Hi, my name is SiobhanTear! I have just been diagnosed with Epidural Lipomatosis

MrsTear
MrsTear Scope Member Posts: 11 Connected
I am 38 and a mother of 4. I have just been diagnosed with Epidural Lipmatoses. This mean I have gone from able bodied to have to use a wheelchair, stairlift, special bed as well as having to drag a Zimmer from around with me. I am completely Incontinent and don't have full control over my right leg. This means no more driving. I've been in hospital for coming up to 7 weeks now and I feel it has taken this time to get my head around the new physical me. Thank you for listening. 

Comments

  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Good evening @SiobhanTear welcome to our great group. 

  • JBS2022
    JBS2022 Scope Member Posts: 2,074 Championing
    Welcome @SiobhanTear to the forums.
  • janer1967
    janer1967 Online Community Member Posts: 21,922 Championing
    Hi and welcome to the community 

    I totally empathise I was in this situation 6 years ago became wheelchair bound . It takes a while to get to grips with it it's like a grieving process 

    You will learn new ways of doing things and new challenges it isn't easy by any means and is life changing 

    Try and focus on what you can do rather than what you can't 

    You have our support just ask any questions and join in 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome from me @SiobhanTear I hope you're settling in okay on the forum. You can see how welcoming and friendly our members are so join in whenever you're ready!

    It will take time to adapt to the new physical you, and you're not alone in this :) Thank you for explaining how things have been, as I'm sure a lot of our members can relate. 

    Here's a few of the best places to get started if you'd like to look around:

    • Recent discussions is where you'll find all the latest conversations our members are having
    • The categories page shows all the different topics for discussion
    • The virtual coffee lounge is a place to chat, get to know other members, and play games too
    Let us know if you need a hand with anything, and hope your stay in hospital is as comfortable as it can be!
  • Tarzy2023
    Tarzy2023 Online Community Member Posts: 1 Listener

    I'm in my 50s i also been diagnosed with epidural lipomatosis in 2019 i am just like you... wheelchair bound walker cane etc... i wasn't over weight when their found out i had this.... i also am incontinent laying only left side to keep that pressure pain i have…my feet and legs feel like their asleep… i have searched alot to find just one who would understand my pain the pressure and cramps that happen… i did go see a surgeon last year....I'm not a candidate for surgery… loose weight....well if I could get up more than 5 minutes without having to sit or lie down.....