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Road to Resilience - thinking positively about the future

Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
edited October 2017 in Parents and carers
We have a new series of films to share with you, from parents and carers for parents and carers called The Road to Resilience.

The fourth film is about how to think positively about the future.



We hope these films have been helpful to you, let us know your experiences now.
Scope
Senior online community officer

Replies

  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I will watch these when I have more time but it is difficult for me to be in any way positive about the future. I will lose the ability to walk. I will lose bowel and bladder control. Eventually I will lose even the ability to sit up. All this is likely to happen before I reach retirement age. Such a limited timescale doesn't allow me much opportunity to come to terms with 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: 689 Listener
    The user and all related content has been deleted.
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I do appreciate the effort DannyMoore but, to be honest, the idea of so many years of pain and incapacity are a fate worse than death. I used to be a very active, healthy family man. Now I'm just a lonely old cripple. Where I sleep and eat don't seem very important somehow.

    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.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @Topkitten I am sorry you are struggling so much :( Are you getting any support with your mental and emotional health? 
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    Not really Sam. I was under Mental Health for over 2 years but was given no assistance. Seems I had to cure myself of suicidal thoughts and Agoraphobia before they would offer help.

    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.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Oh that is terrible @Topkitten - Im really sorry you've not had a good experience.  Have you ever spoken to the Samaritans or Mind?

    You can get in touch with the Samaritans on 116 123 free from any phone 24 hours a day, you can also email them on [email protected]

    You can call MIND on 0300 123 3393 or text on 86463 - Their lines are open 9am to 6pm, Monday to Friday (except for bank holidays). Phone calls from UK landlines are charged at local rates. Charges from mobile telephones vary considerably.  

    There are people who care and who want to help so please do reach out again.
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I have spoken to Samaritans on a number of occasions but they only listen and can't help. I find it even more depressing explaining things every time. I haven't tried MIND. I have sort of given up trying to get help now.

    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.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    That is really tough @Topkitten - lots of people tell us that they feel the mental health services seem to be under staffed and under funded and reading stories like yours shows how people are struggling.  When you say you were under the Mental Health for to years, what sort of services were you offered?

    @RebeccaMHadvisor do you have any information or support that might help?
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I was only offered therapy once or twice but it would have meant attending a strange place and meeting a stranger. My agoraphobia wouldn't let me do that at the time. I had to try to cope with multiple people visiting me a few times despite telling them that my anxiety made that very stressful. They tried 3 anti-depressants none of which helped. Other than that I was visited in hospital after taking an overdose, often being told I wasn't suitable for help.

    Mostly I had to put up with being told I was basically a hopeless case because I did and still do feel that my best future is death. Can't wait for it really because I don't want to live in the state and pain I will get to inevitably.

    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.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    No one is a hopeless case @Topkitten - I know you have talked about the pain from your spine condition, have you seen anyone at the specialist pain clinic? 

    Could there be other ways to deal with your pain? I know from my point of view that it is very hard to feel positive about anything when you are in pain.

    Also do you have any friends or family members you could talk to about how you are feeling?
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    There is another thing that depresses me though. Once I understood my future I abandoned the idea of getting into another relationship. Although I find it difficult on my own all the time (12 years now) it's better this way. I have seen the eyes of a couple of late stage MS carer partners and I never want to inflict that sense of hopelessness on someone that loves me. I have been tempted a few times by women pushy enough to ask or demand more from me it was only a month ago that I finally gave a woman a chance. Only to find out that she was lying about being available and was just using me to get money. This isn't new for me, I have always had poor taste in women.

    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.
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I typed 2 posts here. The first was my experience with the Pain Clinic and has disappeared. Should I contact someone about 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.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @Topkitten
    You wrote about pain on this other post, could it be this one? 

    https://community.scope.org.uk/discussion/comment/102810#Comment_102810 
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    No, that's not it. It covered the 5 years I was under the pain clinic. Refused referrals and a more recent successful referral that has gone wrong.

    I am a little muddled by the pain and meds so I probably made a mistake as I can't find 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.
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    Ah, I just had to post that last one twice. I am getting odd host connection errors. That could explain 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.
  • brett75brett75 Posts: 8Member Listener
    This is my story, as a child I had ADHD but because they wasn't a diagnose of this in the 80's it was called a problem child. But now I have had many breakdown's with no help was under the metal help back in 2006-2010 but they taking me off it at my worst time in my life.
    I have a sort of autism because I can't deal with normal problem's easly an I am dyslexic I was first diagnosed in 1985 and then was re diagnosed in 1997. 
    But this year I have been screaming out for help after I have been put throw so much pain as in been taking off ESA in 2014 an pushed myself back into work in July 2015 till December 2015. An have lernt I need help an support because I have been pushed into different job's an endedicated up being ill.

    Starting off with chemical Burns in October 2015. We're the employer kept me working from 7pm then notify them of this reaction they made me work till 2am. An then fell seriously ill in December 2015 we're I had loads of test's done an they found out that my left kidney wasn't working. An this year I have had three intrusion operations two of them well operations one was to remove the left kidney and the second was to remove an abscess.
    After the second one I had to give last right's to a doctor about my father's health an because he was diagnosed with vascular dementia in January of this year. An I started having blackouts that the first one happened in the hospital on the morning they sent me out of the hospital. 
    Then after my third opp I was in pain an let me go because they told me that it would be better for me to be at home so I don't catch anything at the hospital. An I have been emotional scared because I have had to push for this third opp, an have felt that the treatment I received from the hospital wasn't to be talked about because it wasn't the most pleasant of time's. 

    But that was back in July an now we are coming upto October my body feels physically better but mentally unstable and I just can't seem to get the best situations day by day I'm feeling more withdrawn and scared of people but I just don't know what to do next in my life.
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @Topkitten

    I can hear that you are still really struggling with you mental and physical health. A while ago you talked about your son. I was just wondering what, if any support you are getting from him. Accessing services when you are agoraphobia is very difficult and I understand that having people visit you can make you very anxious. Perhaps this is something your son might be able to support you with?

    I think that Mind would be a really good place for you to access support. The Samaritans are very good, but you are right. They are just there to listen.

    Rebecca
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    My son means well but he doesn't really visit me, I have to go find him. At home the only help I get is from an Age UK cleaner I arranged long ago. I used to be OCD about cleaning and it depresses me that the house isn't as clean as it should be. I hardly get any visitors at all since MH discharged me over a year ago unless I arrange for a young escort to visit, which I do sometimes. However, since I had one try to take advantage of me that option isn't as thrilling as it used to be. I know there are other options but they aren't practical at the moment.

    I did contact a group called 'Health in Mind' to get more support in going out but they said I was too ill for them to cope with. They did refer me to a second level support but I stopped that option. There is no point going far down that route just yet for a very good reason.

    I have mentioned the surgery I need. Well, it is now desperately required because without it I am losing the functionality in my arms (again due to pain). The problem is that it is major surgery and carries risks, so I am terrified of actually having it. Then there is the recovery time. For 6-8 weeks (for a healthy, active person) I will be basically housebound. For someone like me this is likely to be 10-12 weeks. Having had almost identical surgery before this is likely to be the minimum time and quite possibly it will be longer. Not only do I lose access to the community but even my access to escorts will have to stop. I could pay them just to visit and chat but it's an expensive habit and I begrudge the cost for anything less than what I really need from them. Plus I would likely be tempted to do things I shouldn't far too early.

    On Monday, despite my fears, I will be pushing like mad to be kept in and get the surgery done within days. To be put off for weeks will be hard to get through but at least it would still be as an emergency so I could get called in at any time there is a space. If, however, they just put me on the waiting list I will not be able to cope for the 3-4 month waiting time.

    It is all catch-22. I will need support that has already been refused to get through recovery. It will require my family to pitch in to help, which they won't. It requires me to have something to look forward to, which I don't have. Even with all that if I don't put myself in that position then I have nothing at all to look forward to except more misery heaped upon misery.

    I really should just end it and get it all over with..... but I can't because I haven't allowed myself to be alone with nothing but stress to look forward to.

    I guess it's a coping mechanism. It's just so depressing that I'm not even allowing myself to be as miserable as possible to trigger another attempt, lol!

    Stupid or what?

    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.
  • sheilabelchersheilabelcher Posts: 5Member Listener
    edited October 2017
    Dear me @topkitten I do feel for you. However just wanted to assure you that although you have had a hard time with relationships and helpers, not everybody is like that. Some people thrive on helping others and in turn that gives their life purpose and meaning. At the end of the day we truly can only make ourselves happy. I was a very sad person for many years because of many different things  One day I realised that I and nobody else can make me happy.  So I just love looking after and helping people who need help. And in a little way I hope I  can change a few people's world. All the very best to you and never stop looking for that silver liningrey
     It is there somewhere!! Lots of love and hugs to you.  It sounds like that is what you need more than anything else! !
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I have posted elsewhere how I feel tonight. Basically I allowed myself to hope I would get help . What I got instead was the usual treatment. A doctor who couldn't be bothered to read my notes. Who wouldn't listen to me. Who was so arrogant that he professed that his minor issues were far more important than my life. He couldn't even be bothered to access the right x-rays to check whether what I said was true or not.

    I have slept for a while but basically each hour I'm alive is a massive struggle and tomorrow I need to start complaining just to get treated better. Seems little point in trying to keep going. Hope just makes things ten times worse.

    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.
  • RebeccaMHadvisorRebeccaMHadvisor Posts: 99Member Courageous
    Hi @Topkitten

    I can understand about you feeling trapped in a catch22 situation and your frustrations with the Doctor who you saw. Although I hear your worries about not being able to access the community it is really important that you take care of your physical health.

    I am wondering if during this time you feel that you could talk to the Samaritans or Mind for support?

    Rebecca
  • TopkittenTopkitten Posts: 1,008Member Pioneering
    I appreciate the reply Rebecca but what I need is help and support. The Samaritans, however well intentioned, cannot do either. Whilst MIND can they can only help with the MH side-effects of getting little, if any, support with my physical problems. It is a battle I have been fighting for years. I am tired of fighting to get treated fairly. I am tired of being in more pain than I am supposed to be. I am tired of being ignored and I am tired of being treated with disrespect,

    I am sick and tired of being sick and tired.

    I have spent more money than I can afford just to keep going for 7 weeks only to be told that maybe in a year I will be able to not drop things ALL the time and receive proper support for the intense pain I have recently been putting up with.

    It isn't just that I don't want to live any more. It's now becoming almost a necessity that I no longer be treated so badly. Maybe my death will shake up the system enough for others to be treated properly and with respect.

    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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