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2 People With Cataplexy Dating


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#1 AckDreams

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Posted 20 June 2011 - 10:13 PM

I recently started dating someone who has Narcolepsy with Cataplexy too. It's sooo great having someone in my life who totally understands this condition. I don't feel like I have to apologize, hide, or make excuses all the time for my condition's symptoms. The first day we met we instantly were able to read when the other was falling into a sleep attack and so on. Sometimes we recognize one another's symptoms more easily than we recognize our own. So it was no surprise that right after we met we ended up romantically involved. Our cataplexy triggers aren't all the same, thank goodness, but some are. Laughing is one of their triggers but not mine, being startled is a trigger for my cataplexy but not for them. We both cataplexy from excitement, being super happy, being scared, and we both get instantly super tired and can fall into a narcoleptic sleep from stress and worry.

The thing is, I think I am discovering there are some unique challenges that we face because e both have the same condition. For example:

Hanging out with 1 friend is a bit stressful on the friend because they worry what to do if we both go down at once, ie. who to help and will strangers think maybe our friend did something harmful to us!

We have to keep our mutual happiness in check because it triggers both our symptoms.

We both are cataplectic catastrophes in bed sometimes, which can be a real health concern - you know what I mean

Xyrem is a whole other set of issues unto itself!

We tend to overly worry about the other cataplexying so there's an excessive amount of "are you all right?" being asked back and fourth several times a day over the slightest things.

It's too easy to isolate ourselves from the outside world. Neither of us are currently working.

Our Narcolepsies seem to feed off each other - so if one of us says "I'm tired I need to nap" the other always joins in so what ends up happening is we spend way more time happily napping away the day each day. It's tough not having a non Narcoleptic person motivating us to do something other then lay about being sleepy or lazy.

Thunderstorms - we both cataplexy like crazy from thunderstorms - we both have to lay flat and wit it out or be strapped in a wheel chair otherwise we run the risk of cracking our heads open on the floor. Neither of us can really help the other at all when there's a thunderstorm.


Has anyone else dated a fellow Narcoleptic and similiar issues?

#2 AckDreams

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Posted 02 July 2011 - 01:37 PM

Grrrrr! 4th of July is coming up and none of my friends are willing to help us out! No one will hang out with us for fear it'll be too much for them to deal with if we likely both cataplexy at once even though we are willing to use wheelchairs with seat belts! Our first plan to go the beach with the rest of the town was no good because it he and I go down at once it could start a public panic. Our next plan was to watch them from a car parked facing the fireworks was no good because two unconscious people in a car might appear like a suicide pact plus even with seat belts it would still be uncomfortable because there'd be no one to push are heads back and we both get sore necks when we cataplexy in a car with our heads sagging down in front of us. Then we were invited to join 10 friends on a large motor boat and watch the fireworks from wheelchairs on the boat surrounded by friends but then we were uninvited because my friend was concerned that having to narcoleptic on a boat at night was too dangerous.

Frankly I'm flat out of ideas for how to go see the fireworks and at this point I hope it just rains because i'm feeling so frustrated and a bit bitter.

It takes a lot of planning to go anywhere when one person had bad cataplexy, but it takes a ton more planning when there are 2 people who have it. There are times us both having this is great, like how we both are better able ID the symptoms coming on then anyone else and are better able to catch one another and so on. And we both enjoy gettingto lay in bed laughing our asses off at the ridiculousness of this all. But when it comes to planning on doing things outside the home it's just such a pain in the butt. Unlike hanging out with non-narcoleptic friends, we can't assume the other will be able to always help us out if we collapse. Worst of all is what a huge burden it seems to be for regular people to hang out with us. They just worry too much about what to do if we both cataplexy at once.

#3 Taylenne

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Posted 03 July 2011 - 09:21 PM

I'm really sorry you are having trouble organizing a night out for fireworks. I hope you find a way to enjoy the festivities while keeping safe. Could you find a place to lay a blanket down and just lie down while watching the fireworks? That way there's no danger of falling further, or sore necks or injuries (assuming other people don't step on you). It sounds like both of you have significant cataplexy. Could you tell me a bit about how long you are down, if you have any control over the falls, etc... I ask because my 5 yr old was recently diagnosed with Narc/Cat and I'm trying to learn and understand what she is experiencing, especially during cataplexy falls. Are either of you treating the cataplexy with anything other than xyrem?


Anyway, good luck with the 4th of July fireworks. I hope you get to enjoy them!

Tay

#4 AckDreams

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Posted 19 July 2011 - 09:49 PM

Well thank goodness the fireworks are behind us, now we are just struggling to navigate daily life and enjoying summer activities. The latest challenge.... the beach! When my friend goes swimming I insist they wear a life jacket and then I still watch like a hawk and am so freaked out worrying they will cataplexy that I partial cataplexy. I worry about some random kid accidently hitting us with a frisbee or something like that startling us causing us to cataplexy. I can easily imagine us both out cold and then someone thinking we are dead or something etc. It's nice having someone who understands this crazy disorder, but it's so much easier hanging out with someone you are sure will be able to stay awake and help you if you cataplexy in public!

It's easier being with someone who has more energy then me rather than someone who has as little energy as me, then again, it's nice having company on those bad weather days when I can barely get out of bed!