Newly disabled

clp
clp Online Community Member Posts: 39 Connected
edited January 2019 in Everyday life
Hi
I am "newly" disabled.  I have a back condition which means my spine is self fusing and growing extra bone.  The pain is severe and I have gone from walking normally 5 years ago to only managing a few metres now.  I am waiting the outcome of my first PIP application and considering buying a power chair.  I am lucky as I have a great employer who values me for who I am not my ability to run 100m.

Cath

Comments

  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,764 Pioneering
    Hi @clp

    Welcome to the community.

    Please have a look at our quick guide about our community and feel free to join any of our recent discussions  

    I am sorry to hear about the pain you're going through. I am happy to hear your employer is supportive. I wish you all the best with your PIP outcome and getting a power chair.

    Please let us know if you need further support.

  • clp
    clp Online Community Member Posts: 39 Connected
    I will thank you.  I work for a GP practice so if people need help understanding the process I am willing to help.
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @clp

    Good Afternoon & Welcome it's great to meet you today. 

    I am very very sorry to hear about your current situation /problems.

    I have had many mobility scooter's "large and small"

    Please please let me know if I can offer you both my help and support with things??? 
  • clp
    clp Online Community Member Posts: 39 Connected
    Thanks.  I need one that is portable as I drive a lot and easy to fold.  I am hoping to get a hoist so I can get it out of the car but I still insist on going on holiday so husband needs to be able to lift it in then.  I am looking at one of the lith-tech ones - comes out of China but UK company so hopefully will have someone who can service it etc.  New to this though so any suggestions welcome.  Currently have a travel scoot but need something for indoors at work.
  • clp
    clp Online Community Member Posts: 39 Connected
    Thanks. Some excellent prices!
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @clp

    Yes they are very good prices. 

    Please have a good look around. 

    If I can help /support you further please let me know??? 
  • cracker
    cracker Online Community Member Posts: 322 Empowering
    @cip, hello and welcome. Your condition sounds so painful - did it start abruptly? And can anything be done to correct it?

    This forum is caring and welcoming. Glad you are here.
  • clp
    clp Online Community Member Posts: 39 Connected
    @cracker. Thanks .Unfortunately it will only get less painful once my spine has self fused. It can also spread anywhere but typically hips, knees, elbows, shoulders and feet as the ligaments turn to bone.  It's called DISH shortened from Diffuse (anywhere) Idiopathic (no one know what causes it) Skeletal Hyperostosis (too much bone growth).  Must admit the people I work with laugh at its name as it gives you such hope!  Fairly new disease as first recognised in 1996.  I add hypertension, diabetes, sleep apnoea,asthma and a few other things to make life fun.  I have worked in the NHS for over 25 years so I quickly decided I had to accept and be me as I had seen too many people keep hoping a cure was round the corner and it never was.  Have to say I found the PIP forms some of the most difficult to complete and I'm used to government bureaucracy.  Still waiting for outcome.
  • 5Shandy
    5Shandy Online Community Member Posts: 4 Listener
    Re your PIP forms - your local Citizens Advice Bureau would have  great helpful experts with PIP experience.
  • clp
    clp Online Community Member Posts: 39 Connected
    Thanks, at the moment I am seeing it as a challenge though I expect that to change.  :)
  • cracker
    cracker Online Community Member Posts: 322 Empowering
    Just checking to see how are doing today?
  • clp
    clp Online Community Member Posts: 39 Connected
    At Orlando airport waiting to fly home.  Let's just say I've had better experiences and I still have the joy of whether my scooter arrives with me when I land at gatwick.  Timing tablets etc to help and may have a small gin and tonic to wash them down.  :)
  • clp
    clp Online Community Member Posts: 39 Connected
    Am now home, tired and now convinced about the wheelchair.  Not going to buy now as jet lagged but may tomorrow!  Thanks for everyone's care and help.