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The Wheelchair Question...

Discussion in 'Lifestyle Management' started by JAXintheCity, Sep 17, 2010.

  1. JAXintheCity

    JAXintheCity

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    This is something I've been thinking about for a long time, but would like some advice. How do you know when to 'just bite the bullet' and get a wheelchair to get around?

    For example, I'm not severely disabled at this time. I can go to school and do work, providing I am sitting down most of the time and can 'crash' in the evening and on weekends.

    Recently, my husband and I tried to go to a museum and it was just miserable for me. All the walking felt like torture (we were only there for three hours), but I was hit bad afterwards. My husband and I talked about using a wheelchair, because I like traveling and museums -- but I feel like I'm not disabled enough to actually use one... (BTW, the same issue arises with grocery shopping, commuting, etc.)

    However, I know if I used a wheelchair -- it would probably let me get out of the house a LOT more, and do a lot more fun stuff.

    So, thoughts? Who uses one? Experiences with it? Reactions to you?

    Thanks for your help!
  2. Min

    Min Senior Member

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    Without mine I would have no life at all outside the house. I think you sound as if you need one to improve your quality of life.
  3. justy

    justy Senior Member

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    Hi Jax, this is something i have been thinking about myself recently. It feels werd to talk about because i CAn walk - but only for about 10 mins before keeling over. So i have been mainly at home for the past year. I only go out to places where i can park outside (i dont drive anymore on my own either as i get really anxious, i have to be taken) I can walk around the supermarket, but days out with the kids are athing of the past. I know it would enable me to go out more, but just feels downright weird to do.

    I think my husband and family would freak if i mentioned this to them, especially as last year i developed agoraphobia due to feeling really ill when i went out alone. Surely people will think i am even more of a nutcase if i go for a wheelchair. On the other hand if my health doesnt improve soon, i will be stuck in forever. I live in a very small rural community, i know i would be stared at and whispered about. I think even i would find it hard to know if i really needed it or was just doing it to feel safe.

    Would be nice to get out more though.
  4. Dainty

    Dainty Senior Member

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    Jax,

    Not including when I'm merely taken for drives, I'm about 99.9% housebound (more like roombound), but on the few times I do go to a destination it is while being pushed in my wheelchair. For me it became an immediate necessity, but I still felt like I somehow didn't deserve it, because after all I do have functioning legs and the ability to walk short distances.

    However, in years since I've realized to my surprise that it seems generally well accepted that those wheelchair-bound might be able to walk a bit. Airline policies for wheelchair users mention that you'll need to let them know if you're able to walk a few steps or not, so that they'll know how much assitence you need. While goign to the dentist or two the place where they do those huge X-ray things for looking at your bite I was asked if I could walk a few steps, if I'm capable of standing for a short period of time while hanging onto something, etc. So in my limited experience people take it in stride and don't even begin to suggest I might not really need it. I don't know if that's because I have someone else pushing me, or because my severe MCS necessitates unusual clothing and holding a wet towel over my mouth and nose, or if it's just because people assume that you wouldn't be in a wheelchair unless you needed it to get around to the extent that you're doing. Whatever the case, my experience has been good.

    Several months ago after being caught without it several times I made the switch to always using my cane when I stepped out of my place of residence, as opposed to only on really bad days. The difference is I live in an RV trailer where I can constantly be holding, touching, or leaning against something to maintain my balance as I move throughout, but the moment I step out the door the big wide world has these huge open spaces that don't agree with me so well. Realizing that I had to start using my cane at all times just for walking a few steps beyond my door was hard for me, and I resisted it as long as possible. Even when I had a psych eveluation for SSDI I didn't bring my cane becuase I didn't want to come off as trying to appear more disabled than I was, but after the interview I had to have my caretaker go and get my cane because I was unable to walk the few steps back into my trailer without it. After several more such instances I realized it was time to "bite the bullet" as you say and keep it with me as a matter of course.

    Wheelchairs and canes are tools to assist us in mobility; any limitation that hinders your mobility makes it socially acceptable for you to use these aids.

    I recommend you get a wheelchair - just because you have it doesn't mean you have to use it - and go from there. Experiment with what you feel comfortable with. Try it on an outing where there aren't many people around so you can relax and not worry about what others are thinking. If it improves your quality of life, and it sounds like it would, that's all the justification you need.
  5. Victoria

    Victoria Senior Member

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    I suggest you do whatever helps you have the best quality of life (in your current health condition & circumstances).

    I'm not in your position, but my afternoon walks in the gardens or down the beach make life truly wonderful.

    Many years ago, at the weekends when I was exhausted all the time, I certainly got taxis EVERYWHERE - shopping, medical appointments, what ever. I have even asked taxi drivers to help me into their taxi. I do remember getting desperate at times waiting for a taxi to get home with the shopping, & have even sat down in the gutter as I in too much pain & too exhausted to stand. I've called taxi companies & begged them to get a taxi to me as I was too exhausted & in too much pain to wait any longer. From time to time I even caught taxis home from work (a 15 minute walk, or exactly 3 minutes drive in a car when there wasn't much traffic). It's hard to imagine catching a taxi for a 3 minute trip. I wonder if the taxi driver thought it was a joke to drive down one road & turn the corner into my road to bring me home.

    Talking of embarrassment.........................

    There was the odd occasion when I had to ask a colleague to drive me home from work as I couldn't walk a step further. I remember the embarrassment when one colleague & I started walking out to her car & I burst into tears and cried all the way home in her car (I was in so much pain). I also cried several times at work as I was in unbearable pain - embarrassing. I have to tell you, getting around in a wheelchair would be far less embarrassing than crying for an hour or so in your office with other staff coming & going & whispering (asking what was wrong with you).

    I am much, much better these days & can walk around for 2-3 hours now, but I DO remember the bad old days when I would have given anything to sit on a wheelchair & be pushed around a supermarket. Gosh shopping was exhausting.

    Ignore any side glances & rude stares, & get a walking stick or wheelchair if it helps you enjoy life (or just to do the shopping) or go out for a while to get some fresh air or see the world around you.

    Even now, as well as I am, I often stop slap bang in the middle of the footpath (in the city peak hour rush of pedestrians) to catch my breath (or if chest pain strikes). Sometimes people bump into me. Too bad, when I've got to stop, I've got to stop.

    Justy, the only nutcases are those who have the bad manners to stare. Why not try hiring a wheelchair for a couple of weeks to try it out. See how you feel.

    The first day or two, you will be self conscious. That's ok. I would be too. But by the time you go out for the 3rd or 4th time, people will have got their gossiping out of the way & might even offer to help you. When your family realise how much you need a little extra help, I'm sure they will come around & help you out some more........and so on.

    I can't imagine ever seeing anyone in a wheelchair & thinking that they don't actually need it.
  6. aiden424

    aiden424

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    I would do what ever makes life easier for you. I was totally bedridden the first two years of being sick. I finally started using a wheelchair and it made such a difference in my quality of life. It was either stay bedridden for over 24 years or use a wheelchair and get on with life as best as I can.

    Kathy
  7. IntuneJune

    IntuneJune Senior Member

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    wheelchair

    While I could cheerily support SOMEONE ELSE getting a wheelchair.....I cannot bring MYSELF to get one and I should. I have limited my fun but not doing a number of activities because it was too much walking.

    A intermediate alternative though may be the travel scoot. It is more sporty looking than a wheelchair.


    http://www.travelscoot.com/

    There are a few posters here at Phoenix Rising who have this......hopefully, they will check in and give us an update.

    June
  8. LaurelW

    LaurelW Senior Member

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    I've been debating this question for months. I sure could use something like that scooter (it's really nifty), but the price--ack. Does anyone know if Medicare pays for mobility devices?
    :wheelchair:
  9. urbantravels

    urbantravels disjecta membra

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    I've been pondering this question too. I can walk and get around well enough for my basic errands, but I so desperately miss things like museums - I've been to a few *small* galleries here and there, but of course doing a big museum is out of the question. I don't think I need to *own* a wheelchair but have been considering looking into renting one for occasional excursions of this type.

    My sister is an art historian, and she told me a story about someone (art critic or art historian? don't recall, but someone well-known in the art world,) perfectly able-bodied, who would use a wheelchair whenever he went to a museum just because it made it easier to examine an artwork for as long as he wanted.

    I started walking with a cane a couple months ago, after a certain amount of agonizing (I don't really *need* it, will people stare at me, etc.) I don't use it around my apartment but I use it when I go out in public. I'm so glad I made the plunge. It helps me feel more secure and sends a signal to those around me that I am a slow moving object, which might otherwise not be immediately apparent - I *look* like a relatively fit, youngish (ahem) person, with no obvious signs of decrepitude except in my movements.

    The power of the cane amazed me when I started using it. People don't stare unpleasantly - if anything, they give friendly, sympathetic looks, go out of their way to open doors, etc., where before they might wonder why I totter along so slowly and be impatient for me to get out of the way.

    I think the logistics of a wheelchair would definitely take some getting used to; but if it allows you to participate in life more than you would otherwise? I say go for it.
  10. Hope123

    Hope123 Senior Member

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    Many museums have wheelchairs for free if you ask about handicapped access. These wheelchairs do need someone to push you or you need to self-propel with yours arms/ legs. Also, some malls and many markets (including Costco, Trader Joes's, Safeway, etc.) have free mobility scooters at the front for people to use and may even ask if you need a "helper" to go with you around the store. If you don't see it, just ask. Simple wheelchairs that fold and where someone pushes you cost <$100 so better to buy than rent for these; self-propel wheechairs (where you use you arms and legs) or scooters can cost quite a bit more. Think about portability of the w/c and also the weight -- my aunt uese a w/c so we've talked a bit about this before.

    I can walk short distances occasionally but have a handicapped parking placard. Maybe it's a function of the area I live in but I haven't been questioned or looked at oddly for using it despite being in my 30s. OTOH, I don't really care what people think since it's none of their business anyways and I will do anything to maximize the quality of my life. Sometimes having a confident attitude nixes the naysayers -- I found this worked for my life pre-CFS as well.

    Medicare does cover scooters, etc. but there are certain qualifications and your doc has to fill out forms. The coverage is not 100%. There is a crackdown on this since in years past, there was a lot of fraud around things like this by companies selling scooters, etc.

    [Whenever I think about disability, I think about university professor who had MS and used a scooter. There were times when she would need someone to help set up her materials for lecture and she would simply ask a student at the beginning to do it. I never heard students complain about it, even behind her back. They would complain about her grading methods, the test, the boring lecture, but not about her disability. I think sometimes people are more accepting than we think. Anyhow, she is a role model for me for conducting yourself with dignity despite illness.]
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I should have gotten one years ago! I was SO tired and ill with CFS. BUT, when I got POTS, there was no choice. You can't walk with POTS! I could barely walk to the restroom without fainting. Blood doesn't reach the brain.

    We have a transport w.chair for the car for church and large places. I have one inside too, that has the regular wheels to push for bad days. I am getting better finally, but the w.chairs are my friends. I love them and wish I had them when I just had CFS.

    It is just a tool so you do not overdo. Also so you can get out more.
  12. illsince1977

    illsince1977 A shadow of my former self

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    I have a wheelchair and I wish I were well enough to use it! I keep it just so I can get to the doctor if need be. I can't sit upright without my heart pounding so hard I think I'm going to die. If I could, I'd get out and use it. I wish I could go to the grocery store or the museum or out to dinner for that matter! Don't deprive yourself of any pleasures in life that your body is capable of. You're just cheating yourself. As for what others who see you when you're out and about think, who cares? Whose life is it anyway? Theirs or yours? Life is too short! Get the d**n chair!
  13. Tammie

    Tammie Senior Member

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    Medicare only covers them if you need to use them inside your home.....they could care less if people need them to get around/shop/etc

    and they do not cover scooters at all

    stinks, bc I am at the point where it would be very helpful to have a scooter when i go anywhere - I can't push myself in a wheelchair, nor can I get any of the normal ones in and out of my car, but I could probably manage the lighter weight travel scoot since it can break into two pieces and is very compact when taken apart....however, the cost is way beyond my means
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    W.chairs don't have to be expensive at all. As I said we have two. I just WISH they would make pretty colors! Sick of black. ha.
  15. IntuneJune

    IntuneJune Senior Member

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    I really like the TravelScoot, but wish it were not so expensive.


    June
  16. Tammie

    Tammie Senior Member

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    actually they do make them in a bunch of different colors, but those versions are quite expensive

    as to the cheaper ones, I could possibly manage to afford one (although at this point anything is too expensive for me - SSDI does NOT pay enough to live on); however, the only way a cheaper one would be mangeable is if it came with a person to put it in and out of my car & push me around! ; )
  17. IntuneJune

    IntuneJune Senior Member

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    And while we are discussing this........could that person LOVE to clean!!!! Oh, the possibilities!!!!

    June
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, the ones in colors are expensive for sure.
  19. urbantravels

    urbantravels disjecta membra

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    I sure could use a robot husband who loves to clean, would push me around in a wheelchair, and who also has an excellent income to support me in the style to which I would like to be accustomed. Other functionalities optional :Retro wink:

    Of course a real human being to do all those things would be even better, but too complicated. Even disabled, I'm way too independent to want to be supported by anyone. And my past history seems to indicate that when it comes to human males, I like 'em broke, unavailable, or both. Alas.

    The robot version would be a lot simpler to deal with. :sofa:
  20. illsince1977

    illsince1977 A shadow of my former self

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    I had to LOL at this one!

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