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Tired vs Tired

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    #16
    Spoon theory

    I would look up the Spoon Theory. It is a wonderful story to give people to read to think about how energy is such a resource for us and we have to ration it out. Whereas a "normal" person gets up everyday with what seems limitless energy. We do not have that luxury.

    My husband often tells me to "reserve some spoons!"

    Diagnosed 2000 RRMS. Copaxone 2000 - 2010 Rebif 2010 - 2013 Copaxone 2013 - 2014 Tecfidera October 2014
    "You can't appreciate the good days without the bad ones."

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      #17
      My tired is how many days ive just woken from

      I just say how many days ive just woken up from. I seem to sleep more then most even on here. Usally I sleep 36 hours. but if im real tired it goes to 42 or more hours at once. that's with no waking up.but it usally shows on my face and body before I go to bed. my friends know im sick. I used to teach hanggliding and weedwack 8 hours straight so they don't even to have ask me and now I barely walk with a cane. im extremely lucky to have great friends who only ask if I need anything. the boyfriend not so good guy but im lucky to have such great freinds.

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        #18
        I found a good way to explain it just recently. I used to compare it to the fatigue from the flu. The last time I was talking about it to a friend in conversation, I said something like, "It's the kind of tired that leaves you too tired to lay there. Laying there is so exhausting that it takes more energy than you have. Like when you're too tired to get up to go to bed, so you sleep on the couch, only for us, staying on the couch is exhausting."

        The flu comparison works, and they can relate it to something they have experienced. But they assiciate that with something that happens once in a blue moon, as something that happens with an accute illness. They don't see us as that kind of sick.

        I get the impression that they think we're exaggerating no matter what we say.

        Someone I know has cancer, and the treatments really knocked him out. He was telling me how exhausted he was, and I was filling in the words before he could. He was shocked that I understood. And all along I thought he understood my fatigue! Maybe it's something you have to experience to really understand. All we can ask for, maybe, is for other people to trust us and believe us.

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