 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Arthritis / October 2005Wheelchair or not - revisited
Hi all, I've got severe advanced DISH/OA so I've got bone spurs on hips, shoulders, and thoracic spine in addition to the OA. I'm quite strong and can hike, walk, do all sorts of things--but when I hit my limit I'm unable to continue and in severe pain, and if I push that limit, I'm miserable for days afterwards. My muscles and heart can easily outlast my joints. Good days and bad days. I've been considering a wheelchair to extend my range on days where I know whoever I'm with will be doing a ton of walking around parks, malls, airports, and so on. I feel guilty for considering one when there are many people who would give anything to have the legs I do. But DISH has destroyed the hips, and hip replacement is not the best option because I am young--they want me to put it off longer if I can, even though the joints do need replacing because they will wear out in a few years and my docs say two replacements (bilateral) is all my pelvis will support, if that. I feel that a chair would enable me to mitigate some wear/damage while I continue PT. The chair would be a good way to extend my range and capabilities. Has anyone dealt with thinking about the guilt of having the luxury of being able to get in and out of the chair versus those who must stay in one? Am I wussing out? Am I overthinking this? Is it weird to have to explain that I can bicycle well (low impact), but can't walk well? Do people get weird when they see you in a chair one day, and the next you're walking around? I can't help but have all these conflicting emotions about going for the chair simply because I am in pain. I am more active than many people my age. Yet one small twist or stumble can cut my range from miles to yards, and a long day walking means pain for days afterwards. I've also found myself suddenly unable to continue walking, somewhat "trapped" in the aisle of a store. That's a bummer. I've looked up previous threads but, hey, this is bugging the heck outta me. Thoughts? 2005-10-12, Responding to photog... > Hi all, > I've got severe advanced DISH/OA so I've got bone spurs on [quoted text clipped - 8 lines] > days where I know whoever I'm with will be doing a ton of > walking around parks, malls, airports, and so on. Excellent idea. Many people stick with the self-defeating "I'm not ready for one of those yet!" attitude and as a result, miss out on preventative support equipment that could have extended their health, pushing things beyond what they really know are practical limits, rather than actually deal with the bank of fear and trepidation that can surround the idea of using a wheelchair. > I feel guilty for considering one when there are many > people who would give anything to have the legs I do. But [quoted text clipped - 5 lines] > will support, if that. I feel that a chair would enable me > to mitigate some wear/damage while I continue PT. You KNOW you could use a wheelchair, I can tell you've done some thinking about this. You do NOT need anybody's "permission" to act on your own good advice here! > The chair would be a good way to extend my range and > capabilities. Absolutely. > Has anyone dealt with thinking about the guilt of having > the luxury of being able to get in and out of the chair > versus those who must stay in one? Am I wussing out? Am I > overthinking this? Yes you are overthinking it. Everybody does/will. There is no "solution" to this as there is not really a problem. Its a reasonable self-assessment with a reasonable and practical conclusion. Didja know that that the majority of wheelchair users are capable of getting into and out of their chairs unaided, and many are quite capable of short walks? http://www.ju90.co.uk/ > Is it weird to have to explain that I can bicycle well > (low impact), but can't walk well? Do people get weird > when they see you in a chair one day, and the next you're > walking around? I can't help but have all these > conflicting emotions about going for the chair simply > because I am in pain. No, its not weird, it just seems that way right now. It comes with the decision, and is your "trial-by-confusion" as you now face the pool of misconceptions around wheelchair use. Nothing is black and white, and nothing fits those neat little catagories we live with until we are forced to question them. One thing you will need to keep in mind is the ignorance that will surround you once you start using your chair. ATM we have a popular comedy series called "Little Britain" in the UK, in which one of the main characters is a sullen wheelchair user who allows his carer to struggle and suffer, only to jump from his chair when unobserved, do something that requires health, and get back to his chair just before his carer notices he's been doing something. NOT the best mainstreamed conceptual model for rollers huh? There will necessarily be a kind of role-play required when using a chair. A balance is going to need to be found that suits you, between avoiding "scaring the horses" and accepting more imposed limits on your developing lifestyle. http://tinyurl.com/b28fq > I am more active than many people my age. Yet one small > twist or stumble can cut my range from miles to yards, and > a long day walking means pain for days afterwards. I've > also found myself suddenly unable to continue walking, > somewhat "trapped" in the aisle of a store. That's a > bummer. So... get a wheelchair and start the great adventure. Nothing wrong with the idea, in fact, its a damn good one. Just make sure you get a GOOD chair, one that provides what you need, and not some boat-anchor that will add to your list of injuries. Start researching how to figure out what kind of chair your need before you spend money on one, and remember that luxury in the showroom rapidly becomes basic function after 4 hours in a shopping mall. 8( > I've looked up previous threads but, hey, this is bugging > the heck outta me. > > Thoughts? Yup. Here's mine... STOP FEELING GUILT! Its not YOUR problem what other people think. If THEY have a problem, leave it to them to solve. If you're going to be a roller, which is better... 1/ Wait until you do not have a choice? 2/ Do something positive now, and extend that choice. One thing IS for sure, you're gonna learn something about human nature, and not all of it will be good. :( Me? I'm looking forward to my next "leaning experience". http://tinyurl.com/9z43s P.S. Don't forget to keep a diary of your adventures! Many others will benefit from your tales, trust me. :)  Signature---- * Another squeaking wheel @ http://tinyurl.com/b28fq * Mike's (curious) Brain @ http://tinyurl.com/4872c - Have a nice day, it really does do you good! :) <clip>> >> I've been considering a wheelchair to extend my range on >> days where I know whoever I'm with will be doing a ton of [quoted text clipped - 7 lines] >actually deal with the bank of fear and trepidation that >can surround the idea of using a wheelchair. One time when my mom and I went to Michigan for a nephew's wedding, we both got the wheelchairs at the airport. It was great. It's a long walk most places from the check in to the gates. We left here fine. When we got to Cincinnati, first plane had been canceled because our destination was closed due to thunderstorms, so the pushers took us to the other gate that had a plane going (it was at the opposite end of the concourse we were in.) We got down there and they told us that the plane had been changed to the gate we *were* at, so back we get pushed. Then we get on the plane and it taxis out, only to have to taxi in, because the thunderstorms that closed our destination, had moved in a big line from Cincinnati to Detroit and there were so many planes taking the bypass route to the west, that "that" flight had been canceled. So back in we go, and get the news that we all are going to be put on a big plane leaving from a concourse *across* the runways, so we get rolled onto the shuttle and it scuttles across the runway, everybody looking to the north where there is the nastiest looking black sky with great big bolts of lightning! We just get into the other concourse, and up to the waiting area when we see horizontal rain on the windows! After the line of storms passes, we get on the plane and finally take off, only four hours late. When we got to Detroit, we took the shuttle to get our rental car, then got lost in the housing area where my sister lived, because they had added a stop sign one street before where we usually turn. Since it was now 11 at night - not too many lights and the big trees they have there block the streetlights. Well, we finally made it. I was certainly glad I had taken a wheelchair that time. My legs weren't too bad, but my back could never have taken it. >> I feel guilty for considering one when there are many >> people who would give anything to have the legs I do. But [quoted text clipped - 9 lines] >some thinking about this. You do NOT need anybody's >"permission" to act on your own good advice here! Precisely. If you feel you need it, go for it. There are people with heart problems who aren't supposed to walk more than a few feet and they look perfectly healthy. You know what your limitations are and it is nobody else's business. Excuse the rant. >> The chair would be a good way to extend my range and >> capabilities. [quoted text clipped - 29 lines] >neat little catagories we live with until we are forced to >question them. I seriously doubt anybody pays enough attention to it, really. >One thing you will need to keep in mind is the ignorance >that will surround you once you start using your chair. ATM [quoted text clipped - 5 lines] >his carer notices he's been doing something. NOT the best >mainstreamed conceptual model for rollers huh? Oh, so helpful.....not. We have one store here that provides wheelchairs, but not electric carts. So, how did they expect the single shopper to get around? I went up to the service desk and asked how soon I could get a pusher. LOL Needless to say, a pusher did not come with the chair. I don't do much shopping there, other than in and out for one thing. >There will necessarily be a kind of role-play required when >using a chair. A balance is going to need to be found that [quoted text clipped - 20 lines] >remember that luxury in the showroom rapidly becomes basic >function after 4 hours in a shopping mall. 8( Actually, I have discovered that many places are going to the electric carts. Of course, some aren't done with a reasonable measure of thought, as at one mall, where the carts were kept in the middle of the mall, halfway between the two entrances (at least a dozen stores apart!) >> I've looked up previous threads but, hey, this is bugging >> the heck outta me. [quoted text clipped - 16 lines] > >Me? I'm looking forward to my next "leaning experience". Definitely, now is a good time to learn before you get to the point that you put dents in all your walls at home! One more thought. I've had many people ask me if they could help get something off an upper shelf. One person even took one item my mom got that she didn't want, back to the other aisle. I don't use a wheelchair - I can manage with my cane, but only for straight in and out type of situations. Sometimes, after I've rested for quite a while, I will get up and walk out of the room forgetting my cane, but my knee says oh-oh before I get very far. Loujean God didn't promise us that life would be fair. If it were, who would try for the stars? I've been doing the same self-searching about a scooter. I love going to malls and exploring my new area, but my body has decided we're done with walking. I keep going back and forth. Fortunately I got to teach a class at church last Sunday and, since we're new, they wanted me to start off with telling a little about us. I told them about me and said that if they see me without my cane it doesn't mean I've had a miraculous cure, it just means I'm having a really good day. Decisions, decisions, decisions. OTOH - I have applied for disability. No more jobs for me. DeeTee > Hi all, > I've got severe advanced DISH/OA so I've got bone spurs on hips, [quoted text clipped - 39 lines] > > Thoughts? > I've been doing the same self-searching about a scooter. I love going to > malls and exploring my new area, but my body has decided we're done with > walking. I keep going back and forth. I've gone to a scooter (a sometimes uncomfortable entry model shoprider 4 wheeler) and can't wait for the motorised wheelchair and deployment arm or lift. Being able to move around again without agony is great. Get the scooter. Signaturespammage trappage: remove the underscores to reply I'm going to die rather sooner than I'd like. I tried to protect my neighbours from crime, and became the victim of it. Complications in hospital following this resulted in a serious illness. I now need a bone marrow transplant. Many people around the world are waiting for a marrow transplant, too. Please volunteer to be a marrow donor: http://www.abmdr.org.au/ http://www.marrow.org/ Change is tough, even when you know it has to happen. We all have the "what will people think" voice going through our heads. The only thing that matters is what *you* need to stay moving today and keep moving in the future. A chair will keep you going on the extra active, long days and means getting around easier on the bad days. Either way, you to keep moving, get more rest and be more active without pushing your limits so hard. We can't avoid having good and bad days, but there is no reason that we can't smooth them out a bit. The frst time I went socializing with my cane, I chose to go with people who really didn't care how I showed up, as long as I did. I got a couple looks and a friendly check on how I was doing and that was it. I was so nervous about being "different" that it took awhile to notice how much better I felt. I don't need a cane every day, and did take a while to not feel strange about it. These days I usually work an "having an off day" into the conversation, with a vague wave towards the cane and move the conversation along. I have found that my friends need a little reassurance that it is just another normal day for me, that nothing serious has happend. My advice, shop around and find something you *like* as well as can afford. Paint and decal and grafitti it! Having something that makes you grin when you see it will go a long way to feeling better about using it. My current cane is burgandy and gold checkers. A lady in my neigbourhood has one that is psychadelic 60's. We all need stuff that makes us feel good, no matter what that item is. hth, skip > Hi all, > I've got severe advanced DISH/OA so I've got bone spurs on hips, [quoted text clipped - 39 lines] > > Thoughts? My cane is infamous.....it's bright yellow and covered with smiley faces. I have strangers pass me and say, "Love your cane!" DeeTee > Change is tough, even when you know it has to happen. We all have the > "what will people think" voice going through our heads. The only thing [quoted text clipped - 70 lines] >> >> Thoughts? I am in the beginning of sometimes I appreciate having access to one at the department or grocery stores....but I find that once I decide to put up with "you look too young and good to be in that chair looks" I spend so much energy getting in and out of it trying to shop that I think I defeat its purpose and probably do better without it... Does that make sense... But I believe that if it makes your quality of life better....Do it...You are the one that puts up with the pain...Not the person that watches from across the street...I am sure that your knees do not keep them up in the middle of the night....;) Hugs Cindy > Hi all, > I've got severe advanced DISH/OA so I've got bone spurs on hips, [quoted text clipped - 39 lines] > > Thoughts? >I am in the beginning of sometimes I appreciate having access to one at the >department or grocery stores....but I find that once I decide to put up [quoted text clipped - 7 lines] > across the street...I am sure that your knees do not keep them up in the > middle of the night....;) This is something I'd definitely do if I were you. Have you used the electric carts that are available in grocery stores and places like Wal Mart? Are you relaxed and comfortable using them? And try before you buy. Borrow or rent a chair for a week and see if you will use it and if it helps. When I really feel like cr%p I'll go to KMart or WalMart during a not too busy time of day, use an electric cart and just kind of ride around and "window shop". Something I normally don't have the energy to do. Usually all I can manage is go in, get what I need and get out. My whole family had a blast at Disney's Expo when my BIL insisted that I rent a scooter for the day. It made things so much easier and I was able to have so much more fun that no one was self conscious. Jo 2005-10-13, Responding to Cindy... > I am in the beginning of sometimes I appreciate having > access to one at the department or grocery stores....but I [quoted text clipped - 3 lines] > defeat its purpose and probably do better without it... > Does that make sense... Yup. If you're up to using a trolly for support, then do so, but if you really need to give your body a rest, use a chair and ask for help if you don't have any with you. Many stores in the UK tend to send the new staff around with rollers if asked, and sometimes you can get a really helpful assistant. (Watch out for the over-enthusiastic helper though, as these can rapidly become a real nuicance.) The only way to figure these questions out is to "just do it", but leave more time that usual for "learning experiences" until you get the hang of how things work for you in your circumstances. Signature---- * Another squeaking wheel @ http://tinyurl.com/b28fq * Mike's (curious) Brain @ http://tinyurl.com/4872c - Have a nice day, it really does do you good! :) I've decided based on observation it's more "socially acceptable" to see a person get up and walk when using a scooter than a chair and so I'd feel less self-conscious with a scooter. that's why I'm looking at that option. But I have used wheelchairs and walked and when in pain the difference it makes in quality of life and ones ability to enjoy longer treks is worthy ANY look someone gives me. Wow...great posts, all. And Mike, thanks so much. I've decided to pursue the wheelchair. I'm also looking at universal design features to build into my house as a retrofit. I can't thank you all enough for your thoughtful answers. 2005-10-17, Responding to photog... > Wow...great posts, all. And Mike, thanks so much. > [quoted text clipped - 4 lines] > > I can't thank you all enough for your thoughtful answers. You're more than welcome. When making the "sign here" decisions, ALWAYS sleep on the the deal BEFORE commiting. You'll only likely get one shot at many options, so take your time and try to figure out where the pitfalls might be. Trust me, they're there. :( (And don't get pushed into anything with excuses or pressure!) Now go ask some questions on alt.support.wheelchairs Enjoy. :) Signature---- * Another squeaking wheel @ http://tinyurl.com/b28fq * Mike's (curious) Brain @ http://tinyurl.com/4872c - Have a nice day, it really does do you good! :) |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.