Living with Cataplexy and those crazy triggers

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    Sleepy RBD

    Squawking wild parrots, smoothies, smoke detectors, rattlesnakes, etc.

    @ferret described a potential trigger as “Any sudden unexpected anything” in another post (under Cataplexy / Once a trigger, always a trigger?). For me, this is a great description and one that I have found helpful when I am trying to explain cataplexy and its triggers to other people.

    When I first encountered the word cataplexy, I did not have any idea about the complexities of this word, nor how its true meaning along with its subtleness and fierceness, would impact and change my life. It is one thing to read a definition on a page and quite another to live with the realities of what it might mean on a daily basis.
    The stories and experiences of people who know and understand this reality in a way others can not are what have made these forums so valuable to me. With that in mind, here are a few recent experiences that I hope may be helpful to someone else who is trying to comprehend the true “nature of the beast” or symptom, aka cataplexy.

    Squawking, wild parrots
    On a recent trip, my husband and I were visiting the local botanical gardens in hopes of spotting some different bird species while enjoying the gardens. We were not disappointed in our bird sightings of the day. Before we even entered the park, we were joined by several very loud, wild parrots. My husband grabbed his camera and began taking pictures. It wasn’t long before a couple of the parrots decided to come down from the trees and swoop right towards one of my granddaughters and me. We both startled and started laughing, as I bent over and grabbed my knees to keep from going down…in a few moments, some others also gave us a crazy welcome and greeting…

    One morning a few days ago I was making a smoothie, yes a smoothie, when the blender malfunctioned. I quickly grabbed a bowl to catch the mess; but when I turned to walk to the sink for a towel to clean up the impending kitchen disaster, I went down to the floor…(Being frustrated or caught off guard are a couple of my stronger triggers.) I know, it was just a smoothie…no big deal. Unfortunately, my body didn’t agree and decided to repeat the reaction again before the episode was over.

    Smoke detectors
    One of my daughters has a smoke detector that often goes off when she opens the oven. She has learned to warn me, which seems to help, since I am not caught off guard. However, while at my son’s house the other day, his smoke detector in the kitchen went off…no warning…Boom…I’m instantly sitting on the floor. At least, I was laughing about it afterwards.

    Finally, the rattlesnake
    A few days ago, my husband came home from the store with groceries and I went out on the side porch to help him bring them in the house. As I started to go down the steps, I noticed a rather large rattlesnake slithering towards the house. I immediately told my husband who continued to unload the car. He brought in a load and went out for more as the snake was making his way towards the area under the porch. Although the snake, of course, made me feel a little uneasy and I didn’t expect to see him, there were no weak knees nor any sitting on the deck / porch. I decided to share this last story to illustrate that what might be a trigger for one person might not be for another…When I told my daughter this story, she totally thought that I would finish the story by telling her how I was sitting on the porch, unable to move. Perhaps a different day might have a different response. I hope not, but…who knows? I also hope I won’t test that out any time soon.

    I could go on and on…No wonder cataplexy is so hard to explain. At times, it makes no sense. Bring on the rattlesnake (just kidding), no problem…but please don’t make me deal with a smoothie mess. 🙂

    With many thanks to @ferret, @sk8aplexy, and others for helping me understand, accept, and live with cataplexy better than any research studies or textbook definitions ever could have…

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