Pickles and Giggles
Last updated: May 2023
Have you ever been so overwhelmed that you collapse and become paralyzed? You can hear people trying to help you, but you cannot respond to them. Your brain is working, but your body is refusing to move on command.
If you have experienced this, you might have narcolepsy with cataplexy. They can sometimes go hand in hand.
Cataplexy attacks can be scary and embarrassing
In my experience, heightened emotions are almost always the reason for my cataplexy attacks. I call them attacks because that is what it feels like for me. When I lose control of my body, it is not only scary, but it is embarrassing at times.
I try to limit where I go or what I do when it comes to something extremely exciting or riveting. If I know I am going to be somewhere like a funeral, I make sure my husband is on the lookout for any sign of an attack. He knows to be close and to hold my hand when I am on the brink of crying or hearing bad news. There have been times when he has noticed I am having a cataplexy reaction before I even realize it.
Cataplexy caused by being startled
I can have a cataplexy episode from being startled, and this has caused some turmoil in my house. I often get upset if someone rushes into a room without warning, because the probability of me falling down is high. My husband has been put in this situation more than once, and thankfully, he has learned to "announce" himself when entering a room. He will cough or make a noise so that I am aware he is in the vicinity. I am sure he gets tired of doing this, yet he continues to be supportive in this way, and I am so very thankful.
A surprise-induced cataplexy attack at home
I was putting groceries away one day, and I did not hear my spouse approach me. We had some music playing in the background, and as he got close to me at the refrigerator, he sang a couple of words to the song and caught me by surprise. He was standing so close that the words he was singing vibrated my ears.
I happened to have a plastic container of sliced pickles in my hand when this happened, and next thing I knew, I was being held up by my shirt and pickle juice was all over me! He luckily caught me before I hit the floor.
Initially, I was upset that this happened, but I know he feels awful if he causes an attack.
Doing our best to keep me safe
After I was able to get my thoughts in order, I made sure to thank him for helping me and not letting me hit the ground. He just simply forgot to announce his presence. I try to help him understand that it is not his fault and that I do not blame him when he forgets.
This is something neither of us can control 100 percent. We can try to avoid situations like this, but we cannot stop them from happening. We can only try to keep me safe and in a semi-controlled environment.
Giving myself a break
Sometimes I feel like cataplexy is the shot-caller. I make decisions around "what-ifs" and am always in a state of precaution. I’m relieved that I have figured out ways to lessen the severity; however, this takes a lot of planning ahead.
This is my life now, and I have embraced all the silly things that happen to me. I look back at the pickle juice episode and laugh about it now. My life will bring a lot of adventures in the future, and I can only imagine how my cataplexy will affect it. I just need to give myself a break and giggle when it happens.
Have you participated in our forums?
Join the conversation