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Wheelchair for people with CFS

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

  1. urbantravels

    urbantravels disjecta membra

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    I've just had my first experience with using my new wheelchair, on Xmas vacation to the high desert with my family. I can't see myself using it often for short errands or most daily activities, but if I want to do more in life than just the necessities - get food and get to the doctor's - I want to have the option available. I particularly want to be able to go to museums and galleries like I used to, and a wheelchair is really the best way to be able to do this - I can stand and walk for short periods of time, but there are *never* enough seats in museums.

    On this recent trip, my family was more or less fighting over the chance to push me around, but my brother-in-law seemed to claim the honors most of the time. We discovered several wheelchair-accessible nature trails in Joshua Tree National Park and explored those. My dad got very interested in fixing the footrests so they would fit me (I have long legs, and he is a Mr. Fixit type).

    I also learned I could get a *lifetime* pass for free access to all national parks just for being disabled, so I signed up. My main gripe about my disabled parking pass is that it is rarely any use to me in crowded parking lots - because the disabled spaces are always already full. However, it really, really rocks to be able to park at parking meters without paying or time limits.

    I wasn't ready to accept *any* of this at first, but I've taken it one bit at a time. Getting the wheelchair took me months of waffling around and not deciding, but the family vacation was a hard deadline that I had to meet.
  2. Sallysblooms

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

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    Your trip sounds great. How great to have lots of people that wanted to push you in the chair. I agree, they are great for conserving energy so you can do more! I am so glad you got your chair! Just nice to have in case you want it. Some days I feel great, some days like this evening, NOT. My POTS is really acting up. I have a w.chair in the car and one in the house.

    Wish you would post a pic. of your trip!
  3. Sallysblooms

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

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    Lancelot, I used to walk daily with CFS. On bad days I couldn't but on most I did. My little poodle loved it so I did it. I didn't have POTS then.

    POTS will not let you walk as you know. At least at first. NOW, I am slowly getting much better. Tonight is not a great night for POTS, but a bad POTS day now is wonderful next to how I was this time last year.

    I know what you are saying about the terrible lightheadedness, nausea, etc. with POTS, OI, etc. HORRIBLE. Do not to more that you can. Be careful. I cannot take a walk now, just walk in the house, to restaurants, a little with shopping...I take a folding cane seat for shopping in small places like Chicos. My hubby pushes me in my w.chair in large stores and long walks.

    Take your time, just take care of yourself.
  4. urbantravels

    urbantravels disjecta membra

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    Pictures of Joshua Tree (a small selection). I have no pictures of myself in the wheelchair but other family members took some. Don't know when I will get those, since everyone else in my family has the bad habit of leaving pictures in their cameras forever. I download mine the instant I get in the door!

    http://www.flickr.com/photos/thenitpicker/sets/72157625577939329/
  5. Sallysblooms

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

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    Great pictures of Joshua Tree. We drove through, but never stopped. We lived in Bakersfield for 8 years. Your photos are just gorgeous! I love them all, but the one with the glass is something! NICE! I am like you, I get my pics downloaded fast.
  6. Nielk

    Nielk

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    Urbantravels,

    Amazing pictures! I almost felt like i was there.
  7. rwinsmom528

    rwinsmom528

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    Anyone use a tilt in space wheelchair?

    I have a manual transport chair that people push me in, but I find that (due to POTS, I guess, or to ME/CFS) I still can't sit up for very long at all without PEM. I really went over m limit when I went to my daughters' music recital and stayed for the dinner afterward. Two weeks of PEM and counting.... Can't even really get around in the house now either. My kids bring me things. Sometimes I have to stop and lie down on the floor just trying to get from the couch to the bathroom......

    Just wondering if any of you think my having a tilt in space wheelchair might give me some independence at home and not so much PEM when I do need to go out. Do I dare to hope that it would allow me to get out of the house more than once every couple of months?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Not sure what a tilt is space wheelchair is but a friend of mine has an electric wheel chair that tilts to any level so she can lie down in it. It does allow her to go out more--though she has to have a wheelchair accessible van. She can lie down while riding in the van. It is a lifesaver for her.

    Sushi
  9. urbantravels

    urbantravels disjecta membra

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    When I looked at wheelchairs the reclining ones were way, way more expensive. But no doubt if you have severe PEM from sitting up, the best option would be a reclining, powered chair with head support.

    My plain wheelchair is OK for short outings, but I can already see that I'll need to get some sort of lumbar support cushion because the back is so straight up and down, and of course it doesn't solve the problem of having to hold my head up for extended periods. I've had good results from physical therapy to strengthen my neck (though it took months) so I don't have the severe neck pain I used to suffer from.
  10. rwinsmom528

    rwinsmom528

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    Thank you for your reply, Sushi. Do you know if she usues the recline feature and elevating foot rests when she is not riding in the van? If so, does it seem to take up a lot of space or get in people's way?
    A tilt in space wheelchair looks like this: (sorry I couldn't figure out how to get the photo to post, but if you do a search og google images "tilt in space wheelchair" you will see several). Rather than having a reclining back and elevating foot rests, the whole seat, including foot rests, tilts in space. I thought that it would take up less space when tilted back than a full recline with footrests elevated. (when going to something like a recital, I would not block two aisles ;) I am thinking that it would be easier to tilt the whole thing than to adjust both the footrests and back. A regular furniture recliner does pretty well for me, and seems more like a tilt in space than what I have seen of reclining wheelchairs.

    As far as the travel to and from places, if I have a chair that can be folded or dismantled or in some way to be able to fit into a truck bed, that could work for me. I would not ride in the chair while traveling, but I would ride on the removable bed that my brother built over the back seat of my Dad's truck. (He built it so I could go with the family on a vacation- I hadn't been anywhere except doctor's offices for several years.) Sorry I don't have a photo of that at present, wish I had thought to take one.

    I know the tilt ones are pretty expensive and I doubt that my insurance would be willing to pay for a tilt one for me (POTS or CFS are not listed as conditions that they will provide a tilt in space wheelchair for), but I haven't tried yet. But I have an idea for a home made one that would be lighter and easier to transport. If insurance doesn't come through, I think I will ask my mechanical engineer father, machinist uncle, and cycling brother to help me make one. With the four of us working together I'll bet we can come up with something pretty neat.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    hi rewinsmom,

    I don't know any more about her wheelchair except that it was expensive--but I think Medicare paid. She reclines much of the time. She can only sit up for a minute or two at a time, so she really needs it. And, she is still in her twenties! She has a hard time.

    Sorry I don't know more.

    Best Sushi
  12. Ann

    Ann

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    Sushi

    Are you able to give me the name & number of where your daughter bought her chair?
    thanks a lot
    best,
    Ann
  13. Nielk

    Nielk

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    I have to take a three hour flight tomorrow by myself. I've done it before but this time I'm in much worse shape. I can hardly walk or stand. I pre-ordered a wheelchair at both airports since there is so much walking involved in the airports. This is my first experience doing this or using a wheelchair altogether. I don't really have a problem with it because it's a necessity, I just don't know what to tell them if someone asks what's wrong with me?I have visions of me saying chronic fatigue syndrome and them laughing in my face.
  14. Boule de feu

    Boule de feu Senior Member

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    When I started using a cane, it only felt akward the first days.
    I am not saying it was easy for my children to see me like this, but they saw someone who wanted to go for walks even though it was very difficult for me. I am very stubborn and I would go outside no matter what! ;-)

    I am not using a chair because I am housebound and the pain is bearable in my legs when I don't walk. However, if I go for a long walk (10 minutes), I have the pain and the spasms you are talking about. When I get back from a doctor's appointment, I can't move around the house and must lie down or sit in a chair until I can get back on my legs. I think that if this condition would be permanent, I would not hesitate and I would start using a chair.

    In my opinion, using a wheelchair IS NOT a sign of giving up. It is the other way around. It shows you have reached another step in your condition and you are doing something about it. You still want to do things and refuse to stay in your bed. You might not be able to walk anymore but you choose not to give up by doing what is the next "normal" thing to do.

    GO FOR IT! =-)

    P.S. I was wondering how you are dealing with the fact that you can't use your legs as you used to.
    It is one of my biggest fear... what if it would become permanent?
    Would you mind talking about this?
  15. BEG

    BEG Senior Member

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    I have done rather a lot of flying with this illness because my family lilves out of state. I always indicate handicapped and need assistance when I purchase a ticket. However, airports vary significantly in the amount of help you will get. I've gone through security while sitting in a wheelchair and personally delivered via wheelchair to the gate. And at other airports I've been ignored and have had to beg for tram rides to the gate. I always take my cane as a sign of disability. It's difficult for the airport personnel to ignore. Arrive in plenty of time to ask for that wheelchair from the get go.

    You won't be asked, nor do you have to tell what your disability is. Good luck to you.
  16. Boule de feu

    Boule de feu Senior Member

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    The first time I showed up with my cane at Walmart, the lady who welcomes you at the door came running and offered me a scooter right away! So, the trick is to show up with a cane... ;-) No need to feel embarrassed. She thought I had had an accident and knew I could not go around the store like that.
  17. Boule de feu

    Boule de feu Senior Member

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    OOPS! I've just realized that this is a very old post.
  18. BEG

    BEG Senior Member

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    Still very pertinent info. It's not an easy decision to buy a wheelchair. You asked in an earlier post about how it felt. I wanted independence so badly, that that I never gave the decision a second thought, but now I can understand others' concerns.
  19. fla

    fla Senior Member

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    I bought a wheelchair just a few weeks ago because of my POTS becoming so severe I can't stand for more than a few minutes. Just manually rolling the wheels can quickly cause exertion triggering PEM so unless my wife pushes the chair for me, it's only partially helpful. Unless my POTS improves, I can see the need for an electric scooter/chair to actually gain some independance.
  20. taniaaust1

    taniaaust1 Senior Member

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    Probably too late to get one now but always best to take a letter from doctor saying you are safe to fly too. A plane once got held up and airline was going to kick me off (I was already on it by this stage.. I'd booked ahed for one of their wheelchairs and all seemed to go well till I was onboard) as they suddenly got too worried that I could be too ill to fly and started demanding letter from my Doctor saying they wouldnt let me fly otherwise.

    (i think I had so much trouble as I actually looked quite unwell too.. very dizzy and wobbley when I was on my feet, I think I scared them.. I started tremoring.. and they thought I was going to pass out as I also had to lay across seats as I couldnt stay sitting too long). So I suggest whatever you do, if you have faints or have dizzy attacks.. Do not tell them!! cause they wont allow you on the plane then. (better to say you get weak at times)

    But yeah.. getting wheelchair is always best idea (they will then also then carry or trolley your luggage for you as well).

    Instead of saying chronic fatigue syndrome.. you could call it by its other term.. chronic fatigue immunity dysfunction syndrome... that sounds a little more serious and more likely to be believed.

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