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Really glad you found it useful :o)
Good to know I'm not the only one too! Think our fears are natural, just finding good ways to deal with them is not easy! Sometimes find it helps to put myself in the other person's shoes and try to imagine how I would feel about me then (hope that makes sense).
I don't know much about adjusting to life in a wheelchair, but I've heard a few people (with other disorders) say that once they made the move they wondered why they hadn't done it earlier! Seems like it can open up a whole load of new possibilities and increase Independence. And I'm pretty sure that people in wheelchairs can have fulfilling, loving relationships and a lot of fun too! Having said that, I doubt many people would say it's an easy adjustment to make.
Think that with best will in the world, it's very hard not to have preconceptions about how things will be in the future (sometimes negative, sometimes positive, often unrealistic in my case at least!), but perspectives change once you actually experience a thing. Right now I think (among other things) a wheelchair would emphasise the loss of something I had assumed I would have till old age (my physical health/mobility) and challenge my assumptions about what constitutes 'quality of life' and that would be hard to swallow to say the least, but seeing other people get on and do it and thrive certainly helps.
For me, as with so many things, a huge part of it is 'how I (and others) feel/think about my situation/being in a wheelchair/having the disorder', not 'my situation/being in a wheelchair/having the disorder' in itself as such.
I have the feeling that I'm waffling and totally oversimplifying a very complex emotional and practical issue and I really don't feel qualified to talk about it! I think to get an idea of what a specific thing is like and the best ways of dealing with it it's probably a good idea to speak to as many people as possible who have had similar experiences (and maybe their partners too) and I guess ultimately try it out!
Best wishes,
Bex
Bex,I'm not the only one!! Yes I have a boyfriend but I feel that if I am in a wheelchair, it would change everything! including him, and i know that i do not for a fact know this but i am paranoid because i do not want to be a burden on anyone. i feel like i wont be able to go out and have fun so that worries me and because if this fear, i feel like its taken a toll on my relationship. Your words are inspiring and couldn't have come at a better time. (thanks)You have very good points and i appreciate your honesty. thanks again,Miriam
From: Christina Ray <okchristinabelle@...>
To: dysferlin@yahoogroups.com
Sent: Tuesday, April 21, 2009 6:50:42 PM
Subject: [dysferlin] What to Say, Shopping etc.
Hello everyone. I haven't posted in a while and I always get nervous when I do. I guess because I'm afraid I can't convey what I would like to. With that in mind I have a couple of things to comment on.
Louise had commented on how great this group is and I have to second that motion. It's comforting to know that other people are going thru the same thing. I feel like I have gotten more information about this condition from this group than from all the other sites I have come across.
What to say to folks that ask...
I can't recall any strangers asking about my condition when I'm just out and about. I was in the hospital last month for a hystorectomy, and that was the first time I have been around folks that didn't know what was going on with me. I found myself wanting to tell them all about what's happened to me in the last two years. I live in a pretty small town in Southeast Oklahoma and I see that my Friends and "Friends" don't really know what to say. My best friend told me not to long ago that it just freaks her out and she hasn't been around much because she doesn't know what to do. I was up running around, taking care of my dad, who has MS, hiking and just out and about all the time two years ago. Now I am unable to stand by myself and am in a wheelchair all the time. I have pretty much gotten over the whole thing, but I don't think my friends have.
On a more positive note...I went shopping for clothes today for the first time since being in a wheelchair. You have to look at clothing much differently when you shop to be sitting down....It was a bit of a chore, but my wonderful boyfriend helped me and I got a few new outfits.
One last thing. I mentioned a while back that you never see people in wheelchairs on game shows. I was watching the Price is Right the other day and lo and behold....they called a woman in a wheelchair.
I'm going to do the genetic testing with the Jain Foundation as soon as I can get everything coordinated.
Okay, that's all I have to comment on in this posting. Ya'll take care.
Christina
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