Is it time to get a wheelchair?

I have been getting by using a stick for the last few years, but gradually able to do less and less. The number of places I can go is getting narrower and narrower. I've borrowed wheelchairs and mobility scooters a few times and they've allowed me to participate in so many more things that I've missed, but I'm obviously constrained by when I need to give them back.

I would naturally be doing all I could to keep as active as I can to prevent deconditioning. I don't want to use a wheelchair to replace the small amount of walking I can currently do, but to allow me to do the things I'm just not able to do anymore. The choice between getting out in a wheelchair and staying in without feels like a no brainer.

I can't get it out of my mind though that a wheelchair is something that a medical professional tells you you need, not the other way round. I realise I wouldn't get anything on the NHS, and I'd have to buy it, but I still sort of want to run it by the medical professionals I'm seeing. Diagnoses of Hypermobility Spectrum Disorder, CFS, and POTS. I'm 27.

If anyone has any ideas about how I can raise the topic, or any similar experiences I'd love to hear them

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Comments

Linz06

I am now an amblatory wheelchair user. I have hEDS on my tired days I was struggling to be mum and work and everything else. I used a self propelled chair and it knocked my shoulders out. Ive paid now for an electric wheelchair and it's changed my view on life. I actually have one. Yes it can be tricky to navigate I was dubious to use it but some days I walk and others I don't. I explained to the doctor I was struggling with fatigue and the pain was awful ( my hips are a bit problem) and she said do what feels right ( my doctor has hEDS as well) she said if it helps get you through the day it's a winner. Go for it! I love mine now and yes I've jazzed it up ( and want to decorate it with Christmas lights for work, I work with children) I have a supportive work and occupational health got involved to help a smoother transition but I use it at work and I can be mum now and actually play when I get home as I'm not as tired x

SarahT41

https://forum.scope.org.uk/discussion/comment/945090#Comment_945090

Thank you for this. Shoulders are also a big issue for me. Got lots to think about, and it helps to hear from someone who's been through it. Your wheelchair sounds amazing, and the Christmas lights idea is wonderful!

Linz06

My son has struggled with the whole idea of me being in a chair so it was a way to make him see that I can still be me. A lady at work has made me little rectangular patches which I've velcroed to the back to cover the original name ( freedom chair) I have different colours now and and hi Vis one for night. Now when people stare they're admiring my different colour patches lol. I wasn't happy about being in a chair but I'm doing it and rocking the look. Best decision I made and while I am still new to it ( got in in September) Im alot more confident and happy I can personalised it. It's only velcro so won't damage the chair should I upgrade and need to sell it on.

Hope it helps and if you're happier being out and about it's a life saver ( although Im the devil for whizzing round the shop.

IMG-20241123-WA0004.jpg

kitsmum

Like a stick a wheelchair is an aid. I have me/cfs fibro and lots of other chronic illnesses and use a powerchair when I'm out. I use sticks at home and to and from the car and also have a rollator. Without these I can't go out. It doesn't need to be a medical person who tells you though my me/cfs ot suggested it. I bought mine partly due to the fact that the wait on the nhs is currently huge. Do what you need to do to get some quality of life. With me/cfs the reconditioning is not as bad as PEM or the reduction in baseline.

GalDriver

When you struggle with walking it drains your energy and stamina. Using a wheelchair (mine's motorised and whizzy!) is liberating, energy-saving (yours) and handy for carrying things on your lap. Go girl :-)

TomZee

Yes go for it! I still have to get my head around needing one at my age. At the end of the day you know your own mobility. Just mention to the medical people when you next meet/phone. Holidays and mini-breaks had stopped and I ended up ‘parked’ somewhere. Still limitations but wow. I bought a second hand mobility scooter as they are expensive and I wanted to understand my needs. The longer mileage makes a huge difference as uphill or rough surfaces dramatically reduce battery life. I find the arm positions and seating position critical for me so it is worth finding what works for you by trying things. I gather Motobility - if you qualify - lease them but you cannot then get a car.

birdwatcher

Ooh Sarah, I understand exactly what you mean. Go back a few years, I was reluctant just to have a stick. But needed one . My walking deteriorated, the physio gave me a rollator. That made life easier and a lot less painful. My mobility got really bad. My son lives the other end of the country , only visits a handful of times a year. ( he's got his work, kids etc ). I can't get the rollator down the. 2 steps to my front door and can't stand above half a minute anyway. So obviously no good if he was taking me out. I'd hire a wheelchair when I knew he was coming up. But I ended up with a suprise present! He bought me a reconditioned one from the red cross. Think it was about £60. I'm sure if I'd asked the physio she'd have got me one. But there'd be a long wait( there was with my rollator). So that might be worth thinking about. Daft as it may sound,make sure you know what size you need if you do decide to go down that route.

I'll admit I I found it difficult to accept the fact I need to use a wheelchair now if I was going out the house

I used to be very fit and active. Took me a long time to accept the fact I'm disabled now anyway. I'll quite possibly end up having to use it indoors . I'll cross that bridge when I come to it.

But I'd say go for it. You might find its a lot easier and a lot less painful than using a stick. And as you probably know, pride comes before a fall. Literally! And when it's not in use just fold it up and stick it under the stairs or wherever. It's there if you need it. But you might find it's a handy thing to have

. Pick the phone up Sarah, make some enquiries. Good luck and let me know how you get on

wobblyone

Getting an ambulatory wheelchair might be liberating or you could get a mobility scooter if it fits your situation better. I’ve considered getting a wheelchair when things got to difficult but felt unsure I would be able to self propel. A friend of mine suggested a light weight mobility scooter. It’s a three wheeler that I can move with my feet in tight corners. It took a few goes for me to get the right one but it was so liberating getting out and about on it. I’ve also seen electric wheelchairs and I think internalised the stigma. But now I have regained some independence I’d consider an electric wheelchair as useful.

JonnycJonny

Your GP or Adult Social Services can make a referral for you for an OT Wheelchair Assessment - there is no shame in asking for help.

A Personal Wheelchair Budget (offered by the NHS) would give you access to self-propelled, attendant-propelled and powerchair options depending on your needs. Google Personal Wheelchair Budget for more details. Powerchairs must be needed for both indoor & outdoor mobility to be eligible for funding.

If you require a powerchair only for outdoor use you will unfortunately have to consider shop mobility schemes or a private purchase. As you are aware, there are countless makes and models of powerchairs and scooters available - be sure to select one that meets your needs - whether it is just for nipping to the shops, for occasional use on public transport (boarding / alighting from buses is far from easy in a heavy powerchair) or for long outdoor pavement journeys (bear in mind all the different surfaces / cambers / lack of drop down kerbs out in the real world )

Best wishes

allisonanderson46

I bought a second hand power chair to get out and about as I was beginning to be indoors all the time and I had no social interaction to people. It's the best thing I ever did. We know our needs not the health professionals . If you feel it will enhance your life , then go for it. I was a bit worried about what people would think ,now I don't care. I'm out and about and it's brilliant. Just go for it xx

JW77

If your on facebook you might want to check out the group https://www.facebook.com/groups/AwesomeWheeliesUK/
I'd contact the admin as its supposed to be for chair users only but I'm sure they'd be happy to you to ask advice.

Some questions to consider (and this is going from chats with my girl.)
Do you need it off-road,
do you need to lift/fold it into the back of a car? (without having a WAV.
Will it fit on public transport. - not all trains/buses are alike (and we've discovered not all airlines have the same width for hold doors as well!)
What's your budget? Look at funding/grants crowfunding.

We've gone through about 3 electric folders, including the Benoit that's an add on for a Karma type manual chair, another who's name I forget and currently a EezeeGo lightweight folding electric (and it really is lightweight)
plus a Trekenetic off-roader which is awesome, and has been abroad with us. Now that's a chair that gets looks and original designs/inspired from an F1 mechanic.. And will do beaches, gravel, hills etc

When I met her she was walking with 1 stick, then 2 sticks then now the chair (she has MS), and its basically freedom for her as we don't own a car.

I'd also recommend going to something like Naidex in 2025 or The Big Event where you can do some test drives.

https://www.naidex.co.uk

https://motabilitythebigevent.co.uk/birmingham/

Go for it.. Good luck

SarahT41

I am so overwhelmed by everyone's helpful advice! Thank you to everyone who has taken the time to reply to me. There are lots of things to consider still but I feel much more confident in being able to make those decisions about what I need. I hope to update you all as I get closer to getting some freedom. You're all amazing!

lucylucy

listen to your body it will tell you whaat you need

lucylucy

jud1e

I had manual chair and walker for a while. A walker with seat is quite handy as you can sit in it for a rest if need be and it also Carrie’s some shopping.
A few years ago I was given a power chair by my local Wheel chair services and purchased a second hand, light weight powerchair for the back of the car.
I walk around sometimes, in bungalow, others I ride. I also have specific exercises and and exercise bike to keep me as strong as possible.
See what your OT can offer before you invest and good luck. There is rather a long wait in my area but we used the light weight powerchair until the quickie mini arrived.

Littlefatfriend

Hi Sarah

May I suggest you consider it more an opportunity than a defeat?

As others have written above, the range and capacity of wheelchairs now available should hopefully offer you solutions to the issues you're having.

Essentially improve your life and the options you have.

Many companies will be happy to bring 'chairs to you which you may try, I encourage you to contact them and find out what's available.

That's been the experience of some friends and neighbours in similar situations to yours.

Good luck

Luke

theirishlad

I have my boot mobile scooter about 10 years and I called it my enablers. It was the best thing I bought. I got it after I rented one one holiday and discovered how much freedom it give me in a foreign city I did it that way to give me confidence. I give you two stories that happen in the last few months that I call it my enabler. I go to a stretch and flexibility class did not see on my phone the road will be closed for resurface and it about a half mile walk. I didn't see it so I arrived and discovered it was close. I was able to park up and and get the scooter out and attend the class. As the scooter live in the boot. The road maintenance team must have Wonder what was down in that industrial estate as the saw me on a scooter with 4 people in gym gear.

Another story I was out for the day an this particular shopping center I normally walk round it but if I am tight or was somewhere else before hand I get the scooter out. This day I was feeling great and I know I need a bit of exercise. So I set off. After passing the third shop door I felt my better leg tighten. I know if I continue that day would be a right off and possibly the next. So I went back to the car slowly and get the scooter. I then could enjoy the time out as I was not in pain and the rest of the day was not a right off

durhamjaide2001

I would definitely recommend a wheelchair a couple of YouTubers I watch have POTS and have a wheelchair.

I have an electric wheelchair but don't have POTS and I never use it but it's there just in case so they are handy to have.

SarahT41

https://forum.scope.org.uk/discussion/comment/945307#Comment_945307

Thank you that's a lovely way to put it. When I'm using a chair, it feels exactly that, an absolute joy to be enjoying the freedom. Its just in between that I start getting the negative thoughts. I'll keep your kind words in mind

Jimm_Alumni

I've read through this discussion and it's brought some smiles. I did want to add at least one thought of my own though, which has been echoed by others here.

I can't get it out of my mind though that a wheelchair is something that a medical professional tells you you need, not the other way round

I want to say that, as smart as medical professionals are, they are not you. You are the best person to know if you need a wheelchair or not. There is a reason why at a tribunal the tribunal panel consider testimony from the claimant to be just as, if not more (and they usually do), important as evidence from a doctor.

I hope you find something that works for you and helps extend what you can do and experience, while also still allowing you to walk about 😊 Let us know how you get on!

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