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Thread: F#$% my life?

  1. #11
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    was jokingggggggggg haha

  2. #12
    Distinguished Community Member tic chick's Avatar
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    welcome to braintalk, missx !

    well.

    i can hear you are angry and i think that's good...up to a point. i always thought that depression was anger turned inward. as long as you use your anger to continue to do things for yourself, to help yourself, to keep yourself going, it's ok. when it starts being destructive, like breaking all the mirrors in your house (did it really feel all that great doing it?), you have to step back and see if you're hurting yourself more than helping.

    i don't know what it's like to have moebius syndrome. you don't know what it's like to have tourette syndrome, which has been my disease du jour for the last 48 years or so. we both don't know what it's like to have multiple sclerosis, or have our parents die in a car crash or grow up without arms or legs. i don't believe one person comes into this world or leaves it without experiencing some kind of mental or physical turmoil at some point in their lives. something different for every one. we don't know how they deal with it...some people can deal with a lot, others fold at the smallest slight.

    tourette syndrome is a tic disorder. you feel like you have to make certain sounds or do certain gestures or you will go nuts if you don't. add to that all the little other disorders that can go along with ts...ocd, adhd, panic disorders, anxiety...etc. your life is a genetic throw of the dice...you don't know what you have until the dice stop rolling. i do know what it's like to have people stare at you, people imitate you, people laugh at you...mostly younger people who haven't met their obstacle in life yet. usually the older people get, the more they accept other's for who they are because they've already faced some obstacles in their own live's. i used to divide people up into groups...people who know i have ts, people who don't know and don't care, people i can tic in front of, people i don't care how much i tic in front of because i'll never see them again, so why bother trying to hide it?, people who love me no matter what i do, people who amazingly don't even notice my tics after a while because of my sparkling personality.

    well. what are you going to do if you don't try and keep yourself positive everyday? i think everyone has to find something to keep them going through life. it might be one thing when you're in your 20's, another thing when you're in your 50's...but it has to be something that makes your life meaningful because that's whose life you're leading...your's. stinking thinking will not get you thru the day or thru your life. positive....stinking...positive....stinking. weigh them. see which one is easier to carry.

    just my humble opinion, but i think part of the prob is that you're still only 22. i remember going thru the same kind of crisis when i was that age...worried about not only my disease and it's impact on my future, but wtf was my future going to be? you seem intelligent, you write well. are you in college? they can't discriminate against you getting an education cause you have moebius. i would study something where your competency is more of an advantage than whether you can smile or not...think of something like radiologist vs. salesperson. choose something that you can find a job no matter what part of the country you live in.

    use your anger to learn all you can about your disease or syndrome, if you like to call it that. get a doctor you trust and that you can be completely honest and yourself with. ask yourself some hard questions, "do i want to have any kind of surgery that will make me feel better about how i look?" "am i doing it for me or for others?" only you can honestly answer those questions.

    and this is something i believe is the most important thing you can do. you have to find some peace in your life. something that makes you breathe evenly, that clears your mind, that bolsters your soul, that gives you energy. i don't know what that is for you. some people do yoga, some people find it in spirituality some people find it in music , some in gardening. you underestimate being postive and being kind to yourself. what if you were the friend of a person who had a life altering illness? wouldn't you be kind to them, try and be positive with them?

    you deserve the same thing from yourself!

    i am a great believer in the "POWER OF TODAY".

    it's not a mystical religion or a cult. it's a way of living. to me it means the past is the past. it's gone. we can only learn from it, we can't change it. there is no future...what we think is the future is just all of our today's added up. there is only one constant in this world and that is today. today we can deal with sorrow, but just today's sorrow. today we can get through our pain, but just today's pain. today we can have happiness, but just today's happiness and we have to build a foundation to sustain that through the rest of our today's.

    i would recommend talk therapy with someone who know's about dealing with grief. i think you are dealing with the loss of what you had imagined your life would be and you're in the anger state that it happened to you. you have to move past this anger because your ultimate goal (i hope), is peace and acceptance of yourself. just who you are today.

    if i had known at age 22 what i would go through, what i would learn, what i would become...i would STILL be f4cking excited about my life...cause it's MY LIFE! oh geez, i'm beginning to phrase a bon jovi song...

    i know this forum on moebius doesn't have many member's. look around at the other forum's. in the emotional support forum, we all have different probs, yet we can all support each other because we know what it's like to face everyday with something hanging over our head's and we all have a mutual respect for these problem's, no matter what they are from day to day.

    i hope you come back...i hope you research the net and the agencies close to you and see what kind of support you can get...i hope you learn more about your disease and what option's you have...

    i hope you find peace and acceptance for yourself.

    jeannie
    Last edited by tic chick; 04-05-2012 at 07:25 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "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

  3. #13
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    Thumbs up I *know* you were joking!!...Lol

    I'm not quite, *that*, daft!...Lol Yet!!...lmao
    Tons Of Hugzzzzz,

    Phyllis

  4. #14
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    thanks for the reply tic chick, yes I do aim to find peace with in myself but I have a weird feeling that I will always have some sort of disappointment with in which I think is normal. Yes that sounds like a very good idea going to someone who works with grief. I agree with the fact that I'm angry over my life not being "normal" like "others" I just find it hard for me because Im a very secretive person anyway so to talk to people about this that have no idea, it will be very hard I almost feel like that they have no right to sit there and pretend they happen to understand what I live with, I agree that everyone has their own problems but It's still not mine. Where is everyone with moebius? why is there noone I can talk to who has it? it's quite frustrating really

  5. #15
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    and as far as reading up and finding out as much as I can about this syndrome, I'm not to keen or interested in understanding everything about it. It makes me angry just reading about it, I'm just very very angry at this point in time, When life happens to run FAIRLY ( yeah right ) or smoother, when I'm happier, That's when I'll start to "care" I guess

  6. #16
    Distinguished Community Member tic chick's Avatar
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    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.
    Here's to good women. May we know them. May we be them. May we raise them.
    "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

  7. #17
    Distinguished Community Member Beader's Avatar
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    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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    Sent you a PM!

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