Undiagnosed and rare conditions
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For me, what is... The meaning of life?

TopkittenTopkitten Member Posts: 1,263 Pioneering
Apologies, this came out much longer than I expected.

Some may remember my story up until some months ago anyway but for those that don't......

The discs between the bones in my spine are ageing and collapsing at roughly double the normal rate. Specialists have never heard of it so obviously GP's haven't either. I have been having problems with Chronic Pain since 2003 but the cause wasn't diagnosed until 2004 and the operation to correct the problem in 2005 seems to have merely accelerated the problem. In 2004 one disc was discovered and, in 2006 after it was fused, two more were found. The current count is 9 or 10 but I cannot be sure as it only shows on an MRI and the last was 2 years ago and they have no intention of running any more let alone trying to treat them. Around 3 years ago I started suffering much more serious pain in one leg which turned out to be Neural Pain caused by the constant damaging of the nerves within the spine. Currently my right leg is 25% normal, 25% numb, 25% in various stages of pins and needles before joining option 1 or 2 and the remaining simply reports searing burning pain whenever stimulated (moving the leg or any part of it, putting weight on it, touching it, etc.). Until last April I was continuing to walk and/or use a wheelchair or scooter as necessary but then the underside of the foot became affected so now getting about is minimal and I am classed as housebound. I am not yet completely wheelchair or bed bound but am forced to keep movement to an absolute minimum as much as possible or endure excruciating pain. The condition is progressive and accelerating and gets worse every 2-3 months. It used to be small changes with the odd large change but that has reversed to mostly large changes now.

What is a person's private hell?

I guess that for some it's the inability to perform or take part in something they would like to but haven't been able to since birth. For me it is different. In my 20's I played squash and got into the top 15 of the best club in Essex. I had to downgrade that to football which I played until I was about 40. I then downgraded again firstly to 10-pin bowling then pool, darts and bridge. Apart from the football and bridge I ran teams and organised matches. I also earned trophies for football, 10-pin bowling, pool, darts and bridge, not that I was ever great at them but just fairly good at everything. Usually I was just a runner up or long time participant. Obviously none of these am I able to take part in any longer and I spend my time in a recliner chair in front of the TV trying to decide whether I will put up with the pain to make a coffee let alone a meal (which I mostly skip). Lack of eating has led to a large loss in weight dropping from 23.5 stone to 13 stone. I live alone and haven't had even as much as a date since my partner walked out in 2005.

Superficially I look ok until I walk and I have always looked younger than my age (by as much as 15 years latterly) ever since I turned 18. At times I have had women try to attach themselves to me (one or two really trying hard) but I have always resisted as it wouldn't be fair to put someone through it when they simply cannot understand and have hope of some solution (which there won't be in my lifetime).

I miss the person I was and my 3 children miss him too and cannot cope with me as I am having gone from the head of the family to a sideshow. Consequently I see my eldest daughter 4 times a year and her 2 children 3 times, each time for an hour or so. My younger daughter has spoken to me once in 4 years (when I came out of a coma) and had a daughter a week or so ago (I found out by looking her up on Facebook). My youngest is a boy who has finally made a desperate plea for me to keep going and he would try to help but, as usual, his good intentions only last a few weeks before dropping back to a visit every month or two. I don't qualify for care as my mum left me her savings and I cannot seem to get replies from the web sites I have tried out looking for a PA. An elderly lady is my only regular visitor who I pay for to visit for an hour 3 times a week as she can't really manage more and originally just my cleaner.

I should be in wheelchair accessible accommodation and I asked for an assessment in April 2018 and it was carried out 2 weeks ago and OT finally agree but I do not think I can manage to move now let alone in the 6 months to a year it will take to get a new Council house. I have hung onto my Motability vehicle hoping to get such a decision but am now supposed to give it up and it certainly isn't worth getting another until I have moved and know I will use it more than the once every month or two I have used it the last year (and that was only to see how quickly I am getting worse).

When things go wrong I simply cannot function at all so I am building up a mass of things to do and stuff to file. I haven't been able to answer the last 2 communications about ESA because of Anxiety nor have I been able to contact Motability about the car or apply to move and even the confirmation letter from OT didn't include the 'included' report and I can't call them either. People have suggested an Advocate but I have heard a few bad stories plus I have had bad experiences with One Support.

I have been suicidal for 5 years and tried many times to end things (hence the coma) but now feel I can't let my son down which just makes me more miserable than ever. Hence I don't come here much now so I don't 'infect' others. I can't remember the last positive thing that happened to me.

In some ways I wish I had always been ill then I'd have nothing to be disappointed about. Instead I just spend all my days being disappointed with myself for being so ?????? useless.

"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 Member Posts: 6,408 Disability Gamechanger

    Hello @Topkitten Sorry to hear this..

    For years I concentrated on my disability not realising my mental health was effecting my physical health.

    Having an addiction, plus anxiety, depression combined effected my physical health.

    Always throwing stones in my path.

    I shared this with you because it did many of the issues and problems disappeared. Still have mental health issues but it is some days difficult.

    Yet do know how to deal with it. Through coping methods and strategies. 

    Found the doors closing so many times..

    Not easy. I am a proud polite gentleman.

    Got rid of addiction became a new person. That I am now. Taken me thirty years plus to sort myself out.

    Used this charity please consider it might be helpful, useful and maybe a lot more stones be removed.


    You can self refer no need for Doctor.

    I used this one because it all changed for me . Spent too long concentrating on the disability not the mental health.

    Lots of signposting, guide, advice please I hope this does help.

    I know apologise for going on a lot just have been there so many times.

    Now spend more time helping those who like my self need a helping hand.

    Take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    edited March 2019
    Hi @Topkitten thank you for sharing this with us, how are you doing today? I am sorry to hear this, please feel free to come on the community and we will be happy to hear from you. Please do not feel like you're 'infecting' others, we are all here to support you. There are some organisations you may want to get in contact with, for people with long term pain:

    Are you getting any emotional support regarding your mental wellbeing? You may want to contact your local CAB for support for the ESA. Please keep us updated :) If you have any questions please let us know. :)
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Thanks for the replies.

    It took a couple of years to be taken seriously, referred to the pain clinic and seen whereupon I was put through a series of courses designed to help me cope with the pain. However, all support of serious pain assumes a static situation with flare up's. My progressive condition and resultant extrapolation simply doesn't fit the mold. Also, whilst in discussion with others I believe I understand the cause of flare up's I have no way to really communicate it effectively as the health professionals dismiss me as untrained. Personally I believe my suffering gives me a unique perspective on the subject whilst being sufficiently intelligent enough to understand and having had sufficient chemical expertise in my past to understand testing and discovering procedures.

    Anyway...... things have taken another downturn for two reasons. Firstly my condition has changed again and though the right leg is mostly unchanged the condition has spread further into my left leg too. Not yet painful in the left it remains as a sign of things to come. I will retain the ability to walk for not much longer. More importantly I have had medication problems again as the Pregabalin (the main protector against nerve pain) which is already at a low level has accumulated in my system and caused major problems. It appears I am unable to excrete the drug sufficiently and it's accumulation gives me overdose issues.

    Of course nothing for me is ever simple and a trip to the hospital gave me no assistance. Orthopedics refused to see me, the pain team to manage more pain with less medication and Mental Health decided the pain was all in my mind (another misdiagnosis). I discharged myself due to stress, anxiety and paranoia. Without surgery and with only direction I had already worked out I am trying to manage but am not doing well.

    Talk about being kicked when a person is down.

    "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 Member Posts: 6,408 Disability Gamechanger

    Hello @Topkitten  Thank you for sharing. Sorry but please can I ask did you contact the charity I mentioned to you.

    In previous post.  I do understand that if your having problems and issues. Especially pain and mental health.

    Maybe if by contacting them might be some solutions.  Additional support and guidance.

    I know we as gentlemen hate being told what to do.

    I always say to my self if there is help and support out there and I need it . I have to be guided and advised in the right direction.

    All of us experiencing pain know has to be some options.

    Listening to those who may give some opportunities to deal with any issues and problems.

    All I know.

    Listening and learning from those who care for  us and tend for our illness or condition.. Yet by doing that . You may come to terms with your issues and problems.

    I have knowledge, expertise maybe on a lot of things but there again with my health still learning and being educated.

    Especially by others I wish and want to be given the opportunity to use the tools they provide.

    To help myself.

    I have said no too many times have now realised the need to adapt.

    I am sorry what is happening to you.

    I think that there are answers out there.

    Hope you keep safe and warm.

    Take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Im sorry to hear you are having such a tough time @Topkitten :(
    Senior online community officer
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Sorry @thespiceman but I have been in such a funk that I haven't been able to contact anyone. Every time I even think about it I start panicking.

    "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 Member Posts: 6,408 Disability Gamechanger

    Hello @Topkitten sorry to hear you get in a panic.  Thinking about it.

    I did not wish to distress you. Just thinking of what you are writing.

    I sense if you need that support and advice some guidance. I am only offering a helping hand of friendship.

    Remember this your call. Your own health needs.

    Please can I offer this having been there and had so many knockbacks.

    Told this by a support worker the following quote.

    If we go on a journey and keep putting stones in the path.  Then do we go around them . Stand still and stay there.

    We can go over or around them.

    Know the best thing ever. Contacting this charity.  I suggested

    Tell you why first because offer a range of options and programmes and ways to cope with anything you are dealing with.

    May I add can help with wellbeing, benefits and any additional signposting to relevant support.

    I know it is all small steps. 

    May I add make a list of what you want from any service.  That does help gives you reassurance, confidence. Might help then they could advise you.

    Please can I apologise if this is me. Yet knew after so many knockbacks decided to move again. My answer to not getting the guidance I wanted.

    Gave this a chance.  My friend and mentor told me about it and lacking self confidence. Thought got to do something. About my anxiety fears and securities all the time.

    The rest is history.

    I know had to change many things and realised I was focusing too much on my disability not the main issues the mental health and the after effects of addiction.

    Understand if your different to me.

    I just hate seeing a gentleman a valued member of this community. Being in a situation like this.

    When there are answers and some possible solutions.

    All I can say.

    Take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    @thespiceman, making lists is not my way (though I may have to change). In the past I had an exceptional memory, almost photographic and it is only panic and paranoia that prevents me from using it properly.

    My biggest problem is that it has taken 18 months instead of a few weeks to get what I suspected I needed all due to incompetence and now, due to the progression of my condition, I am in no state to cope with the change needed. I cannot, as yet, see any way out going forward.

    "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 Member Posts: 1,263 Pioneering
    I am trying to move forward but it's like moving through glue. My mind just goes over and over the ways in which the local health services have let me down. I have been doing some research and I cannot understand why Scoliosis surgery has never been discussed as an immobile spine might not remove the pain but it would make it static and stop the progressive issues. However, Orthopedics wouldn't even see me when I was in hospital a week or so ago and the obvious reason is that they are still covering up their stupidity and incompetence. Not that incompetence should be unexpected in a hospital that was in the worst 10 in the country for treatment and in the top 3 for surgical deaths. Despite 2 changes of management they are still so bad that most surgeries are not done in the hospital but in another hospital in another town 15 miles away.

    Our health service is pathetic despite people thinking it is still good.

    "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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