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F#$% my life?

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    F#$% my life?

    Ok so this is going to be a very emo post I am sorry if anyone gets upset reading this it's not my intention but I just feel like I'm so f4cking alone I don't know who else to talk to that won't just pretend they understand so who better to cry to then people who atcually f4king know what it feels like right ???

    with Moebius syndrome for me, I feel like my life is constantly full of lows and hardly ever any highs unless I convince myself that it's ok. Let's be real, it's not f4king OK its not even close to being ok? i feel like a freak of nature, im 22 this year and mentally I feel like a f4king 80 year old. I'm so exhausted with having to live in my own skin and having to watch day after day after f4king day at peoples expressions at the way people talk to me at the way people mock me, ignore me, leave me out of sh1t, pretend I don't exist. I thought I was over this, I thought that I had moved on with life. But realistically nothing wil ever f4king change I will always be this.

    I just feel so f4king depressed all the time now. I cant stand it, I feel so disgusting, I feel like life is so unfair why was Ithat person who ended up being born like this??? its so unfair. I hate it. I hate it so bad I could scream and f4king burn the whole world down. Everytime people keep saying its ok and being positive I feel even more angry, I feel so angry with the fact that I have to keep positive about life just to be able to keep waking up every morning. I can't sleep, I can't eat, I'm constantly f4cking thinking about life, about everything I can't stop thinking. I'm going crazy, every day I feel more alone.

    I think the fact that I do have a very attractive look makes it even worse. How can i have the "whole package" and be missing the very one thing that every person has just to social/ to be human. F4king expression? where is my expression? where is it? HOW IS IT MISSING? HOW DOES THIS SH1T JUST HAPPEN? IT DOESNT MAKE SENSE AND I CANT BELIEVE THERE IS NOTHING TO FIX THIS?!??! I know that there are lots of other people out there that have it so far off then me and I am very lucky that I have a few good friends and a family that loves me, but I just can't stand being me. I'm sorry If I make them all upset but I f4cking hate looking in the reflection everyday and seeing nothing, seeing blank. Because I feel blank. I don't want to talk to anyone anymore, I cant talk to them face to face I feel so ashamed and embarresed by something I cant help so i just pretend like i dont exsist and hopefully nobody will aknowlage me. what kind of f4king life is this? to feel like that.

    I smashed all the mirrors in my house today, I lost it I couldnt stand it, i dont want to see anything that reminds me of the freak I am. Im abusing myself mentally im falling apart, and it makes me upset that i have nothing on my face that expresses how upset I am. I am a very expressive person at heart, and taking away my ability to show what i look like just breaks me, it breaks my heart everytime. its just so hard... like even with job interviews you know, even thought they say they dont descriminate they f4king do and they know it.

    I know life is what you make it but I feel like someone just hacked half my body off and said your human go live life nothing wrong with you its all fine. if that makes sense).

    I just dont understand why I feel so disgusted with myself, I cant help but cry now when im typing this, I know who I am, and I know its not my fault that I was born like this and I shouldnt put myself down and I should be kind to myself but i just fall so f4king hard sometimes. It hits me so bad. I have never looked into the mirror before and talked or blinked or tried to smile. I just cant, I have to live in this mindset that I am somehow normal If I did I just couldnt make it I cant make myself see myself like that.

    Moebius syndrome doesnt affect my love life. Ive loved, ive been hurt, ive expieremented Ive done everything, i dont even understand how like i intimidate people with my lack of expression its just how it is and idk i just cant be f4cked even trying anymore I just really cant hey. I feel so alone... i really feel like i cant talk to anyone. I want to talk to people who areliving like me who also have this for people who dont have this syndrome they have no idea what its like and it just makes me angry when they try to get down to my level to see it the way i see it it just doesnt work feels like they are being f4ck tards trying to mock me.

    I want to know peoples life expierences with dealing with this sort of sh1t? good and bad. I want to hear how I can atcually live my life like this because I honestly feel like i cant. I feel like I dont have the strength to live a full and happy life. I feel like this sh1t just knocks me down to much.

    thanks for listening to my sh1tty f4king life!
    sorry for the obsessive swearing. really sorry)

    I usually post on Child Neurology, but I saw your post in current feeds. I am so sorry that you are in so much pain. Your post screams pain and it hurts to even read it, much less feel it personally. I will add you to the top of my prayer list today - it certainly cannot hurt. I'll pray for peace and contentment in your heart, excluding all the hurts that come from outside and in. I hope you have a better day and I'll sign off like my friend over the Child Neuro board, "Love and light", Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:


      I feel a lot like you do. P.M. me so we can talk easier MissX.


        I can't tell you how glad I am that you found us!!!

        We do have a forum for what you're dealing with. Not sure, how active, it is, but, you might
        want to check it out. There may be people who are dealing with your issues and could use
        someone to talk to, but, maybe, they're waiting for someone else, to post because, that forum
        is so quiet and, like you, they may not want to be the first one, to post!:) Give it a try!;)
        Also, feel free, *anytime*, to PM me if, you just need an ear! We all have something, here, so, we may not
        be dealing with the same thing, but, I can promise you, were *all*, glad, you're here!!!!!!:)
        Welcome to B. / T.!!!:)


        P.S. Again, I'm here if, you'd like to chat more, privately!!:)
        Last edited by Ponygirl; 04-04-2012, 05:59 PM.


          i've atcually been on this forum before, I made another account back in i think 08? that i lost. It's hard because I live in Australia and I'm not really around on the same time zone to chat properly with people. Thankyou all of you for your support it made me feel a little better knowing someone cares and listens :)


            Well, welcome back, then!!!

            Please, don't stay away so long this time!! :) I'm here at *all* hours, so, again, feel free to send
            me a P.M., *anytime*!!!:) Again, welcome back to B./T. and, please, stick around this time!!!:)



              Did you see Barque's post? It said, PM them if, you'd like to chat, privately!:):)


                sounds like a date. LOL


                  Well, ,................................................. ............................

                  I'm not sure, they meant, *that*?!?...Lol



                    PM received and answered.


                      was jokingggggggggg haha


                        welcome to braintalk, missx !


                        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 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.

                        Last edited by tic chick; 04-05-2012, 07:25 PM.
                        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


                          I *know* you were joking!!...Lol

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



                            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


                              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