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MAY13136611MAY13136611 Member Posts: 11 Connected
Hi, my name is Sam. I am 21 and have a condition called hypophosphatemic rickets. It has affected since birth and affects me in many ways. I am currently recovering from a operation i had around 2 months. A external frame was fitted on my lower right leg, and that it will be on for around 6 months. Thank you. Feel free to ask questions

Replies

  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    Hi @MAY13136611 welcome to the community!

    How have you been coping since your operation?
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Hi @Ami2301, thank you for the reply. Physically im doing very well but mentally. Not so great. Just trying to take one day at a time
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    It is difficult accepting what has happened, it does take time, do you want to tell us why you don't think you're coping mentally?
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    I was having operations at a young age. From the start of secondary school till when i finished. I feel that now i am still having them and i feel like i have been left behind. I had to give up my job. No routine like school or college to fall back on. I was meant to have this operation 5 years ago when my leg fractured but was left. Then it was canceled last minute, last year. So ive been constantly waiting. I just want to move on from all of this. I have too much time on my hands. Ive lost motivation because i just cant see the end to all of this
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    I am really sorry that you have been through all this. Especially from a young age and still ongoing. I know how it feels to lose motivation after something traumatic has happened. It's not easy at all. I promise you, there is a light at the end of the tunnel and we will help you get through the tunnel one way or another. 
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Thank you, i just feel so hopeless right now. I know what i want but i cant have it. Just didnt think i would be here again after all these years of operations and treatment
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    What is it that you would like?
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Just more control of my life
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    Do you feel that you're condition is stopping this?
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Yeah i do. I just feel, i cant take control of what i want
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    I know how it feels to have a condition that completely removes all of my self control. It is devasting. This year I have learnt that there are ways to regain control, it's just finding those ways and it isn't easy, there will be times where you think 'what's the point?' But eventually, you will regain more control.

    We want to help you anyway we can :)
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    Disability Gamechanger - 2019
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @MAY13136611, and a warm welcome to the community! Great to have you here.

    Thanks for sharing this with us, and glad to see you've had a chat with Ami. At the very least, I hope it helps being among others who understand. If we can be of any assistance, do let us know.
  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Hi, thank you both for the comments. I really do appreciate it. 

    I am just frustrated, ive always tried to cover my condition up any way possible. Pretending that i dont have it. Ive never had people which know what its like to not be considered "normal" 

    I am 21 and all i want to be doing is living the life i want to live. Its almost like i cant accept what i have and whats happened to me
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    How you feel is completely normal, I am only 2 years older and  I want to be able to live my life to the best of my ability.

    If you ever want to have a rant or a chat, I'm always here :)
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @MAY13136611 Pleased to meet you. Thank you for your post.

    I hope I can be supportive and be there to help with any words I can offer

    Ready always to listen.

    I was born with a genetic condition effecting hands and feet.  From young age constant torment of having operations required to correct the defects and disability.

    After while you suddenly get into this sinking feeling been emotive after all . You want a normal life. I reckon spent nearly half in my lifetime in hospitals for one thing or another.

    I am in my early fifties I stopped having any more around my early twenties. Even though advised to continue.

    Recently been aware of getting older but realise how time is so short.

    I do think it is this helping or hindering feelings the most I can get from my own experiences.  What again but add to that the just try to cope with what I have now.

    Had numerous counselling and therapy to understand  myself more.

    Have addiction history all because of it. The mental state I have because of that all integrated to my time in hospitals. 

    Add to that not helping my families chagrin and demeanour to all of this. Believed contributed to my mental state.

    Somethings not right when you leave a child in hospital and forget about that your in hospital.  Even went on holiday .

    I would and do advise the need to talk about what you have been going through. You are not alone.

    I use this forum to help others but help myself and try to learn if I can be beneficial to my well being.

    Give and support those like yourself if we can as a community understand.

    One point I would add is to speak to some one regarding your mental health.

    Many charities I look for on line have a number of clientele with disabilities.  Acceptance is never easy part of having a disability but the ones I got in touch with all helped me be more understanding of my own fragility.

    What they very much can offer is support for your mental health and sign post you regarding your disability.

    Have the information and advice . Can help with benefits and all around that.  Any thing else you might need.

    Pleasure to meet you.

    Take care

    @thespiceman
    Community Champion
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    Thank you @thespiceman and @Ami2301. I really appreciate you for taking the time out to reply back. I just wish i was on here sooner. I have been in my own little world thinking im the onlu one going through this. And especially the past year ive not been dealing with my emotions well, been taking it out on the people around me. When i really should have spoke to people who are in similar situations and can relate to how i feel, instead of thinking im all alone. Thank you
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    I wish there was a hug emoji because I just want to give you a big hug!
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  • MAY13136611MAY13136611 Member Posts: 11 Connected
    @Ami2301 Thank you, hugs do make everything better again. I really appreciate your words
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    How are you feeling today @MAY13136611
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @MAY13136611 Thank you for kind words.

    All we can as community is to be here to give much support.  Offer guidance and information. If I can .

    I know and my friend @Ami2301 are happy to listen to you anytime you want.

    I know this is difficult and not easy. Acceptance is ever one of the hardest things I have to admit in my life. 

    Yet I know inside want peace and solace. I added my story because not for attention but for sharing and caring as I do about all our members.

    Say it is OK for you have these emotions and feelings.

    Always here anytime you wish to.

    Pleasure to meet you.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • MAY13136611MAY13136611 Member Posts: 11 Connected
    @Ami2301Hey, sorry for the late reply. I have been trying to keep myself busy today. I am doing alot better now. I know that im going to have good days and bad days. I just need to focus on the bigger picture and not the smaller one. I hopr you are doing well 
  • MAY13136611MAY13136611 Member Posts: 11 Connected
    @thespiceman Hi, hope you are well today. Your words really did help me. Like i said before, because ive only ever known me like this and no one else around me. I have felt that its only me going through this. But being here, and talking to people here have helped me so much to understand and feel that im not alone. And that i have people that understand how i feel and what im going through. Thank you so much
  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    No need to apologise, we are always here...well we do need to sleep but you get my drift lol :)
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