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Freaked

Who Has A Wheelchair?

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I'd really like one, but my parents don't want to get it for me (and I have no money of my own atm). Ideally I'd like a motorised one since I wouldn't be up to pushing myself far, but they're too expensive. I'd just really like to get out and about again as I've really been housebound for over a year, and walking is just so awful. Starting to become agoraphobic tbh and I'm not going to get over that if I'm feeling desperately ill and trying not to collapse every time I'm out.

Just wondering who has one? When do you use it?

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I have two, and I use them everyday. I typically don't use the legs on them, so I can utilize my legs to move and help work them a bit, but when out in public, I will hold my feet up under me and use my arms. I look at using them as working out sometimes, because I can alternate back and forth.

When in the house lately, I do try to walk a bit, but always have my chair nearby, or somewhere to sit. I love to bake and cook, so when in the kitchen, since it's hard to get around there, I station chairs in different place, so I can take a few steps and sit if need be, be at the right height to chop veggies, etc. I use it to go longer distances I don't feel comfortable doing as well, sometimes that can be just around the corner of my door to the couch, or to the garage.

I have another that I use in public, it's more comfortable for sitting longer, and in public is always my fear of passing out, I'm safe in that chair. I do take a few steps to get onto the stage at church to play drums, and a few steps back, but for the most part, I have it nearby just in case.

I fought the chair tooth and nail when my doctor and my friends decided I needed it, because I had banged myself up pretty good with falls, but in the end, they have been worth it. I'm afraid of being too reliant on it, hence why I'm trying to walk more in safe areas, but being out, it's handy. I hadn't had to purchase them, one was an old one my grandma had, and the other we are currently borrowing from a friend, but I also have a script from my doctors to get another one if need be. If I could get one like my older one, which fits in doorways, I would get a new one, but they are all much wider now, and having the one that can go in doorways has been very helpful.

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I thought deconditioning-(not trying to walk) could make POTS worse? I have not entertained the idea of a wheelchair. Soon we will get my daughter back to exercise.

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Rehabilitating. To be able to go from laying to being upright is a victory. Whether sitting or standing.I've only been dx with pots for 6 months. I'm back to work part time and I have to sit in between taking care of my patients. I used devices like these in the interim. If I wanted to shop during the holidays with my family. I used the carts provided at stores, as I didn't have the means financially to buy one. Just another tool for our toolbox to pull out when needed.

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I went from passing out while laying down, to being able to sit up for a couple hours with my feet down. It hasn't been an easy 9 months, and I still have quite a ways to go. I would rather use my chair, than dislocate my hip again, or worse, break something,especially while out of my safe zones. It ensures I can get to my desk and be worthwhile when I'm studying for school, it ensures that I can make to my appointments and focus on the problem at had for whatever appointment it may be (therapist, pots visit, etc). It's gotten me out of my house, and that honestly has been one of the biggest pluses of the entire thing.

No one wants to step outside their door and feel nothing but panic because their body is so unpredictable. And I would worry about others around me, what if I hurt them. I don't have that fear now. I stand as I can, I walk as I can, sometimes that's more, sometimes that's less.

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I try to walk around the house since it's small and there are plenty of places to sit when I need to although for the most part I stay on my laptop all day because I'm too sick to do much although I go to the gym a few times a week (and it's extremely miserable and I get sick) to avoid deconditioning. I have just a basic wheelchair that cost about 100$ that we leave in the backseat although we rarely use it. I've only used my wheelchair a few times but it's great to have it when I need it. When in grocery stores we use the wheelchairs there and besides that and the Gym I rarely leave the house. I mainly use my wheelchair for places where I'd have to stand for more than 5-10 minutes which besides the grocery store we don't really go to places like that often, hence why we don't use my wheelchair often. If your parents won't buy you one now I suggest taking advantage of the wheelchairs in stores (lots of stores where there's lots of walking around have the motorized wheelchairs) so that at least that is easier.

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I don't have a wheelchair of my own and don't use one for everyday excursions like the grocery store or walking the dog. But when I went to Florida to visit my dad, we went to Universal Studios and I used a rented electric scooter there and we also went to a wildlife sanctuary and I used a regular wheelchair there and my dad pushed me. I never would have been able to enjoy those 2 activities without the wheelchairs. I also used a wheelchair assist in the airports since I didn't know how far I'd have to go or how long any lines would be. I agree that if we are able without being a danger to ourselves, the more walking we can do, the less deconditioned we will become. But it was well worth using the wheelchairs to be able to enjoy those activities that would have required me to be on my feet for several hours.....otherwise I wouldn't have been able to go.

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Thanks for the replies. I am extremely deconditioned, but atm my exercises need to be sitting or lying down. Last time I started doing them again, I came down with fevers that lasted a month and was totally bedbound, though that may just have been an unfortunate coincidence and I do want to start again, ideally with the help of a physiotherapist. I can walk a very small way, like 50 metres, but it makes me very ill and my diastolic pressure often spikes (so my standing BP can be something like 120/100), so I really avoid it when I can cos it's just awful and scary. Walking properly again is a while away for me, and I just don't want to be trapped in the house another year. I wouldn't use it around the house though, unless I was having a *very* bad day. My parents don't want to get it for me cos they figure it'll just make me more deconditioned, but atm I'm just not leaving the house/car at all and it's been this way since Feb 2013, so clearly the current strategy hasn't worked.

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I've had a wheelchair since 1983 because of ME/CFS. I used it a lot until the late 1990's when family or friends took me out. I had to be pushed because of arm weakness. I haven't used it for years but if my walking worsens further I may use it again.

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I used to have a wheelchair. First my Mom pushed me in it because it was too hard for me to push it myself. Then after a while when I gained more strength, I would use it as a walker and sit down when I needed to. I am able to walk better now and just need a seat with me just in case I need a rest, so I use a walker with a seat. I don't know what kind of insurance you have but I have medicaid and they paid for both. So I didn't worry about the cost.

Don't let anyone worry you about it keeping you deconditioned because the more you get out the more you'll want to get out and the more you'll want to do.

I think some people see it as a bad thing.But to me it always helped me do more than I would have done without it. Same thing with the walker. I can go to the stores for hours instead of 1 store and then home. I feel now I would like to look into getting a cane with a seat, for those times when I just want to run in the store for one thing and get out. I always have to take the walker just in case I need the seat. I'd be great to just have a fold up seat on a cane for that.

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I have had times when I absolutely needed it to be able to get out at all, and times when I didn't need it at all (except after episodes). I inherited my wheelchair from my grandmother. I did try using it for preventative purposes at school so I would not pass out on campus, but I found that using it throughout the day made me feel worse in the long run (deconditioning perhaps?), so I went back to walking and resting as needed.

I sometimes need to use them in airports because I do not do well rushing through crowds with luggage. Grocery stores should have their own wheelchairs or power chairs for customer use. I've used those before, too. Maybe try going out to a store that has one?

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I thought about getting a wheelchair but dropped the idea, as at least for me, it wouldn't do anything. I can walk for 10-15 minutes but then I definitely have to lay down to recover (sitting down wouldn't help at all). I can sit upright for 15-20 minutes, then again I have to lay down to recover. If I would be able to tolerate sitting upright for let's say 1 hour I would get myself a wheelchair immediately.

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