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Tired of coping

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  • Deb
    Hi Maria C .. I know its no help but I totally get where you're coming from.

    Sometimes I am fed up of saying I'm fine to friends because I know it's what they want to hear. There's nothing they can say if I'm not ! I get fed up trying to be upbeat and positive. I wake up in the morning and think ive got a mountain to climb just to get showered, toileted and looking vaguely presentable in my powerchair.

    I know I'm fortunate to have lived long enough after diagnosis to meet my grandson but i long to play with him. They put him on my knee in my wheelchair but of course he quickly wants to wriggle down. I suspect if I let him drive it he'd be more interested 🤣 When I'm with him everyone is taking photos and I'm grateful but it makes me emotional.

    I do try to focus on what I can do rather than what I've lost and I know I'm so lucky to have a loving family. We're only human and MND is devastating.

    Love and hugs to you ,
    Debbie x😘🤗

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  • Maria C
    started a topic Tired of coping

    Tired of coping

    Warning. I’m throwing a pity party, but I am looking for honest input, not just commiseration.

    How do you get through the days when everything seems so bleak?

    I see my daughter and one grandchild weekly, but I can’t actively play with her because of mobility. I want to sit on the floor with her and build with blocks. I want to go out to the playground and push her on a swing. I can’t.

    I used to knit and crochet, but my hands are weakening so I can’t. I see beautiful patterns that I want to make, but my hands won’t cooperate. I’ve givn up my online crafting groups because it hurts to see all the lovely things I can no longer do.

    A simple meal takes half a day to prepare, and still requires my husband to fetch and carry. I burn my hand regularly because I’m sitting on my rollator and forget that I need to hold my hand higher while stirring the pot. I used to have guests for dinner regularly. I don’t have the stamina nor mobility to do that now. One more thing I’ve had to give up.

    I’m tired of people offering suggestions on how to work around these things. Read to your grandchild. She’s three and doesn’t want that. She wants someone to play with her. Why don’t you knit dishcloths? Because I want to knit beautiful lace, not ugly rags.

    What’s left?