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Hi, my name is Jerryboy56!

I have cauda eqina. No pain but doubly incontinent. I self catheterise 4 to 6 times daily and have to use pads. Activities of daily living are a pain in the bum especially toileting.  All caused by a benign tumour on the spine which was undiagnosed for a long time. Add to that can't feel my bum at all totally numb. However I don't have any pain but am prone to UTIs. Am I classed as having a disability . Have no problem walking but thats about it. As for" love life" don't go there!

Replies

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jerryboy56

    Welcome to our online community/family.

    I am one of the “Community Champions” on our Website.

    Yes I also have problems with my “Bladder & Stomach”
    due to “Nerve damage” following a “Stroke”

    Please please let me know if I can help/support you in anyway??????
  • Jerryboy56Jerryboy56 Member Posts: 6 Listener
    I have cauda eqina. No pain but doubly incontinent. I self catheterise 4 to 6 times daily and have to use pads. Activities of daily living are a pain in the bum especially toileting.  All caused by a benign tumour on the spine which was undiagnosed for a long time. Add to that can't feel my bum at all totally numb. However I don't have any pain but am prone to UTIs. Am I classed as having a disability . Have no problem walking but thats about it. As for" love life" don't go there!
  • Jerryboy56Jerryboy56 Member Posts: 6 Listener
    Thanks. Not sure what I want. Just talking about it helps. Most of the time no problem but after changing the pads for the 3rd or 4th time that day and it gets a bit exasperating. Work is 👍 as I support a peaditric physio.really enjoy it.  But sometimes really low. Try to be upbeat but doesnt always work know what I mean
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Jerryboy56

    Don’t worry yes it’s good to get things off your chest.

    I have to catheterise though my belly button.

    This seems to be getting harder all the time.

    The stomach opp has caused more problems than it has solved.

    Never mind your “dammed if you do, or dammed if you don’t”

    It’s great that you are still working!!!!

    Yes you always need to have a smile 😃 on your face.

    Please please let me know if I can help you further????
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Jerryboy56   Pleased to meet you welcome.

    Thank you for joining and sharing.

    We are a supportive community. Friendly, care and share.

    Please ask if we can advise. Some one will know.

    Please take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    Hi @Jerryboy56 welcome to the community!

    The definition of disability can be complex and vary. To me, a disability is a condition of illness that prevents me from doing daily activities that I was able to do before. Including the support/aids/equipment you use daily. For example, I used to be able to walk, I had great co-ordination and balance. I now have Aquired Ataxia which has affected my balance, I can no longer walk more than a certain distance and I need to be cared for and assisted when doing everyday activities, getting dressed, washing, walking, transferring, etc.

    What is your definition of disability?
    Disability Gamechanger - 2019
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Welcome to the community @Jerryboy56

    Scope
    Senior online community officer
  • Jerryboy56Jerryboy56 Member Posts: 6 Listener
    Hi Ami. I suppose we all look at disability in different ways and never think it will happen to us. I have been fortunate to have worked and supported disabled people both in the voluntary sector and in a paid capacity for about 30 years. I currently work with children and young people both in mainstream and special schools. On a personal note my condition was only diagnosed in 2016 but had a large impact on me. I realise that the operation to remove the tumour on my spine was not without risks and I came through fine. However, although pain free I can't go anywhere without pads, catherters etc. or spare sets of clothes. Because I have no feeling in the saddle area I have no bowel control and therefore, no idea when I have"been". So I do think I have a disability. That doesn't take anything away from other people who are much worse off than me. I do have a lot to be grateful for. I have a suppotive family and friends network and am painfree. Thanks for asking and all the best to you. Please keep in touch
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    I am so sorry @Jerryboy56 is there anything the doctors can do?
    Disability Gamechanger - 2019
  • Jerryboy56Jerryboy56 Member Posts: 6 Listener
    Unfo no. The tumour is benign but is situated between the spine and spinal cord. When I looked at the scan it's about 3 inches long and about half inch thick. It has grown through the fibres and nerves of the cord making it difficult to remove. The op lasted almost 10 hours. Luckily it doesn't appear to be getting any bigger. Hows things with you? 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    That's awful, i really hope they can find something to help you! I am OK thanks, just knackered, always am at the end of the day lol
    Disability Gamechanger - 2019
  • Jerryboy56Jerryboy56 Member Posts: 6 Listener
    Just do as I do n keep smiling. It doesn't always help but other people think you're on something!!
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,625 Disability Gamechanger
    Haha that's true! I try and stay as positive as I can, but I do have bad days, we all do, we're only human after all!
    Disability Gamechanger - 2019
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