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  • #73423
    i am 16 and scared of the future

    i am a 16 year old girl and when i was little no one new what was rong with me till i was 5
    i have permant tremmors in my hands wich meens my hands shake i carnt feel things in my lower legs
    and arms i can feel but not as well, i have no balence so i always fall and carnt walk much or far my muscles
    get tierd verry easy and i have to go the hospital every 9 months but i feel like a normal person and the doctors have sed something about bein in a weelchair if it gets worse as it is a time wasting illness with no cure an i carnt imagine bein diffrent and in a weelchair i dont want to see my future :cry: im so scared whats going to happen i carnt lift a drink without it spilling and other things, iv been looking to see if i can find anyone like me and see what has happend to them but i carnt find them.. i dont no what to exspect ? i carnt sit on the floor because i carnt get up from low things its like i have the muscles of a old lady? i dont no any diffrent but i dont no what to exspect in my future i just want to live a normal life only my family and best friends no whats rong with me but other people dont because am ashamed what they will think i hate this i carnt go out to partys because i carnt hold a cup or wear heels dose anyone have any ideas about this?

    sunshine7
    Participant
    Posts: 1
    Joined: 07/01/2011
    #78495
    Re: i am 16 and scared of the future

    Sunshine,

    It is totally natural to feel scared of an unknown future, I was at your age and yes having medical personnel tell you they can do little to help does not do much to bolster the hope you have. Have no fear, all of us here have experienced the same as you at some point.

    Like you, I was reluctant to become reliant on a wheelchair, I was determined that no matter what my body wanted to do, I will walk …….. and I did, until my muscles were no longer physically strong enough to hold me. I have to use a chair and in truth the majority of the time I am not phased by it. In fact sometimes it gets you in places no ‘normie’ would get to go, like backstage at a gig, or through unseen corridors of the American Embassy, through the Diplomatic Lounge at Houston Airport :D People try their extra hardest to help you, especially in businesses and shops so as not to be seen unhelpful, they over compensate, lucky for me.

    The worries you have over the friends you have now, will fade. I am in contact with one person I went to college with and only a couple found me on Facebook. Friends come and go but true friends always remain. I started email pen friending with a person and she is now my closest longest bud, we are affectionately known as Thelma and Louise because of the antics we get up to.

    Try not to feel ashamed of what is ailing you, there are worse things.

    When you feel ready, take a look at the Peer Support page on the main site Peer Support Page

    Maybe the MD Links project could really work for you MD Links

    I will not lie to you, there will be difficulties and disappointments, such is the see-saw of life, but all in all it ain’t so bad and when it is bad just laugh, it unsettles everyone else :lol:

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #78496
    Re: i am 16 and scared of the future

    hey sunshine

    No one can see what the future will bring not even the docs. I have suprised them many times and their predicted outcomes dont always happen when and the way the thought. hey im stubborn.

    At nearly 29 Im only just using a powerchair and scooter regular. And honestly I wish Id started years ago. I truely feel that by not using a chair of some kind earlier I really held myself back and missed out on loads. before using the powerscooter it had been years since I was able to go round a mall and falling over is less of an issue as Im not as tired as im not stuggling to keep up with people. Try borrowing a scooter/power chair next time your in a mall or next time you go on holiday. I started on a family trip to Blackpool, we couldnt get parked anywhere near the pleasure beach and I didn’t want to dissapont my little niece & nephew so borrowed one from the shop mobility place. take a couple of you friends, have a laugh when doing it. my family including my 4 year nephew all had a go and a bit of a laugh that first day and it really helped me.

    oww and heals are less off an issue for me now, if I dont have to walk far I can wear what I like on my feet ;)

    and remember never be ashamed of who you are, You MD condition is just something you have not who you are..

    take care
    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78497
    Re: i am 16 and scared of the future

    @catatude wrote:

    oww and heals are less off an issue for me now, if I dont have to walk far I can wear what I like on my feet ;)
    {/quote}

    Oww that had not occurred to me, I can wear what I like in the chair as you are right, I am not going to be standing/walking to need the flats to balance, and if I do I can just take em off — eBay here I come.

    @catatude wrote:

    and remember never be ashamed of who you are, You MD condition is just something you have not who you are..

    Quite right – we are “people with a disability” not disabled people. What’s the difference? we are people first, not disabled.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #78498
    Re: i am 16 and scared of the future

    :lol: and be honest girls, us ladys dont buy//wear heals or other unsuitable shoes coz their cumfy and good to walk in………….. we buy them coz their cute :D

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78499
    Re: i am 16 and scared of the future

    No dear, I am like your mama your future is not scared you have to keep your self healthy as much as you can for next 3 or 4 years now there are many researches going on for its treatment and I am very hope full that in future we will get it I also have MD I can walk but very slowly with some supports like by putting hand to walls.I have not much problem in my hands but one off my brother have problem like you in his hands also he also not able to lift of even a glass of water to drink he have to hold his right hand with the left one to lift a glass of water but we are hope full that we will get treatment one day and also together we are strong and help full to each other you should also try to have a string binding with your famliy it may be very help full to you.

    fizamama
    Participant
    Posts: 11
    Joined: 17/10/2010
    #78500
    Re: i am 16 and scared of the future

    Hi Sunshine,

    I was diagnosed with MD when I was 8. By the time I was 16 I was using a wheelchair to go longer distances. When I first realised that other people thought of me as disabled and that people thought I should use a wheelchair I was really horrified and angry. But that is so stupid really. There’s nothing wrong with being disabled that using a wheelchair isn’t a terrible thing – it can be a good thing. It can mean you can go out shopping with your friends, or get to the cinema and have a normal life – not be stuck in the house on your own.

    Yeah, it’s important to keep exercising and keep in good shape as long as you can. I used to go horse riding and swimming every week, and actually I still walked quite a lot even though I always fell down. And I have a useful bit of kit (a mangar booster) for getting me up and down to the floor, which means I can sit on the floor which I really like doing as I can shuffle about and don’t have to walk!

    Do you have a social worker? I used to hate mine and ignored her, but now I wish I had talked to her as it might have been helpful. You might be able to find some equipment that will help you to do more of the things you want to.

    All the best,
    A

    Ameena
    Participant
    Posts: 33
    Joined: 29/01/2011
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