What's it like being in a wheelchair?

discuss symptoms related to arms, legs, torso and neck; solutions and what works for you

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What's it like being in a wheelchair?

Postby Mary » Sat Sep 10, 2005 8:20 pm

I have TM and MS. I currently walk with a cane (when I'm not too stubborn). I know that as my disease progresses, I'll be in a wheelchair. Hopefully, that won't happen for a while.

In the meantime, I'm writing fiction stories that seem to take on a lot of my own experiences, except that my main character is in a wheelchair. I need to know what he thinks about it, about people who walk, etc. Anything at all you can tell me would help.

Thanks!
Mary
 
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Postby Rob » Mon Sep 12, 2005 2:11 pm

Mary,

You ask what's it like to be in a wheelchair. I was wheelchair bound for the first year of my recovery. Most people don't even see you and the rest don't what to look at you. You have to be careful not to be run over. The worst is when some old woman at the mall says " oh how lucky you are to be able to sit down." I couldn't believe my ears the first time it happened. The next time I replied "that is about the most insensitive thing you can say to a disabled person in a wheelchair, Oh how lucky you are to be able to walk."

Rob
I got TM on March 24th, 2002. It took me in 48 hours and left me paralyzed to the chest. Came home in a wheelchair after a 2 month hospital stay. I can walk now with the help of a cane and have the usual residuals.
Rob
 
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Postby Mary » Mon Sep 12, 2005 6:29 pm

Hi Rob,
Thanks for sharing. I can't imagine someone being that insensitive, but on the other hand it doesn't surprise me. That's why I'm writing these stories - because I want to help normal people understand what it's like to have this.
Have you ever read the Lincoln Rhyme series? He's in a wheelchair, too. I think it's the only other series where the main character is.
I guess what's most frustrating to me is that I stagger. Sometimes people look at me with disgust - like I'm drunk. I get so mad, but I just don't have the energy to deal with them.
Take care,
Mary
Mary
 
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WHEELCHAIR

Postby SUNNY » Mon Sep 12, 2005 6:54 pm

Hi Mary, one thing that is frustrating being in a wheelchair is that it takes much longer to get to places and there are many places that because of the chair and accessibility you cannot go anymore. I am not in a wheelchair anymore but i have it put away upstairs. ANOTHER THING THAT WAS ANNOYING, FOR SOME STRANGE REASON AT SOME WHEELCHAIR ACCESSIBLE DOORS WHERE YOU HAVE TO PRESS THE BUTTON TO OPEN IT, IT IS SOMEWHAT IMPOSSIBLE FOR THE PERSON IN THE WHEELCHAIR TO MANEUVER THE CHAIR POSITION TO REACH THAT BUTTON!! AND UNLESS YOU HAVE VERY STRONG ARMS THE RAMPS ARE A NO GO !!AND I HATE RELYING ON PEOPLE!!! It is hard to explain but i would like to see people who plan all of these things try to be out in a wheelchair for a couple days so they can see what happens, like a couple town/city mayors. I NOW HAVE CERTAIN PEOPLE I GO OUT WITH-AS I NEED A WALKER SOMETIMES AND WE KNOW WHAT STORES WE CAN ENTER EASILY AND NOT BE IN THE WAY. And some people are very rude---.
SUNNY
 

Postby josh » Mon Sep 12, 2005 7:18 pm

i'm in a chair. been sitting for 19 months now. how is it? well at first it sucks. facing the reality of the foreseeable future in a chair, i cried so much. i was afraid of pressure sores, having to do weight shifts all the time. having to deal with my bowel and bladder incontinence. after a few months though, i was like screw it, this is who i am. Im the same person, just need wheels to get around. i dont mind people staring anymore, heck, dogs, cats and even birds stare at me. im a c6-7, fairly complete quad. good arms, poor hands. being in a chair is not the end of the world. sure i've had some people who just dont get it, but why waste my time on them. If you want more insight, check out Murderball, a documentary about quads in chairs, its as real as it gets. go to www.murderballmovie.com and see if its playing near you. i play murderball/quadrugby and it has really given me so much its hard to capture it in words.
josh
 

Postby Mary » Mon Sep 19, 2005 6:36 pm

Thanks for your feedback. Josh - I haven't seen the movie, but I did see one of the guys in it getting a tattoo on Miami Ink. They showed some excerpts and it looks pretty intense. It's great that you're playing. Sunny - I had to roll my eyes when I read about the placement of the buttons. Isn't that always the case - they really should put those designers in chairs and make them try to get in the doors! And Rob - I was thinking about what that lady said to you and I realized people say something similar to me: "Oh, you're so lucky to be able to stay home and sleep whenever you want to." Want to?!? I hate having to sleep so much! I wish I had half the energy I used to.
Mary
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Postby Marybeth » Thu Sep 22, 2005 4:09 pm

I remember the first time my mom was in the hospital and two staff members from the hospital entered the elevator and started whining about taking the stairs and how they should but are lazy. I couldn't believe what I was hearing, now they could not have known my mother's situation nor will she always be so sensitive to these discussions.. but she simply said please be grateful that you can walk up those stairs and are not forced to take this elevator like I am.
Marybeth
 
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Postby Tim S. » Fri Sep 23, 2005 9:50 am

Mary,

I've been in a wheelchair since my onset of TM 3 1/2 years ago. Yes, there are some people who treat me as invisible but there are many more who are willing to help when needed. When I was first in PT, my therapist told me that there were three words I needed to learn to use and not be embarassed by. Those three words are "ASK FOR HELP'. Once I learned to use these words life became muck easier.

There are still so many places where being in a wheelchair is difficult. Some department stores cram so much merchandise in them that I can't get in between the display racks. Negotiating sidewalks can be impossible when cars park in front of the curb cutouts or when I discover there are no curb cutouts at all and am forced into the street. Many businesses and offices do not have automatic doors and I have to sit outside until someone comes along to open the doors for me and then sit inside until someone comes along to let me out. Restrooms are also a challenge. Finding handicapped restrooms that can accomadate a wheelchair is always on my mind when I'm out.

I have read the Lincoln Rhymes novels and found them very interesting. But I just finished reading a book called
MIDNIGHT CLUB' by James Patterson where the main character is also in a wheelchair. Unfortunately this guy seems to get in and out of places so easy that I think the Author has forgotten that the character is in a wheelchair. It's just not realistic.

Well, that's enough for now. Take care.

Tim
Tim S.
 

Postby confused » Fri Sep 23, 2005 12:41 pm

Tim, my heart goes out to you trying to shop. When my twins were little, I couldn't go anywhere in a store because of a tandem stroller, which is usually narrower than a wheelchair. I used to get so ticked off at how stores "arrange" (for lack of a better word) their merchandise. And I'd wonder how in the heck could anybody in a wheelchair possibly shop. I hope this myelitis doesn't attack again to the point where I'm in a wheelchair, cuz I could definitely imagine myself "accidentally" toppling over displays in stores! Honest, I really don't know how you negotiate through most stores. It must be a pain ( in the ......)!

Since this subject has come up, I have to tell you my husband's experience some time ago. He had taken my twins (4 at the time) and my youngest daughter ( 1 1/2, just started potty training) to the mall for a few things. Well, the little one had to "go" and when you're with three wee ones, ya need to keep them all together. So....my hubby took them into the bathroom into the handicapped stall which is larger and can accomodate all three monsters and himself. When he walked out of the stall there were 3 gentleman in wheelchairs waiting for that particular stall. :oops: He felt awful and couldn't believe how many WC were waiting! I had to laugh when he told me the story!

Take care.
confused
 
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Wheelchair

Postby AngelaD » Mon Oct 03, 2005 11:24 pm

Hi Mary,

I'm really interested that you are writing a book - I have been trying to do the same thing as it would be the ideal way for me to make a living these days!

I have only been in a wheelchair temporarily when symptoms were particularly bad. You need a reliable pusher who won't leave you in the lurch, or in the middle of corridors blocking other people's path...

I too remember how strange it was that people didn't look me in the eye. You take it for granted when you are at standing level - in a wheelchair people look over your head. When you meet other people in wheeelchairs, however, I found there was an instant and strong rapport.

The rapport / connection thing is an interesting one. Although not normally in a wheelchair, I do spend most of my time sitting down. An awful lot of socialising is done standing up, at parties, pubs, coffee breaks at work, etc. I feel that I don't always connect with people as well as I might because I'm not at their eye level...

I wish you all the best with the book - please let me know how it's progressing

Angela
AngelaD
 

Postby Guest » Sat Oct 29, 2005 9:42 am

I've been a complete paraplegic for twenty years. When you factor aging in, you realize how much being in a wheelchair really sucks ... and how things would have been so much easier IF ... and how they will never be easy because now twenty years have gone by and the cure eluded you, let alone equality.
Guest
 

Postby Josh » Mon Jan 02, 2006 9:00 am

I think we should keep this topic on the forefront. As the poll in general discussion suggests, a full third of us are still in chairs. We need to continue to discuss issues that being in a wheelchair present. But above all, we need to give our input as to how life can be lived to its fullest in a chair. I'm just a "rookie" in my chair, been in it for about 2 years now, but have found wheelchair sports to be incredibly rewarding. I play wheelchair rugby and it's absolutley great. There are all kinds of sport activities we can get into, from riding handcycles to scuba diving. I want to see about skiing, as I had skied for 25 years before TM hit. Again, lets hear from you who are in chairs. Let our voice be heard. We might not have the "encouraging" stories of recovery most people who initially visit this site want to hear, but we can be encourage eachother, and make people see that being in a chair isn't the end of the world!
Josh
 

pushing a chair

Postby Jan guest » Tue Jan 17, 2006 1:58 pm

I have been in a wheelchair for two and a half years now. At first I found it very frustrating because everything I do seems to take longer and there are so many things that are out of reach. I was both afraid and embarassed for the first month or so. I just felt humiliated that the lower half of me did not function. It is still strange to realize that more that two third of my life will be this way. But I find that mostly I just accept it since I can't change it. I live in a friendly town and have not found that people treat me as if I do not exist. However people often call me sweetheart, dear etc. The other day in a public restroom an older woman told me how inspirational it was to see someone so "crippled" just getting on with life and how it really made her apreciate what she has. :roll: What can I say? She clearly meant to be nice. I wish that I could still walk, being in a wheelchiar does limit my options as far as where I go, but I am still me and I have never had anyone be unkind to me because I am in a wheelchair. Most people seem to want to go out of thier way to be kind. Because I live in a small town being in a wheelchair means that I am always remembered because of it, so I have no annonimity.
Jan guest
 

Postby Mary » Tue Feb 14, 2006 2:39 pm

I did something last week that I couldn't believe. I was in the state capitol for MS Advocacy day. I had been there for hours, and my fatigue was really setting in. But I had to stand outside the offices (with lobbyists!) to see my rep, because otherwise you lose your turn, and there were no chairs there. One of the other people who was there was in a wheelchair, and I said "You're lucky to be able to sit down." Geez! I can't believe I actually said that... I feel terrible.
-Mary
Mary
 
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Postby Siobhan » Wed Feb 15, 2006 3:40 am

I am not wheelchair bound but it's pretty impossible for me to walk more than 20 metres without falling so I use a wheelchair when I am out. The other day I was in the supermarket in the cue and a man turned round and said to me "Are you comfortable there?" I laughed it off, but I thought to myself no I'm really not comfortable, I've been sitting in this thing for a couple of hours, my left leg is completely numb I have pins and needles down both of my legs and my lower back feels like if I move it's going to break in half, my arms are killing me from wheeling myself round the supermarket, I'm quite annoyed at the amount of people that have got in my way and also fairly annoyed at the amount of people that have come up to me and spoke to me like I'm a child asking me if I can reach, my hands have sores on them and I have lost 3 finger nails, (that I was trying to grow so they could be manicured), when they got stuck in the spokes. Am I comfortable, I don't think so....lol
Siobhan
 
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