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Thread: Hard

  1. #21
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Dear Willem and Newbie17,

    Thank you for your kind words.

    Although the first poem does not paint a positive picture, I wanted to write it as an acknowledgment of those people who are struggling to have a positive attitude and to let them know that they are not the only ones who may be thinking 'this is hell'. One thing that I have realised about this disease is that it can be very isolating and sometimes we can wonder if the emotions we are feeling are 'normal'. This poem was written to highlight the depths of despair that many people affected by MND can suffer from and to let them know that they are not alone in the way that they feel.

    Sometimes, I feel inadequate and wonder if it is normal to feel so sad about having MND. This is because when I compare myself to other people who have MND, I do not always live up to the expectations that I should stay positive about things and be happy. Sometimes it is difficult to maintain 'the glass half full approach' to life that I always had before being diagnosed with MND. Maybe I should be more cheerful and always have a smile on my face, like those smiling people pictured on the MNDA website? Am I alone in feeling like this? This is why I found Willem's words 'It's hell. I know' so powerful. I got the supportive message from Willem that we are not alone if we are struggling to cope with the impact of MND on our lives and it is understandable if we are thinking 'it's hell'. Indeed, how many times do people use the phrase 'this is hell' for lesser reasons than having to cope with a terminal illness? I may have said 'this is hell' in the past if I was delayed for hours at the airport or stuck for hours in a queue on the motorway, but being diagnosed with MND certainly puts things into perspective!

    On the flip side, I wrote the second poem as an expression of my appreciation and thanks for all the support and help that there is available from the MNDA and the great people on this forum. Their support can have such a positive impact on our lives!

    Best wishes,

    Kayleigh x
    Last edited by Kayleigh; 3rd December 2018 at 16:34.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  2. #22
    Forum Member
    Join Date
    Oct 2018
    Hi all so sorry for the slow reply. We're fire fighting at the m9ment. Dad is on oramorph practically every hour. We just can't shift this mucus and it's becoming so hard for him to breathe. But I just wanted to come on and say all you responses mean so.much to me. Willem, your words were amazing and I took advice from what you said. Like I've said to the others, thanks so much x

  3. #23
    Forum Member
    Join Date
    Dec 2016
    Norwich, UK
    My heart goes out to you and your father Skipton.

    I had created a spreadsheet so I could keep an inventory of all of Ezri's meds, and track what needed to be ordered and when. It was a bit long list, and she was using oramorph and anti-anxiety a lot towards the end.

    Hope things settle down soon.

    Hanging in there, one day at a time.

  4. #24
    Forum Member
    Join Date
    Jul 2018
    Dear Skipton,

    can you please let us know how your father is doing? And, how are you doing yourself?

    Love, Willem

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