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Accepting chronic and progressive conditions

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cracker
cracker Community member Posts: 324 Pioneering
edited October 2018 in Disability rights and campaigning
I am being fitted for a back brace and braces for both thumbs and wrists. The ;doctor told me I must wear these for the rest of my life, as my conditions will get worse with time. 

His statement set me aback. I don't really know how to face this - increasing disability and pain.

I know that many of us here are in the same circumstance. May I ask how you deal with it emotionally? I feel myself in a state of shock.
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  • Lasvegascaz
    Lasvegascaz Community member Posts: 5 Courageous
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    Hi.  It is so depressive and the limitations are what gets me down . I have joined crafting groups and go to therapy swimming. I do voluntary work.  These things help with my mind set.Sadly there is nothing more the medics can do for me apart from pain relief and repair disintegrated bones. So keeping your mind active is a good coping mechanism  xx
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  • Tasha95
    Tasha95 Community member Posts: 7 Listener
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    I know how you are feeling. I have been in constant chronic pain for a long time. Some doctors are blunt in what they say and it hurts. I have had several operations to try and help. I can't use one arm. These problems I have will be with me for life and my pain will worsen. The way I cope is by saying there are always people who are worse than me. Believe me it helps. I do get occasions when my pain is so bad I can't keep still or settle. I break down in tears too because it's that painful. One surgery I had that made a difference was having a Spinal Cord Stimulator implanted. You have a remote control so you can turn it up or down. You do a weeks trial first to test noire much it helps. Then you can see if it's for you. It is good for back pain as well as your limbs. Ask about it at your hospitals pain clinic . Remember you can always ask to see another doctor if you are unhappy with the one you're seeing.  Good luck in whatever you do. 
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  • berthA22
    berthA22 Community member Posts: 3 Connected
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    Easier said than done,but itry and except each day as a present,the alternative is no day not just for you but people around you.Think of what you can do not what you can't do Onwards and upwards.
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Welcome to the community, @berthA22!
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  • cracker
    cracker Community member Posts: 324 Pioneering
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    Thanks to everyone. BerthA22, I do get lost in ruing the things I cannot do. The disability turns everything upside down and sideways, changing our worlds. I will keep your words in mind.

    Losvegoscoz and Tosha - I feel, again, much less alone.
    My bones are also eroding. Sometimes I feel as if I am watching my body failing.
    Right that there are people much worse off than I. When I have my wits about me, I try to be grateful for what I have and can do.

    Joining activities and volunteering would be so helpful, but I live in a rural town with no public transportation and do not drive, so I am pretty much stuck at home except for the aides who take me to appointments and shopping and help me clean.

    I will tr;y harder to make "onwards" more "upwords".


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