Disabled people
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I'm still struggling with being disabled

bevt2017bevt2017 Member Posts: 353 Pioneering
Hi everyone 
Firstly my heart goes out to everyone, wether you was born disabled or not.
For me I've only been disabled for nearly 2 years now.
Im profoundly deaf with neurological problems.
I have been diagnosed with sweets syndrome, non specific vascilitus and phereperal nurophapy.
Suffered with depression since I was 11, I'm 44 now. I also suffer with anxiety, stress and panic attacks.
I take slpeeping tablets, because I can't sleep with the tinnitus. 2 x Anti depressants pain killers.
My house has been turned upside down, because of all the equipment I need. 
I can't do anything for my family.
I've always worked (which I miss so much).
I've lost friends because of my disabilities.
And every time I go out of the house, I hide behind my hat so no one can see me.
Some people are rude, ignorant and stupid, I don't even want to go out of the house.
My husband has been verbally attacked, because I'm in a wheelchair. (Hes asked people to get by)
Im not suicidal, I just feel lost.
I'm Not the same person i was, and I'm struggling to come to terms with it.


  • debkenzodebkenzo Member Posts: 110 Pioneering
    Hello Bev
    My name is Debbie.  I am so sorry and sad to hear you say that you feel lost.  I can understand to some degree how having a disability changes everything.  I used to be athletic and have damaged my bones over the years, I now have osteoarthritis in both ankles, lower spine, left shoulder blade and finger joints. I am no longer the person I was.  It has taken me a very long time to accept that I can no longer walk without the aid of crutches and my rollator.  I am 54 years and feel like an old worn out machine.  We become different people, our identity has changed, I feel the world seems to judge me.  I keep smiling in public, even when in pain, I force myself to smile because I don't have arthritis in my face, I will not allow this situation to stop me from smiling but when alone indoors, I sometimes let it out, scream and cry etc.  This forum is truly amazing to share our experiences and to see how we are not alone in our struggles.  I wish you all the love and that you feel a little better. 
    Debbie :)
  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @debkenzo
    Thank you for your kind words.
    It's just to much sometimes.
    On Friday I was told I have Blepharitis. It's an infection of the eyelids. I have another infection on my finger. So I will have to go and have yet another biopsy. And I've just received my appointment, for an ultra sound, because I have a lump. 
    I think my immune system is attacking my body again.
    I have to stay positive but it's hard sometimes.
    Your right about the forum, I don't know what I would do if I couldn't talk to people like yourself.
    My family can't even imagine what it's like for me.
    So talking about my disabilities on scope, does help me a lot.
    Thank you so much
    I wish you all the very best 
    Bev x
  • debkenzodebkenzo Member Posts: 110 Pioneering
    Hi Bevt2017
    Sending you lots of Loving Vibes and keep smiling as best that you can.  
    Debbie :)
  • [Deleted User][Deleted User] Posts: 128 Courageous
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  • bevt2017bevt2017 Member Posts: 353 Pioneering
    Hi @Ella1976
    I hope your Ok?
    Your right about benefits, people do judge us.
    God forgive they find themselves were we are. Or have to go through the ESA and P.I.P process.
    WOW what a lovely relationship you have with your son, i bet you are very proud of him.
    My daughter is just like your son.
    Shes what I call an old soul.
    A lot of people have no one, so we're lucky to have them.
    That's what keeps me going, she's my world. 
    I wish you both the very Best 
    Bev x 
  • [Deleted User][Deleted User] Posts: 128 Courageous
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  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I am 61. I have a collapsing spine which causes chronic pain. I also have a host of other problems physical and mental. I have been ill for 12 years and disabled for 8. Before that I was very active at various sports and games. 2 ex wives. 3 kids. And so on and so on.

    It took 8 years to adjust to and accept my illness so I know how difficult things can be. I have also regularly gone through being insulted or having my illness questioned because it's invisible.

    All this just seems to be the way things are. It's pretty disgusting but we aren't given a choice unfortunately.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Rifi7Rifi7 Member Posts: 189 Pioneering
    I also have been struggling with losing my mobility. It’s a very difficult time and I’m finding it hard to adapt. Up until I a couple of weeks ago, I was doing fine but these past few weeks I’ve been really low. My family keep telling me that there are many people in my situation, but I’m not other people. I just want to be taken care of. I don’t know how to stop getting myself low. At lease on here I know I’m no longer on my own.
  • exdvrexdvr Member Posts: 314 Pioneering
    Hi @bevt2017     I can so easily relate to your situation.   I've been struggling with my conditions worsening since being forced into early retirement on health grounds in 2003. I had thought that all I had to do was work to provide a home for my wife and kids but I missed out on so much of their growing up and we're no longer really close.  Up till then I had been able to cope and thought I had put childhood illness behind me but  I'm now at the stage of being virtually housebound and unable to walk.  I've become bitter and twisted, lost most of my friends, and feel that I'm nothing but a burden to what's left of my family.  Depression has really taken a hold and yes I have been and still am so close to ending it all as I see no point at all in just existing until I fall off the perch due to old age.   It may be too late for me now that I'm into my seventies but I do hope that you can come to terms with your difficulties.   Take care.

    Best wishes.


  • Rifi7Rifi7 Member Posts: 189 Pioneering
    Don’t give up. You have children and that in itself should be enough. Your not old and you can turn things round. You just need to find some worth. Try everyday to do just one thing. One thing positive. I’m alone and have no kids but I will try to adapt before throwing in the towel. Life is hard and especially this time of year but there are groups, organisations and help out there. Have you thought of having a break to Revitalise. Their website is Revitalise.org.uk. It’s a place where you can go on your own and they have activities and things to do there. They also have carers there to help you and I spoke them today and many people visit on their own and make friends. Is it not worth a try. I’m trying to get myself through this and I’m sure you can if you just reach out to your loved ones, whom I sure care about you. I hope this helps!
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,968

    Scope community team

    Hi @Rifi7. I'm really sorry you're having trouble adapting. You're definitely not on your own with this and I know many of our members can relate to how you're feeling.
    Do you think it would be worth you speaking with a counsellor at all? 
    Senior Community Partner
  • Rifi7Rifi7 Member Posts: 189 Pioneering
    Yes that would help. How do I go about doing that?
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,968

    Scope community team

    Hi @Rifi7, this is something you'd normally speak to your GP about. They can refer you, but a lot of counselling services also take self-referrals. Your local practice should be able to give you the contacts for anything nearby.
    I hope that helps and best of luck!
    Senior Community Partner
  • pollyanna1052pollyanna1052 Member Posts: 2,031 Disability Gamechanger
    Hi, Revitailse looks a great place to refresh. But it is very expensive. Maybe you could get a holiday grant or some other type of funding.
    I had a respite holiday fund from the council, but have recently lost it, as they have changed the rules.

    I know what it feels like to be a burden. People constantly tell me I am not a burden, but when you rely so much on other people, to even get you a drink...it is soul destroying.

    And yes, throwing in the towel can seem so easy at times.but NO!...we must support each other, as we do here and keep fighting.

    There are good things still there for us, only sometimes they are not so easy to spot.

    Keep the faith fellow members!
  • Rifi7Rifi7 Member Posts: 189 Pioneering
    Thank you so much. I have received mixed reviews on the site and some have been very negative so your positive feedback is very much welcome. You have certainly given me lots to think about and most of all hope.
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