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  • I’m running out of spoons. Today. This week. This life. I just don’t have enough. Sometimes, it doesn’t matter. Sometimes, I eschew cutlery altogether and eat with my hands. At other times, though, I struggle.

    Today it took me three hours to muster the energy to take off my boots, and as good as it felt to finally loosen the laces and slip them off, I stripped off my dress and pulled on a swimsuit. I planned to leave the house again. (I am still not quite sure if I’ll make it, but I have hope.)

    “I would be tired, too,” people say, “if I did as much as you!”

    It might be true. I don’t know. It’s my life. Sometimes, it feels like too much. Sometimes, it's not enough, and my determination works against me. My strength. My will. I do so much and I look fantastic, they say. I must be fine.

    Over the weekend, a family member suggested I don’t actually do any more than anyone else. (It is not a competition, but that is how he worded it.) I don’t do more. I just think too much, talk too much, worry too much about action.

    “You should just do it,” he said.

    “I do,” I replied, my mind reeling. Did he not know me at all?

    He probably didn’t. I hadn’t grown up with him, and a long weekend at the beach with a family that was mine while it wasn’t was hard on my head. I just hoped that maybe he’d heard me when he smiled and nodded, when I explained how I felt. Apparently, he just wanted me to shut up.

    Most people do.

    Nobody wants to hear about my disease. They don’t know what to say, and frankly, I don’t know how to take it. I am not particularly receptive to platitudes or unsolicited medical advice. I don’t want to hear about mitochondrial-friendly diets, stem cell research, or someone’s Aunt Betty who stayed mobile for years. My disease is following its own unique course under the watchful eye of a trusted neurologist and a team of neuroimmunologists at the National Institutes of Health. I have doctors.

    Nobody wants to hear about my disease, but I keep talking anyway. I want to be seen and heard. I don’t want my friends and family to fix me. I want them to understand that when I say I’m running out of spoons, I am running out of spoons. In return, I will try to do the same for them because we are all just playing the hands we were dealt. We are in this game together.

    A few years ago, a friend shared the Spoon Theory to describe her battle with cancer. The famous theory suggests we all have a limited number of spoons available each day, and every action takes some given number of them. Some of us don’t have all that many spoons at the outset. In a cruel twist of fate, the fewer we have, the more each action takes. Sometimes, it takes three hours (and a whole lot of spoons) just to remove my boots.

    I feel like I am fighting against time. I am fighting my own hopes, fears, and expectations. I am fighting against flip comments about missing so much because I go to bed early (getting to work three hours before almost anyone I know, my days aren’t shorter; they are earlier) or the ways I spend my waking hours. I am fighting the impression that I’m fine. I’m not. I do what I do *despite* being sick not because I don’t feel it.

    Looking fine doesn’t mean feeling fine. I don’t do all that I do because I feel well; I do it because I don’t. I feel like a failure. I feel it every day in a million different ways as I lose more and more feeling, thought, and function, and while I appreciate the opportunity to bond with friends’ parents and grandparents, I am 39. My symptoms are not the natural outcome of growing older, not completely, not by a long shot.

    We are all playing the hands we are dealt, but I wish the people who love me would stop selling me short. I wish they would stop trying to make me feel better about mine, telling me those cards are fine. They aren’t. They suck, but I am pretty fucking amazing and playing them well.

    I do think too much. Every single action I take requires more from my brain and more from my body than that of the average bear. Things don’t work right, but I seldom talk myself out of action. I try to figure out new ways to make everything work and fit even more into a packed schedule, to live each day more fully than the one before, and accept the fact that some things might just be too hard.

    Today, I have walked and worked. I am no more tired now than I was when I woke, but to be fair, at that point, after 12 quiet hours, napping, and sleeping, I could have curled up in a ball and slept until March. I would have if I thought it would help, but it wouldn’t. It never helps. I keep trying.

    I struggle to reduce stress, eat right, and exercise. Prioritize. Hydrate. I take medicine geared toward narcoleptics. They don’t help. They do help but not enough. Some days, I just run out of spoons.

    I should go and change. Apparently, I have run out today. I don’t have enough left to feed myself a heaping scoop of guilt about that. Tomorrow, I’ll unload the dishwasher and start all over again.
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