Hi, my name is Spinabif1967!

Spinabif1967
Spinabif1967 Community Member Posts: 10 Listener
in Start here and say hello!
Thank you for accepting me. 

Comments

  • CockneyRebel
    CockneyRebel Community Member Posts: 5,188 Championing
    Hi @Spinabif1967 and welcome

    Would you like to tell us a bit about you or do you have any questions ?
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Hi. I am 52 years old. I have spina bifida, hydrocephalus, depression, high blood pressure, and chronic pain. Used to work, but unable to since 2011.
  • Ami2301
    Ami2301 Community Member Posts: 7,877 Championing
    Hi @Spinabif1967 welcome to the community! :)
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Thanks
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Spinabif1967 and welcome to the community! Please let us know if there is anything we can do to help :)
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Hi. At the moment I'm battling with health issues, and dreading the arrival of the inevitable DWP brown PIP envelope. ESA assessment is bad enough, and I 've heard PIP is even worse 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Spinabif1967, I'm sorry your health isn't doing too great at the moment. I know the assessments are daunting, having gone through them myself! People do experience good and bad things when going through PIP, unfortunately we normally only hear about the bad times. Our community has lots of knowledge about the process so I hope we can support you through it when the time comes :)
  • zakblood
    zakblood Community Member Posts: 415 Empowering
    welcome to the forum, don't worry about the bad stories on here, even if some of them are from me, i failed my last one, but passed the previous 5, so not everything is bad, it's just us letting off steam, the system is stacked to stop those who aren't in real need, but sometimes they get it wrong, not that you will ever hear them saying it to you and god forbid ever put it in writing, but that aside, life is stressful enough with any illness, so don't just add another worry onto an already heavy burden to carry, for everyone who has bad stories, there maybe 100's or 1000's with good one, but they tend to not shout from the roof top saying they have passed again, as it's not an exam which tbh should be a yes or no, pass of fail type exam, it's about us being human and treated with respect and empathy, something lacking any longer i'm sorry to say with the DWP, but good luck, keep your chin up and stay strong


     
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Thank you both of you! Really struggling at the moment. My Dad died 5 months ago, which doesn't help... Jules 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Spinabif1967, that's not a problem at all! I'm really sorry to hear that, it cannot be easy! We are here if you need anything :)
  • steve51
    steve51 Community Member Posts: 7,121 Championing
    Hi @Spinabif1967

    Good Evening it’s great to meet you today.

    I am very sorry to hear about your current problems.

    Please please let me know if you need any help/support?????

    @steve51

  • April2018mom
    April2018mom Posts: 2,863 Championing
    Welcome to the community

    My son has Spina Bifida as well so I can relate. He was diagnosed in utero halfway through my first pregnancy at 20 weeks. That was nearly three years ago now. 
    What issues do you have? 
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Urinary incontinence, unpredictable bowels, poor mobility, chronic pain (go figure, as I have impaired sensation in my legs and feet), Kidney stones, depression, high blood pressure, hydrocephalus 
  • April2018mom
    April2018mom Posts: 2,863 Championing
    My son has bowel and bladder issues too. He also has clubbed feet and uses a wheelchair for public places and long distances as well since he cannot walk independently at all. He is also showing signs of dyscalculia. Nevertheless he is a happy healthy little child who loves to keep us on our toes constantly as well as irritate his twin sister his partner in mischief making and his playmate too. 
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Does his sister also have Spina Bifida? 
  • April2018mom
    April2018mom Posts: 2,863 Championing
    No. She is typically developing. 
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    That's great. 
  • Adrian_Scope
    Adrian_Scope Posts: 14,437 Online Community Programme Lead
    Welcome to the community @Spinabif1967! :smile:
  • Spinabif1967
    Spinabif1967 Community Member Posts: 10 Listener
    Thanks. 
  • Ails
    Ails Community Member Posts: 2,237 Championing
    Hi @Spinabif1967,
    Welcome to the Community.  It's lovely to meet you.  I have Spina Bifida too and live with chronic pain so I know how frustrating the pain can be.  How are you today?  If you have any questions or we can help you with anything then please just ask.  All the best.  :smile:

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