32 replies to this topic

[Insomniac Mama]

You know Deathrabbit, that is very articulant way of putting things. I sometimes wish people would understand better what N is or what we go through. I know it's my husband's illness but this illness doesn't just belong to him. It belongs to all of us (me, and our kids). This disease sucks but I am ready to speak up more about it to help educate others. Glad to be around others who get it.

[Megssosleepy]

I've said it before and I'll say it again. I wish narcolepsy came with like a whole bunch of boils or you started randomly bleeding out of your fingertips or something. People just don't take an illness seriously unless they can see it. It's even worse for me because I don't have cataplexy, so I can't even collapse in front of anyone to bolster my cliam.

I just LOLed (no really I did, out loud!) "Like"

[dormir]

My entire upbringing was fundamentalist Christiandom. I used to tell my parents about the sleep paralysis (never the hallucinations) and the constant vivid dreaming. They said that sleep paralysis was satanic and needed spiritual deliverance. The vivid dreaming was a gift from God who was speaking to me prophetically and that I had an active imagination. The constant fatigue was because I wasn't managing stress well, was full of self-pity, and I was lazy. Can you imagine if I told them about the hallucinations?!

Many people, religious and not, do not believe a medical condition exists without outward manifestation. I think that is why mental illness is so stigmatized.

Obviously narcolepsy is a neurological problem, but since a lot of it is internal, people are totally dismissive of it. People are also dismissive of it because the symptoms are scary and a lot of people don't want to talk about it. If you don't talk about it, it doesn't exist. You don't give Satan any stronghold if you are religious and if you aren't religious, positive energy and changing habits will make it all better.

Changing habits and lifestyle can help a lot with narcolepsy, but because it is neurological, it's not just a matter of being less stressed and sleeping better. It is also not even close to being Satanic possession.

I recently told my mom that everyone has sleep paralysis and shallow breathing, but most people don't remember it because it occurs during REM sleep. She just balked at me. I was like, "Google it."

[munky]

I recently told my mom that everyone has sleep paralysis and shallow breathing, but most people don't remember it because it occurs during REM sleep. She just balked at me. I was like, "Google it."

But Google is the Devil!


Sorry ... couldn't resist ...

[DeathRabbit]

My entire upbringing was fundamentalist Christiandom. I used to tell my parents about the sleep paralysis (never the hallucinations) and the constant vivid dreaming. They said that sleep paralysis was satanic and needed spiritual deliverance. The vivid dreaming was a gift from God who was speaking to me prophetically and that I had an active imagination. The constant fatigue was because I wasn't managing stress well, was full of self-pity, and I was lazy. Can you imagine if I told them about the hallucinations?!

Many people, religious and not, do not believe a medical condition exists without outward manifestation. I think that is why mental illness is so stigmatized.

Obviously narcolepsy is a neurological problem, but since a lot of it is internal, people are totally dismissive of it. People are also dismissive of it because the symptoms are scary and a lot of people don't want to talk about it. If you don't talk about it, it doesn't exist. You don't give Satan any stronghold if you are religious and if you aren't religious, positive energy and changing habits will make it all better.

Changing habits and lifestyle can help a lot with narcolepsy, but because it is neurological, it's not just a matter of being less stressed and sleeping better. It is also not even close to being Satanic possession.

I recently told my mom that everyone has sleep paralysis and shallow breathing, but most people don't remember it because it occurs during REM sleep. She just balked at me. I was like, "Google it."

Wow, that must have been scary hearing those thing from your parents. No wonder you were stressed if you grew up thinking you were getting Sataned.

[dormir]

munky:

 

Haha!  Google is the devil indeed.

 

 

DeathRabbit:

 

It was scary!  I was always stressed out/anxious because like you said, I was getting Sataned all the time.  In my little Christian world, that meant I wasn't a good Christian or an honest person or Lord knows what else.  If you have sin in your life, God can't bless you, according to the ways of my upbringing, so it felt like I had some sort of sin because of this.  Wow!  I need to get more therapy STAT.  

[CATxi]

been there. i have N with HH. i was 4 the first time it happened that i can remember. mom my was always there to support me and she beleived everything i said. my father however, did not. everything was just my imagination..and then it became my need for attention, and then it became my moms fualt for letting me be like that..then all of a sudden i was lazy....then when i got older i was a hypocondriac. when i was diagnosed he said he didnt beleive it and that im not falling asleep at random times like that lady does on duece bigalow. i told him thats because i dont have classic n w/ cataplexy. he still seemed skeptical. he says doctors are full of it. and they change their minds every day. he doesnt really say much about it now, and when i talk about it i can feel he still doesnt really beleive it. dont get me wrong, i love my dad, hes such a good person. always doing right and going to church and whatnot. but hes very old fashioned. he thinks will power and the mind have alot to do with everything, and in a way hes right. but thats what he beleives. imay  not like it but thats just what it is. it used to hurt a lot, but now i know that people opinions really dont matter.

as much as we want the support of certain people, sometimes its just not going to happen, at least not right away. its best not to push it on them. just give them reading materials, websites, books, take them with you to your doctors appointments, esc...thats all you can do. the rest is up to them.

and if it still doesnt happen, try to sorround yourse lf with people who do support you no mater what...

[DeathRabbit]

I admire your patience. I would have quite harsh words with my Dad if he reacted like that. You're a better person than I. As it is, my Dad believes in N and tries to be supportive, but some of the suggestions he makes some times make me think he believes it's a psychiatric disorder instead of an organic problem. But he tries and he's been super supportive, so I can forgive the occasional comment that irks me.

[DeathRabbit]

I really hate to see religion dying out as it is these days, being a kind of Christian type person myself, but I think some of the intolerant views bred in Christian subculture are to blame. I realize in order to be religious you have to have strict views on right and wrong, but that doesn't mean you need to inflict them on others. I like what St. Francis said "Spread the gospel. Use words only when necessary."

[munky]

I realize in order to be religious you have to have strict views on right and wrong,

 

This is actually where most religions go wrong, in my opinion. They're too set on making things black and white. The world is not black and white--it's full of greys, and varying shades of those.

[DeathRabbit]

That's true. There's a balance to strike I think. You need to be true to what you believe (and really that goes for anyone religious or not) or you betray yourself. But also, you have to realize that we live in the real world and things can be complex, and so you shouldn't always accept the obvious conclusions.

[munky]

I've been known to tell people my religion is "Kendraism." Yes, I have a certain, defined system of beliefs by which I live. That system doesn't quite fit into any system of organized religion. Also, any part of it may change at any time, depending on what new things I have learned, experienced or observed. About the only thing that doesn't change is the belief that everyone needs a strong system of beliefs to guide them, but that the system must be malleable enough to incorporate new concepts or experiences--without giving way completely. Unelss, of course, it should.

[DeathRabbit]

I've been known to tell people my religion is "Kendraism." Yes, I have a certain, defined system of beliefs by which I live. That system doesn't quite fit into any system of organized religion. Also, any part of it may change at any time, depending on what new things I have learned, experienced or observed. About the only thing that doesn't change is the belief that everyone needs a strong system of beliefs to guide them, but that the system must be malleable enough to incorporate new concepts or experiences--without giving way completely. Unelss, of course, it should.

I think that's actually pretty close to how I feel. I sometimes wonder if I'm not just a cog in a greate cultural phenomenon, considering many of my friends also seem to subscribe to some variation of the above. Perhaps I'm just a contrarian who gets worried when too many of my fellow fish swim with me. But anyway, we should proabably /threadjack