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Wheelchair users who can walk

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Messages: 1 - 20 of 55
  • Message 1. 

    Posted by JulieComfort (U12711446) on Wednesday, 24th September 2008

    Hi

    I have ME, and like many illness' there are many different 'grades' to an illness from mild to severe. I class myself as moderate.

    I can walk, and walk fairly normal, but after 5 or 10 minutes I begin to feel extremely ill, weak, have severe pain in my muscles and joints and then I get even worse repercussions which will render me to bed for sometimes days (weeks... however long!) This also includes just standing. I can't stand in a queue for more than 5 minutes!

    It got to the stage I just couldn't go out. I can no longer walk around our local supermarket to do the shopping. I do still pop in sometimes for a couple of things when I am feeling ok, but I soon regret it and begin to get ill again and then I'm back in bed for days!! It's just not worth it!

    One of the reasons that made me get mobility aides was my family. It was unfair to them. If I couldn't walk somewhere, then we all wouldn't go!

    I first bought a small mobility scooter and I now have a wheelchair. They have changed my life as I can now go out and do things and not have the nasty repercussions I would normally have if I would of walked.

    They have given me back a little bit of my old life!

    I have created a group on facebook about this although I don't think I can link it here. But I do think it is important to make other people see you don't have had to have lost the use of your legs to use a wheelchair!

    I would be really interested to know how many of you use a wheelchair part time and for what reasons.

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  • Message 2

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    Posted by gemh83 (U12551566) on Wednesday, 24th September 2008

    Hi Julie, good for you!!! smiley - smiley

    Sounds similar to me in a way? I have the ability most of the time to move my bad leg how i want to but when i do i get pain that just gets worse and worse from there on. When i am in a lot of pain then my movement is affected. I can't make movements some movements then and my leg will twitch. It's like my brain is saying move and my leg is saying i don't want to.

    Although doing ok most of the time of the time due to actually finding some drugs that work for i have to be very careful about what i do! If i walk to much my leg will let me know about it and i might not be able to get home without calling for a taxi. If this happens i will be in so much pain afterwards and this can last from anything from a day or two to weeks or months on end!

    I have thought about using a wheelchair part time. I don't know if i will ever need to do this? Part of me doesn't want to use a wheelchair and i do enjoy walking when i can and i'm scared that if i became a little more dependant on a wheelchair that my condition might actually get worse and i will be able to do a lot less of everything. With CRPS/RSD no matter how painful you have to keep doing as much exercise as you can do while you can still do it.

    I've had a lot of trouble with jobs though and this is because my jobs to date have been considered an ok job for a disabled person to do such as office work or part time work but they haven't been ok for me! This is quite upsetting and for me not that long ago i graduated and thought the world was my oyster only to start to suffer with my health soon after and find that i can't really do very much at all. Now i have this debt looming over me that i don't know if i'm ever going to pay it off cause i can't hold down a job for long enough?

    I've thought for this reason about using a chair and i think i may well need to in the future? I went back to university to specialise in a field of work (children's book illustration) and this should hopefully be an ok thing for me to do. If i can break into the field i'll be working from home doing commissions or i'll be working in a studio where i'll spend a lot of time sat down instead of being in an office where i'm up and down like a yoyo which was more painful for me than i can describe and left me unable to move or do anything! The downside is though (and there always has to be one doesn't there) that i'll have to travel a lot with my portfolio. I'll have to try to get an agent to sign me up and when if i eventually get taken on to do a children's book for publication then i'll have to travel to the publishers head quaters for meetings with the editor to see me work in progress and this will require me to up sticks fairly often and commune to wherever in the country. Now the first time i came to london with my portfolio thinking that i could just manage some how to get around was interesting! I left me in agony for 6 months and housebound. The second time however i came to go to an illustration conference i used my head and taxied it everywhere but it was expensive. So i'm thinking if i purchase a chair one day i'll be able to do these things more easily?

    It would make me more mobile and i thrive on getting out and about and it would actually help my confidence to find that i can do nearly everything i want to do again. So possibly one day i will become a part time chair user but i know that my family are not happy about my idea on this and actually perceive me wanting to use a wheelchair to help me with work and help me travel as a sign that i'm giving up rather than a way of helping me to lead as normal and active life as i can?

    People have uncomfortable ideas but i've always said that what upsets me is not being able to do my thing and i don't care what i need to use to be able to do it! So long as i can do things to the best of my ability then i'm a happy bunny! smiley - smiley

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  • Message 3

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    Posted by elka3131 (U13255322) on Wednesday, 24th September 2008

    Well, 2 yearsc ago an autoimmune disease left me with right sided hemiplegia (well I was paralyzed in one leg smiley - erm). Ok well understanably when I could not move it at all I used a wheel chair full-time.

    I had physio evryday for 7 weeks (while an inpatient) and then twice a weeks after that. When I was discharged I used a zimmer frame but could only manage about 2 metres. Arounf the house I would shuffle on my bum but out and about I would use the chair. Gradually, I got better with the zimmer frame and with the use of a leg support (to hold it straight) I could walk abit further.

    As a 16 year old using a zimmer frame and struggling I have to be honest I did use a wheelchair at school/college because I could not walk all day and I got some stupid comments from people about the frame. I would drag my leg behind me. Around tescos people I did not know would stare and sometimes laugh.

    After quite a while I upgraded to crutches. I could not walk long distances and really had to cincentrate on making my leg move. My leg would still drag behind me and I could hardly put weight on it so steps were impossible. Somedays I would use a wheelchair and others I would struggle on the ctrutches. Depending on the circumstances and where I was going.

    When i eventually was able to walk abit with one crutch and the leg splint, I would somedays use 1 crutch, somedays 2, sometimes a wheel chair and other the zimmer frame. It depended on how well I could move that particular day. College had wheelchairs there so I would arive on the crutches (or frame) see see how I went and use different things throughout the day depending on how well I was coping. I had about 6 pieces of equipment in reception and someimtes I would leave the frame with a particular teacher, use the chair and get it the next day.

    People have 'bad days' and 'good days'. I know I certainly do. I hear alot of people say 'oh they don't really need a wheel chair' (especially if someone gets out of a chair and walks a few stepds to the car). People don't always know what the reason is why they are using chairs and if they need it.

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  • Message 4

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    Posted by dis1dat1 (U12738316) on Wednesday, 24th September 2008

    I am jelouse because I cant walk at all unaided. I know when I refused to use my chair trying to manage on crutches impacted on my son so know I use it but I dont like it.
    Ambulant disabled people are often seen as fripples ( I learnt that expresion today here) especially if your young but it your life and if a chair is better for you great!

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  • Message 5

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    Posted by gemh83 (U12551566) on Wednesday, 24th September 2008

    It doesn't matter chucks how you get about it's the quality of how you get about that matters!

    It's better to enjoy getting around than to not be able to get around at all and if you need to use a chair to do it it doesn't matter! YOu do everything you can as best you can and enjoy being as active as possible with your family! smiley - hug

    On many occassions i'd love to throw my crutches away and sit in a chair. I'd always get a seat that way on public transport too <smiley?

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  • Message 6

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    Posted by Lisy (U1824334) on Wednesday, 24th September 2008

    I would be really interested to know how many of you use a wheelchair part time  

    *raises hand*

    and for what reasons. 

    Because walking hurts and I can only walk really slowly.

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  • Message 7

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    Posted by deadfromtheneckup (U8800498) on Wednesday, 24th September 2008

    I have a mental health disability which at times leaves me so exhausted it is hard for me to get around. At times like this I have used wheelchairs especially if I am shopping in a large store or town. Basically I just don't have the energy to put on foot in front of the other.
    Being in a chair also helps me from being distracted which means I kind of slip into a dream world and stop on the spot or wander blindly towards whatever has caught my eye. I know it sounds a bit weird. For anyone caring for me the chair just kinda makes it a bit easier.
    When I feel well I can walk all day over any ground no problem, I can go quite fast for miles.

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  • Message 8

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    Posted by wulfee (U12804568) on Thursday, 25th September 2008

    I have had Post Viral Syndrome since Nov '06....... After 18 months of dragging myself around on crutches, my legs quickly become overtired and refuse to move properly, I finally brought myself a wheelchair this summer. The wheelchair allows me to do the everyday tasks, like shopping, without spending the next few days paying, being unable to do much of anything. It has made a huge difference to my life YAY

    I still use crutches to go for short trips and every so often for longer walks, so I can see how well I manage. My biggest problem now is that I have developed a severe foot drop (right foot) when even slightly tired and have to wear a foot splint when out of the house, the dratted thing really hurts my heel smiley - sadface

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  • Message 9

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    Posted by tam (U1723260) on Thursday, 25th September 2008

    I can walk for short distances, like around the house and garden, but can't stand still for more than a few seconds because of pain, so a chair is a liberating alternative for me. Without it I couldn't go out, go shopping (especially queueing), get to the pub. I used to manage the queueing by taking a little folding stool in my backpack, but that's degenerative diseases for you - solve one problem and it circles round and comes at you another way.

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  • Message 10

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    Posted by Philip (U12001532) on Thursday, 25th September 2008

    I have created a group on facebook about this although I don't think I can link it here. But I do think it is important to make other people see you don't have had to have lost the use of your legs to use a wheelchair! 

    It would be a sad person who triangled or removed the name of the group, should you wish to post it here!

    Many links stay, it just depends if your face fits smiley - smiley

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  • Message 11

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    Posted by bulekingfisher (U8365651) on Thursday, 25th September 2008

    Hello Julie Comfort

    It was really intresting to read your letter as I can relate to your situation. I lost partial co-ordantion in all left sided mucsels I can move my left knee but not the ankel/toes my left elbow but not the wrist/fingers my left eye can not focus very well so I use glasses. I use a mobility scooter + have for the past 5 years + life is more dignifed, worth living, it has a porpuse and I enjoy it.
    I get about inside house by leaning against the wall/door jaum/heavy furniture with my right arm + walking very slowly

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  • Message 12

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    Posted by Ykoriana (U11239973) on Thursday, 25th September 2008

    I have a chronic illness that affects my energy levels and stamina differently on a day-to-day basis. I've also started to walk more recently because I got depressed about the wheelchair, but there are times when if I didn't have the chair, I'd just be in the house, especially since we don't have a car.

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  • Message 13

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    Posted by dis1dat1 (U12738316) on Thursday, 25th September 2008

    one thing mentioned in this thread is buying a wheelchair and I would advise anyone to get one perscibed. this can be done through your specialist or GP. They refer you to the wheelchair clinic for an assesment and its important so you get the right advice so you know what you need. You dont have to have a NHS chair you can have a voucher for a suitable chair but I found some very good advice especially the sizeing as most chairs are to big for me and advice about pressure cusihon ect.
    disdat

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  • Message 14

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    Posted by macaques (U13422167) on Thursday, 25th September 2008

    I've got ME too, in my case I've had it for about 4 years-ish now, but I've only started properly using a wheelchair for about the last 2. I can just about potter about the house upright providing I hold onto the dado rail but stairs can be a bit antagonising so I quite often just tackle them on my arse.

    I can't stand up long enough to wait in a queue or walk much further than the other side of the house without collapsing in a heap of exhaustion and soreness most days so going out shopping or anything is out without using a cripple charriot. I usually only get properly out of the house (doctors appointments don't count) about once or twice a month as my sleep pattern and the waxing and waning-ness of ME keeps me well under its thumb.

    There's been some very Lou-and-Andy type moments though where my Mum or her partner have been left holding on to an empty wheelchair while I'm at the other end of the shop browsing for a bit when I feel like a bit of independance; I'm sure they get some very interesting looks and tsk tsk tsks. I'm increasingly getting to the stage where I simply can't do that at all now though so since my arms are my only good bit I'm getting a self-propelled wheelchair (NHS waiting lists, yuck) so at least I can still keep that bit of independance. I HATE having to be pushed around the shops by my parents so i'll most definately punch the air when I get my new chair anyroad.

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  • Message 15

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    Posted by RoseRodent (U1896879) on Friday, 26th September 2008

    Areas vary on NHS provision, we don't have the voucher scheme and they will not even see you at all unless you are totally non-ambulant. Basic criterion is can you get from bed to toilet on your feet, using any aids you may use. If yes, no chair. BUT still go see a qualified wheelchair fitter if you are buying, a chair that is too big or small causes all kinds of extra trouble!

    If anyone else was thinking of quitting an office position because there's too much getting up and down, call in Access to Work first, as they can part-fund all sorts of things that might help you stay where you are (if it's what you want) like motors on the office chair so you can take it with you when you move around the office. Specially if you are inhibiting fluids so you don't have to walk to the toilet, cos that's not right!

    Funny, if you stay in the house all wrapped up like a hermit when you are AB people think it's not right, stay in because you are not able to manage without mobility aids and suddenly it's OK then. Unreal. If anyone starts with the "oh the wheelchair will make your muscles weak" you can tell them "oh yeah? So did staying in bed, and this is a lot more productive resting and going somewhere at the same time". Some people have measured with pedometers the steps taken before and after wheelchair and come out that they do MORE walking after the chair because they can go to places which are of interest and value.

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  • Message 16

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    Posted by batsgirl (U4263247) on Friday, 26th September 2008

    Like Bulekingfisher, I walk about short distances inside familiar places (like my home, my mum's house, my workplace, etc) by doing what my occupational therapist calls "furniture-walking"; lurching along holding on to stuff. Sometimes I don't even need to actively hold on, as long as I know what I'm planning to grab/which way I need to steer myself if I start to fall.

    But outside, or in an unfamiliar place where I don't know what's good to grab, I must have my walking stick and/or someone to hold on to. Walking in this way is painful and tiring and although I can rest and then carry on, the rests become more and more frequent until eventually I can't carry on at all.

    So if, for instance, I'm going to a restaurant... I will manage to walk with my stick from the disabled parking spaces into the restaurant, and then to the table, and after dinner, I'll manage to get back.

    But if I'm going shopping or to the zoo or to a large hospital or even for a nice summer evening's stroll around the block, then wheelchair or scooter it must be - there's no other way of doing it.

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  • Message 17

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    Posted by jockice (U1828467) on Friday, 26th September 2008

    Yeah, I do that too. I recently visited relatives and used my crutches inside their homes as I'm not sure whether things I could lean on will move or not. Also, I don't like leaving fingerprints on other people's walls.

    Unfortunately I had a fall while using crutches in my uncle's place (I caught one on the bottom of a chair) which made them even more vigilant than usual. Every time I made the slightest move, one of them would rush to my side.

    This, of course, totally destroys my concentration, and basically gets in my way, but I've given up trying to explain this. They just don't get it. Doubt if they ever will either.

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  • Message 18

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    Posted by jockice (U1828467) on Friday, 26th September 2008

    I also got asked if I crawl about in my own flat. Er, not often....

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  • Message 19

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    Posted by RoseRodent (U1896879) on Friday, 26th September 2008

    But outside, or in an unfamiliar place where I don't know what's good to grab, I must have my walking stick and/or someone to hold on to. Walking in this way is painful and tiring and although I can rest and then carry on, the rests become more and more frequent until eventually I can't carry on at all.  

    Fess up, you copied and pasted this from a DLA form, didn't you? smiley - laugh Section "Walking outdoors in unfamiliar places"

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  • Message 20

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    Posted by batsgirl (U4263247) on Friday, 26th September 2008

    Copy/pasted, no, but I see what you mean. Sorry. Appeal coming up, you know how it is.

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