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Thread: Disabled and not ready for a wheelchair - advice

  1. #1

    Disabled and not ready for a wheelchair - advice

    hi, I have CMT disease which has been getting progressively worse since I was 15 (diagnosed at 16 but problems since being a toddler). I've used crutches and leg braces for mobility/stability since I was 15 but I'm now 21 and I feel myself getting worse. Even getting around the house is becoming more difficult. I have a wheelchair but have always refused to use it; I'm naturally quite stubborn and I can't seem to come to terms with 'giving in' to the disease. But I'm now at a point where I haven't left the house is 6 months because it's just too much of a struggle. Does anyone know how I can get one this feeling?

    Last week I hit a turning point; I was out with my carer and we had a 'disagreement' (long story but if you aren't disabled don't tell me how easy a task is to do), they decided to broadcast how 'pathetic' I was to the rest of the car park and I wanted nothing more than to go home. Problem was, I couldn't even get back to the car 10ft away without their help. I felt distraught. So I've been looking into getting an 'active wheelchair' so that I'm able to go out alone (I drive an adapted vehicle and just waiting on delivery), I'd be able to pop the wheels off and lift the frame into the passenger seat beside me. I'd finally have some of my independence back but I'm scared that if I start using a chair full time outside of the house I will end up never getting out of it, the same way I've become very dependent on crutches.

    I want my independence more than anything and in my heart I know that I won't get it back until I can accept my situation, but I don't know how to.
    I'm not looking for sympathy in any way, just advice. How did you come to terms with being disabled/in a chair? And how should I approach this with my family? I tend to put a brave face on and not tell them how hard it's getting because i dont want to disappoint them or seem as though I'm now giving in. so yeah, any advice I'd appreciate!

    thanks in advance
    Jay

  2. #2
    Senior Member
    Join Date
    Mar 2014
    Location
    Shropshire
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    1,471
    You have a progressive disease. I too have one, MS and for the first 10 years i was still fairly active. Then walking became harder and harder. distance I could go got less and less. In the last 5 years i went from using 1 stick to 2 and hiring a wheelchair for long days, when i absolutely didn't stand a chance. In 2012, i caved, for a holiday we hired a wheelchair https://www.wheelfreedom.com/
    Made a difference, so I stated to go to Mobility roadshows and research. In 2012 I brought through the voucher system, a manual Karma Ergo. Did my research and realised we needed one with back brakes.
    After a while realised I don't have the upper body strength to self propel so i have an add on power pack Benoit Light Drive. http://www.benoitsolutions.co.uk/
    From 2014 I can now go further and faster than I have in TEN YEARS!!! I travel on trains and buses with it. It has a range of 8 miles.
    I can tell you from the MS forums that I'm on, plenty of ppl your age, feel the same way you do. But your family and carers SEE you are struggling. Not pathetic! Its okay to be disabled and you eventually say "No I can't DO that anymore" (whatever THAT is, for me its gardening for one!) We wish it was other, its incredibly frustrating, but my advice/
    Get a referral to wheelchair services. Do your research. Go to a mobility roadshow. Theres one this year and its FREE. Also Naidex at the NEC in April.
    Ask some basic questions. Have you got upper body strength? If so, look at self propelling. If not, your looking at being pushed by carers or going for an electric.
    Use you local Shopmobility - get an idea what is out there. It sure beats staying in. Some of the other chair users on here will no doubt say similar

  3. #3
    Quote Originally Posted by reddivine View Post
    You have a progressive disease. I too have one, MS and for the first 10 years i was still fairly active. Then walking became harder and harder. distance I could go got less and less. In the last 5 years i went from using 1 stick to 2 and hiring a wheelchair for long days, when i absolutely didn't stand a chance. In 2012, i caved, for a holiday we hired a wheelchair https://www.wheelfreedom.com/
    Made a difference, so I stated to go to Mobility roadshows and research. In 2012 I brought through the voucher system, a manual Karma Ergo. Did my research and realised we needed one with back brakes.
    After a while realised I don't have the upper body strength to self propel so i have an add on power pack Benoit Light Drive. http://www.benoitsolutions.co.uk/
    From 2014 I can now go further and faster than I have in TEN YEARS!!! I travel on trains and buses with it. It has a range of 8 miles.
    I can tell you from the MS forums that I'm on, plenty of ppl your age, feel the same way you do. But your family and carers SEE you are struggling. Not pathetic! Its okay to be disabled and you eventually say "No I can't DO that anymore" (whatever THAT is, for me its gardening for one!) We wish it was other, its incredibly frustrating, but my advice/
    Get a referral to wheelchair services. Do your research. Go to a mobility roadshow. Theres one this year and its FREE. Also Naidex at the NEC in April.
    Ask some basic questions. Have you got upper body strength? If so, look at self propelling. If not, your looking at being pushed by carers or going for an electric.
    Use you local Shopmobility - get an idea what is out there. It sure beats staying in. Some of the other chair users on here will no doubt say similar
    Thank you for your response.
    I have upper body strength just not so good with fiddly things such as picking coins off the floor, but I think all the years of my arms taking my body weight has helped keep them strong.

    I will definitely take your advice and look into the mobility road shows - I didn't know they existed.
    I have an appointment on the 13th to get some new AFO's but in all honesty I'm not sure whether they will change my walking ability that much as I use them now and still don't have full independence. So I will look also look into getting a referral to wheelchair services.

    It's refreshing to hear how much your chair has given you in terms of getting out and about. would you say there have been any downsides to using your chair? I'm worried I will deteriorate faster.

    Thanks again
    Jay

  4. #4
    Senior Member
    Join Date
    Mar 2014
    Location
    Shropshire
    Posts
    1,471
    http://www.mobilityroadshow.co.uk/
    http://www.naidex.co.uk/

    As Rasy says, talk to lots of people, professionals etc, get advice. It might be to start with you use Shopmobility and/or hire one just for days out when walking far is a strain. Thats exactly how it started with me.
    going to MS Life in 2012 and 2014 was a real eye opener for me. I'd not been mingling with other MS-ers before and all of a sudden there were 1,000's of ppl - using wheelchairs, rollators, crutches.....you didn't feel "odd"! And a chance to see what exactly there was on offer. Which is a helluva lot, believe me. It came at a time when I was starting to struggle and thinking, okay, maybe I cannot do that reliably on my own anymore. I'm lucky - a bit like you - don't need it 24/7 - just if i have to walk far. and far becomes a relative distance! So I can, if needed say, leave it outside a cafe and walk in. I walk around my house and indoors places that i know well.
    i go swimming (very good for the legs).
    Downsides? well when shopping, i can only carry what will fit on the back. (Mebbe thats a girl thing!)
    Cleaning it. Don't get me started on dog poo, glass, ppl who park on dropped kerbs....
    Upsides? My knees ache far less because the weight is off them. My ankle don't swell cuz of same.
    My son actually said to me last year "mom slow down!" I had to stop and laff my head off. He's not said that to me in EVER!!
    My boyfriend, who has health issues himself, does not have to struggle to push me.
    so yeah, talk to lots of people and get advice and research!!

  5. #5
    To me "giving in" is allowing disability to prevent you from living life to the full by refusing to use something that could offer freedom and independence. While I agree with walking as much as possible for as long as possible, don't let the inability to walk stop you from getting out and about. I used a manual wheelchair for years but then managed to get around using crutches thanks to Physio and pain meds but it was never going to be forever and my mobility has got a lot worse over the past few years. Just over a year ago I reached the point where I could go to work, the supermarket (using their scooter trolley) and that was about it. Even that was very difficult and I could only manage most places if I could park in the bay nearest the entrance. It got to the point where even very short distances took a ridiculous amount of time to walk, I was in agony and literally dragging my feet along the ground with muscles in my back and side going into spasm. Walking less than 50 metres would reduce me to tears and take at least 15 minutes. I could barely get halfway across a road before the green man changed to red which was pretty scary at times since not everyone would wait until I'd finished crossing (not to mention embarrassing with everyone looking). With my walking ability continuing to deteriorate, I realised I'd become virtually housebound so bought a small scooter. I have neck and shoulder problems so can't self propel. Its transformed my life and given me the freedom to go wherever I want. Plus when I enter a car park I don't get that knot in my stomach because I know that as long as I have space to get the scooter out I'm ok. Before I would go to places ridiculously early or when not busy because I just couldn't manage unless I was right by the entrance and if my desired parking bay was taken I would have to wait or go home. Life was harder than it needed to be.

    A wheelchair is a mobility aid and can enable you to participate in life so try to see it as a positive. Yes it's good to keep walking (and getting a wheelchair doesn't mean you have to use it all the time). Most people are like you - they see it as confirmation that things are getting worse and sometimes to be avoided but if you need it you need it.

  6. #6
    @raspberry I'm sorry to hear you had to go through all of that abuse, and I'm glad your situation has changed now you're away from that estate.
    I get what you're saying as far as remaining active as long as possible, I think by using a wheelchair to get into places such as swim centres id be able to do more than I do now.

    @reddevine
    the shopping could well be a girl thing ha. It must also feel great to be speeding ahead, I don't think I've ever had to slow down for anyone lol.
    I've heard some horrendous stories about rolling through dog poo so you're definitely not the only one!
    I've taken your advice and started doing some more research; I've also found a local wheelchair sports club which would keep me active and socialising with others who face similar difficulties which would be a first for me. Thank you for taking the time out to respond, you've both been very helpful and given me things to consider.

  7. #7
    Hi Jay, the hardest bit in all of this is where you are now. It's hard to know where to start, and hard to imagine how using a wheelchair would be. Many of us have felt like this, and not known anyone else in the same situation. You've been given some good advice above, and I'd agree with it. If there is a shopping centre near you with Shopmobility then I'd recommend booking the smallest scooter they have, going at a quiet time, and just have a go. Or even borrow a supermarket one. I suspect you'll quickly find it such a relief to be able to potter along that this will help to work out how you feel about it. I had a quiet cry the first time I did this, it was such a relief and so exciting!

    Get your lippy on, and get out there! Summers coming

  8. #8
    @catlover - a lot of what you've said resignates with me a lot; I might be able to stand but I don't have independence in any way which is what I've been slowly coming to terms with now I'm a bit older. There are so many things that I want to do but because of my own stubbornness to 'not give in' but in the end, I'm the only one losing out on experiences/life.
    I've been in the same situation of turning up places 2 hours early just to make sure I can get a good parking space!

    It's reassuring to hear how much your chairs/scooters have positively impacted on your lives.

    @Rasy - thank you for your kind and supportive words. And I couldn't agree with you more, being able to laugh can heal so much.

    All the best Rasy!

  9. #9
    Quote Originally Posted by Fliss View Post
    Hi Jay, the hardest bit in all of this is where you are now. It's hard to know where to start, and hard to imagine how using a wheelchair would be. Many of us have felt like this, and not known anyone else in the same situation. You've been given some good advice above, and I'd agree with it. If there is a shopping centre near you with Shopmobility then I'd recommend booking the smallest scooter they have, going at a quiet time, and just have a go. Or even borrow a supermarket one. I suspect you'll quickly find it such a relief to be able to potter along that this will help to work out how you feel about it. I had a quiet cry the first time I did this, it was such a relief and so exciting!

    Get your lippy on, and get out there! Summers coming
    Haha I might get a few weird looks stepping out in lipstick with a beard! Maybe it's a good way of distracting them from looking at the chair lol.

    I used a wheelchair for the first time a couple of days ago and I didn't feel as self conscious as I thought I would, in fact I felt less self conscious than I normally do. And the journey took a quarter of the time - it was great aside from a few oldies staring!

    I'm looking at purchasing an active wheelchair so I could manage with it myself and actually enjoy this summer rather than stay home, even if I do leave the Lippy at home! Ha.

  10. #10
    Oh that's funny, I'm so sorry. Especially when there's a fairly obvious clue in your username.

    I'm glad you caught the spirit of what I mean by getting out there. People have very different experiences, I'm sure for lots of reasons as Rasy says, but I honestly find people are very positive, and i feel less self conscious than I did walking badly. I think people look because we look different, but I don't think that necessarily means there's anything more than curiousity behind the looking.

    Will let you off the lippy, go get your haircut instead!

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