New to the forum, coming to terms with disability? — Scope | Disability forum
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New to the forum, coming to terms with disability?

kmorley90
kmorley90 Member Posts: 6 Listener
Hi, I have just joined the forum.

I have suffered with my back for years and in May it took a bad turn which left me bed ridden for 4 months. In September I started becoming more mobile and have managed to start walking but with an aid and have gone back to work. Everyday I'm still in pain, and when speaking to my pip Assessor she brought me to tears when we discussed about me using a wheelchair (which I'm refusing to do yet as I still have some mobility) could I ask how people come to terms with a physical disability after being so active before hand.

I know I have a disability but I am struggling mentally to come to terms with it any advice? When I speak to my specialists I just break down and still can't gain an understanding of what is happening to me, especially when we do not know what the cause is either yet.

Thank you for any help and advice anyone may give.

Comments

  • Alex_Scope
    Alex_Scope Posts: 796

    Scope community team

    Hi @kmorley90 and welcome to the community, thanks for reaching out. I'm sure you're not the first to ask this question, so please don't feel alone. 

    Personally, I'm afraid I can't advise from the perspective of being more active beforehand, as I was born with Cerebral Palsy, and started using a wheelchair in childhood. I can appreciate though that the change must be stark, and completely understand your feelings.

    I do know that as things stand, my chair has been a fantastic boost to my independence, but being a wheelchair user does come with it's share of challenges, such as inaccessible buildings, or discriminatory attitudes, for example. This isn't always easy to deal with, and it can take time to feel adjusted. 

    I'll mark your post as unanswered to help our members find it and share their experiences, but please know that the community is full of support, so thanks for joining, and I hope we can be helpful for you :) 

    If you have any other questions in the meantime, please don't hesitate to ask.

    Alex
    Online Community Coordinator
    Scope

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  • janer1967
    janer1967 Member Posts: 13,329 Disability Gamechanger
    Hi and welcome to the community 

    It is hard to come to terms with and takes time 
    I understand I became disabled wheelchair bound 4 years ago with no warning 

    It's like a grieving process and goes through diffetent stages like anger , upset , feeling guilty , feeling inadequate , not wanting to be a burden 

    You learn to live your life in a different way eventually and accept your limitations just take it one day at a time 

    Try and focus on what you can do rather than what you can't 

    If you are struggling get help from your gp 

    Don't worry about getting upset when speaking to assessors and others it happens all the time.  I uses to cry everytime I went to my physio you have to let it out 
  • JustPete
    JustPete Community Volunteer Adviser Posts: 75 Connected
    @kmorley90 I extend my welcome to you.  I wanted to add my own views here. 

    I have been a wheelchair user all my life.  I am losing bits of my own independence as time progresses.  However, I'm not going to talk about me.  I wish to talk about someone else I was approached by approx 15yrs ago.

    I used to coach 'young teenagers' in a sport.  One in particular was mega talented and was, in my opinion, world-class potential.  Age 15, he made the GB potential talent squad.  He had Muscular Dystrophy and as his physical condition deteriorated, so too his dreams of representing GB deteriorated.  There was pressure put on him from GB to  'change class' in order to continue chasing his dream; they knew he was a potential GB medal winner on the world stage.

    I am so glad that he, with his parents, came to me for advice. My advice was something like 
    "This is your life, no one else's.  I understand that you want to continue playing in your current class - so you must continue to follow your heart.  If the time comes when YOU want to change 'class' come back to me, we, along with your parents can discuss it again".

    He, and his family, needed the pressure released.  He needed time to come to his own decision.  He was extremely intelligent and as we spoke and locked eyeballs, there was an unspoken agreement that we both knew he would change 'class' - on his terms and at his time of choice.

    Within weeks he decided to change 'class'.  He won everything in the UK, Europe, the World, became number 2 in the world and had a huge rivalry with the World number 2.

    What is my point?  WELL.......it is YOUR life.  It is ok to not want to let go of things you were once able to do.  It is ok to have all kinds of emotions about this.  It is ok to seek guidance from people who understand.......as you have done here.  It is ok to be confused and angry. 

    The process of physical change must be matched with psychological change.  Cry, scream, shout, it is all part of a process.  When you are ready you will manage any change.

    As my signature says: "You are braver than you believe, stronger than you seem, smarter than you think and loved more than you'll ever know." 
    I am a Scope Volunteer.   Community Volunteer Adviser with professional knowledge of life - additionally, but not limited to: living with a disability, employing personal assistants, education, sexuality, being gay, managing relationships having a disability, technology and assistive technology, sport & leisure inclusion & participation, mental health issues (both through personal experience and supporting others),   If I can't help, I will endeavour to find somebody who can.

    "You are braver than you believe, stronger than you seem, smarter than you think and loved more than you'll ever know." - Winnie The Pooh
  • Alex_Scope
    Alex_Scope Posts: 796

    Scope community team

    Hello @kmorley90 I just wanted to check in and see how you've been doing. I hope our members responses have been helpful for you.

    Have you been able to talk to anyone close to you about how you've been feeling since you first joined the community? 
    Online Community Coordinator
    Scope

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  • kmorley90
    kmorley90 Member Posts: 6 Listener
    Hello @kmorley90 I just wanted to check in and see how you've been doing. I hope our members responses have been helpful for you.

    Have you been able to talk to anyone close to you about how you've been feeling since you first joined the community? 
    Hi Alex,

    I am slowly coming to terms with it but still struggling I have received PIP now so that has helped with getting things in place. I have spoken to my nurse as well and we think we may have found a diagnosis but have to explore one more avenue before diagnosing. It is called sacroiliac joint dysfunction so we may finally have an answer and a care plan.

    Thanks for checking in 🙂
  • Alex_Scope
    Alex_Scope Posts: 796

    Scope community team

    edited January 12
    Ah thanks for updating us so quickly @kmorley90, that's encouraging news!

    I hope you can get a diagnosis confirmed soon, that will make another positive difference, on top of PIP as well. Congratulations on being awarded PIP, that must be a great relief.

    I'm also glad you are making slow progress with coming to terms with your disability. It's by no means a quick thing, and it's unique to each individual of course. Remember if you ever do need to reach out for a chat, or to ask for advice or help, you know where we are :)

    Alex
    Online Community Coordinator
    Scope

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  • kmorley90
    kmorley90 Member Posts: 6 Listener
    Ah thanks for updating us so quickly @kmorley90, that's encouraging news!

    I hope you can get a diagnosis confirmed soon, that will make another positive difference, on top of PIP as well. Congratulations on being awarded PIP, that must be a great relief.

    I'm also glad you are making slow progress with coming to terms with your disability. It's by no means a quick thing, and it's unique to each individual of course. Remember if you ever do need to reach out for a chat, or to ask for advice or help, you know where we are :)

    Alex
    Thank you Alex I will be sure to do that. It has been an awful long process and feel like it's only just starting, but at least things are moving in the right direction.

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