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F#$% my life?

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    #16
    hey missx!

    i do understand your desire to have someone with moebius to talk to here. i saw the only other post was from sean, several months ago. have you read the archives of this forum? there is a section at the top of the forum threads that says "moebius archives" or something close to that. when you click on that link, it'll take you back to the archived posts that were this forum before we changed to a new forum program. maybe reading that might help.

    i was a secretive person also, sometimes i still think i am. i held my problems inside. sometimes i thought i would burst from all the crap i carried around in me. when i went counseling, i put my trust into my counselor and just told her honestly what i felt. i think it's important to be honest with what your feelings are and i can see that you have a good sense of self because you're able to identify your feelings. i always call feelings, "the weather in my soul".

    do you feel like no one will understand you just because you have a certain disease? do you think of yourself as a moebius syndrome person or as a person with moebius syndrome? i think it's important that when we think about ourselves, we don't emphasize our disease state, we emphasize our human state. you are a person first, the fact that you have moebius syndrome shouldn't define you. it's hard to say exactly what i mean, but you are NOT a disease! you are a PERSON with a disease!

    i get the feeling from your words that you expect little undersatnding from people, or you expect fake understanding...you don't believe people are going to treat you right and that makes it hard to trust them. i think that even though people here have different problems, it's not the problems that make us different that we focus on, it's the feelings of "being odd", "being weird", having no one to talk to who really understands us, that are all common feelings no matter what kind of physical or mental probs we have.

    yes you are a unique individual with a unique disease, but everyone is unique. when we focus on how we are all the same, how we all have the same kinds of feelings and insecurities, i think we feel less "odd" and more like everyone else. i think we all are more alike than we are different.

    i'm glad you came back.

    jeannie

    i can understand not wanting to know everything about your disease, cause it just does make you angry. i know when i read about ts it makes me tic more. but, i feel at some point, it's like finding out about your enemy, the more you know about them, the easier it is to find a way to fight and win over them. just my opinion.
    WE ARE BT!
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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      #17
      The other thing about folks here on BT is that none of us can actually "see" the other person, we can only "hear" what you're posting & read btw/ the lines. The bottom line is that you don't seem any different from any other poster who's here b/c of their illness. You look exactly the same to us. We all look exactly the same.
      Sher
      My Life Menu: CFS probably since birth, full flavored since the 80s, with Fibromyalgia, Major Depression with a side order of Anxiety and Agoraphobia sauce, Restless Leg Syndrome with spicy Other Sleep Disorders, 11 Eye Surgeries, a generous helping of Gut Problems

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        #18
        Sent you a PM!

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