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The Wheelchair Question...

Dainty

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This is so, so true. My family completely believes in CFS...but they don't like to talk about it. I think it hurts them that I get so sick and there's nothing they can do to help. When I mentioned a wheelchair, one member was like, "That's giving in!"
Sounds like what that member was really saying was, "That's admitting that you have a serious health problem!" Well, uh, yeah, 'tis the truth. :p I think sometimes people feel that if we don't talk about it and they don't talk about it then everyone can pretend it doesn't really exist. A wheelchair shatters that coping strategy into a million tiny pieces.
 

Sallysblooms

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Andrew, was that a question for me? That is our transport chair. My hubby pushes me. We went for a walk that day. It is lighter and easy for getting in and out of the car. We keep it in the car. I have a regular one with big wheels to push myself at home on a bad day. Most of the time I walk fine in the house. My POTS makes me very lightheaded so it is great to have it in the house and ready.
 

LaurelW

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I ended up getting a wheelchair that has the big wheels, but you can pop them off and turn it into a transport chair. I had to have the lightest one possible because sometimes I have to get it out of the car myself, and of course, when I'm self-propelled. It's a Drive brand Pollywog wheel/transport chair. I also like to be able to take off the big wheels because then it's easier to lift it into the car and it can fit into a smaller space.
 

*GG*

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This is so, so true. My family completely believes in CFS...but they don't like to talk about it. I think it hurts them that I get so sick and there's nothing they can do to help. When I mentioned a wheelchair, one member was like, "That's giving in!"
Just say it's not giving in, it's adapting to your new reality! Adapt or get worse and possibly die?! Right?
 

Hope123

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My problem now is that some people in my family (who have always been sympathetic, esp. since my mom also has CFS), and particularly my daughter who is a nurse, just don't understand, and think it will lead to me getting more deconditioned.
Ask your daughter to read the following article, if she is willing. It talks about deconditioning and CFS and has scientific references. You can also take this article to your doc if you feel he/she is interested. As someone who has worked in rehab before, I realize that some deconditioning will come with being sick but it's not as though many of us choose not to move. Many want to exercise (I was a runner/ swimmer) but PEM causes problems. Part 3 talks about de-conditioning/ kinesophobia in particular.

http://www.cfids.org/cfidslink/2010/pem-series.asp
 

Tammie

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For those of you who have wheelchairs, were you fitted for them, or did you just get a standard size? Are you able to adjust the back so that it is straight up and down or tilted?

What material is the seat and back? I have read that sometimes the material does not have enough tension & that it creates a "hammock" effect.....that sounds really uncomfortable.....what about seat cushions - would they make it harder to reach the wheels to push yourself or cause you to sink in too much and not give enough leverage? Aside from the obvious super expensive ones, what materials for the body and the wheels will last the longest, be the most comfortable, etc?

Are there other questions I should be researching? How long do they generally last? Will any of them fit behind the front seat of a car or is the trunk pretty much the only way to carry one with? Are bigger rear wheels easier or harder to push? What about the front wheel size? Are the foot rests adjustable (the angle)?

I know some chairs list some of these things, but without actually trying one out, how do you know what to get (provided that there are a few chairs in the same price range)

If there is no medical supply store to go to try one out, is there any other way to get an idea of what would work best?

ETA: I have several chronic pain issues in addition to ME/CFS and Fibro which is why I am wondering about fit/comfort so much (the ones I am esp worried about are fairly bad sciatica that can make some sitting positions pretty painful, and chronic myofcaial pain, esp in my neck and shoulders that might cause major knots if I am at the wrong angel for pushing or if it is too hard to push)
 

Mithriel

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I will try to answer some of your questions.

I was fitted for mine, but they really just come in certain sizes and they chose the one that is closest to your measurements so you can do that at home.

You can get chairs with reclining backs or high backs or get a neck rest that fits on an ordinary chair. These are expensive, though.

I have used one that was imitation leather that was comfy enough but my others have been canvas. This does sag eventually but not so's you'd notice. One thing that was useful - you can get a bar that fits across the handles which you tighten to tension the back and make it more rigid. I was also given a back cushion for the small of my back. These were good when I was spending hours in the chair, not so necessary for a quick trip out.

The seat cushion was comfortable but raised me too high to rest my arms on the sides. Cushions come in all sorts of material as people who cannot are paralysed develop pressure sores very easily.
Cushions also help keep you warm as the cold seeps up. I sometimes sit on a blanket but it is not ideal as it tends to slip forward.

I like to keep mine flat in the boot of my car but my friend took the back shelf out of her car and kept her chair standing up. It can be hard nowadays to get a boot big enough to take a chair lying down.

Some cars can be adapted so that the chair can be used instead of the drivers seat.

I have had my manual chair for over ten years now but the canvas is beginning to get holes in it where it folds. You have to make sure the brakes work and I would recommend getting wheels that don''t puncture. They say they are not such comfortable ride, but I have never noticed a difference and there are puncture making bits everywhere. I was confined to the house for a week until I could get a puncture repaired on my old chair.

The larger the wheels the easier it is to push. When I was going to a class once a week I had extra large wheels (removable for the car) so that I could wheel myself through the centre. I had a chair for a while that had small wheels and I did not like it. I felt too dependant on the person pushing. I do not push myself, that is bad for people with ME/CFS,but the larger wheels let me turn to look at things I want and I can get into toilets myself.

I think some chairs have adjustable leg angles. I take the bands off the foot rests - I don't need it as me feet don't slip off - and it means I can move my feet about to keep them comfortable and get in and out more easily. I was given the tip from another wheelchair user.

Because of the problems faced by paraplegics, wheelchairs can be customised a lot though these tend to be expensive ones.

In the UK, you can get a salesman to come to your home to demonstrate chairs. There are also disabled living centres in some places and big exhibitions put on.

If you have problems, it would be worth trying o sample some before you buy or maybe buy a cheap one and see how you get on with it.

Do the medical people help with wheelchairs in the US?

I hope you find something to fit your needs.

Mithriel
 

Sallysblooms

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I posted a pic of me in the transport chair. I don't have one of me in my indoor w.chair. We just ordered the transport chair. Then I wanted on with big wheels for the house if I am really sick with POTS sometimes. Otherwise I never use it. No measuring. Just bought them both. I don't need them unless I have to walk or stand up a while.

I don't need any extra things because I walk fine. Just the POTS that makes it hard to go too far. I am getting better thankfully.

Call some stores in your area that sell them and I bet they can help you with the chair that is perfect for you.
 

ixchelkali

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I wouldn't hesitate for a minute to use a wheelchair if it meant I could get out and enjoy things more. Just because you are able to walk doesn't mean you don't "need" a wheelchair. People can need a wheelchair for all kinds of conditions, including ours. I use the electric ride-on shopping carts at the supermarket and K-Mart, because without them I couldn't shop (or it would take several more days to recover). At first I felt self-concious about walking in and taking one, but no one has ever seemed to question it. I also use a wheeled walker with a seat when I need to.

A wheelchair or a walker isn't anyone's idea of a fashion accessory. I think most people assume that if you're using one, you have a reason for it. And actually, I've found that many people are helpful and considerate when I'm using them, like asking if they can help me reach something.

If it's a question of not wanting to see yourself as disabled, well, I think that's like someone who doesn't wear glasses or a hearing aid when they need them; it's vanity. And I think it's a shame to let vanity stop you from enjoying everything you possibly can.

When I wasn't quite as ill as I am now, I used a rental mobility scooter to go to the county fair and to the Highland games and to a conference. I'm so glad I did, because I haven't been able to do things like that since. I would hate to have missed my (possibly) last opportunities to have those experiences. So ask yourself, if you knew you would be housebound next month or next year, what would you do?

Go for it! Do whatever it takes to enjoy what you can, while you can, is my advice.
 

ixchelkali

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So I went ahead and got the chair and used it to go to lunch with family and go grocery shopping. I couldn't believe how much easier it was, not having to stand up, and how much longer it took to get really tired.

My problem now is that some people in my family (who have always been sympathetic, esp. since my mom also has CFS), and particularly my daughter who is a nurse, just don't understand, and think it will lead to me getting more deconditioned. I have a nephew with cerebral palsy, and he is always in a wheelchair, so that is what they are used to. I've tried to explain how debilitating orthostatic intolerance is, and just how limited my energy is, but I don't think they get it. Perhaps they have never really understood just how disabled I really am and this makes it real to them. I don't know. Anybody got a clue how I can get them to be more comfortable with this? I think that this is partially why I waited so long to get the chair in the first place--I was afraid of people's reactions.
Laurel, for your daughter the nurse, perhaps it would help to share with her some of the materials on post exertional malaise. If your family is like mine, they really don't want to talk (or hear) about CFS much. But the wheelchair issue could be a chance to give them some information. Maybe you can explain the concept of the energy envelope, and that if you exceed your energy limits, not only can it bring on a flare and/or PEM, but it might actually retard progress toward recovery. You could explain the energy budget, that you have a limited amount of energy and if exceed that amount (are "overdrawn"), you make yourself worse. Using a wheelchair allows you to make your finite amount of energy go further.

Using a wheelchair might make it seem that you're "giving in" to being sick, but actually it represents a desire to be out and about, staying active, as much as you can. The alternatives are (1) staying home and avoiding activities that require walking, or (2) going out without the chair and making yourself sicker. Using a wheelchair to stay active and involved is preferable to either of those. Because of the peculiarities of CFS, using less energy doesn't decondition you so much as it keeps you from getting worse. It will help if you're family can grasp that.
 
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Back in the day, in the years when I first came down with CFS/ME and could still work and walk and stuff I said something to a dear man that was dying due to HIV. He told me he didn't know if he could use a cane. I said please use what you need honey cause pain may be a part of Life but suffering was optional. When he lost his fight with AID's he bequeathed me his cane. It sits in the stand with my collection of canes and over the past twenty plus odd years I see it and remember that suffering is optional for me too.

I have gradually progressed in accepting my limitations and every time I use another assisted living device I experience another breakthrough from my own denial. I'm a stubborn woman!
When I was better I used a mobility scooter bought with a collage disability scholarship. But I have not had a vehicle that would accommodate any electrical devices, like my scooter. That's my next project.:D

I began using a cane, full time, six years ago because I was stumbling from being dizzy, and loosing my sense of my body in space, with all the attending bruises and falls. Fortunately I live in a space that is small enough that if I forget my cane (too often!) or start to fall I grab on to the walls and door jams. I confess that I stopped wearing high heels when they were pulled out of my cold shaky hands. lol.

I used to have to shop and do all my own errands so I went to stores that had scooters. Eventually becoming comfortable/desperate enough that I would ask a passerby to tell the folks inside that I need a scooter, meal, food, my prescription. Many people are very kind. Last time I was allowed to drive I met the sweetest young Russian woman... There are angels everywhere and it's the little miracles that make my days sing.

My Life is so much easier now that I have a Certified Nurses Aid, that Medicaid pays for, who takes care of my home, brings me food, and makes sure I brush my teeth. lol. She does all my shopping and goes to the Dr. with me. I have recently used the Medicaid provided stretcher vans to take me to a procedure I was having. I find that I can not sit up straight for more the five to ten minutes with out becoming nauseous and more symptomatic. That was one of those mixed experiences that we all deal with when we have to rely on poorly sourced government aid.

What was I saying? Oh ya, I do not have the strength to wheel my self around, that would wear me totally out. So when my mother died I had to shame my sister into giving me mothers electric chair at the post funeral gathering. Ugh... don't ask. That chair is wonderful. I can go really fast. I also have a Medicaid provided wheel chair that folds. I use various pillows to help with the exponentially increasing pain in my coccyx and hips from siting on my padded seat. I think my chair has a leather back and seat. But it could be genuine imitation Naugahyde.

I have been my own advocate through many years of reams of paper work, social workers, rules that are not rational, and the multifarious government entities that are set up to keep you from their resources. I'm not complaining, tonight anyway, because when I look at what I have accomplished over the past years to get some of the help I need, and given how sick I've been, it's been rather remarkable. That's what folks say to me and I need to believe it to maintain a positive sense of self.

Sorry this was so long. I hope I didn't lose you after the first couple of paragraphs.

So, smoke if you've got 'em and grab the reins of that wheeled puppy, throw some neon underr the bottom, pop some wheelies and ride out in style.

Blessings and Good hunting.
 

IntuneJune

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Agreed, great thread

Yes, thank you. This thread was good on so many levels, practical and so much more.

When I travel, I don't mind using the chair..... but around town....where I can bump into folks I know..... different story. I really need to work on myself. :rolleyes:

Intellectually, I do get it. Emotionally.... I simply don't want to "get caught" in a chair. Geezzz. OK, maybe I could be in costume...

June
 

Mithriel

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My mother was suspicious of the chair when I got it, asked if I really needed it :Retro smile: but she developed bad asthma. It got worse so she had trouble walking, but she needed a special type of shoe.

These were only available in a nearby town so she agreed that I would take my power chair and she would use my ordinary one with my daughter pushing.

We left the car park, went to cross the road and the first vehicle that past was my cousin in his work's van, tooting and waving at us. The whole family knew about the wheelchair by bedtime :Retro smile: (and they didn't have the shoes.....)

You only feel embarrassed the first time, afterwards you wonder what you bothered about. It looms like a mountain but is only a molehill when you look back.

Mithriel
 

Dainty

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Another thing to note is that in my experience, when I'm comfortable in the chair then the reaction of strangers becomes a source of mild entertainment for me. They tend to see me, stare for half a second and then quickly look away, then try to casually glance in my direction without appearing to do so, trying so hard to not appear rude but obviously curious and stressing about the proper reaction. I find it funny because they're the ones uncomfortable about it, not me, and my personal perspective is that if our society wasn't so fixated on being politically correct people would be more comfortable around the disabled instead of feeling pressured to act as if there are no differences. Nevertheless I do find it kind of cute that the general public tries so hard to be sensitive.

Though with me there are other odd indicators besides the wheelchair, so YMMV.
 

Sallysblooms

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My husband and I have found that people are wonderful! They open doors, get out of the way, ha and help so much! The people at church are wonderful, we love to have doors opened for us since he pushes me. We use the transport chair.
 
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So - we've decided to get a wheelchair.

Can anyone recommend a good one that can be pushed (and I can push myself for short distances if need be)... and can fold up and fit in a car...for under $200?
 
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So I went ahead and got the chair and used it to go to lunch with family and go grocery shopping. I couldn't believe how much easier it was, not having to stand up, and how much longer it took to get really tired.

My problem now is that some people in my family (who have always been sympathetic, esp. since my mom also has CFS), and particularly my daughter who is a nurse, just don't understand, and think it will lead to me getting more deconditioned. I have a nephew with cerebral palsy, and he is always in a wheelchair, so that is what they are used to. I've tried to explain how debilitating orthostatic intolerance is, and just how limited my energy is, but I don't think they get it. Perhaps they have never really understood just how disabled I really am and this makes it real to them. I don't know. Anybody got a clue how I can get them to be more comfortable with this? I think that this is partially why I waited so long to get the chair in the first place--I was afraid of people's reactions.
My sister is trying to arrange a family outing over the holidays. I was upfront with her (and my family) by email saying I can only go with a wheelchair, and don't know how they feel about it. My sister (whose kind of a "I don't care what anyone thinks type") was like, "Whatever...no problem by me." My parents called me later and we're like, "HOW ARE YOU FEELING?!?" But, they never brought up the email and/or the need for the wheelchair. I found it funny.

I think they just hate to admit how 'sick' we've become. I think this disease might be as hard on our loved ones, as it is on ourselves. Or, that's just me giving people the benefit of the doubt... looking for the positive, blah blah blah.

I'm afraid of people's reactions, too. But I'm desperate to go OUT...especially to see Christmas Lights! YAY!