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Thread: Celebrate the GOOD THINGS

  1. #271
    Forum Member Ellie's Avatar
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    iHi Dina and Lynne,

    I got a cleaner once I could no longer clean - of course it's not up to my once higher standards but, as you said Lynne, I've learned to live with that.

    Dina, happy you're a bit chipper today.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #272
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    Glad you're feeling better today Dina,

    It's really hard to let go of a clean and shiney home, especially as we spend more time in it. Ironically we had a cleaner when we both worked long hours but now my husband claims the exercise is good for him ! Once he gets going hes fine but he doesn't see if it needs it . I can supervise very well from my powerchair but I have learnt to bite my tongue and let things go .

    Hope there are good things for everyone today .
    Love Debbie x

  3. #273
    Forum Member Gillette's Avatar
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    Hi Lynne, Ellie and Debbie

    Iím not talking about a lack of cleaning or a bit of untidiness, Iím talking about having nothing to eat ( literally surviving on Quavers because I canít swallow anything else) because my whole big shop from Sainsburyís disappeared. Iím talking about eight pairs of pyjamas being lost and just the trousers of the last pair being found. Iím talking about important paperwork going missing while I was in hospital, including my Will.

    Iím talking about things that are making almost every healthcare professional who comes to the house start talking to me about Safeguarding Adults procedures.

    Iím talking about trying to cope with the cr*p life continues to hurl at me because MND isnít bad enough.

    I wish I was just talking about a bit of dust and a lost pair of socks.
    Dina

    Trying to keep positive, but not always managing.

  4. #274
    Forum Member Ellie's Avatar
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    I'm really sorry Dina, I didn't intend to trivialise your situation.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #275
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    Oh Dina, I am so sorry about this and I so hope life improves for you very soon.

    You have had such alot to cope with in a short period of time and you always seem so positive and funny. I am sure you dont need me to tell you that it's really vital to have enough calories and nutrition ( and quavers for a treat !) so maybe the healthcare professionals need to consider safeguarding or perhaps you're not ready to go down that route.

    I have everything crossed that tomorrow is a better day for you.
    Sending you hugs
    Love Debbie x

  6. #276
    Forum Member Gillette's Avatar
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    Thank you Ellie and Debbie.

    Debbie, no, I donít want to have Safeguarding proceedings hanging over me, with the accompanying threat of having to move into a nursing home. I am slowly trying to work my way through the chaos as well as supporting my partner through his own neurological deterioration.

    I apologise for my previous post being unpleasantly phrased but the subject is sometimes hard to cope with and can make me tetchy.
    Dina

    Trying to keep positive, but not always managing.

  7. #277
    Forum Member Terry's Avatar
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    No worries about being tetchy, Dina;

    We sort of know what you're going through but I very much doubt that many Mnd people have had so much to deal with over the last six months. Please feel free to let off steam, you have posted so many positive things aswell.

    Love Terry

  8. #278
    Forum Member Gillette's Avatar
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    Thank you, Terry. I try not to slide into a cesspit of self pity too often, but sometimes the sides are just too steep.
    Dina

    Trying to keep positive, but not always managing.

  9. #279
    MNDA's action this morning on another thread!

    Doug

  10. #280
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Doug Carpenter View Post
    MNDA's action this morning on another thread!

    Doug
    Thank you for mentioning this, Doug. It certainly is a good thing in my opinion. I found that whole thread upsetting and I probably wasnít the only one .
    Dina

    Trying to keep positive, but not always managing.

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