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Things seem to be getting worse

TopkittenTopkitten Posts: 1,003Member Pioneering
edited September 2017 in Invisible impairments
Recently I finally received some money from mum's estate which is complicating all my benefit situations. Having to go through all this I decided to treat myself and my son to a trip abroad. We selected 3 days in Tuscany, Italy. It was a chance for me to discover the problems I could face in navigating airports and flights.

We had a great time but arrived back tired and irritable. We almost made it through ok but right near the end it went wrong. We got back from Italy and had to use a bus to get back to my car. Knowing the drive home would be difficult I didn't deal with the bus situation properly. Instead of turning the electric scooter round as we did on the way out I decided to reverse the slope. Turning would have been complicated as there was very little room to do so and a large scooter would have been impossible. Then disaster struck. The incline of the ramp provided was too steep. As I reversed down the front of the scooter rose into the air and I was thrown onto the ground. Only my son's intervention saved me from having the overturning scooter landing on top of me.

As I struck the ground a part of the armrest jammed into my lower back. My left elbow contacted the ground next followed by the back of my head. I could not anticipate or reduce the impact force.

Fortunately I always wear a hat which saved my head from damage. I skinned my left elbow badly even inside a long sleeved leather coat. It seems though that the lower body impact was extremely hard. I had to lay on the cold ground for well over an hour unable to move my body with any significance without feeling extreme pain. Eventually an ambulance arrived and I was taken to A&E. X-rays were taken of my hips and lower spine and fortunately nothing appeared damaged. I was still unable to move about with even my normal reduced abilities so I was moved through to CDU and kept in for the rest of the night. In the morning tests showed blood in my urine so a further test was run, a CT scan. Fortunately the blood cleared up but he CT scan showed a spinal fracture which is what caused the intense pain.

Already severely under medicated I am now in an even worse state. I fortunately already have an appointment with an Orthopaedic specialist in 2 weeks or I would have had a long wait. What I will have to do is go to my surgery and not only have to fight for medication I should already be on but now I have given them an excuse to make it temporary. I am terrified of going to the surgery, this just makes things worse. It would be just so much easier to find a way out of the whole business.

I just wish that, for once, good things would stay good and bad things would stay away.

Does anyone else have things go so wrong?

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.

Replies

  • [Deleted User][Deleted User] Posts: 689 Listener
    edited September 2017
    The user and all related content has been deleted.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I am not surprised that your epilepsy medication caused issues. Doctors often prescribe medication simply because it sometimes helps others.

    A young lady I knew has epilepsy and had no problems for years. However, because the medication was old, her doctor changed it for another and she began to have seizures and lapses. I realised immediately it was the medication having seen so many side-effect issues with other medications before but the doctors had a procedure to follow. The lady herself got quite angry with me for arguing with the doctors. For the next 2 years they upped and downed the medication but no matter how they altered it the problems continued. After 18 months the lady herself apologised to me and asked how she could get the doctors to take her off it altogether. With both of us working at it and with their ideas running out they finally put her on something else and the seizures and lapses stopped almost immediately. The doctors just follow specific procedures, often without applying any common sense, until they exhaust all the possibilities. They also seem to disregard the patients situation and how disruptive their interference can be.

    I don't see that as beneficial to the patient.

    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: 1,003Member Pioneering
    I have been too ill for too long and too badly treated to look on the bright side any more. I don't really have a bright side any way.

    I'm not doing well though. As if the constant spasms of pain weren't bad enough I seem to have picked up a cold while I was away. Every cough and sneeze is agony. The bruising still hasn't come to the surface and I still have a week to wait before seeing the specialist. It's bad enough struggling with suicidal thoughts every day without this extra pressure. Most of the time I hover between crying and reaching for a bottle of pills.

    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 are a member of our community and we appreciate you.

    If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected]

    You might also benefit from reading MIND’s information on how you can help yourself:

    http://www.mind.org.uk/information-support/types-of-mental-health-problems/suicidal-feelings/how-can-i-help-myself/

    If you feel that you may be an immediate danger to yourself, please call 999 or go to your local hospital right away.


    Scope
    Senior online community officer
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Mind say:
    Getting help in an emergency
    If you don't feel you can keep yourself safe right now, seek immediate help.
    • go to any hospital A&E department (sometimes known as the emergency department)
    • call 999 and ask for an ambulance if you can't get to A&E
    • ask someone else to contact 999 for you or take you to A&E immediately
    If you need some support right now, but don't want to go to A&E, here are some other options for you to try:
    • contact the Samaritans on freephone 116 123, they're open 24 hours and are there to listen
    • contact your local crisis team
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I have been suicidal for 7 years and in immediate danger for over 3, both non-stop every day. Mental Health have consistently refused to help. I did call 111 last night and I had a call back from a doctor quite quickly. She was absolutely useless. On being told I could hardly move she said they could not help with the pain and that I should go to my doctor or A&E if I felt like it.

    I have been ignored and refused help so many times that I know the procedures off by heart. I have overdosed for pain over a dozen times and overdosed for death 5 or 6. Put myself in an 8 day coma last year. Still nobody cares enough to 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.
  • thespicemanthespiceman Posts: 5,327Community champion Disability Gamechanger
    Hello everybody and I am sorry things are not good.  I do understand I feel I am related to Victor Meldrew or Frank Spencer.  Everything I touch or do just turns to failure and heart ache.  I have some good days but these are out numbered by the bad.  It is the annoying little things from buttons on clothes to going out and meeting people who are trying to rush you at every step of the way.  As Frank Sinatra says lets take it nice and easy.  Stress and hassle all the way there and back.  Anxiety plays a part and end up becoming worse.  Especially the physical side of my disability.  What is going on? Lately in this increasing modern world I do not understand and get frustrated.  I wish people had more time for each other.  When I was young had every little scrape and broke many bones and had really bad injuries from accidents and mishaps.  Now being older I worry about my health as I age.  Not forgetting as I age the world is changing I struggle to cope.  The fear of hidden costs for everyday health care.  I will have to bite my lip and get a grip and fight on.  The one good thing is I have a support from a mental health charity and a doctor who is kind and caring.  Went yesterday review told her about what is happening.  First time I know it is hard and I had my fair share of misery.  I have to stop and try to move on.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Because the pain kept me awake almost all night before dozing off in my chair I couldn't get through to a GP. My usual surgery has a really obnoxious and unhelpful receptionist who was true to form. As my surgery is a multiple group I also tried the main surgery. They could only offer me an appointment tomorrow. I don't know what else I can do.

    Apart from a few biscuits I haven't eaten since yesterday lunch time and only had coffee today because my cleaner made one for me. Every time I get up the pain is atrocious and then, even if I sit back down, takes an hour or two to go down to comfortable levels again.

    I'll either get through the day or take an overdose and most likely end up in A&E. Maybe a coin toss would be the best way to decide.

    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.
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    @Topkitten

    Why won't your GP give you the medication you need? Perhaps the orthopaedic surgeon will prescribe some.
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    Hey TK.

    I can see (I noticed you've posted on a few threads recently) that you are really struggling right now, and that others have already mentioned resources and organisations who support people feeling suicidal so I shan't repeat that here.  You said you were offered a GP appointment tomorrow; did you book it? 

    Suicidal feeling or ideation is often consequence of a mental health condition, and it sounds like you've had some involvement with mental health services already.  I work on Scope's helpline, and I've come to appreciate that for lots of people living with a physical condition - particularly one that causes immense pain - they feel that mental health services are less equipped with effective tools to support them.  Where a mental health condition has arisen in relation to a 'primary' diagnosis that is physical it can be difficult to know how to proceed...   To quote one caller I spoke to recently, 'No amount of "re-balancing my perspective" is going to remove my pain'.  

    I also know that people living with conditions that cause them immense pain are some of the most emotionally resilient and resourceful individuals out there.  I'm sure that goes for you too - you have been living with pain for a few years now I believe? You must have years of practise at getting from one day to the next, even when things seem impossible, or when you've hit a wall.

    There will be others reading through this thread now, and also at some point in the future (many of the threads on the online community continue to get lots of views years after the discussion happened!) who are standing where you are right now.  Who have not had success with the health services they're in touch with, for whom medication is ineffective, and for whom hope is a fading light.  There are, and there will be people reading this thread who are completely at the end of their tether and balancing on a knife edge (or on the toss of a coin..)  and wondering how they can get themselves through this moment of despair. 

    As someone who has a lot of past experience of this moment, and hopefully a little time to spare, I was wondering whether you could share with us some of the different strategies for coping that have been effective for you in the past. 

    What has worked, how why do you think it helped, and what definitely didn't work at all?  

    -Rosie









  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Orthopaedics are dealing with a disk in my neck. The Chronic Pain is from multiple lower spine disks. They will not cross over, something stupid about ethics.

    GP's seem frightened to deal with the Chronic Pain issue as I am on such high levels of medication already. It has taken me 18 months to get the patches increased despite the pain increasing every 2-3 months. I am now on Fentanyl patches at 100 micrograms per hour. This is roughly 5 times the medication levels for non-terminal Cancer patients. I do take tablets but that's fairly ineffective except for the Pregabalin which helps me cope with the neurological damage. An unfortunate side-effect is to reduce the effectiveness of the Fentanyl.

    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: 0 Pioneering
    wow, quite the cocktail then! Have you ever been offered a pain management programme ?  If so - did you get any support on how to manage emotions related to long-term pain?  What were the main points?
  • MatildaMatilda Posts: 2,616Member Disability Gamechanger
    @Topkitten

    Have you tried freeze spray? I find it helps for rheumatoid arthritis and calf cramps. I get through between one and two cans a day, though.
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Thanks for the post Rosie. Made me think. I was diagnosed in 2006 but had problems from it going back to 2003 that I know about and maybe earlier but those incidents are not so sure.

    When I feel really bad and think there is no hope at all I try to sleep. Even a short sleep can help. Partly because the pain levels drop due to lying down and partly because I give myself time and think of things to try or reasons to keep going. It's usually when I can't sleep that the danger grows too large and I succumb.

    I don't know whether my high IQ helps or whether my body is just different but I have shrugged off some very dangerous tablet combinations and attempts to cut myself. I even had a BP of 240/160 which caused no damage.

    I don't know if everyone can do it but I mentally shut some of the pain off thus allowing myself to do some stuff I shouldn't be able at the cost of suffering more later. It doesn't help with the problems but it does allow me to be partly the person I used to be when things were fine.

    I guess partly it's stubbornness in that there have been times when I have stuck around just to spite people that have caused me problems or issues so that I can continue to make their life difficult too.

    One big factor at the last gasp, so to speak, is remembering waking up in ITU (Intensive Therapy Unit) after putting myself into a coma last year. I promised my kids and myself that I would never end up there again. The staff were lovely and helpful and the place itself is fine but having to use nappies and having a catheter in place is not pretty. Recovering from a coma is also not nice. Most people are brought out after a day or two. Because I was in it for 8 days there were muscle issues to contend with. The only plus was that being horizontal for that amount of time took absolutely ALL my pain away until I got up and started walking again.

    The Samaritans provide a very good service and have talked me into calling for help when I had taken an overdose and was determined not too call. It usually depresses me more though because I have to relate everything that is wrong and there is so much of it.

    At a much earlier point there are other things. One day a week I go to a group run by MIND that only amounts to cups of tea and chatting to other sufferers. I can still drive almost as well as ever so sometimes I just go out in the car for a drive. Sometimes I drive to Costa and have a coffee and a cake. I have also joined a Bridge Club which gets me out of the house 1 day a week but was very difficult to start with due to the Agoraphobia. I have also used the Meetup website to find some things to do at weekends. Again this has been difficult but I persevered and now meet people this way once or twice a week. I guess a lot of little things have also helped just to prove to myself that I am not helpless even if it meant I suffered more afterwards. It's only extra pain after all and I am used to pain.

    A couple of years ago I was desperately bad because I no longer felt like a man. I was seeing a private therapist at the time and discussed the idea of seeing an escort. I was surprised that she encouraged me and so saw 2 ladies. It was very difficult indeed because it was meeting with a stranger and because sex was involved. Fortunately both experiences were very positive and gave me back a belief in myself as a man. I have been doing this again recently as mum's estate was finally settled. More recently I have had issues with a couple of ladies trying to take advantage of me but generally it has helped. It's not for everyone though even using the 'safe' site I use. It can be expensive too.

    I have considered helping other disabled myself, especially if they can't afford proper escorts. I am quite experienced in that area and am very good at getting along with people. Certainly I have been teaching some escorts both in techniques and in dealing with disability. I will most likely never do anything about it though because it is really a young persons line of work and a guy my age isn't very desirable. Plus I have no idea how to go about it. However, as I have so much time and so little to do having ideas like that and thinking them through takes my mind off my problems, at least temporarily. I recently came up with a theory of scientifically explaining friendship and love that kept me busy for a week, lol!

    All in all there are many little things people can do to try to head off the bad times early and a number of things that can be done to distract yourself even when things are bad. It's really a matter of trying things out and seeing what works for the individual.

    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: 1,003Member Pioneering
    A freeze spray is really for muscular issues. All my pain and problems are nerve related so it's difficult to see how it might help. Plus it's referred pain so the pain isn't where the damage is being done.

    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: 1,003Member Pioneering
    I was under the Pain Clinic for 5 years and am now under them again. Unfortunately as my problem is so unique they are only just so much help. Some of the courses have been useful 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.
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    @Topkitten Good morning! 

    Thanks for the response - you've shared some really interesting points!  Hope you managed to get to the docs this morning.

    so, to summarise - things that pull you back from the edge:

    - Going to sleep
    - mentally 'shutting off' the pain
    - resolving yourself to stick around to spite people(!)
    - Remembering the consequences of previous attempts and the impact on your loved ones
    - Contacting the Samaritans

    and things that keep you going day-to-day:

    - tea and chat at your local Mind group
    - Trips in the car to costa for a slice of cake
    - playing bridge at your local bridge club
    - Talking to a therapist
    - maintaining an active sex life
    - spending time thinking through more abstract ideas and devising solutions to problems


    You mention you're agorophobic and have struggled to get out and about due to this.  What helps you push through it?  We speak to a fair few people living with agorophobia on the helpline and it would be brilliant to find out how you manage to keep on top of it.

    -Rosie

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    The Agoraphobia? To be honest I'm not sure.

    I think some of it comes down to stubbornness in that I get determined not to back away no matter how bad I feel. It does help that I have always been a confident person. I know I can talk to people and make friends. In fact when I get nervous I talk more than ever, lol!

    The Bridge club was fairly easy because It is held in the same place as the MIND group which I have been going to for years. As for the Meetup groups. I had been doing a little shopping at a couple of stores by going between 9pm and 10pm when the places were fairly empty and I was using the scooter which makes me feel safer somehow. Of course, when it came to walking into a busy pub I just walked in, deliberately not thinking anything and not giving myself time to think. Once inside I didn't want to look like a fool so screwed up my courage to stick it out. This may not work for others because it requires strong will power and, as I said, a fair amount of stubbornness.

    Other things I have done (like using the occasional taxi) have relied on using the scooter or deliberately getting cold, being in pain or similar to become angry enough at myself to cope.

    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.
  • Barrylad1957Barrylad1957 Posts: 100Member Courageous
    Hiya @Topkitten
    Sorry to hear that you are in such a dreadful place at the moment mate, its obvious that youre in a load of pain, and suffering a great deal, and I feel for you, as do obviously a lot of people who have chatted with you on here. You refer a lot to the bleak overview you have of your future, that for instance, if all there is to look forward to is pain, etc., not being able to see the point in carrying on, and suchlike, and its obvious that you are near the end of your tether. You and I do not know each other, and please forgive me if it sounds like I'm nosey, but the way you talk reminds me of how my brother was feeling and talking during what proved to be the final days of his life.
    If you don't mind me sharing something personal with you, the decision he made on the last day of his life has caused his children, me, and my children, our siblings, and all who loved him almost irreparable damage; Inner thoughts that he wasn't loved, that he could not function as a family man any more, that he had nothing to offer, drowned out our protestations to the contrary, and in the end, Paul chose to believe the voices of those thoughts over ours. The way in which we functioned as a close and happy family ended on that day, and our family has never actually recovered from it. To add insult to injury, an improved treatment for his condition became available on the nhs just 7 months following the event.
    In your recent posts, you've referred to yourself as 'a family man', that you were with your son at the airport when you had your runaway chair incident? That means, that whatever you may think now, you do have people who love you, that would miss you terribly if anything bad were to befall you, and, (as has happened to me), they could become very unwell themselves as a result. Please listen to all the advice youre getting on here TK, and act upon it if you can. If you can find a pharmaceutical or surgical solution to your pain, and improve the quality of your life, it will, at the worst, be far better than throwing a hand grenade into the midst of the ones who love you. Salvation may be just a change of GP surgery away, perhaps?
    Hold on, mate.
  • TopkittenTopkitten Posts: 1,003Member 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.
  • thespicemanthespiceman Posts: 5,327Community champion 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.
  • TopkittenTopkitten Posts: 1,003Member 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.
  • TopkittenTopkitten Posts: 1,003Member 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.
  • thespicemanthespiceman Posts: 5,327Community champion 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.
  • TopkittenTopkitten Posts: 1,003Member 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.
  • thespicemanthespiceman Posts: 5,327Community champion 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.
  • TopkittenTopkitten Posts: 1,003Member 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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