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wheel chairs

PostPosted: Wed Jun 04, 2008 11:12 am
by cmccarth
Sorry I have not been on this site for a while, but some posts I just have to comment.

I NEVER thought I might have to be in a wheel chair. I was for a little while and I stunk at it. (one arm worked better than the other). I also realized, that if you are in a wheel chair, people do not look at you. It is like you have this horrible contagious disease and eye contact might render them wheel chair bound too!!!!!

I dunno. I am just trying to deal with this TM. Not easy. It keeps throwing tough little things in to deal with. I have just swallowed "humble pie" and asked for SSI, Medicaide, all that. BTW I have always had BCBS insurance. This year they went up from $400.00 a month to $650.00. Yes I dropped it. I pay so much for insurance I can't afford health care!!!!!! ($2,000.00 deductable).

Cathy in NH

PostPosted: Fri Sep 12, 2008 4:40 am
by wvgreg
I need some advice, please. I contributed earlier in this thread...

Since then I have had a spinal fusion at L4-5 to relieve back and leg pain. My knees are totally arthritic and the ortho says they both need to be replaced when I'm ready. Since the spine surgery I need to use either two canes or a rollator at all times. I'm exhausted, fatigued and grumpy! My wife suggested I get out my chair and use it at work. I am reluctant. Part of me says this might be a good idea to preserve my energy for more important things than walking and keep my knees for awhile. Part of me says this is giving into the disease. I was in a chair as a teenager and hated it. How do I just show up one day in a chair? In the short time I've worked there I've gone from one cane to two canes to a rollator and now..... Any advice? Thanks.

PostPosted: Fri Sep 12, 2008 5:21 am
by Lynne
Over the last few years I've learned not to be concerned with what anyone else thinks, and to do what I have to do to get by. Some people are unable to understand how one day I can be walking around my house and yard with out any assistive devices, then have a bad day and have to use my wheel chair to move anywhere.

You talked about conserving energy for the important things in life. Have you read the Spoon Theory? You can find it at It has been mentioned numerous times on these posts since I have been a member, and I still find it useful in explaining how I feel to people who don't get it.

Re: What's it like being in a wheelchair?

PostPosted: Thu Sep 25, 2008 5:44 am
by wvgreg
Thanks for the tip on the Spoon Theory. I used it to try to explain TM to my wife, who is exceptionally healthy and does not understand how chronic illness feels. I hope she never does experience it herself. What is hardest for her, I think, is that I've had TM since long before we met and she's had to watch me decline a fair amount in recent years-something I never thought would happen. The docs in the late 60s and 70s said I would recover however much I would recover and then that would be that--no recurrence or further loss of abilities. Guess they were wrong. I have begun using a chair on the first floor of the house and at work 3 days a week, just to save my poor knees the pain of walking. So far, so good.

Re: What's it like being in a wheelchair?

PostPosted: Mon Jun 08, 2009 10:41 am
by Kewanee
To me being in a wheelchair is like...ahhhhh. It feels so wonderful to get the weight off and the effort. Of course if you can stand and walk a bit is different than being confined totally I'm sure, but it can be a great relief. Especially if it's powered.

Re: What's it like being in a wheelchair?

PostPosted: Tue Jun 09, 2009 5:52 am
by amg23
Hi guys.. I was in a wheelchair when i was first diagnosed. I was 17. Its been a year sense. At first i HATED it. My friends still tried to help me as much as i'd let them. I refuse to let them carry my books or push me to the elecator. I was way to idependent and stubborn. Still am. It took me about a month and a half to be able to walk long distances and i still had to use a walker or a cane. It SUCKED, i wanted to be back to the way i was, happy, playing sports, running around and chasing my little brother. Instead i was miserable. Yet my friends did everything in there power to make me happy. My best friend use to stand in lunch for me. She was and still is the sweetest girl in the world. I was lucky to have her. I still refuse half them time when she told me shed help me. I had to ride a bus by myself and they'd pull in to my driveway and id have to let them help me get out. Then id get out and make my mother get my walker.I lived i live in a trailer so it was hard to get in and out. When it first happened it took me about a half hour to get to the house. And when i was in the house i refuse to use the walker or cane. When i fell i wouldnt let my mother help me up. It would make her sad when i refuse help, i felt bad a bout it but i knew if i was helped i wouldnt get better. I fought harder when i was in physical therapy. They didnt have to push me i did it for them. It took me weeks but i made it that far. after months of excrutiating pain i could walk. Then i had problems with my legs. The muscle would get so tight that i had to sit down for hours before i could move. The doctor put me on medicine after medicine, now im still on muscle relaxers and they have to be changed again cause there not strong enough. I still have the spasims but there not as bad just in the morning.

Re: What's it like being in a wheelchair?

PostPosted: Fri Jun 12, 2009 4:23 am
by Tomislav
Hi every1. When I came back home and started to hang out with my friends and family and when i started going out from time to time It was like I got to heaven. I never had bad expirience about being around in wheelchair and mostly people ask how is it to be healthy and suddenly get sick and get bounded for wheelchair. Well its not shocking to me as it is to other people. I'm progressing good to get back on my legs. I hope I will be able to walk by the end of a summer and I have all the support I can get from my family and friends. And how I think about people that can walk: it's normal for humans to walk unless something terrible happens, and I am considered equal to other people by people surrounding me.

Re: What's it like being in a wheelchair?

PostPosted: Mon Oct 19, 2009 3:09 pm
by yadman
Hey all, this is my first post here. Have just been reading thru the rest of the forum but felt compelled to post in this topic.

I was a wheelchair user for a few months and I found as well at first that people, for the most part, would ignore me. Many who did deign to speak to me would speak down to me (physically as well as metaphorically). There were also lots of times I nearly crashed into people when they couldn't (or didn't want to?) see me so they walked straight across my path.

I have since progressed a bit and can get out and about a little without any walking aids at all (I have a walking stick for bad days) but still get very fatigued and can sometimes lose balance. I've actually found that people are now less sympathetic and understanding towards me. I have stumbled several times due to balance and some of the comments I've heard people say have been downright nasty suggesting that I'm drunk or on drugs "at this time of day". At first I pointed out to people that I did, in fact, have a disability only oe person actually apologised. Others would either tut or shrug and walk away and I actually had one person blatantly call me a liar stating that her mother was disabled (ooh how I hate it when people label each other) and that she could clearly see that I wasn't disabled but obviously "had something wrong with me". I'm just glad I have thick skin and I can laugh these ignorant comments off but I truly despair for people who may be more sensitive and may take things like this to heart.

Re: What's it like being in a wheelchair?

PostPosted: Sat Aug 07, 2010 11:21 pm
by lizzieboo
I was in a wheelchair for a few months during my recovery while i was in rehab. It wasnt all too bad but one thing that did annoy me was when people constantly tried treating me like an infant. One nurse even tried strapping me in with the seat belt "so i wouldnt fall out" i simply pushed her hands away in a fit. i felt a little bad for being rude but she didnt seem to understand that i did not want to be strapped in, i think i could manage to not fall out of a chair. You also have to have a lot of upper body strength, i would get tired of trying to wheel myself, so i found it easier to ride around the building backwards. I tried to make the best out of my situation. actually had some fun, given the circumstance. I definitely have a great respect for people who are confined to a wheel chair however. Its not easy getting around in a tight/ cluttered room.

Re: What's it like being in a wheelchair?

PostPosted: Tue Sep 14, 2010 12:12 pm
by melc2446
I have been in the chair since 1996, and TM took me within 48 hours, in that i went to bed able bodied, but i awoke the next day as a paraplegic.

However, at first, i resented the chair, and hated even just looking at it first thing in the morning, in that i saw the chair as the enemy, but in 2005 this changed, as a result of undertaking the Douglas Bader flying scholarship for the disabled, and this really changed my outlook on life, in that i saw the chair as a tool to aid my independence.

Anyway since the flying, i have now done a degree in business studies, i do lots of voluntarily work, and i participate in various wheelchair sports, such as wheelchair tennis, and i am now in the stage of getting back to work

Anyway, in short, i hope this shows that life does not stop after TM, but please do not think that i am being arrogant, i am just determined (being ex forces i suppose has something to do with it) that i will get my life back, but i also understand that there are others who are more severely affected by TM, and i suppose i was lucky that my lesion was L4/L5, and i was left as a scabby. - ie sensory incomplete, but still have the usual problems with the bowels and bladder, and of course the pain, and spasms; anyhow, hope this of some use

Herts, UK