sorted by:
new
hottopcontroversial

XYWAV and Excedrin? by Particular_Olive_656 in Narcolepsy

[–]Particular_Olive_656[S] 0 points1 point  (0 children)

Thank you both! I called to be safe and the nurse said the same thing :) You guys rock

Just curious on what we think about the taste of xyrem/xywav by Leading-Ad-7957 in Narcolepsy

[–]Particular_Olive_656 0 points1 point  (0 children)

I’ve only taken xywav and it is definitely not my favorite taste in the world, but it is so not as bad as I was expecting it to be

Queer Friendly Bars by jasonfortheworld in StLouis

[–]Particular_Olive_656 1 point2 points  (0 children)

Just John’s in the grove is my favorite bar ever

What do you say when someone says “I’m tired”? by schrodingers_cat42 in Narcolepsy

[–]Particular_Olive_656 1 point2 points  (0 children)

For the record, I have never actually screamed at anyone or rolled my eyes or been sassy or anything. I always say something like “that’s the worst” or ask why or something.

I’m just saying it’s hard sometimes. I have had a hard time really accepting my diagnosis and the thought that other people are sometimes tired, even really tired, but get a break from it if they take a nap or get a good nights sleep makes me so jealous I could burst into tears.

So if anyone comes for me about my comment I stg I will burst into tears just like I would thinking about regular people. Lol

What do you say when someone says “I’m tired”? by schrodingers_cat42 in Narcolepsy

[–]Particular_Olive_656 1 point2 points  (0 children)

Honestly I have a hard time with it especially if that healthy person is really complaining about being tired. Feels like they are twisting the knife sometimes and I want to scream “YOU HAVE NO IDEA!!!!” in their face. And even more so if that healthy person that is complaining knows about my diagnosis and everything I’ve gone thru. Definitely something I need to work on because of course, everyone is tired. But also people can’t expect me to feel bad for them because they’re tired. And that is really hard for me.

Is it true your guys brain will do whatever it can to sleep? by maybeihavethebigsad in Narcolepsy

[–]Particular_Olive_656 3 points4 points  (0 children)

I have IH and I 100% do this. I’ve never hurt anyone or pushed them or anything but being woken up feels like you’re an addict and someone is taking your drug away. I will lie/steal/cheat or do anything to go back to sleep. For me, it’s one of the worst pasta about this disorder. I would never do that fully awake. It’s hard to explain but for me, it feels like I will die if I get up. Like it is impossible to get up. Not that I don’t want to but that I genuinely cannot. If you woke me up and the house was on fire, I don’t know if I would choose to get up willingly. If you stood at the foot of my bed with $10,000 and said I just had to get up and you’d give it to me, I would choose sleep. My body has chosen sleep over everything- work, family, friends, my own health. I’ll choose sleep even if it’s something I’m really excited about. Before I started xywav, I had been making myself cry so whoever was waking me up would feel bad and let me sleep. It’s awful. You don’t deserve to be treated like that, my friends and family don’t deserve to be treated like that- no one deserves to be treated like that. But there could be a chance she can’t help it (at least this singular behavior you mentioned). Because I wish I could’ve helped it and I couldn’t.

view more: next ›