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Thread: Is this normal ?

  1. #1
    Senior Member lunasicc42's Avatar
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    Is this normal ?

    I am simply not the type of person to whine or feel sorry for myself much. But more and more, I am becoming that way. At heart and when I was AB, i did almost anything I wanted, when I wanted and as a result had some run-ins with law and jail. Not necessarily a bad person but almost fully independent.
    Now more and more I am beginning to feel sorry for myself and not hateful or wish I could harm myself, I am just sort of blahzay-blah. I mean I am constantly told what to eat and when to eat. When I can have a beer, when I have to wake up, when I go to sleep, the bowel program and laying on my side for hours sucks, almost constant suctioning... Basically I just feel like a burden, which is totally not me. I have no friends my age anymore really, my parents friends have become my friends... And my family (god bless them), take very good care of me but also totally control me... Are these just necessary evils?
    I mean I am a high quad and dependent for most everything... Living on my own is not an option
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  2. #2
    If living on your own isn't an option, is arranging for non-family caregivers an option?

    About the control issues, I think that is something you need to address right away. When you are a high quad and dependent on others, there is always going to be an element of compromise necessary when it comes to things like deciding when to eat, etc. However there is a big difference between compromising and allowing others to exert control over you. It took me several years before I was in a position to have my care done completely by non-family. And it was very difficult to get there, I will admit. But it was the best for everybody involved. I still depend on my family for emergencies and to help when I am traveling, etc. But cutting them out of my day to day caregiving really was necessary, I felt, for our relationship dynamics.

    If it isn't possible for you to change your caregiving situation, I think you really need to look at ways to establish boundaries so that you are maintaining an element of control over your own life--which it sounds like you may not have right now.

    About making friends, can you get out of the house and get involved in something like taking a class, volunteering, or joining a club? As a high quad it isn't always easy, I know. But it really might help if you can find a way to get out and be as active as you can.
    Last edited by orangejello; 08-03-2011 at 05:32 PM. Reason: grammar

  3. #3
    Senior Member lunasicc42's Avatar
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    thanks. Some good ideas, I think I am going to start off by asking my day caregiver to take me out more... I stay at home real lot. I guess that is my own fault really.
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

  4. #4
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    honestly, you really shouldnt be told when you can have a beer or not. or what to eat (unless you have some sort of dietary restrictions like diabetes or allergies)

    i second trying to find non family caregivers and just trying to go out and be more involved in your community, if you can.
    "Smells like death in a bucket of chicken!"
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