Cataplexy war scars
I'm curious to know if anyone else is keeping track of all the cataplexy/accident related scars?
It might sound weird but I started a sort of "album" of pictures of all the ways that cataplexy has hurt me....for example last week i dropped the iron on my leg...huge burn! 🙁
Broken ankle falling down stairs which the awful sleep centre put down to Muchenhousen (? Spelling?) saying I had done it deliberately as I wanted to stay in hospital!! I also had internal bleeding as a result of multiple cataplexies due missing Venlafaxine once (reflex cataplexy). Loads of other minor knocks & bruises. One thing that annoys me is when people close to you say they understand cataplexy but actually freak out when a major one happens! People insist on asking me if I'm "ok"? They know I can't speak so why do they do it? I don't laugh any more since my husband died. Like someone mentioned their boyfriend used to deliberately make them laugh, he did but was always there to catch me!!
I am so very sorry about the loss of your husband,
. It must be heartbreaking to lose the one person you could truly and safely be yourself around. How awful of that hospital staff. I hope there are other options near you and you never have to return there. I see you are new to this community. Welcome! I hope it helps to have a group of super supportive people who understand what you aee going through. Gentle hugs. - Lori (Team Member) Oh wow, my heart seriously goes out to you
. I've also noticed that people only actually start to recognise narcolepsy as a serious condition when they witness my cataplexy attacks. I'm so sorry for your loss by the way. I can't imagine how difficult it must be to go through something like that. If you ever need to chat or seek comfort, we're here for you. And please, reach out to a healthcare professional for any medical concerns or advice if you ever feel too overwhelmed. Your resilience shines through, even in the face of such adversity. Thanks so much for sharing your story with us! Take care, Iris (Team Member Narcolepsy.Sleep-Disorders.net)
When Siri first was released, think it was the iPhone 4 or 5, my Mother had gotten the new phone and we tried asking Siri some questions.
I asked, "what is Cataplexy?"
Siri responded with something about, "Hu Hong Mongolian Grill is located at" ...
I ended up on the floor moments later, the side of my face was pressing hard against the floor for some moments (maybe 10 seconds), I wear glasses so the frame was really pressing into the side of my eye.
Got up and laughed it off.
The following morning, after playing the hour of adult pick up ice hockey, in the locker room a fellow player asked, "where'd you get the black eye?"
I looked at him with a wtf are you talking about, said something like, "huh, black eye?"
Then I proceeded to the restroom mirror to see what he was asking about, sure enough my eye was surrounded by black and blue (not serious, but it was colored more than the regular dark circles under my eyes).
Not even sure I tried to explain how I got it to the guy who asked, but sure enough I got a black eye from Siri causing me severe Cataplexy; back in whatever ~2010.
=\What a story,
! I might of simply said it was Siri's fault and let him mull over that for a bit. 😀 - Lori (Team Member)
I should not come on here while I am tired. I accidentally deleted my previous comment because my sleepy brain told me I replied to the wrong thing. I wanted to delete my reply, not my original comment. There is no undo button for that and now my curious mind is beyond disappointed that I didn't get to read the other reply to my comment yet.
My original comment was that I had recently gotten my first cataplexy injury, from grass of all things. A cut about an inch long on my knee. I did take a photo at the time but wasn't sure why. This cut is now a small scar.
Hi
, no worries, here's the original reply from our Health Leader, Iris: "I always take a photo! I think it helps to document the visible ways in which narcolepsy has affected me. It's strangely comforting...sounds weird right? lol. At least you know it's not just you! Take care, Iris xxx"
I started keeping a journal of attacks on Facebook but now I don't have Facebook. It's one thing that I do miss.
Facebook causes me to become depressed and that trigger's my sleep.Hey! Yes unfortunately social media can be both a blessing and a curse but if it's triggering you then I would definitely suggest avoiding it. Have you thought about maybe starting a small blog of your attacks? Depending on whether or not you like writing or if it's just images/videos...you could try a blog, IG page, Tiktok, youtube...etc?
