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Wheelchair for people with CFS

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

  1. river

    river

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    Since I have been bed bound for a few months so far because my legs collapse under the weight of my upper weight and they're always numb and the muscles are always contracted and in pain, the doctor and the social services rented gave me a wheelchair to move around.

    Now the problem is that my relatives either thinks that I'm giving up and not fighting enough (how presumptous are people who think they know better than you how much you're fighting?!) or that the dignoses is wrong because no one with CFS ends up in a chairwheel even if temporary.

    What do you think?
    Is is really weird and unusual for someone with CFS to use a wheelchair during a period of extreme leg weakness and PEM symptoms? Or maybe I can show my relative few resources and articles that explain that the use of a wheelchair is common in CFS?

    Happy Holidays!
  2. Carrigon

    Carrigon Senior Member

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    There are MANY people with CFIDS/ME who use wheelchairs. And if you need one, there is no reason not to use one or to feel ashamed of it. If you have trouble with standing and walking, you need the chair.

    I'm sort of in between now. Like I don't feel totally ready for one yet, and at the same time, I have to be allowed to sit anywhere I go. And I have been wondering how long till I'll end up getting a scooter.

    Weakness is definitely a part of this disease. Feeling like you're going to collapse. It's all a part of it.
  3. Min

    Min Senior Member

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    I've used a manual wheelchair when out for 20 years, without it I'd never make hospital appointments or get round the shops - I'd be totally housebound. I'm to foggy to use a scooter.

    people who think you're 'giving up and not fighting enough ' by using one are showing their immense prejudice against our illness. Bet they don't accuse others who need one of 'giving up and not fighting enough '.
  4. Nielk

    Nielk

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    I'm at the same point in life.
    I go out very seldom because like you I have to sit because of POTS.
    I've been struggling with the idea of getting a scooter.
    I would definitely be able to go out more, even to doctor's appointments.

    I don't know why I am afraid to take that step.
    Is it that I don't want to scare my children and grandchildren. They know I'm sick and in bed most of the time but I
    don't think they know the extent of it. Seeing me in a wheelchair or scooter might frighten them.
    It might also be that I am embarrassed in front of people which doesn't make sense.

    Thinking more about it, if i was just considering myself in a world without other people I would have gotten one three years ago already.
    It doesn't make sense that I don't do this for myself.
    Ocean likes this.
  5. Mithriel

    Mithriel Senior Member

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    People with cerebral palsy are very scathing about the able bodied who suddenly need a wheelchair and get all upset about it. The say it just shows how prejudiced our society is against the disabled. When you think about it, they are right.

    A wheelchair is a tool, nothing more. A car is a tool for getting places when walking is too difficult or inconvenient, so is a wheelchair. It isn't a sign of anything apart from a problem walking.

    Explain to your family that using a wheelchair will not only let you participate in life - do they want you to spend the rest of your life indoors? - but it will prevent you deteriorating to the point where a wheelchair is not an option for getting out on bad days but a necessity - is that what they want for you? Put the onus on them, do not be apologetic.

    Your grandchildren will not worry about you if you tell them it is something you are using because your legs are tired. Let them play with it. In a shopping mall with a polished floor they could push you and feel very helpful.

    I was upset when my grandson was born because I would never be able to push him in his pram, but he loved my wheelchair and would climb on my lap when he got tired.

    Quite simply, people may be shocked the first time they see you, but not the second. And if they won't see you again why worry :D

    Like everyone I know, including people with MS, I wish I had got one sooner.

    By the way, don't think twice about getting out to stretch your legs occasionally. People may stare but less than half of wheelchair users can't walk at all. You are simply educating the public.....

    Happy rolling!

    Mithriel
  6. LaurelW

    LaurelW Senior Member

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    I got a wheelchair a few months ago, and I'm so glad I did. Yes, it is hard to adjust to people's attitudes, but it allows me to do things like grocery shopping and going to the airport that I did with great difficulty before. And now, my sweetie can take me for long walks, which were definitely out of the picture before since I can't even walk around the block without sitting down to rest. So I say, go for it. People will get used to it in time, and almost everyone in public is very kind and helpful.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hey Nielk and River,

    I know what you mean. Some days I am fine to go out and walk around, but on others I need to sit down all the time. Some people use one of those canes that fold out into a small chair. If you just need to sit down while waiting in lines etc. this can work.

    The other option that doesn't cost money is to break the psychological barrier and use one of those scooter shopping carts that most big stores have. I was horrified by the idea of using one till one day I was really tired and just did it. It made a huge difference and was actually fun to cruise around in. Part of the fun was "thumbing my nose" at other shoppers who couldn't see any signs that I needed one.

    I always take a wheelchair when flying too.

    Basically, think of yourself here and do what you need. I know lots of ME/CFS patients who use wheelchairs or scooters.

    Sushi
  8. LaurelW

    LaurelW Senior Member

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    Yeah, those big store scooters can be a Godsend. Sometimes I feel like the back of the store might as well be on Mars.
  9. Nielk

    Nielk

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    I think there is a psychological barrier that i need to cross in order to take the step needed to get a wheelchair/scooter.
    I feel it's like carrying a big sign saying "Look at me - I'm disabled, weak not capable of even walking"
    But, who am I kidding, that is the fact.
    Am I trying to hide the fact of how disabled I really am?
    I think that's a big part of it.
    Ocean likes this.
  10. Sallysblooms

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

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    Yes, it is a tool. My neighbor used one with a broken leg. There are a million reasons to use one for a week or for years. Whatever makes life easier. It is not giving up to use one. You can do more. It helps the upper body get stronger! I have one in our house and one in our SUV. I don't need it inside the house very often now thankfully. Just really for long trips in large stores or when we walk our little dog. It helps you get out and do more.

    It was a bit hard to get used to, but people are always so sweet when we are out and I am using it. Hubby pushes me in it and people open doors etc.

    I also have a folding chair cane. I have POTS, that is the reason I need these things. When I get lightheaded I can sit. The chair cane is nice for places the w.chair doesn't fit or places I just don't need the wheel chair in.

    I wish I had gotten my wchairs sooner! I am slowly using them less. Without them, I would not have been able to get out of bed with the POTS and get stronger.

    I use everything I can to help. Heart Rate monitor watch, blood pressure monitor, etc....they are so helpful!
  11. Wonko

    Wonko Senior Member

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    it's not giving up - it's the exact opposite

    you can use the energy you currently use trying not to fall over for other things and not be chained up inside

    sitting down your unlikely to get PEM'd as fast even though currently your upper body may not be used to being used that way

    try it - it's the only way to know but hopefully it should improve your QOL quite a bit compared with now
  12. river

    river

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    Indeed I'm feeling way better.
    The first days I had terrible arm and back pain but now it's gone and I need to sleep less, feel stronger in the upper body and I have less brain fog.
  13. lancelot

    lancelot Senior Member

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    most days i'm too sick to leave the house, but i can manage a short errand on my best day once every 1-2weeks. When i goto a large store like walmart or costco, i should be using their electric shopping cart but i'm too embarrassed to use it since i still look young and healthy. i'm also too embarrassed to use my disabled placard so i just drive home if the parking lot is too full. If i crash while shopping, i just sit in my car, rest and take my emergency adderal(amphetamine) before i drive home. I could probably get out more often if i used a wheelchair, but can't accept the fact that my elderly parents would have to push me around town.
  14. Sallysblooms

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

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    When I got POTS I felt weird being in the electric carts, my wheelchair etc, but I am WAY over it now. I have really figured out that no one really cares if you use a chair or whatever. They are busy and not worried about what I am doing. I sure feel that way. If I see someone in an elec. chair, etc, I figure they have a problem and I do not give it a thought. No one should be embarrassed. I get lots of help with doors etc in my chair. Nice attention from people in that way but no one is wondering why I am using them.

    I have learned that not pushing works best. Slow healing, slowly building up my activity. With POTS you will pass out if you are not careful so there isn't much of a choice.
  15. lancelot

    lancelot Senior Member

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    Actually, i'm not embarrassed by what others may think of me, i really don't care. i know most people will be sympathetic to those in a wheelchair. But, i've not accepted that i am this disabled and i am embarrassed for myself if i give into using a wheelchair or handicap placard. I have no problems seeing others use it, i'm just not ready to.
    There are some things i am not ready to give up nor accept because of this horrible disease.
  16. Sallysblooms

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

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    I see, I guess we are all different. I just know it is good to use energy carefully so you can get better. I do hope you have a better New Year. I hope we all do. I use mine just for long trips or walks. My little dog loves it.:thumbsup:

    [​IMG]
  17. lancelot

    lancelot Senior Member

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    Sallysblooms,

    It's nice to know that we are not alone and that we have options to help us with this DD. Hope you and your cute lil' dog have a great 2011!
  18. Sallysblooms

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

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    Thank you! I am doing so much better. I can't wait to see what the new year brings. I have a great attitude. BIG difference from how I felt last year. I can't take a long walks to our nearby lake alone yet, hubby still pushes me, but I am working on it. I took a walk every day when I just had CFS after I had improved, but the POTS slammed me....

    [​IMG]
  19. lancelot

    lancelot Senior Member

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    Yes, you do have a great attitude and it is very inspirational to some of us who are still trying to accept our disabilities with this disease.

    Do you actually feel better with walks? I have the same problem with POTS and OI in that no matter how much or how little i walk w/o causing PEM, the POTS and OI(extreme lightheadedness, brain fog, confusion, nausea) always kicks in which makes any short walk a real downer for me.
  20. I am also one who uses a wc for going out. It means I can enjoy the experience, get some fresh air and feel part of the human race. My husband takes me to the movies and out for coffee - things I couldn't do if I wasn't sitting in a wchair. I don't use it at home but also have a mobility scooter for going outdside. I've heard ME/CFs people say "you'd never see me in a wheelchair" . They are then complaining how they never go out and how lonely they are. You have to get over the feeling of shame at being able to walk while in a wheelchair and thinking that others are judging you. It is part of my journey to get better to do everything to stay part of society. I always feel better afterwards - so do it for your health. I have also bought a wonderful mobility scooter called travelscoot which folds up and can be put into the car boot. It is wonderful for those who don't have someone to push them. It has a great website. I urge you to stop thinking about others your health is the most important thing and having relapses is not good, wheelchairs will give you control over the amount of energy you can use everyday.

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