Any Perambulatory Wheelchair users around?

[ArcticOwl]

Can i bother you to answer some questions?

I'm mobility disabled, my ability to get around has bombed the last year, im using a cane full time and finding doing more than pottering around Tesco a real challenge, and if i do that, i'm buggered for the next few days.

I've been considering a wheelchair... but i'm fighting real imposter syndrome.. i did when i started using the cane part time too, but got past that, but a wheelchair seems like a massive step, and there is all the stuff around family thinking i'm milking it because 'it's not that bad' (they haven't said this, but my brain knows they will) and i have concerns over being judged in general as i'm young and overweight (not why i'm disabled, i have arthritis, degen disk disease and hypermobility)

At what point did you realise a wheelchair was going to be necessary on occasion to make life outside more accessible, and how did you come to terms with it and approach its use with family?

I had imposter syndrome about using a wheelchair and felt terribly self conscious about trying one. It’s hard I think, when you can walk but are limited. If you simply cannot walk, the decision is made for you.

In the end my partner persuaded me to borrow a wheelchair from a garden place that I liked to visit. It took about 2 minutes in the chair to realise that I had a choice : I could struggle round on my legs for about 10 minutes, feeling terrible, and then have to go and sit in the car; and be wiped with pain and fatigue for the next 3 days. Or I could sit in a wheelchair, have a lovely time, and see everything I wanted to.

Guess which choice I made?!

In truth, many wheelchair users encounter ‘attitudes’ but they are just that, attitudes. They’re based on people’s stuff about illness, and need not be your concern.

I don’t remember my family making much of a fuss about the wheelchair tbh, but the onset of my illness was sudden and quite dramatic, which may have helped. I think conditions that get worse gradually are harder in that respect. If your family members really give you grief, ask them which is better, not using a wheelchair and being very limited in what you can do, or using a wheelchair and being able to do more?

I would go somewhere you won’t be likely to bump into anyone you know, that lends out wheelchairs and scooters, and try one out.

thank you for your post, i've been mulling it over and took the plunge to get one,, still have a LOT of feelings about it though :/

The way I look at it, the wheelchair is an aid to having a more accessible life. At least you have the option of not being confined to a wheelchair, obviously some people do not have that choice. It therefore should be seen as something to enhance your life, allowing you to go further, and do more, without being wiped out for hours, or days later, due to pushing yourself too hard. Life is for living, and enjoying. A wheelchair can help you do that. My Mil really resisted using a wheelchair, citing that once she got in one, she would not be able to get out of it. Words to that effect. In reality, her refusal to use one resulted in limitations in her life, and going anywhere, being a long day, filled with her having to stop constantly, to sit, and rest. She did herself no favours.

My dad fought having a scooter for years (severe arthritis, neuropathy, impaired blood flow, heart failure..) until he couldn't fight anymore. And then he said that he could have kicked himself as it opened up the world for him again, and he said that he had thought that having one made him disabled - but that not having one was what disabled him. Rosie Jones did a great talk on when she started using a scooter and the internal ableism she had over it.
So get what you need to help you when you need it, and anyone who isn't 100% supportive is a dick

Yep, been there, done that.

Like @Keepingongoing I started by renting scooters and then powerchairs (in my case from Shopmobility), and they made such a difference to my life I very quickly came to terms with them.

The attitude of the Shopmobility volunteers really helped. They clearly didn't see me as an imposter! And they did see all their different manual chairs, powerchairs and scooters as equal available to me, and we would discuss on each visit which chariot would best suit my needs for that day's chores.

When it dawned on my that fit, healthy folk cheerfully strap 4 wheels, a petrol engine and a quarter of a ton of engineering to their backsides to drive 200m to the shop, I stopped feeling guilty about using a tiny, electric vehicle to get me about.

he said that he had thought that having one made him disabled - but that not having one was what disabled him.

This.

Are you a nice person op? Can you promise to stay one from a wheelchair? My cantankerous relative turned into a she - devil once she needed one. What a awful woman she became... She blamed the world for her needing one.

WTF?

Yes, it's definitely the moment a wheelchair is delivered through the door that turns perfectly happy people into devils.

In the same way that logging into their MN account is what makes people uncommonly dim...

I really feel you here op. I use a cane on bad days which are all too frequent, and a walker occasionally. I have really struggled with imposter syndrome during my decline, especially as my condition flares and then calms again. Some days I can walk the kids 500m to school, other days I can't walk around the house.
I was given a manual wheelchair to try by the wheelchair service. It was fantastic but I can't self propel because of my disability and I didn't meet the criteria for a power chair. The wheelchair service washed their hands if my once they had provided me with something, despite that option being inaccessible to me.
I know the power chair would help but I'm concerned about spending hundreds of pounds if imposter syndrome remains present

I moved to aa mobility scooter, and agree, it opened up so much I hadnt been to and seen. I even use it for hospital appointments which have become so much easier to face, particularly when the disabled parking spaces are always full and I had to park further away. At least I didnt have to worry about unable to get places.

It would be such a shame if imposter syndrome stopped you using a powerchair, if you'd find a use for one.

Mine has changed my life. My self-propel did too, but this is a whole new level.

And for what it's worth, I've found people to be very accepting of the fact I'm ambulant. I have a few pet phrases that seem to smooth the way, eg:

"I can do indoor distances, it's just longer ones which are a problem."

"Stairs aren't my favourite thing, but I'll manage a short flight as long as I can sit down at the top."

"I can get up and walk a couple of steps, if someone can mind/fold/lift the wheelchair onto the train for me."

And so on. People just seem to take it at face value (and relief, when they realise the lack of a ramp isn't going to be the showstopper they feared). Honestly I think in over a decade I've only ever had one smartarse comment, and that was from a bloke at the bar in a pub, so par for the course...

I tried hiring one from shop mobility to see if I made the move to a power chair. My husband said I was much nicer to be around as i was less grumpy (in pain) when in the wheelchair. I now use one regularly and it means I can save my energy for other things.

Try it and see. I know what you mean about imposter syndrome. The husband helped by yelling 'its a miracle' whenever i got up out of the chair. You might have guessed laughter is part of what keeps us going.

This is Rosie Jones on overcoming the 'I can walk so should' thing

I had a psychotherapist who suggested that rather than spend my energy on getting somewhere, I could save that energy by going on a mobility scooter and use the energy having a nice time whenI got there. Very sensible.

I hired scooters and power chairs from ShopMobility at first, until I was sure that I wanted a scooter rather than a chair. Then I got one. Never looked back.

Now I'm also sizing up power chairs as even my little scooter is heavy and cumbersome to put in the car, so a lighter, smaller chair would be better for visits to, say, the Eden Project.

Go for it! Good luck xxx

British Red Cross hire out wheelchairs, in case I missed it being mentioned here. It was easy to order, and inexpensive.

I think it's okay to have a LOT of feelings about it OP, and pretty normal.
I've been an ambulatory powered wheelchair user for a few years now, and I still struggle with knowing when to use it and when not to, and will probably always get people expressing surprise, more or less politely as the case may be, when I stand up.
A couple of points for a new wheelchair user which might be useful:

• invest in a good cushion. If the standard cushion with the wheelchair is just a flat block of foam, get one that's more supportive.
• Similarly, check your lumbar support and don't be afraid to adjust. I use a lumbar cushion sold for office chairs, which has almost eliminated my back pain when using my chair.
• Think of a few stock responses for when people ask why you use a chair when you "can walk" - "I don't share my private medical information with strangers" is more than adequate, but you may prefer others. I've sometimes used the cards from this website https://whathappenedtoyou.co.uk/
• If you struggle with pincer grip or it causes pain to grip the joystick, get a ball shaped joystick topper, that way you can steer with your palm.
• Assuming powerchair, get a waterproof joystick cover for when it rains.
• Bum length coats are uncomfortable to sit on. You want either cropped or knee-length.

@ArcticOwl congratulations, I hope you’ll enjoy what you’re able to do in your wheelchair. I think it’s very natural to feel complicated stuff about it but this may well change.

@PerkingFaintly I love your point about healthy people DRIVING 200m to the shops strapped to 4 wheels and half a ton of engineering!

I really wish I had "given in" to the wheelchair long before I did.

It has liberated us in that we can now go anywhere (more or less) without worrying about my mobility holding us back.

I'd begun to avoid trips out.

Thank you for this thread. I'm in the middle of the internal debate over getting a scooter / chair.

We began hiring a chair for holidays in case my knee went out. It began to make more sense to buy one as I beginning to avoid trips out

Yes, I am an ambulatory powerchair user. I have absolutely zero regrets whatsoever, and with the benefit of hindsight I should have got her (my chair is a she!) about 6 months before I did. I have CFS/ME

Far from being restrictive, having her is the very best thing I have ever done. No more blisters from crutches, no more needing a nap after nipping to the post office and having her has enabled me to become a parent to my children again. My husband has said that I am not exhausted all the time and ai'm not in a permanently foul mood because of the exhaustion/pain anymore.

My advice would be to contact an independent mobility dealer, explain what you want and then go from there. The chair I thought I needed would have been actively damaging to my health. Instead I have the seat unit of one chair mounted on thr base of another.

The NHS refused to help me because I can technically walk indoors.

I'm at this stage as days out are just getting too hard. I feel like I'm staying at home and missing out on my family life.

it's a self propelled one i have, i'm still quite physically strong, so no issues lifting it in/out of the car or pushing myself along, its purely the distance of walking i'm struggling with, did tesco with my stick again today to get a prescription and had to keep stopping, was leaning on the till to get some relief from the crushing pain in my back/hips.

I think my plan is to see how it goes with this one, and go from there.

Thank you all for your responses, my friends keep telling me its the right choice if its going to help me enjoy going places, rather than being reluctant to go because i know walking any kind of distance is going to hurt.

Internalised ablism is an ass, i can't get my head around being the 'able' one in the family who is so capable around the house when i know i can sit and rest immediately after doing anything physical, yet feeling so disabled/a burden/inconvenience when out doing anything in the wide world because my pain limits me.