My life is now over — Scope | Disability forum
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My life is now over

Topkitten
Topkitten Community member Posts: 1,285 Pioneering
Apologies if this is in the wrong place but I cannot think straight.

Since late last year things have gone from worse to no hope left. For 6 months I argued over and over with my GP for my meds to keep pace with my condition and was either ignored or given lip service. 4 months ago I became housebound and then finally the GP told me he would not increase the meds as I was at the guideline limit. I had no time at all to prepare for this. It took 2 months to get a referral to OT so I had proof I need a wheelchair suitable home. They informed me I would have to wait 15 weeks for an appointment. That was 2 months ago. Today I received a letter from OT cancelling my appointment and apologising for not contacting me sooner or any other way as they were not given the correct contact information. It also means the OT referral was done on the wrong grounds and with incorrect details. As it was I estimated it would be early next year at best before I could hope to be in appropriate accommodation. Now I am back where I first started and it hasn't helped having to transfer from DLA to PIP during this period as well. I am still waiting for an answer on that one.

I have no hope left.

The surgery has let me down in every possible way and I have only one way out. I have tried telling MH that my suicidal tendencies are going through the roof and was ignored. I have said the same thing to more than half a dozen ambulance crews, a police team and A&E and was also ignored. I have dealt with 4 different GP's and spoken to the Practice Manager with no effect.

This is not a snap decision. I have gone through with people every possible point of contact and I have contacted them all at some point. There is no one else to try. Talking to a therapist or the Samaritans is only useful if it reminds you of something you missed. I haven't missed anything.

I haven't seen or heard from any of my children for 3 months, so I will get no help there.

My condition is so unique no one knows how to treat it and no one is prepared to risk helping in case they get something wrong.

I have no hope of finding any way out of this so now I just have to figure what method I am still capable of using and then carrying it out. Ending my life is all I have left.

I would like to thank people here for the support I have been given but now there is no support or way of moving forward that will let me be a person again. I have rung the surgery and told them where they failed me and what I intend to do.

No amount of talking will help or allow me to change my decision. There really aren't any options left.

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.

Comments

  • jade54
    jade54 Community member Posts: 10 Connected
    Oh my goodness what an awful time you're having.
    I know everyone's health conditions are unique and coping strategies are also individual.
    Four years I had to wait for my life saving surgery. The obstacles I had to jump unbelievable.
    Step one write to your GP then same copy to medical ombudsman .
    The occupational therapist again go to the ombudsman. 
    Everything is controlled by NHS choices  .
    Life is a gift I know when you hit a wall everything is bleak.
    Stay strong. 
  • Alex
    Alex Posts: 1,305 Pioneering
    Hi @Topkitten

    I know you've heard this from our team before - but we really would encourage you to continue to seek help. Call 999 or go to your local hospital right away. If you don't feel able - I can do that for you - just private message or email me your details.

    You are a member of our community and we appreciate you. We will always be here to listen.
  • Ladyshippers
    Ladyshippers Community member Posts: 2 Listener
    I hope you're still there. I'm so sorry for what you've gone through and are going through. Please hold on. Please reach out for help. You are strong to have kept going, so I hope you are there. I pray you get help. I pray you are heard. 

    I came on here to ask for advice on bidet seats. Hardly crucial.

     I saw your post and had to read it and see if you have any responses. I'm worried that you haven't replied to the ones I found.

     My worry doesn't matter. I don't feel I have any wise words but perhaps someone else does.

     Change is inevitable so I hope change for you is good. I hope you can hold on. 

    Please take care of yourself as best you can. 

    Helen
  • jane1973
    jane1973 Community member Posts: 175 Pioneering
    @Topkitten please make contact with someone to let us know you are still here, we feel for you and I am sure there must be someone here who can guide you, don’t give up, you have a lot of courage to reach out and say how you felt, that’s got to be the first step there’s many more for you yet, hold on be strong xxxx
    Hugz to everyone xx
  • Mumof2ds
    Mumof2ds Community member Posts: 147 Pioneering
    @Topkitten.

    Just catching up on threads. Please, please listen, we are here for you, where the system seemed to have let you down, Today is a new day, hang on in there, and please let admin or someone else know you are ok. 

    We are collectively thinking of you. P XX ?
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • cracker
    cracker Community member Posts: 324 Pioneering
    I have felt that way, too, as doubtless many of us have. Your situation is truly dreadful. But remember you do have support here. And you might find a way. I would go straight to the top of the government and also get some publicity if you can.

    These are just words, I know. But heart-felt ones. Can ;you go into hospital? Here, suicidal intention is immediately taken up by mental health professionals.

    I do send you wishes strength and  perhaps a faith that thing will get better.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    At the moment I am still around. It will take time, in my current condition, to carry out what I need to. I have explained over and over to the people I am supposed to get help from for the last year that I am in crisis and this is what has happened.....

    For 6 months my GP refused to increase my medication until I was finally housebound then increased so little that it made no difference and then told me no increases would happen from then on and he would not work with me in even trying. Two other GP's said they would help but after discussing with him said no as did another doctor who was doing something regarding the Pain Clinic.

    I have been referred to Social Care for immediate assessment 13 times in the last 6 months. When contacted by a professional they state I have been assigned a Social Worker but to me they said I hadn't. The last time I contacted them they said I didn't need one. My complaint got one into trouble which they promptly covered up by lying about me and my condition. I will never be allowed one or get an assessment until the woman who runs it doesn't any more.

    I have averaged an ambulance a week via the 111 service over the last 6 months (3 in the last week). Each time they send reports to my GP, to Social Care and to MH. None have been acted on.

    I went to A&E 3 months ago but was refused help other than to be sent home once they were sure the medication had worn off. The hospital refuse to help in any way.

    I have contacted MH 4 times over the last 3 months only getting one assessment that said it was up to the GP.

    I contacted NHS England 3 times only to be told there was nothing they could do except raise an official complaint. Last time I did that I got deregistered and cannot go through that again. I have used 6 different surgeries in the last 3 years (kicked out of 2) and I am on the last one in the area.

    An ambulance crew last Wednesday arranged for someone from MH at the hospital to call in to see me on Thursday. They never arrived and not contacted me since.

    I was referred to the Pain Clinic and immediately discharged once I told them I was housebound.

    I have lost count of the times I have tried to contact or get help from GP's but since I told them I intend to kill myself soon they have not contacted me in any way (2 weeks since I informed them).

    I have explained in great and logical detail to everyone concerned the following....

    My situation is completely impossible. Even if the medication was put in place now, without the GP support, in 6 months I will be back where I am now as I get worse every 2-3 months. I get no help at home. I cannot cope with the side-effects of the medication running out for 2 of the 3 days the patches are supposed to last as, for some reason, my skin allows me to exhaust them in 24 hours rather than 72. Even with the medication on day 1, walking sets my leg on fire (or so it feels), days 2 and 3 are much worse. Without the medication I cannot even lie down and not be in terrible pain if all I do is move (for example taking a drink from a glass). I barely eat and haven't washed or showered in 4 months and carers would not help with the showering anyway, being upright is almost as painful as walking especially as I have to walk to the shower and back. It would take 6 months to get back to where I was with the OT report and without it I cannot move to somewhere wheelchair accessible and I cannot cope with 3 days let alone 6 months. Even then it would still take ages to find somewhere. Even using a wheelchair is painful, just less so than walking.

    The only way I am even remotely getting by is to change the patches on day 6 as they will always release some medication (I have explained the osmotic process to doctor's but they don't understand, they still think it stops after 3 days). On day 1 I cannot eat or drink anything hot as the build-up of medication destroys my body's temperature control and I sweat so profusely that I am soaked through all day. Days 2 and 3 are spent mostly asleep with the pain starting on day 3 as do the sneezing fits (12 consecutive violent and painful sneezes repeating every few hours). I am too out of it to change the patches before day 4 anyway. Days 4, 5 and 6 are just increasing pain, less movement and less food and drink (sneezing ends on day 5). By the end of day 6 the pain is so intense I have to reapply patches even if I do nothing except sit in my chair (not even going to the toilet).

    As I continue to get worse this process will accelerate and there are no circumstances in which I will get more medication to try to cope.

    There is no emotion in my decision it is purely logical. In answer to those that say "contact someone".... I have contacted everyone possible and no help is forthcoming, not now, not ever. There is no surgical option and now no medication option either. There isn't anything to discuss and no one left to discuss it with. I have been threatened with being sectioned and when I said "Yes, please!", the woman almost ran away from me (left very quickly). No one wants to take responsibility for something they don't understand and don't know how to treat.

    I am wasting the money my mum left me and getting absolutely no benefit. I should let my children have it. Another logical reason to go.

    People attach too much importance to life "at any cost" and personally I think it's a bad thing. Almost every reason I have heard people give for wanting to die sound pathetic and I wish I could make them understand just how bad things really can get because they would then not do so. However, in my case, the only viable option is death. I do not fear it, I only fear the possibility of the pain it might cause and mucking it up and being worse off. Not physically or pain wise but less able to try again wise. I don't understand why I cannot get others to understand just how hopeless my position is and, if I were a pet, I would have been "put down" long ago. We don't do that though, do we? We make people suffer misery and pain long after there is any choice.

    Why should I not be allowed to go peacefully and with some dignity and with no pain? Without any other options then any method I do use could involve others and make them feel bad for being involved as they would never be told the whole story.

    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: 90 Listener
    the fact you are on here teling us is a cry for help?think about it ?????
  • [Deleted User]
    [Deleted User] Posts: 24 Listener
    The user and all related content has been deleted.
  • cracker
    cracker Community member Posts: 324 Pioneering
    I am in and out of your place and find myself making preparations for that or dying from the illness. I have a counselor with whom I have discussed suicide, and she says "I understand and would not blame you." Here, we have Assisted Suicide - if you are terminal or suffering with no hope in sight, a doctor will administer an injection to ease you out. You must have less than 6 months to live (in the physician's opinion).

    Yet no physician can understand that life can be a burden and that death may be a great relief.

    I do so wish you could be helped. Do you have any facility where you might be care for, your pain and medications cared for? Living alone in your circumstances is all to hard.

    My heart goes out to you.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Ty for the replies.....

    Why did I post this? Easy answer really... I had to tell someone and a few people know me and others care and this is the only place I am accepted as I am.

    I did try medication ..... again ..... last week but as before I just slept it off afterwards. I didn't call for help though, and that was different. I am very OCD and calling 111 for help as I have been instructed to, even if I don't want to, is very hard for me to ignore. However, my body seems to just shrug off too much medication. I suppose that's a good thing for a healthy person, just not for me as I am now.

    Any further attempts would involve pain and suffering and although I did start that process I ended up calling 111 as usual. I don't think I can cope with a violent ending.

    Ofc there are one or two options that could keep me going, for a while anyway, but it always depends on one group or another providing me with assistance. Re-instating the surgery I lost due to ineptitude would help as would a doctor being prepared to put in a little time and effort to work with me on medication is another. Having neither option and having had my own self-sufficiency taken away due to incompetence has left me where I am as I need to be in a wheelchair indoors now and I cannot do that here. All these options are too far away for me to cope though.

    I took too much medication (cannot recommend this btw) twice last week and ended up in hospital Sunday. I was given no help with the pain as they were only worried about dehydration. When they put me on a ward I flipped after a few hours due to my MH issues and walked out of hospital. I only have to wait until Thursday to be assessed again by MH but I am already finding it difficult to not try again and I suspect that they will once again blame it on the GP and not help, as they always have done. The problems I suffer no one wants to own and take responsibility for and I am left to suffer.

    I thank people for their concerns and I only blame myself for believing in a system that doesn't work.

    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.
  • cracker
    cracker Community member Posts: 324 Pioneering
    I am glad you are trying again. Don't give up. I think there is an answer out there for you.

    Here, I would contact my Senator or the very highest-ups in the Department of Health. Can you do that - would your representative in the House support you? What you are going through should b e made public, I believe. It's just mistreatment to leave someone suffering and without help.

    Let us know what you find. Do keep at it, we are here for you.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    I said before I have tried every possible contact and that includes the Minister of Parliament (our so called Government). From the MP their first response was to go see him at a meeting despite having already said I couldn't attend one. When I replied to that effect there was a long delay followed by a "referred back to internal complaints procedure". Ofc the complaints procedure had already claimed to be doing a greatly successful job of supporting me already and ignored it. When I replied to that effect I never heard anything else, presumably they figured they had done enough as well.

    I have also contacted every possible complaints procedure for the GP surgery, for the hospital, for Social Care and for anyone else I could think of at the time. The one thing I haven't done is to contact and make an actual complaint against the GP surgery and that is because when I did that for a different surgery in the past they kicked me out. I am on the last possible surgery and couldn't go through the process of joining another (if there was one) being housebound and that would also mean an interruption of medication. Too much risk.

    I do appreciate the idea @cracker and ty for the support. I have managed to get through last night by going for a drive in the car (while I still have it), even though I know I will suffer today and maybe tomorrow as well, but it made me fell human at least a little. I even ordered in Pizza for when I got back which is odd really as I rarely eat much these days. The lack of food has caused more weight loss and even my gums have shrunk so my false teeth don't fit properly, lol!

    I really am a wreck these days. :disappointed:

    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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Im sorry you are having such a tough time @Topkitten

    Scope
    Senior online community officer

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