Awake and Unable to Move: Woman with Cataplexy Describes Her Experience

If you or your loved one has cataplexy, I definitely suggest you read this post, written by a young woman who’s living with it. I say “living with it” vs. “fighting it” because that’s basically her mindset.

That’s how she’s surviving. That’s how she copes each and every day.

What really struck a chord with me is that it’s forced her to live more in the moment—not that she necessarily wants to. But when she has an attack, she knows she’s not able to think about exams in school. She can’t think about her friends and family, that she loves to run, or that she’s got to be somewhere in three hours.

Instead, she is very much in the moment, mindful of her own breath. Perhaps she notices how the carpet feels on her hands and fingers, the fact that her face may be smushed up against the leg of her dining room table?!

I also like how she metaphorically describes living with cataplexy as something that feels like being a tree, but a tree that only enjoys two seasons: summer and winter. She talks about how, despite having branches that get stripped away and fall down to the ground she stays grounded by her deep roots, firmly planted in the ground.

Then instantly, summer bursts forth. Everything is blooming, and life is grand under the shining sun—only to suddenly return to winter.

I’m just giving you the highlights. Her post is well worth reading because she speaks so poetically and inspirationally about her life!

She also provides some important facts about cataplexy, a part of classic narcolepsy. While narcolepsy affects sleep/wake cycles, cataplexy is different.

With cataplexy, people suddenly lose muscle strength. They get weak. Some people lose total control and fall to the ground. These episodes are usually triggered by an intense emotional response to something – funny or sad – and can last for a couple of seconds, minutes, or in severe cases, longer. The muscle weakness can affect just your eyes or arms or both—your legs, and or your entire body.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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