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Wheelchair for people with CFS

Discussion in 'Lifestyle Management' started by river, Dec 26, 2010.

  1. Boule de feu

    Boule de feu Senior Member

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    OMG. Such a horrible experience. I can't fly anymore. It does something to my veins and my blood pressure.
    I don't know what it is. Maybe it was a panic attack? I thought I was going to die.

    We should get rid of the fatigue word and call it chronic immune dysfunction syndrome (CIDS).
    It sounds right, too!
     
  2. taniaaust1

    taniaaust1

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    oh wow.. Ive always found airports very helpful (except one time when they placed me in the wheelchair somewhere out the way and forgot me and had me almost missing my plane.. they actually told me it was too late then.. and it was all due to their mistake!!.. but some tears due to all this actually had them reopening gates and pushing me throu). Ive only flown in Australia and to New Zealand.

    I have been asked what my disability was... and they actually made me put things in writing about it due to me not having a doctors letter they started demanding and telling me I couldnt fly (that only happened the once where they were going to stop me flying as I didnt have medical clearance letter they suddenly wanted)
     
  3. taniaaust1

    taniaaust1

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    It used to be said for ME/CFS ones to use oxygen while on planes, they (some experts) used to say that it stopped one from crashing during the journey or right after the flight. I think it was something to do about planes and altitude. One dont seem to hear of this anymore (maybe cause most planes are pressurized??? or maybe the ME/CFS experts have changed their views on this?).
    ......

    The only health issue flights tend to give me is extreme (I had tears rolling down my face as it hurt so much) ear pain on landing. Ive found nothing stops this symptom for me.. i tried chewing and sucking on something while descending.. I tried holding my nose and trying to push the pressure out my ears.. and other things people recommended. The ear pain lasted hours each time I flew.
    The ringing in my ears then after landing went on for well over 24 hrs
     
  4. Boule de feu

    Boule de feu Senior Member

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    If you feel embarrassed, you could say that you just had surgery or you were in an accident.

    This is what is wrong with this disease. Why can't we say that we suffer from chronic fatigue syndrome the same way we would for diabetes or cancer? Our illness is one of the worst we could have and we are ashamed of it... ashamed of its name.

    A few weeks ago, I met two ladies. They were going door to door distributing pamphlets for the elections. As usual, i was walking with my cane... very very slowly. One asked me what kind of accident I was in. I remember thinking "Oh, boy. Here I go again.", and I had a little pinch in my heart. I heard myself say: I have chronic fatigue syndrome. With her hands up, one of the lady looked into the sky and started yelling: "OMG! OMG! You have this dreadful disease??? This is something going on with your immune system, isn't it? How do you cope?" And they started asking me about my life. In a way, it felt good. They understood what I was going through.

    To say the least, I was very surprised that they knew so much.

    I think we underestimate the people around us. Many have a friend or a relative who has CFS. They know about it. We need to talk about it.
     
  5. Boule de feu

    Boule de feu Senior Member

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  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have often ordered a wheelchair (also for flights to and from Europe) and I have never had anyone ask me what was wrong. Not sure they are allowed to. I wouldn't worry. Enjoy being taken care of.

    Sushi
     
  7. Nielk

    Nielk

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    Thanks Sushi. That's comforting to know. I just don't want to lie yet I don't want to be ridiculed or asked a lot of questions. I hope you are right and no one will ask. When I called the airline to reserve it, they didn't ask why so I hope it will be the same at the airport.
     
  8. taniaaust1

    taniaaust1

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    Wow!!! That sounds great :) , Ive never had a postive reaction such as that. It shows why IF we are up to it at the time, we need to put the shame aside of its crappy name, otherwise people will never become educated. It really is often up to us.

    The shame of the illness also stops us uniting and hence becoming stronger. Maybe ones neighbours or someone down the road also have ME/CFS but are keeping it to themselves as the other is.
     
  9. taniaaust1

    taniaaust1

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    hahaha I can imagine that.

    "Why are you in a wheelchair?"
    "I had surgery"
    "ahh you are looking so good. When was the surgery?"
    " ummmm **thinking of another lie*** A week ago"
    "What did you have done? Where you in an accident?"

    ................

    Nielk .. dont stress.. a person "probably" wont ask. Having something in mind thou IF it did occur does help.
     
  10. Dainty

    Dainty Senior Member

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    Nielk, as many have said they probably won't ask, but if I were you I'd rehearse a statement beforehand so that if you are asked you have a ready answer.

    I'd recommend something along the lines of, "I'd rather not say." Or even "It's a bit embarassing". People tend to be really careful about not offending a person in a wheelchair so these kinds of replies are often enough to stop the questions.
     
  11. Boule de feu

    Boule de feu Senior Member

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    Well said. =-)
     
  12. Nielk

    Nielk

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    Thank you everyone for your advice. I reached my destination!
    I had ordered a wheelchair from Jetblue for both airports and it worked great.
    No one asked me what's wrong with me.
    I felt a little strange but there is no way I could have done it without it!
    When I got to the airport there was a special booth for people with special needs with chairs there if you need to wait.
    I waited for them to bring my wheelchair and the woman took me through everything! The checking in, the going through security (didn't have to wait on line) all the way to my gate and when it was time to board they took me all the way to the plane. When I landed, after everyone got off the plane, they had someone waiting with a wheelchair who took me all the way to the baggage claim and even got my suitcase for me.
    If I din't have this option, I would have had to cancel my trip so, thank you everyone for encouraging me.
     
  13. urbantravels

    urbantravels disjecta membra

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    Nobody's ever asked me what's wrong with me when I've ordered the wheelchair service at the airport. I do bring my cane along - not just as a sign of disability but also to offer stability during those times when I'm out of the wheelchair and may get run down by hurrying travelers.

    The only thing they'll ask you is at the security gate - whether you can walk through the gate on your own. (And at this point you won't have your cane because they have to put it through on the belt.) They will probably also ask whether you have any metal implants anywhere in your body. The wheelchair pusher will wrangle your luggage, and will cut you in at the front of the security line if there is a long line. It's kind of an astoundingly rapid way to get through the airport, in my experience.

    If you need to use a restroom, ask the pusher to stop when you see one; I always loudly announce "I can walk in there on my own" and go in with the cane, leaving the wheelchair and pusher outside the bathroom. I find that clearly stating what you can and can't do in advance helps smooth the process along.

    On a recent trip I decided to bring my own (cheapie, manual) wheelchair and it was a ton of extra hassle, especially since the different airports seem to differ on policies about whether you can check it at the curb, or at the gate...and then there was even more hassle when the cab driver on the trip home from the airport couldn't figure out how to fit the folded wheelchair into the trunk. Two cabdrivers and the cab starter were all wrestling with it for a long time before I finally had to get out of the cab and take the footrests off for them! I don't feel like bringing my own wheelchair again since it's just a manual and you can usually find one to rent or borrow at your ultimate destination.

    I don't use my wheelchair in daily life: only for things like museums and other outings where I couldn't possibly walk or stand long enough to actually look at things (and then, only when I have people along to push me)

    ETA: Neilk's response slipped in before mine. Glad the trip went well for you!
     
  14. Boule de feu

    Boule de feu Senior Member

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    Yeah! :thumbsup:
     

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