How do you deal with your disabilities? — Scope | Disability forum
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How do you deal with your disabilities?

Brbara60
Brbara60 Member Posts: 2 Listener
hi im Barbara who suffers from Wilsons disease have had 2 liver transplants to control illness have stage 3 kidney disease suffer from epilepsy makes life difficult. How does everyone deal with their disabilities

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Brbara60 welcome to the community :)
    Scope
    Senior online community officer
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Welcome.

    I usually consider what should happen in the near future and look into options to deal with it. I adopted a stick a little early and rented a wheelchair to try out before it was necessary. I picked up some things to use in the shower that made things a little easier.

    I'm lucky in that I don't care what other people think, if I need to do something I just do it.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Markmywords
    Markmywords Member Posts: 419 Pioneering
    It's an awful, tired cliche @Brbara60 but it's true; one day at a time.

    Making plans is pretty futile since you can't predict how you will be even from day to day. So you wake up, assess what you feel able to do and work within it.

    Try not to focus on what you've lost as that road leads to a very dark place. Find things to distract yourself such as a hobby.
  • Brbara60
    Brbara60 Member Posts: 2 Listener
    thank you for your reply
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    You can anticipate some things though. With enough research it is possible to get a fair idea of how a progressive condition will go. At least that way if the worst happens you know what you need to get to stay functioning. Non-progressive are harder to predict because, if they get worse, it's a more random change.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello I agree with what every one is commenting.  I have a genetic condition of the hands and feet plus mental health issues.  The best way is cope I found is take one day at a time.  Have coping systems in place to make life comfortable.  I use a diary to plan anything like shopping and to simple tasks around the home.  I get days where I am just too tired and mentally not good.  I need to do the tasks in the diary if I can and make a note when to do them.  Examples are washing up in the morning I wash up things before breakfast which include utensils night before.  Then left on draining board to dry some I will use for breakfast and for meals all day when and if I need them.  It is the little things as well have a comfort box to use when days are bad.  I have radio on plus a selection of music that is comforting.  My bible words are sometimes reassuring.  Items that I have freezer simple meals to eat in zip bags and labelled.  I make these on those good days or at weekends and plan for making enough to last.  All of us have days when it is a struggle to eat and having something homemade in a zipbag to heat up in a pyrex dish microwave helps.  I have a folder with lots of information and people numbers and what to do in a crisis.  I compiled this because I live on my own have support from charity but sometimes they can not be reached.  Hope any of this helps best wishes take care
    Community Champion
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  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    Disability, what disability. I have lost some of my old abilities but I am discovering new abilities. Some of my old "friends" have gone, but new ones have turned up.  I could easily have not been here, but I am . I will continue to do what I can and find new things to do.

    CR
    Be all you can be, make  every day count. Namaste
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Sorry I forgot to add a comfort box is items such as favourite poem, music could be a book.  Include what you like to ease any pain or stress.  I had to cope with stress sponge stress balls.  Anything really that helps you.  All of us in our community understand
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello Cockney Rebel I agree questions I often say the same.  What is a disability I l look and see and hear.  I sometimes I get too wrapped up in this frame of mind I have.  I have to look further into the future and wonder if the term disability is going to be obsolete.  I have a memory of a lad who was on a back to work programme who had a degree in genetics.  Who told me then this was about early nineties that with science conditions like mind could disappear.  Then I argued what is a disability I can do some thing you can not is that a disability.  I always want to learn new things and knowledge that can help not hinder me.  That is why I enjoy being on here this forum.  Always something useful to add to my filing cabinet in my mind.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes

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