Things seem to be getting worse — Scope | Disability forum
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Things seem to be getting worse

Topkitten
Topkitten Community member Posts: 1,285 Pioneering
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.
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  • [Deleted User]
    [Deleted User] Posts: 740 Listener
    edited September 2017
    The user and all related content has been deleted.
  • Topkitten
    Topkitten Community member Posts: 1,285 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: 740 Listener
    The user and all related content has been deleted.
  • Topkitten
    Topkitten Community member Posts: 1,285 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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    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 jo@samaritans.org

    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_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    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
  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • thespiceman
    thespiceman Community member Posts: 6,388 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.
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  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • Matilda
    Matilda Community member Posts: 2,593 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: 126 Listener
    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









  • Topkitten
    Topkitten Community member Posts: 1,285 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: 126 Listener
    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?
  • Matilda
    Matilda Community member Posts: 2,593 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.
  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • Topkitten
    Topkitten Community member Posts: 1,285 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: 126 Listener
    @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

  • Topkitten
    Topkitten Community member Posts: 1,285 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.
  • Barrylad1957
    Barrylad1957 Community member Posts: 99 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.

Brightness