I'm a wheelchair user AMA

[Hushabyelullaby]

As the title says, ask away!

@Apple23 no i have a condition that amongst many symptoms causes walking problems. What put me in the chair was breaking my ankle when I was heavily pregnant, due to balance issues and a big bump they wouldn't put me on crutches. Many unrelated health issues to my condition and serious life events over the next 4 months meant that the condition took over whilst I was off my feet in the chair. This was 12 years ago now and I've not walked since I broke my ankle. I had intensive physical rehab but no luck.

@Levatrice i find a lot of people approach it as 'if you'd like a hand with anything just ask', it's an offer of help but done in a non-condescending way

Thanks @RandomUsernameHere, I find the best way to metaphorically stick 2 fingers up to them is to just breeze on by with a smile

My son has started using a chair for days out and as he gets older it's going to be a bigger part of his life. He's ten. What can we do to make it easier? He does wheelchair basketball and loves it.

@Cyclemad222 Yeah I do. I'm heavily involved in the charity of the condition I have. I'm chair of our local group and vice chair nationally, it's this that enables me to have the ability to advertise/promote meetings etc. I also run a group for younger people affected and just found that we had to scope out places local to meet with access and facilities. In reality it's not too difficult. The young people's group meet monthly in a pub, and a general meet is in a large local cafe.

I do tend to go to a lot of places in the car, but I have a scooter too and people parking on pavements, over dropped kerbs, blocking pavements etc, drives me mad. Quite often I'll have to take the scooter on the road because of it, or even because on one side of the pavement there'll be a dropped kerb, but on the other side there may not be one for 50 metres.

Wheelchair envy is a hard one because everyone's chair is individual to them. Mine was designed specifically for me, by the NHS no less!! Looks wise I'll prefer someone else's but I know that in reality it'd be really uncomfortable for me after 5 minutes.

In regards to positive things it's brought, absolutely yes. My life is so much richer, more fulfilled, and better than I could have imagined since being a wheelchair user. I'm giving back and hopefully making a difference to people. When I was ok I used to get up, go to work, come home, have dinner, and go to bed, times that by 5 and at the weekends I'd have a drink. It was a very superficial existence.

I always say, and I mean this from the bottom of my heart, if I could choose to be as I was pre-condition but not have the knowledge and outlook I have now, I really wouldn't do it. I wouldn't change things to go back to that superficial life.

@Ornery I go to an accessible gym once a week where I work out on a hand bike concentrating on my arms. At the moment they are very strong (condition is progressive), I figure that the better condition they're in, the longer it will take for them to deteriorate. I handcycle forwards for 20 minutes at a really high resistance (like going up a steep gradient), and then 20 minutes backwards. I use an assisted bike that works on my legs and helps them get that cycling movement that they can't get on their own. I used to play wheelchair curling until I had to stop because my legs in such close proximity to the ice really started to affect them. I now play Boccia (pronounced Botcha), weekly.

@MrsTerryPratchett different countries and accessibility really depend on whether I can get there in the first place. I can't walk at all and aeroplanes (afaik), don't have disabled toilets. I can't go longer than 3 hours without needing the loo (catheterised so even with that). If I wasn't I could'nt even do half an hour).

Spasms and stiffness mean I couldn't do more than that anyway.

We've recently been to southern Spain and where we were was great. They had boarding on the sand down towards the beach every 100m or so with accessible signs. Many places wouldn't be, a friend's parents live in Turkey and they said that disabled people there live rough on the streets and are treated like animals 😮

Flooring, I would say that the absolute worst flooring is carpet, especially thick pile carpet. It can be impossible to push yourself (or anyone to push you), on. Wood, laminate, vinyl, and tiled floors are all great.

@greenwaterbottle I'd feel the same as you if it was the other way around. If there is somewhere to sit then sit, something to perch yourself on then do it. Maybe say 'do you mind if I crouch down so we're more on the same level', 'let me come down to you so we're at eye level', or even if you know them well 'let me crouch down so you don't have to stare at my crotch whilst we talk'. I'd definitely laugh at the last comment.....I'm sure people think you lose your sense of humour when you lose the ability to walk.

@Knitwit99 no I don't get anxious, most of the time someone is with me, but even when I'm on my own I don't tend to. I don't need to use public transport as I drive, if I did then I reckon I would though.

I don't need a hoist (at the moment at least), as my arms are pretty strong. There should def be more changing places I agree!

@Gingerkittykat yes I do, they seem to think that you're either deaf or stupid.

Some people seem to think that wheelchair users don't have a sense of humour, or can be married, or god forbid have sex!

Did the NHS cover your wheelchair? I've heard stories of them only offering heavy impractical chairs or a voucher towards a suitable one.

Thankyou!!

@Namechangedtoprotect I didn't need a chair until I was 31 so I've no idea how to advise on making things easier for a child I'm sorry

@jackparlabane yes mobility services (NHS dept) funded it

I'm a part time wheelchair user (can walk in the house but need it out and about) and just wanted to say thanks for this. Funnily enough it was a serious ankle fracture that meant I had to start using a chair!

Anything we can do to raise awareness of wheelchair needs is great. I too get the funny looks pulling into a disabled bay until dh starts unloading the chair (I also can't drive as part of my condition).

We have travelled with this though. Last year we went to Andalusia and spent 3 days in Morocco- even in the old city of Tangier people couldn't have been more helpful - but I can take a few steps which helped on the plane.

@weegiemum no problem, I wanted to do this because I'd much rather people ask than stare, it's so important that people who use a wheelchair are seen as people and not for how they get about.

This is so interesting!

Are you able to move your legs at all? Or is it you just can't walk on them? - can you fully still feel everything?

Did you have to change your job because of it?

Thank you for doing this! I hope these are okay questions to ask!

@MeanGirls1 no I can't move them, when I get a spasm they'll jerk, or they get stiff and sometimes don't want to bend. My left is my weaker side, this leg is a couple of inches thinner in circumference than my right due to muscle wastage. I can feel sensation and pressure (not 100% maybe 75), above the knee, below however if I close my eyes and you touch them I can't tell. If I drop something on my foot or knock it on something, I can't feel it immediately, but within 10 seconds my leg will go mad with spasms. I fell asleep a few years ago with my feet on a hot water bottle, it didn't leak and had a cover on, but because I can't turn in my sleep they were on it for 8 hours. I didn't notice anything when I woke up, but my legs were going mad. A few hours later I noticed massive blisters on my heels.

Funny story - my assistant helped me dress and put my ugg type boots on (was winter), when I mentioned a few hours later that my foot on the right seemed weir and was spasming a lot. I got her to look in my boot in case there was a stone in it or something, and she pulled out..........a pair of sunglasses! We couldn't stop giggling

Unfortunately I had to take ill health retirement from work, I'm gutted not to be able to, but even occy health recommended it.

These questions are fine to ask.