Speaking in Spoons – The Spoon Theory and Narcolepsy

by julie on December 23, 2014

bydlslogo-230wMy boyfriend and I speak in spoons.

If you don’t know what I’m talking about, read The Spoon Theory by Christine Miserandino now. Seriously, stop everything and visit: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

Alex has been really supportive of my narcolepsy from day one. We quickly fell into great routines for managing my excessive sleepiness and cataplexy. Yet, my narcolepsy is so much more than the minutes I spend sleeping or paralyzed with cataplexy.

In my experience, narcolepsy is almost entirely invisible, manifesting in behavior, mood, energy and cognition. I had a hard time explaining how I simply ran out of energy at times. I reached a “wall” and needed sleep and time to myself to re-charge.

SpoonGirlHatI often felt like a let-down to others. It’s not that I “wanted” to stay in on a Friday night. No, I love going out dancing. But at times, what my brain wants and body needs are two opposite things.

When I shared The Spoon Theory with Alex, it gave the invisible aspects of narcolepsy a voice. Christine Miserandino didn’t just write a blog post, she wrote a new language for those with chronic invisible conditions to speak to our loved ones.

Recently, Alex and I were interviewed over 24 hours for a major media piece on narcolepsy to be released in the coming weeks. At one point, Alex explained The Spoon Theory to the reporter, who hadn’t heard of it. My whole body glowed with pride and joy. And by the end of the 24 hours, the reporter was talking in spoons too.

If that’s not powerful, I don’t know what is.

{ 4 comments… read them below or add one }

Leslie December 24, 2014 at 4:53 am

THANK YOU for sharing this. Yes, incredibly powerful. Can’t wait to see the interview!

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julie January 3, 2015 at 6:33 pm

I’m so glad it was powerful to you too, Leslie!

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Emz December 24, 2014 at 2:35 pm

Thank you for sharing the language of spoons!! I can’t believe I’ve never heard of it, but it will be very beneficial for helping others to get an idea of what we go through every day!
And thank you for selflessly using MANY of your spoons on our cause!!!!

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Ashley January 20, 2015 at 5:16 am

The Spoon Theory is the best example of how I feel living with Narcolepsy and how I go about planning my life. I recently had a baby and I’ve been trying to figure out the best way to explain things to her. I think this is perfect for when she is old enough to understand. :)

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