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Hi, my name is lippylisa!

Hello to all!
iv just joined and looking forward to tips, advise and getting to know people disabled like myself!
I have chronic Ehlers-Danlos and walk with a stick! Many symptoms from the disease including bowel problems, bladder problems! Arthritis, sciatica and a tumour to top it off! Iv been ill now for 15 yrs but manage it as best I can and try my best to stay positive! I’m a single Mum to Heidi aged 7 and would love to hear from anyone in a similar situation living with illness who would like to advise or swap stories or just have a chat, thanks for reading X


  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello Lisa (I'm guessing :smile:) @lippylisa, and a warm welcome to the community. I did a quick search on the site and found this conversation https://community.scope.org.uk/discussion/37835/hyper-mobile-ehlers-danlos-syndrome which might be of interest to you, listed in the forum Undiagnosed and rare conditions https://community.scope.org.uk/categories/undiagnosed_rare_conditions
    It might be a place to start. It is very likely that Admin will move your post to that forum very shortly. I'm sure you'll find people to talk to.
    You have found a safe place here and are among friends, so please don't be shy of telling us about yourself or of asking any questions. The better we get to know each other, the easier we may find ways to be of use to you.
    Let me know if there is anything more I can do.
    Warmest best wishes to you,
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Hi @lippylisa, and welcome! You might also like to check out our parents and carers category.
  • lippylisalippylisa Posts: 5Member Listener
    Thanks for the welcome both of you I will have a nosy around and sure I will feel able to enter convos soon and make the most of the group

    Happy Sunday
  • steve51steve51 Posts: 5,874Community champion Disability Gamechanger
    Hi @lippylisa

    Good Evening & Welcome.

    It’s great to meet you this evening.

    Please please have a good look around & please let me know if I can help you with anything????

  • lippylisalippylisa Posts: 5Member Listener
    Hey Steve, thanks for your message.

    I cant lie, but since I joined here, I haven't come back. I am extremely poorly and have had a new diagnosis and admit, I am struggling to manage right now.

    I will return when my mental health is under control, I have PTSD AND BPD and usually I manage well but at times of a lot of stress, I become overwhelmed.

    I will be sure to ask you, should I need some help on my return, thanks again and Kind Regards, Lisa
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Thinking of you, @lippylisa. If there's anything we can assist you with, please do let us know.
  • steve51steve51 Posts: 5,874Community champion Disability Gamechanger
    Hi @lippylisa

    Yes please please let me know when I can help/support you with???

    Sorry to ask but is there anything that I can help you you with currently?????

  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hi Lisa @lippylisa
    I'm guessing - though 'guessing' doesn't seem quite the word - that the new diagnosis and your current poorliness have left you feeling in a darker place than ever?
    You must do whatever you need to do in order to get by, and nobody here wants to put any kind of pressure on you. And maybe, too, what you're feeling isn't something you feel like talking about in an open thread.
    You should, I think, be able to use the message tool to contact any individual privately if talking to any one person might help.
    I'm here and listening if you want me to be, and I have no doubt that @steve51 is too.
    You MATTER here, Lisa.
    Don't forget that,
  • lippylisalippylisa Posts: 5Member Listener
    You all are so lovely saying such kind words.
    I am very poorly right now and mostly bed ridden at present,
    The new further diagnosis has put me in a dark place but I don't feel uite ready to speak openly just yet but as soon as I feel a bit better, I shall return and take up your kind offer of support  in thr way of a chat as my family really aren't dealing ith me in the way i feel i can share this with them.

    Be well and Kind Regards, Lisa 

  • steve51steve51 Posts: 5,874Community champion Disability Gamechanger
    Hi @lippylisa

    I’m very very sorry to hear that you are such a bad time at the moment.

    Yes you’re “Nearist & Dearest” tend to be unable to see how bad you are.

    “Please please “ talk to me as you will find it help’s you.

    As They Say a “Problem Shared” is a “Problem Halved” 

    “Remember we are all here for you”
  • lippylisalippylisa Posts: 5Member Listener
    Im that emotional right now that what u said here Steve, has got me all teary, my own family dont even tell m to talk to them, thanks so much I will talk when I am ready thanks again

  • steve51steve51 Posts: 5,874Community champion Disability Gamechanger
    Hi @lippylisa

    I’m very very sorry for my previous post !!!!!

    “My apology’s”

    Yes it will be great to chat at some point in the near future!!!!

    Please please let me know if I can help you currently???

    I have got “big shoulders” & “Good Listener”

    “Sorry Again”
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