Things seem to be getting worse - Page 2 — Scope | Disability forum
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Things seem to be getting worse

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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I appreciate the thoughts Barry and many of them are the only reason I am still about. However, that fact remains that my health has already destroyed the closeness in the family. My sister no longer has any contact with my children. One of my children has no contact with me at all. My other daughter and grandchildren see me for minimal amounts of time at xmas and on their birthdays. Only my son has any real contact with me and then only because I make most of the effort.


    When I was 26 I lost my father in a car accident and yes, it hurt a lot but I got over it and lived with it. I often feel that the constant pain I am inflicting on my family every day I am alive would be less if I wasn't around anymore. If I died they would get over it and the total damage to them would be less. There are financial reasons for it too but I won't go into them.

    At the moment I go day by day and today is a better day even though the pain hasn't changed all that much. How I shall feel tomorrow I don't know.

    Thank you for the encouragement though.

    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 Community member Posts: 6,388 Disability Gamechanger
    Hello my thoughts are with you I do not know and I do not mean to be patronising.  I know I had thoughts of suicide and started to feel it was my fault everything.  Having a lifetime of addiction and the consequeses now I see things have to change.  What would you change and how that is the question I would like to ask you?  I asked the same question ten years ago for myself.  I am not to preach and advise but if I had to change and have done so.  Had to if I had not I would have gone to my God but I did and over the next ten years started.  Why blame me it was my fault so I thought.  I just had to  change and I trod on a lot of toes and became angry the way life was.  I do not want to die and wasted so much time now I truly grateful the changes I made.  Can it be done give it a try who knows? Hoping you will be ok and hope you can try to think about yourself in a more positive manner.  Reading about you at various comments you make you have a lot of things I never had.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    About myself I feel perfectly fine and happy. I have been basically a good person my whole life. Always put others before myself. Spent time with family when I could and provided the best I could.

    For that I have been taken advantage of by my partners. Abandoned by most of my family when I needed the most help and lumbered with a chronic condition with no cure, no treatment and no name. The condition leaves me with no future.

    What choices do I have......

    1) Live alone in misery and pain
    2) Die

    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.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Today was supposed to be a good day. The pain was a little better. I seem to be getting over the worst of a cold. I had arranged to spend some time tis afternoon with a friend.

    Unfortunately the afternoon had to be changed to this evening and gradually it got later and later until it vanished. I was hoping to see them before I see the specialist on Monday and now I won't get the chance. I have arranged stuff every day so I don't sit and brood about Monday.

    I don't deal well with disappointment when I am feeling low. Even the pain seems worse now.

    I am not looking forward to Monday. I know they have rushed me through the process of getting back on the list for surgery but if I have to wait 3 months for it I don't know how I will cope, Despite being scared by the prospect of the surgery I need it done now. It has already taken far too long to get to this point.

    Tonight will be difficult.

    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 Community member Posts: 6,388 Disability Gamechanger
    Hello thank you for replying.  I do understand what you are going through I have been there and still am.  With addiction after the recovery you are free from drink and drugs but the muscles and body has changed.  First of all I have muscle pain all the time plus had and did have dramatic weight loss now building it back up.  I apologise for asking what would you change then.  I see from the comments you have stated fine and happy.  So what it is that makes you happy then I hope you do mind me asking.  I am happy in my life simple thing like radio on and Classic FM.  Simple food and nothing complicated.  I have been there with family and friends and relationships if you wished to see on a vast range of themes and discussions on this forum.  I am in pain mentally and physically everyday but I have to carry on.  Why because I know as I have said things have changed.  It has taken time and I think time is a great healer.  Can I add spent a awful long time in my life putting on the black suit and tie for people who I knew and briefly knew through addiction.  My thought are with them always.  Some got free of the addiction but died of some complication.  I shed tears and cry inside all the time.  This what keeps me going the believe that I will free of this pain and misery one day.  So please can I ask what keeps you going everyday what do believe is it.  In my case also it is my faith and something out there is keeping me alive and opportunities to survive.  I am like you I care about people and put others first part of my Christian duty.  Now just once it is my time for me.  I will support friends and anybody who needs it but just this once now and again I am putting myself first.  I hope you will talk again and I look forward to your observations on life.  Thank you for taking the opportunity to read what I have said and take care.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I am happy that I led a good life. That my kids are healthy and free from addiction. That they can get on with their lives without being dependent on me. That my grandchildren are healthy and strong.

    All of these things I am at least partly responsible for.

    Also that, despite how they treated me, I helped my partner's and made their lives better. I have also helped others along the way.

    I'm just sad that my suffering will prevent me doing so in the future. Even prevent me helping myself.

    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 Community member Posts: 6,388 Disability Gamechanger
    Hello so you done so much with your life that is good to here that's great really.  Of course it is sad as you say that you are suffering and I understand that.  I had a lot of counselling and have so much baggage from things I have seen and dealt with that I always need to talk about it.  This has resulted in me sharing experiences of what I have seen and just hear about. So I use my past knowledge of these experiences to tell others of stories and tales when they have a problem or a issue.  I get triggers of all my experiences anything can set them off.  They play with my mind and conscious all the time.  I only stated this because if I can use my knowledge to advantage and help those why not you.  I know its hard to be negative about ones persona.  I was out yesterday in a group all women and most of today well all day get anxiety and hurting inside because I am an old fashioned gent and am very polite but got worried about what I am saying or doing.  I got in state because I go to these things to help myself yet it is differcult for me to mix with people because I am nervous and scared.  Also scared of tomorrow always what the future holds.  I put on a front and just be friendly  but in reality can not cope.  Everybody feels like or is it me I often wonder.  I have to struggle like everybody else.  I want to stay alive and try to remain confident and positive.  I wish you all the best for now and thank you for replying and reading this.  I find it hard to say what I want to in public but here I feel better talking here.
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  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    One of the things I go on about is a lack of secrecy in my life. Things I say here I say face to face as well. I never hold back, not even to spare someone's feelings.

    I am confident in myself and my abilities. I am also confident in my predictions. I think that there is one of my biggest problems. The doctors may not know or admit what will happen but I know. All my predictions so far regarding my health have come true. In most cases even faster than I predicted. I see no reason for things to change now. And therein lies madness in a way because my predictions are bleak for me and anyone connected to me.

    Often I cannot cope with my future and it wouldn't be so bad if I had done something to deserve it.... but I haven't. I have led a good life and helped others whenever I can, so why is it me that suffers so? Even suicide isn't just to let me out of hell, it lets my family out of hell too. They already distance themselves from me so why not get their ongoing pain over and done with in 1 go? It isn't nice to lose a father, I know that first hand, but it isn't nice to have a cripple for a father either. They would also benefit financially from my death as well as none of my money relies on a clean death. £50,000 apiece at their age and in their situations would be a great benefit. All at the cost of a father they can barely stand to see anyway. Only my son would be hit harder as, despite his young age, he is at least attempting to maintain contact.

    I have 60 years of learning and experience. I am intelligent. I can pass on so much to people but only if they want to know and can put up with being around me. Mostly they cannot handle the latter so the former becomes irrelevant.

    My mind is trapped inside a body that just wont quit except for the one part that enables people to do what they do. Until you have a spinal problem you just don't understand how important it is to day by day functioning. Losing limbs and overcoming limb issues is child's play by comparison and still presents a future. But ofc it isn't just the loss of use of the spine that is the problem, it's the pain that accompanies it too.

    I have plans for today, tomorrow, the weekend and Monday. So I am quite safe for now. Monday night will be entirely dependant on how the appointment goes. If he just puts me on the waiting list for a 3-4 month wait I shall be at very, very high risk. Because he might not I cannot arrange anything beyond Monday so have little or nothing to look forward to at that point. In the meantime I am keeping myself busy and trying not to think about how important that appointment is and stressing over 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.

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