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What's it like?

After fighting and wrestling the emotional impact of taking up full-time wheelchair use, I find myself thinking about the day to day battles which may turn the air blue.

Here it is:

Steve

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thanks yet again for another peek at your trials and tribulations.

the annoyance that leapt out for me was not being able to turn your wheelchair without having to reverse out of the room.

i’d burn all the pans!

remain chipper steve!

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I hate having to ask for help getting things off high shelves. My wardrobe is brilliant, it has different height rails, drawers and shelves. But I can’t reach anything above my (seated) head. Drives me mad.

Equally the top shelf of my fridge is too high. I can stand from the wheelchair, but not for long. The door of the fridge is weighted so closes itself, by the time I’ve put the brakes on and got to my feet the door has closed. Or I can wedge the door open, but then the most annoying beep, beep, beep starts before I’ve got to my feet. And then half the time I still can’t reach whatever Mr Sssue has conveniently parked on the top shelf at the back!

I can’t get into any of the shops in my village, they’ve all got steps and all are listed. The pub put in a side door a while back which is kept locked. If a person unable to walk up the steps wants to go in the pub, they have to go in and ask the staff to unlock the side door! Really. The pub has been blackballed by me.

But what really gets my goat is people envying the fact that I’ve just ordered a new car through Motability. Yes, it’s a brilliant charity, yes the down payment is less than the ‘good condition’ refund and yes I’m lucky to have a husband who can drive me about. Honestly though, ‘you’re so lucky!’ Take my MS, you can have my Motability car! Gladly.

Sue

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I would like people who “just dont get it” to have MS just for one day !!!

I’ve seen countless friends and work colleagues go completely blank when I try to explain how this sh*tty illness effects me.

I look at them and think, have it for just 24hrs then you’ll get idea very quickly.

Another excellent piece of writing Steve, I like how you describe very real issues without getting narky.

I would not wish MS on anyone but totally get the notion of wishing that certain “abled” - non MSers could experience some of the symptoms to develop some empathy and support.

Years ago I attended an Autism awareness course in which a number of symptoms were simulated and it was amazing how my tiny understanding of how things might feel for a sufferer has enabled me to be a bit more understanding and a bit less judgemental.

The thing I really dislike when I am being pushed in a wheelchair is that I am never quite where I want to be to be able to see stuff and I feel that I am coming across as the “chippy crip” when I keep on about it!

Mick

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That ‘chippy crip’ thing sums up my attitude to being pushed in my ‘chair. The thing my OH is looking at is never on my eye level, and what I want to look at is usually behind me.

Sue

sounds like Mr Sssue and Mrs Mogace went to the same driving school M

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I don’t believe Mr Sssue passed. He should still be wearing L plates. It might save other people’s feet in lifts and the decor wherever we go outside the house (indoors I accept full responsibility for!).

sadly Mrs Mogace has the lightest grasp of physics, therefore is regularly surprised that increased velocity and force might get Mr Mogace over the raised lip of the garden centre but in doing so he might be violently ejected from he chair. As I am still a puerile schoolboy at heart I never remind her that going in backwards is less funny but more successful.

M

Lovely read Steve, as always. Oh I can identify with pretty much all of what you wrote. Husband insists on trying to “help” my coat on while I’m seated in the wheelchair. If I want to wear a coat I will usually put it on while standing with the walker. If he insists it’s cold/wet/windy, whatever, and tries to manhandle me into the said coat, it quickly becomes apparent that he never dressed/undressed a Barbie doll! My arm is twisted and turned corkscrew like, to get it into the sleeve. The wrist deftly grabbed and forced into the right exit, down the correct sleeve. Grrrr.

It’s was frighteningly obvious in the early days, (before I got the motorised chair,) that Mr Poppy was never in control of a pushchair/buggy. He would firmly take charge of the manual chair and launch me into the road between parked cars sometimes, while he would stand safely on the pavement carefully looking both ways for traffic. He would get annoyed at the shreiks of fear from me, as I would sit with white knuckles watching cars and vans approaching, from eye level sure I was destined to die there and then.

Once we safely got to the opposite side, I would be slammed into the edge of the slightly raised kerb. Grasping the armrests with both hands, tightly, and with a sharp intake of breath, I would try very hard to look dignified and composed. How I never wore a surgical collar for whiplash I don’t know. At least now I’m my own driver.

Dropped kerb one side, not dropped directly opposite, ignorant drivers having parked across the dropped kerb. (No yellow lines there so no probs!) Overgrown hedging atop a garden wall. Dog poo!!! Try as I might to avoid it, invariably I will find some to ride through unnoticed, grinding it thoroughly into the tread. Urgh! People walking blindly, head bent, eyes down fixed on their phones. On a number of occasions I’ve narrowly avoided people landing on my lap, then glaring at me as if I’m the one at fault.

Love your kitchen Steve. Hope you are doing well and kicking cancer good and proper. X

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