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This topic contains 4 replies, has 4 voices, and was last updated by  Miriam1998 5 years, 11 months ago.

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  • January 9, 2013 at 4:51 am #8438

    KaylaS
    Participant

    Don’t get mad because I been on here lately 🙂

    Alright teens, what’s it like for you?

    I mean personally for me, it’s odd every once in a while but I’m a weird person, I know that some of you know me and that others I’ve contacted with via other sources.

    First a little back ground: I was diagnosed when I was 16, (happy sweet 16 to me!) I found the camp a year later thanks to my family,

    Now onto the important stuff here, I have R&R MS, and I’m in college like a lot of my friends with MS besides the younger ones. I’ve been there and done just about everything under the sun, I’m one of those people that you would see on the streets and think yea she sweet, but I’m not I’m a right witch and I’m not afraid anymore to show who I really am.

    I will admit like Aaron that having MS made me stop my bad habits and try to get new ones, unlike a lot of people I know I’ve been through pretty much everything bad, I’ve gone through alternate schools because I dropped out, went to court, been through the legal and government system, I can at this point read those books back to you backwards. But that didn’t stop me from getting into college and completely my first semester even well dealing with a dysfunctional family that seems to love trying to stop me from getting what I want.

    What changed my life the most wasn’t my MS, not completely it was the way that my MS showed me the ‘right path’ with a lot of things, I mean it showed me who my real friends where once I stopped hiding it, it showed me that I have to take care of myself because honestly no one is going to be able to help me as much as I can help myself. And most of all it showed me that there isn’t anything to be scared of, I’m one of the lucky ones, I have my MS family and they know that when we’re having a relapse all we want to do is hide in a hole half the time and the other half we want to kill whatever made us have this terrible disease.

    At this point I don’t even think of it as a disease, in my mind it’s become a blessing, I don’t see everything bad that it’s done to me, I see everything that it’s given me; real friends, a family that understand and a self-realization that I can do everything, there is honestly nothing holding me back anymore because me and my MS we no longer pull each other down the street, we hold hands skipping down it together.

    January 11, 2013 at 5:27 pm #8451

    F.U.MS
    Participant

    Great post Kayla!!

    Aaron

    April 22, 2013 at 11:18 am #8957

    Miriam1998
    Participant

    Hi 🙂

    First i wanna say: if there are grammar mistakes: I’m german. I searched for a german community like this one but there’s nothing, just kind of ‘question/answer’ forums and that’s just not what i was looking for, i wanted to get to talk to other people with MS. And then i found this community via facebook and thought: ‘THIS is what i was looking for’ so that’s why i’m here even though english isn’t my mother tounge, i just learn it at school 😉

    So now back to the topic, you wanna know what it’s like for us? Well, i’m 15 years old and it’s not even sure if i have MS, i still hope the test result will be negative but i don’t really think so and the doctors do neither.

    When i was 11 y.o. my aunt got MS and my mom explained it as easy as possible but i was really worried about her so i watched documentations and read articles on the internet, which made me even more worried. For me this time was almost as hard for my aunt herself because she didn’t feel well at all and cortisone didn’t help her. We’re really close to each other. When i was 13 i got to know Billy Talent and they immediatley became my favourite band and they still are 🙂 Reading how good Aaron lived/lives with MS helped me a lot because i began to build up hope for a better time for my aunt. Step by step she really started to feel better and so i did, and in March 2012 she was kind of back to normal. She even agreed to go to Berlin with me in October 2012 for the Billy Talent concert which made me happy because i saw how fine she was and because i got to see my favourite band, yeah 😀 And it got even better when i also saw Aaron being fine… more or less^^ That’s the time when i thought ‘okay, living with MS really IS possible if only you believe in a good live with it, fight for a good live with it.’

    December her condition got worse again, she went back to hospital and i was worried again. January 2013, my aunt was still in the hospital, there was another shock because my sister (20 y.o. then) got MS. She can’t accept it and she’s really depressed but she doesn’t wanna talk about it. She doesn’t confront it, she just tries to hide it, to forget it, and that’s what i think is the worst thing she can do now. It’s not easy to see two family members suffering because of this shitty MS :/

    February 2013 i (14 y.o. then) woke up with my left hand totally numb and i went to a doctor. He wasn’t a good one and told me not to worry about it and sent me back home. In the evening the feelings came back to my hand but in March my leg felt numb and the next day my hand also did so i went to another doctor. After i told him the other symptomes he sent me to a neurologist and the neurologist said that i probably have MS. It’s not sure yet but very soon and even though my chance of NOT having MS is very low i still hope i don’t. But if it’s MS i’ll try to remember the good times i had with my aunt and i’ll think about all these people in the world having a good live with MS… Right now it’s like hell not to know what’s going on, it would even get better if i was told it’s MS because the insecurity is the hardest thing to handle… i hope it’s gonna be better soon but i guess it will 🙂

    ‘Turning anger into hope’ is a good motto, it already brought me through hard times 🙂 Usually life with MS is okay i think but right now it isn’t because there’s too much bad going on in my family and it’s all about MS :/ I’m looking forward 🙂

    Hope you understand my english, it’s just learned at school so i wouldn’t wonder if half of it is wrong 😉

    Greetings from Germany 🙂

    • This reply was modified 5 years, 11 months ago by  Miriam1998. Reason: i used a wrong word^^
    • This reply was modified 5 years, 11 months ago by  asamis.
    April 22, 2013 at 6:50 pm #8960

    Lelainia
    Participant

    Hi Miriam! Don’t worry-your English is really great!

    I am sorry you are dealing with so much at such a young age. It’s hard seeing someone you love having to deal with MS and then potentially having to face the same disease yourself. That can be scary. Each and every person with MS experiences the disease differently, so the effects you see one person having, may not be the ones you could have.

    Just like the effects of the disease will be different with ever person, so is the way each person who is diagnosed will handle it. Everyone’s emotional thermostat is set differently. What may be no big deal for one person could be devistating for another. Being diagnosed with a life-altering disease is a big deal and it will probably take your sister some time to come to terms with it. The first year after being diagnosed is the hardest. There’s alot to learn, decisions to be made and grieving and healing to be done. After that, usually things start to even out and you can decide just how much room MS is going to take up in your life.

    I am glad you found us. We’ve all been there, so this is a good place to seek understanding and support. I think you’ve got a positive attitude about how you are choosing to move forward. I hope that if you are diagnosed with MS, that the positive thing will be that you can get the treatment that fits best for you in order to stay as healthy as possible. Please let us know how it goes.

    April 23, 2013 at 8:50 am #8963

    Miriam1998
    Participant

    Hi Lilainia! Thank you so much for your nice and cheering words!

    Yes, I’ll give her time but you’re right, it’s really hard to see her feeling terrible and not to be able to do anything :s Of course, i also hate that it hit her, i mean, why my sister but everybodey thinks like this if a related is diagnosed with MS and we can’t change anything. This is how life goes so either you let it pull you down which won’t help anybody, or you look forward, which i think is a lot better. That’s what i always tell myself to keep strong. If you don’t accept MS you won’t get forward.

    Yes, i also hope that if i have MS i’ll keep strong but at last it doesn’t really matter if I do have MS or not because if it’s not MS it has to be something else, which does similar (or better: almost the same) things to my bodey so… What does it matter if what does this to me is MS or something else? Okay, i’ll let you know 🙂

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