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kouklakoukla Member Posts: 14 Connected
Hello all, Just joined this  privileged group LOL it’s not everybody that gets to join the disabled brigade LOL  I am one of the lucky ones with MS and yes I have it and it does have me LOL

Replies

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

    Good Evening & Welcome to the gang.

    I’m one of the “Community Advisors” on our site.

    Please please let me know if I can help/support you in anyway???

    Thanks.
  • kouklakoukla Member Posts: 14 Connected
    Thank you steve
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    Hi @koukla
    Welcome to the community! How are you today? :)
    Disability Gamechanger - 2019
  • jane1973jane1973 Member Posts: 175 Pioneering
    Hello there @koukla how’s you?
    Hugz to everyone xx
  • kouklakoukla Member Posts: 14 Connected
    Hello all and thank you for the warm welcome 😊😊. I’m doin ok, thanks for asking, when the MS isn’t kickin my butt lol. And how is everyone doing today?
  • jane1973jane1973 Member Posts: 175 Pioneering
    @koukla im awake as usual lol thanks for asking, just took night tablets so a bit like a smartie tube , do u sleep ok? I have fibro and i can be in bed for days but still not felt that ive had some sleep, and when i do sleep i wake up like ive been set in stone lol
    Hugz to everyone xx
  • Mumof2dsMumof2ds Member Posts: 148 Pioneering
    @koukla. X 
    Welcome 😘 everyone's lovely here. 

    XX 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    I am OK thank you @koukla, just getting over a cold :(
    Disability Gamechanger - 2019
  • kouklakoukla Member Posts: 14 Connected
    jane1973 said:
    @koukla im awake as usual lol thanks for asking, just took night tablets so a bit like a smartie tube , do u sleep ok? I have fibro and i can be in bed for days but still not felt that ive had some sleep, and when i do sleep i wake up like ive been set in stone lol

    @Jane Ah  Jane, so you are one of these people who if we shake  will rattle LOL.  For the most part yes I do sleep okay, But when the wakies take hold they grab on tight lol. Is one of the reasons you have difficulty sleeping because of the pain from fibro?
  • kouklakoukla Member Posts: 14 Connected
    Mumof2ds said:
    @koukla. X 
    Welcome 😘 everyone's lovely here. 

    XX 

    @Mumof2ds Thank you 😘. And yes so I am seeing, makes a lovely change.  I have pretty much given up on forums, as people don’t seem to reply or even participate, nice to see a different community 😊

  • kouklakoukla Member Posts: 14 Connected
    Ami2301 said:
    I am OK thank you @koukla, just getting over a cold :(
    @Ami2301 Colds can be stinky, I am glad you are getting over your’s 😊
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,489 Disability Gamechanger
    Many thanks @koukla! Have you got much planned for the week ahead? :)
    Disability Gamechanger - 2019
  • jane1973jane1973 Member Posts: 175 Pioneering
    @koukla yes i feel like i rattle, the pain if i cant get it under control keeps me awake as does my body temp is hard to regulate, if  anxious my mind and muscles wont relax ani could go on and on lol what daily struggles do you have to overcome?
    Hugz to everyone xx
  • kouklakoukla Member Posts: 14 Connected

    Ami2301 said:

    Many thanks @koukla! Have you got much planned for the week ahead? :)

    @Ami2301 same old same old lol  but I am NOT complaining, in my life no news is good news! 🤣🤣🤣

    @jane1973 I can’t imagine how difficult things must be for you.  I had a friend once who had FM and everything they owned was made out of memory foam!  At times it feels like it’s almost impossible to stay on top of  doesn’t it?  

    Me? Well I am 24/7 at war with my body, probably like many others on here.  It’s a daily battle with the MS (which in my dictionary stands for My Sh*t LOL). But quite simply it ain’t gonna win lol - as they say what doesn’t kill you, you can kick up the a$$ and send back to hell where it belongs 🤣🤣 LOL. 

    To answer your question, daily struggles can sometimes mean just  doing the basic things if it’s a bad day.  I live on my own and get by on my own.  So far I have yet to train my crazy cat in the art of cooking LOL. I get really **** off when well meaning people say “what? No carers ?”  They don’t realise how patronising they sound 🤨🤨🤨


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Welcome to the community @koukla :)
    Scope
    Senior online community officer
  • kouklakoukla Member Posts: 14 Connected
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