor and had to call an ambulance. He politely asked that I not do that again.

There are two ways of thinking of life as someone “confined” to a wheelchair. One, there’s the obvious option of someone unable to mobilise and therefore they can’t move one step without it. And then there’s the shadier option two where that tether is invisible. The dependency is not obvious, but it is a dependency nevertheless. I’ll never forget sitting on a cold tiled bathroom floor with a kneecap that just wouldn’t go into place and when I tried to get up and bounce on one leg, the crunch and crack of the other ankle saying nope, not today, hopping is a very bad thing to try. I had made it far enough out of the bathroom that I could see the ‘chair and the inhaler resting on the arm, but I couldn’t get to it.

Seconds ago, I had gotten up without really thinking about it and having had a good day in a good week in a good month, I had decided to stretch my legs and get the kink out of my back and walked. I slipped on a wet spot on the floor, fell and out popped the knee. And I couldn’t get back. I tried, my life literally depended on it, but I couldn’t. What was almost mindlessly effortless was gone in seconds.

Attempting to roll up trousers during a stroll in the woods
Attempting to roll up trousers during a stroll in the woods

This is not an isolated incident. I can remembers dozens and dozens and dozens of floors spanning more than thirty years and yet that sinking realization doesn’t get any less shocking. What I could do two minutes ago is impossible now. It’s a realization I have many times each day. Anyone who has spent much time in my house has found me sitting on floors, waiting. Sometimes I wait for joints to go back so I can move again, other times I wait for help to arrive. We now have an inhaler in each room and I desperately try to remember to carry my phone on me even if I think I am just stretching my legs.

Stuck on the lounge floor unable to reach the shelf and then having a life threatening asthma attack is just as bad as having an inhaler be a hundred miles away. Both are out of reach and that’s the crucial bit. It’s a different type of dependency, but it’s no less real. I adore my wheelchair. It has given me freedom I haven’t had before. It has enabled me to go places and do things I would otherwise have not been able to do. And every day, it keeps me safe and when I’m an idiot and I push too hard and hurt myself, the sound of the beep when Chris turns it on and brings it over is one of the most beautiful sounds in the world.

I’m terrified when I leave the wheelchair in the car and choose to try and walk. You’d think that what terrifies me is the thought of most likely causing myself some serious pain and injury, but that part I’m okay with. Pain I am familiar with. It is the fear of being told that I don’t need my ‘chair. It is being terrified that someone in a position of power over my life decides that I don’t need it and with a single phone call or note, take it away.

It feels like I live in an eternal catch 22. If I don’t use the chair all the time, I might be told that I don’t need it and loose it. If I do use the ‘chair all the time, I’ll loose what little muscle strength I have and end up with joints that are never in place and I won’t be able to walk at all, ever. There is, always, this fear.

I just wish I could tape an explanation to the back of it saying that just because I have to walk and can walk does not mean I need my wheelchair any less.

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4 thoughts on “What’s a full time wheelchair user?

    Mark Van de Beek said:
    Sunday, 21 July 2013 at 19:43

    Hey Lil, I just wanted to drop in and say hi! :)
    I was actually thinking of you yesterday and noticed you picked up your blog again.
    It’s good to see you’re writing again and that you and the little one are doing well.

    Lots of hugs, Mark (Ishana).

    Lily responded:
    Monday, 22 July 2013 at 17:15

    Thank you for dropping in and saying hi, its always great to hear from you. We are doing well indeed and I think you’re doing well too? :) It’d be nice to catch up, hugs right back at you.

    trabasack said:
    Friday, 26 July 2013 at 13:40

    I think it is a common problem. There are lots of people in your situation. It annoys me when ‘the public’ think that a wheelchair users has to be someone who needs it all the time. There are so many people with fluctuating illnesses.

    Enjoying your blog. :-)

    Lily responded:
    Tuesday, 30 July 2013 at 06:54

    We visited a National Trust Property over the weekend and the lady at the counter actually asked exactly what access I needed and pulled out a map to show me which areas had level access, where there were steps and how many and where the alternative accessible access entries and exits were without prompting. It made a huge difference to our day, not only could I plan out a route on the spot, I also felt welcome.

    It was a very positive experience and I hope people’s positive attitudes are contagious so that every day ,the world becomes a bit friendlier and more accessible.

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