Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Wheelchair Training Guide

Discussion in 'Information and Resources' started by lior, Sep 7, 2018.

  1. lior

    lior Senior Member

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    Judee, Wolfcub, Moof and 1 other person like this.
  2. Wolfcub

    Wolfcub Senior Member

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    Those links are really useful @lior
    We often don't think about the aspects of using a wheelchair, but the reality hits when we have one and have to learn.
    If ever I have to use one I hope it will be a 4-wheel drive to get me across my favourite fields! :balloons:
     
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  3. Dechi

    Dechi Senior Member

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    I haven’t used a wheelchair yet, but it’s on my mind a lot lately, since I can rarely go out anymore. I can’t walk for long and I get so dizzy I can’t stand stil, either.

    But there is no way I would be able to push myself on a wheelchair. And since it’s only me, I have no one to push me. Do people with ME manage to use a manual wheelchair by themselves ? Electric ones are sooo expensive, and you need to have a big shed or garage for them. Sigh...
     
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  4. lior

    lior Senior Member

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    @Dechi I've been thinking about the same things. I also don't have anyone to push me.

    I tried out a manual wheelchair in a shop and it was easier than I thought it would be. It didn't require a lot of power to move it... but it was just short distances, and on a flat surface.

    My plan is to try one out at a gallery where they have wheelchair hire in a couple of weeks, with a friend. Hopefully it will be a manual one that I can push (not just for being pushed by someone else, though this is likely). Testing it out is really the best way, I think.

    I'm not planning to spend money on something I don't know is right for me. I will try before I buy.

    I suspect that a manual one will still take a bit of energy to move around, but it will be so much less energy spent than walking. My worry is going up the slight hills in my neighbourhood.

    A lot of wheelchairs are foldable so I'm not worried about the space issue.
     
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  5. Dechi

    Dechi Senior Member

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    I would love it if you let me know how it was ! In my case, an additional problem, I think folding and mostly lifting the wheelchair to put it in my trunk and in and out of the house would make me crash.

    It’s a fantastic option when you have someone to help though.
     
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  6. lior

    lior Senior Member

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    @Dechi there are lightweight ones but they are more expensive. In the UK I think it may be possible to get a wheelchair for free, or a voucher for a wheelchair at the cost of the wheelchair that the NHS would have given you, to be put towards a more expensive one.

    But that process will take a lot of energy to go through... going to the doctors, and I'll bet there's paperwork, etc.
     
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  7. Dechi

    Dechi Senior Member

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    There might be something of the sort in Canada. I tried to have one loaned to me by the local government clinic but they only allow 3 months loan and as they say « you don’t qualify if it’s ONLY to enjoy being outside or go to the mall ». It has to be to go to the doctor’s 2-3 times a week... What kind of crap is that ?

    Thanks for your infos, it’s kind of boosting me a little bit to try harder.
     
  8. lior

    lior Senior Member

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    @Dechi Woah that sounds grossly unfair. They're happy for people to be homebound unless it's to see a doctor? Ughh.

    A 3 month loan... if that was the case for me, I would see it as an experiment to see what difference it made to my life. Though I only go to the doctor a couple of times a month so I wouldn't qualify in Canada. I don't know what the rules are here.

    Go you! Knowing there are other people in the same boat is good for me too :)
     
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  9. lior

    lior Senior Member

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    Thought I would update. I went in a wheelchair properly in the weekend, at a gallery - it was the gallery's wheelchair.

    Other people in wheelchairs smiled at me. People who were moving out of my way smiled at me. This was an unexpected occurrence.

    Being low down did affect my experience of the exhibition.
    Not having to walk made a HUGE difference - I could keep going for longer.
    However, it didn't make the whole difference. I was still pretty much immediately exhausted from the noise, the crowds, the movements, the rich visual environment. Being in the cafe with people walking behind me along the aisle was unpleasant - it's ridiculous how sensitive I am to movement.

    At one point during the exhibition, I got my friend to park the wheelchair in a corner so I could just rest - stop looking at things, and close my eyes. I'm glad I did that.

    I found that my concentration affected my enjoyment of the exhibition. I was keen to see things - but somehow I was less interested in things than I normally am. I somehow couldn't register the details. And it didn't touch me deeply. It could be that the exhibition wasn't great, but I reckon my ability to engage really didn't help. Wheelchairs can't change that. If the crowd wasn't there then it might have been less overwhelming and I might have been able to engage more with the displays.

    My neck and shoulders REALLY hurt from looking at things side on. I don't normally sit up for such long periods either, so that might have contributed - additionally I was probably tense from being so over stimulated.


    I've got a referral to an occupational health assessment, so I will finally get help about whether I should get a wheelchair, or something else. I have been emotionally struggling with the idea of dependance so I'm wary about getting a wheelchair that someone else has to push.
     
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  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I also don't have anyone to push a wheelchair either and I can still walk extremely short distances. I asked my doctor for one of these:
    [​IMG]
    They are foldable and built light enough so that they can be put in the trunk of a car. When I need to leave my home I call a senior van service that has a lift for wheelchairs and walkers.

    I also get a few smiles from others using walkers. I also had the sensation of other walker users checking out what I was using. A lady using a traditional walker (no wheels or seat) asked me where I got mine and I said, "Medicare?" In the US Medicare will pay for these.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    No, manual wheelchairs are very hard work for someone who has ME to push and I can not imagine someone who has ME and never had a wheelchair, getting a manual one to push themselves about in (maybe those who have dysautomonia and have been wrongly diagnosed wtih ME/CFS may though).

    I do have a manual wheelchair but Im reliant on having someone to push it for me. After using this when out for several years now, the furthest I can push it without it become too much for me is about only half way across a small/medium room. (I hurt myself the other week just turning it myself)
     
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  12. taniaaust1

    taniaaust1 Senior Member

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    If someone told me that, I would think they were lying. Most disabled people who use wheelchairs do not go to the doctors 2-3 times a week!! Seriously what kind of health issues cause someone to go to doctors that much unless they are having daily radiation therapy or something. Even someone with two broken legs would not be going to the doctors 2-3 times a week. Maybe though their wheelchairs are more so for temporary disabled people rather than those who have more permanent disabilities who are not constantly going to the doctors all the time.

    I'd think there would be a way in your health system to get a wheelchair.
     
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  13. Dechi

    Dechi Senior Member

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    This bit for renting is really true, I guess they don’t have enough and as ypu say, it might be for temporarily disabled people.

    The governement has a program where they give you X amount of money to buy one. I also read in my insurance brochure that they will pay part of it. So there is hope ! :)

    The hardest part is accepting that you need one. I’m not there yet, but maybe one day !
     

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