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Thread: Wondering if any of you have felt this way?

  1. #11
    Senior Member Sarafino's Avatar
    Join Date
    Dec 2010
    SW Colorado---chair user from nerve disorder
    Quote Originally Posted by ~Lin View Post
    Reaching out online helps. I have lots of disabled friends online, but not in person. A lot of that though is inability to get out and about and do activities where others go to meet people. In fact this is really lonely for lack of ab friends as well! I don't know what I'd do without the internet.

    I think a progressive disease is a different kind of hell in how people don't understand. Even those closest to you can have trouble understanding that what you performed just fine last year you can't today, etc.
    I am still trying this, too, guess i need to make the leap to Skype. I like forums but this is really the only one I come to regularly, even though I don't have SCI. In real life the few disabled people I have gotten to spend any time with were SCI people, and they were super cool, so I guess in a way i hope to meet more like them. Even they don't get the degenerative aspects of this sort of disorder, though. It is a special kind of hell for certain.

  2. #12
    Senior Member wheeliecoach's Avatar
    Join Date
    Dec 2005
    East Haven, CT
    I have a progressive brain and spinal cord disease, and I felt that way for a long time. I decided to try and be happy with me, so I got involved in sports and other things that made me happy. I then met my husband at one of these events. We have been married for 5 years now. The saying of it will happen when you least expect it happened for me. He has a spinal cord injury (T7) so it was nice to have someone who understood what I was going through. It happened for me, so who is to say it will not happen for you?
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  3. #13
    Senior Member ~Lin's Avatar
    Join Date
    Nov 2011
    Indianapolis, IN
    I don't do Skype. I get really anxious with the video, I have a hard time talking on the phone as well. What worked for me was messengers, aim though now I use the Facebook one because of friends on that but not aim. I have a hard time making friends anyway due to aspergers, it just doesn't come naturally. I don't know how to make friends, the ones I have mostly just kind of happened. One time I just flat out said to a person I'd met online and then got together in person that I'd been living in the area for a while and didn't have friends so if she wanted to get together again that would be great. It's really hard meeting people with a disability, and even more so others with disability in person. I always made most of my friends through horses and the barn so I've really been pretty lonely since I had to sell them and then later stopping riding. Not to mention the hell of being away from the horses! People say to join wheelchair sports, but with my disability I don't know of any I can do. I'm in a wheelchair but my upper body is too messed up plus I have to protect what I've got with the progression. So I can't do basketball, tennis, etc. Are their groups for biking? That seems more solitary. And I don't have the money for a bike, but some day I'd like to get one of those recumbent trikes that allows both foot and arm pedaling. I need knee surgery first but then I can try, and with sharing the load I think I might be able to do it.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  4. #14
    Senior Member
    Join Date
    Aug 2012
    You are NOT broken. You are a human being. There are so many things working on you, I guarantee, you would not be able to count to the number of how many things ARE working. Think positive. If you cannot do this, you better start to. I can no longer hear on top of not walking and have not driven a car since 2002. I still think I can do a lot about all of this. The only thing I question/doubt is going back to work.

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