Disability aids, equipment and technology
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Need advice from ambulant wheelchair user

Hi

I am looking for advice.  I currently use a luggie folding scooter if I need to walk any distance.  I use a crutch to get about my flat and Walking very short distance Depending on my mobility which changes each day.

l want to know the benefits of using a wheelchair to someone that can walk a little.  I personally feel I am not living and I am just existing.  I avoid doing a lot of things due to not being unable to walk far and the pain I am in walking  I put things off as I also feel getting my scooter in and out a car is sometimes really tiring for me and I feel too sore.

I am also ashamed to say I have put off getting a wheelchair as I have been too self conscious.  I am annoyed at myself for this!

I have spent the past week looking at manual folding wheelchairs.  I am thinking along the line of a Quickie lightweight chair.  My upper body is fairly strong.  My disability affects my lower body.

I would really appreciate any advice as I don’t have anyone else that I can discuss this with.

thank you

Linsey

Replies

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi there and welcome 

    I am a wheelchair user a manual one is OK for round the house and round shops and restaurants 

    As soon as you get outside the problems start of you are self propelling, uneven surfaces,  hills up or down,  steps , kerbs are all a challenge and require great upper strength 

    Not all impossible but is for me 

    Also the height brings challenges but if you can stand you can still reach shelves and stuff 

    I have a folding electric chair which I use outside it is quite heavy but my 14 year old can get it in the car . It's easy to fold up and down

    I suggest you try before you buy and go ti a mobility store 

    Or see if your gp will refer you to wheelchair services who will assess you and provide suitable chair funded by NHS 

    Hope this helps
  • chiariedschiarieds Community Co-Production Group Posts: 9,198 Disability Gamechanger
    edited June 12
    Hi @weeyin - we haven't chatted before, & I might not be too much help to you. I just wanted to say I wish I could use a wheelchair outside at times, as, in theory it would help so much, & give me more independence. Unfortunately the chronic pain I have is just in that area of your anatomy on which you sit, so sitting therefore worsens my pain.
    If you have strength in your upper body, then trying a wheelchair seems, at least to me, like a great option. Think of it as an aid that has so much potential to help. Don't beat yourself up, adjusting to what might help you I'm sure isn't easy. I use two crutches when going anywhere outside, but, having problems with my right arm & wrist makes this difficult, somewhat painful & tiring. I wish I could use a wheelchair, so just speaking from personal experience, & I hope you make the choice that's right for you.  :)
  • weeyinweeyin Member Posts: 26 Connected
    I really appreciate the reply’s from both janer1967 and chiarieds.  Both helpful in different ways.  My condition affects my bum area as well as legs so I can be sore if I sit for a long period.

    I am thinking Janer1967 that the wheelchair will be better for eating in cafes or restaurants and indoor shopping centres.  I think I would feel safer in my scooter Outside due to uneven surfaces etc.

    I really appreciate you taking the time to reply.  Thank you
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    If that's what you want it for then yes it would be a good solution 

    I have scooter too but they limit your access in smaller places 

    But my power chair is same size as manual  wheelchair so ideal for getting about in and out 
  • chiariedschiarieds Community Co-Production Group Posts: 9,198 Disability Gamechanger
    You're most welcome. I'm somewhat similar, as my pain includes mainly the underneath of the tops of my legs, one side being worse than the other. It's just finding what works for you; a bit of trial & error.
    As far as your pain goes, do you get much help with that? Many members have found the benefit of being referred by their GP to a pain clinic, tho I admit I have no personal experience of these. I do appreciate the benefits of exercise (limited tho your mobility may be, yet speaking as a physio, know it helps....I now do the exercises I used to teach!). So wondering if a physio referral may also be helpful.
  • weeyinweeyin Member Posts: 26 Connected
    I’m sorry to hear you are in pain.  It must be frustrating when you were a physio yourself.  
    My care from the NHS is practically non existent now.  I appreciate they are over run and underfunded.  I’m not bad mouthing them and I appreciate the help I have received.  
    I have a condition called Klippel Trenaunay Syndrome.  It affects right leg, foot and private area.  Also Spina Bifida Occulta.  No Consultants in Scotland really have any knowledge of my condition as it is rare.

    I was told at 14 I had degeneration in my right hip, knee & femur.  I had hip replaced at 26 and knee replaced at 27.

    I am going to be 41 this August.  I feel more pain in the femur thigh area.  I think this is due to my hip or knee replacement getting old!

    I don’t want to put myself through further replacements as I required 12 blood transfusions over the hip & knee op.

    Think I really just need to start using more mobility aids such as a wheelchair.

    I generally fall asleep about 9 due to medication.  If you reply tonight I will message tomorrow 😊
  • littleacornlittleacorn Member Posts: 198 Pioneering
    About 20 years ago I was in the same position as you. I began by using a manual chair outside for longer trips as I was so worried everytime I went out as to how I was going to make it the end of the street, then onto the park round the corner etc until I glt back home. It spoiled my life as I never enjoed going out. I used a quickie which folded into my car boot. Over time my shoulders and neck pain began to increase as I used it more and more. Eventually I needed a powerchair which I still use daily. Using the manual chair gave me freedom but the powerchair makes me independant. Like you I didnt want to use a chair as I felt I was giving in! At least now I have alife which I enjoy now.
  • weeyinweeyin Member Posts: 26 Connected
    Thank you for taking the time to reply 🙂
    I am thinking a quickie will be what I go with initially.  I appreciate your feedback.
    Im glad to hear you have a life you enjoy.
    I think I will feel the same when I get 1.
    I really enjoy my days out on the scooter and I am upset with myself that I missed out on so much.  I avoided a lot as I new I wouldn’t manage to to do certain things using my crutch. I get fatigued and sore far more frequently.
    Thanks again
  • littleacornlittleacorn Member Posts: 198 Pioneering
    Will you be transporting it in a car?
  • weeyinweeyin Member Posts: 26 Connected
    I have a hoist in my car boot.  I use it for my scooter.

    This is all dependant on how I’m feeling and if my partner is with me to drive.

    We don’t live together.  I can drive but have been relying more on him.

    i haven’t driven later in the day for years.
  • littleacornlittleacorn Member Posts: 198 Pioneering
    Good to hear you have a hoist so no extra stress on you shoulders and neck like I had when I used to lift my manual chair in and out of the car. Is driving something that you would concider doing again to help you be more independent or is that now in the past?
  • weeyinweeyin Member Posts: 26 Connected
    I’m actually at my best in the morning on my good days.  Which I hear is the complete opposite for most others with chronic pain!

    I am best to get out in my car between 8am -10am if I need anything or have appointments.  Generally by lunchtime I need to take painkillers and become really fatigued.  I won’t drive after taking any meds.

    I have had a licence for over 20 years.  I can see myself giving up driving altogether in the next 2 years.  It will probably be easier when I use a wheelchair more as I can take it in and out taxi’s or hope that my partner will drive me more or perhaps family.

    I just renewed my train pass.  I will need to start using trains.

    I haven’t felt safe using a bus for about 15 years.  I have been to unsteady on my feet.  The bus drivers in my area have no idea that there are people out there with mobility issues or are frail.  You take your life in your hands getting on a bus here 🙈🥴
  • littleacornlittleacorn Member Posts: 198 Pioneering
    Yes I am worse in a morning but then I take my meds and off I go. I do get tired late afternoon and slow down. I have been driving for about 35 years but now drive an automatic which helps as my left leg  is worse than my right. I am just able to manage to get the chair out the boot myself but am finding it increasingly difficult. This is probably going to be my last motability car but I have only had it 3 months. 

    I know alot of people use taxis but I find there are times I want to explore new areas and that would be expensive in a taxi and sometimes public transport does not go where i want or would take hours to get there! I seem to only use public transport when I go out for a drink!
  • weeyinweeyin Member Posts: 26 Connected
    Yeah passing my test at 19 Definitely made my life easier.

    I try not to think too far ahead.  I know not being able to drive will be a great loss but hopefully I will adapt.

    I wasn’t brought up to use taxi’s.  My mum & dad would never of dreamed of getting a taxi.  My dad lost his licence about 4 years ago as he has Alzheimer’s.  I have encouraged both my M&D on occasion to get taxi’s.  I tell them they are keeping people in jobs.

    Think when the time comes I will just have to suck it up!  Listen to my own advice and think I’m keeping drivers in jobs 🙃
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