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Thread: family treating you differently after SCI

  1. #11

    re. family treating me different


    I have RSD(chronic pain disorder) and FTD(a fatal degenerative brain disease)

    My family treats me different also. My hubby is out of work right now and we have been staying with various family members. I am able to walk for a very short distance, my husband helps me with all activities of daily living. I am in pain all of the time and have some major problems due to my FTD although most of my family doesn't notice these problems because my husband takes care of so many things and many of them are only visable when I am under stress and I have been trying to keep my stress level as low as possible by not visiting certain family members as much.

    My parents go back and forth regarding the way they treat me. I was sick as a child and they always treated me like I was handicapped even after I got better. i.e. I wanted to go to medical school and they said, you don't have the constitution to do that.

    So they are still treating me like that but now that they are old and having illnesses, I feel like my mother is competing with me for illness attention. Also, I am having the reverse problem of your problem with my parents. Despite the fact I am dying, I am in the latter stages of my pain disorder, have extensively researched my illnesses and have sought out and see the best doctors in the country, and have a loving husband who is a wonderful caregiver they repeatedly tell everyone that my husband isn't taking good care of me, I need to be more physically active and I need physical therapy, and I need to be taken off all my pain medications because they make me sleepy.
    I tried to explain to them that I have had physical therapy in the past and my pain management doctor does not think tradtional physical therapy will help me. He wrote a prescription for rehab therapy because I am deconditioned but we had to move and although my husband had tried to get my current doctor to give us a prescription for in home rehab therapy, the coordinator in his office contacted us and told us they cannot set me up with in home therapy and he won't write me a prescription for home health physical or rehab therapy. Also, we have no permanent home right now and they insisted that we leave when they decided to move into a retirement community although they have an empty house that hasn't been sold.
    They also don't realize that what they call sleepiness is actually a less responsive state caused by my brain degeneration.

    On the other hand, my daughter did not even invite me to my grandson's birthday party because she said she knew I was too sick to go and she has never let me hold my grandchild. But, she also tells everyone that I am too emotionally dependent on my husband, he makes all the decisions for me, I could be much more active but he pampers me and that I am hooked on pain medication. My son who is younger is really confused about what the situation really is.

    It is very suprising how family members can act.

  2. #12
    Quote Originally Posted by mermaid View Post
    It is very suprising how family members can act.
    This just sux. OTOH, if you've found a spouse that loves you and supports you, then that's really cool.


  3. #13
    "you always hurt the ones you love"
    I don't remember who said that, but it's so true!

  4. #14
    Yeah, I hate how they treat me too. But I know that they're doing it with the best intentions, most people don't know how to treat someone with an injury like this. So just cut them some slack.

    I guess it's just a part of the package we get.

  5. #15
    Senior Member GoTWHeeLs's Avatar
    Join Date
    Jul 2006
    Oklahoma City
    Well said Neo. It just freaks people out. Family too.
    Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

    My Myspace

  6. #16
    Eh? Made up children?

    Figures...Parents get cut no slack LOL, sci or no.

    In my experience, the best thing is to have those that baby ya around those that don't, i.e. other SCI's. I've seen a lot of parents get their eyes opened by hanging around some rowdy sci's that give no quarter.

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