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#1 Lais02

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Posted 02 September 2008 - 09:35 PM

I need to vent, so I appologize in advance.

My mother just told me that maybe the whole problem is that school is just too hard for me. She said my major is too difficult for me, and I either need tutoring or to drop out of school. She also said that I must not want to finnish or I would try harder to be awake!

angry.gif

I've been diagnosed for a year now. 2 of my siblings have also been diagnosed with N since then. Why can't my parents realize it is a real thing.

I LOVE my major, and it's not that it's too difficult to do the work. The problem is being awake to either be in class or study. For instance I have an extremely difficult time waking up, so the 8 am classes are very challenging for me to get to ON TIME. If I'm 5 mins late, I'm thrilled that I've made it to class that day. If I'm 15 mins late, I'm still thrilled I made it to class. If I'm 30 mins late, again... I'm happy I've made it. ANYTIME I'm late I HATE being looked at as a slacker who doesn't care. That's what my profs think which is crazy, but they won't take the time to understand or even acknowledge that N exists in my life.

Last fall semester I had just started on Provigil and my world was turned right side up again. I was AWAKE! I took 16 credits and tutored other college students in a variety of subjects. I got all A's and B's.

At some point in about January the Provigil wasn't doing anything anymore.

Last spring semester I did not work at all. I took 12 credits. I failed all my courses.

So why is it so difficult for my parents to even see there is something going on beyond my comtrol. I didn't ask for N, and I haven't found a solution for it lol.

I just wish people, or at least my parents would try to understand rather that saying things like:
"You're just lazy"
"Maybe school isn't for you"
"Your major is too hard" (btw I'm a senior!!! I've made it this far!)
"I don't believe in N"
"If you'd just go to sleep earlier you wouldn't need a nap"
"You just need to TRY harder"
"Other people don't need to sleep in the middle of the day"
"How can you expect to live a normal life if you're always sleeping" REALLY!!??

WHAT DO THEY THINK I'M TRYING TO DO... JUST TAKE OUT TONS OF LOANS FOR SCHOOL FOR FUN???

I just don't get it! It seems like there is nothing I can say to them about N or anything wrong in my life that they don't blame on my lack of intelligence or laziness.

If I wasn't intelligent enough for mechanical engineering I wouldn't be a senior in this major. I wouldn't tutor other college students in calculus, physics, chemistry, logic, or anything at all.

And I'm not lazy... I have Narcolepsy!

Ok I'm done now, sorry guys... I just don't know who else to tell this to.

#2 greatbig47

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Posted 02 September 2008 - 10:25 PM

Apologize? That's uncalled for here, Kell...Not here. Not with us.

btw...(in your own words)...your a senior!
THAT is worthy of some HUGE recognition!
Quite? Now? That doesn't make a lot of sense.

I know what it's like to have parents that don't get it. I think we've all had to deal with the BS of hearing comments like you mentioned. Hearing it from family can just be the biggest pisser sometimes.

Sometimes all we have is what we know of who we are. Parents won't always get it. Friends won't always get it. Hell, a lot of us have ran across a doctor (or 2, or 10) that didn't get it. None of these people know you like you do...but there is OBVIOUSLY a really successful and amazing person within, otherwise you'd probably puttered out your very first semester...right?

What other people tell you may matter, but it's what you tell you that trumps all.

I flat out reject your apology. I applaud you getting it out of your system...it IS what we are here for.

love and prayers

-Stu

#3 sleepylama

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Posted 02 September 2008 - 10:25 PM

I think we can all relate to this one in one way or another...it has been something I have been discussing quite a bit w/my hubby recently because the ignorance of others (he is not included in that category, he is my rock) can be incredibly overwhelming and isolating for me at times. I came across this website on another message board and wanted to share it. Specifically the final blog, which I pasted below. I think it helped me to find a new way to approach the comments of others, which at times are only ignorant or misinformed but well meaning, at other times are simply a refusal to become informed.

website:
http://www.wearenotlazy.com/

Don't Blog:


<H2 class=date-header>Sunday, 24 August 2008</H2><H3 class="post-title entry-title"><A href="http://www.wearenotlazy.com/2008/08/dont_24.html">Don't </H3>You wouldn't ask a deaf person why they can't hear, or tell them it's their fault for not listening properly.

You wouldn't tell a blind person they should try opening their eyes a bit wider, because there's no such thing as blindness, they're just making it up. You can see, so why can't they?

You wouldn't tell someone in a wheelchair they should put more effort in, that they could walk if they weren't so lazy.

So don't ask me why I don't just try harder to stay awake. Don't ask me why I can't wake up in the morning, am I lazy or what? Don't tell me I could stay awake if I really wanted to, because you can, so why can't I?

Don’t you think I wish I could?

- Anne, 27, Bath, England

#4 Henry G

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Posted 03 September 2008 - 12:41 AM

Intolerance and ignorance tends to be often a human trait.

My Narcolepsy now serves a filter.

Very evolved and blessed are the souls who can trust the veracity of a Narcoleptic. Because I tell you, even I have failed - I jumped into assumptions on an occasion: a hi-socialite wedding for which I was not invited. The father of the bride was ever so cold and rude towards me. Act bored when I greeted him, avoided eye-contact. I began talking ill of him to his peers and one just said: Oh don't worry he is often like that , he was diagnosed with this condition called Narcolepsy.

So it's difficult to be level headed. Humans are prone to judge, always, to generalize, to stereotype - but judging. Don't. He acts weird, looks weird - do you know him? do you know the story? As long as he is not really attacking you or overtly intentionally insulting you .. I try to make my judging mind - to just shut up. It is hard though smile.gif But with practise .. I hope I get there.

Back to the "Filter"

I can only count in one hand, the very very few people who felt, believed, trusted me that I never made things up. I am a proud individual why should I seek sympathy? But my telling them or letting them know was to lessen my suffering, make them understand that i do not wish to let ppl down : i am always willing but not always able.

Today, tonight I have to travel to Brazil. I am scared and have been for the last 2 days. The logistics are a nightmare. And recently been living a nightmare because of my upstairs neighbours. Before I would try and rest whenever this body failed. But now I can't. There is incessant noise or loud bangs at random times; the anxiety or the fright made things worse. Been like that for months. I haven't been able to sleep properly and it's taking it's toll. Something tells me I would lose it, my mind for real, but am having a break now to Brazil.

I still have to do stuff: pack, organize money, see my sister. I have no sleeping pills (so scared of them now) but am or have been trying to get drunk in order to force some uninterruptible sleep. Feel often horrid when i wake up tho. See even with industrial-strength ear plugs I still get woken up. Horrible family upstairs. Talking with them neighbours is useless. Everyone else complains, but I am beneath them - I get the full noise. When I get back from Brazil I will fight. Damn I will. No reason fighting now weak, it's not efficient / strategical

Real lack of sleep for a N person, leads to immense fatigue, cold-sweats and ultimately depression.

But I've been through worse, much worse - and I've learn the much worse can cost me dearly like my vision on the right eye going blurry for ever. So there are limits.

I live on my own. Life in England is hard. Too cold. No proper friends.

Nevertheless there is hope for all of us. We are helping each other. By joining forces we save energy and still enhance our own powers. Ultimately we will be heard, we will spur greater research, we will find other N brothers and sisters. If it wasnt for the web I would have never known about N.

So we vent in frustration and narrate our woes. But as I see, the future is bright and happy and very awake n alive.

I agree with Stu, here we should never say sorry.

We are all loving and accepting.

I am still lucid not drunk yet. But I hope the Cognac kicks in soon I need some serious sleep - even if short.

Loved that blog btw.

hugs

H

QUOTE (sleepylama @ Sep 3 2008, 04:25 AM) <{POST_SNAPBACK}>
I think we can all relate to this one in one way or another...it has been something I have been discussing quite a bit w/my hubby recently because the ignorance of others (he is not included in that category, he is my rock) can be incredibly overwhelming and isolating for me at times. I came across this website on another message board and wanted to share it. Specifically the final blog, which I pasted below. I think it helped me to find a new way to approach the comments of others, which at times are only ignorant or misinformed but well meaning, at other times are simply a refusal to become informed.

website:
http://www.wearenotlazy.com/

Don't Blog:


<H2 class=date-header>Sunday, 24 August 2008</H2><H3 class="post-title entry-title"><A href="http://www.wearenotlazy.com/2008/08/dont_24.html">Don't </H3>You wouldn't ask a deaf person why they can't hear, or tell them it's their fault for not listening properly.

You wouldn't tell a blind person they should try opening their eyes a bit wider, because there's no such thing as blindness, they're just making it up. You can see, so why can't they?

You wouldn't tell someone in a wheelchair they should put more effort in, that they could walk if they weren't so lazy.

So don't ask me why I don't just try harder to stay awake. Don't ask me why I can't wake up in the morning, am I lazy or what? Don't tell me I could stay awake if I really wanted to, because you can, so why can't I?

Don’t you think I wish I could?

- Anne, 27, Bath, England


#5 Marcianna

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Posted 03 September 2008 - 12:10 PM

I think it is just lovely that everyone is being so supportive for you!

I myself am not in that kind of mood today. angry.gif Happy nice words are not flowing from me so easily. But I do want you to know I feel your pain. And I hope things turn up for you soon with your classes. And If not get hold of me and we can go parade around with a couple of two by fours..... perhaps convincing people that they should listen more attentively to what we are trying to say!

unsure.gif

(not that I would ever hit anyone on purpose, but if for some reason I were to doze off or have cataplexy, I would find it ever so fitting for them to get whomped in the head! There! Do you believe me now?!?!?!?!?! Perhaps if I tried harder I would not crack your skull open!!!!!! laugh.gif OOPS!!!!!!!)

#6 greatbig47

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Posted 03 September 2008 - 01:10 PM

Ah...what a fun vision...

A sort of modern-bizzaro Thelma and Louis kickin @ss on anyone that bothers the sleeping... smile.gif

Scary...yet theraputic...

QUOTE (Marcianna @ Sep 3 2008, 01:10 PM) <{POST_SNAPBACK}>
I think it is just lovely that everyone is being so supportive for you!

(not that I would ever hit anyone on purpose, but if for some reason I were to doze off or have cataplexy, I would find it ever so fitting for them to get whomped in the head! There! Do you believe me now?!?!?!?!?! Perhaps if I tried harder I would not crack your skull open!!!!!! laugh.gif OOPS!!!!!!!)


#7 Lais02

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Posted 03 September 2008 - 11:05 PM

QUOTE (sleepylama @ Sep 2 2008, 08:25 PM) <{POST_SNAPBACK}>
www.wearenotlazy.com
Don't Blog:

You wouldn't ask a deaf person why they can't hear, or tell them it's their fault for not listening properly.

You wouldn't tell a blind person they should try opening their eyes a bit wider, because there's no such thing as blindness, they're just making it up. You can see, so why can't they?

You wouldn't tell someone in a wheelchair they should put more effort in, that they could walk if they weren't so lazy.

So don't ask me why I don't just try harder to stay awake. Don't ask me why I can't wake up in the morning, am I lazy or what? Don't tell me I could stay awake if I really wanted to, because you can, so why can't I?

Don’t you think I wish I could?

- Anne, 27, Bath, England



So... I just emailed this to my parents lol. I hope they at least read it.

I LOVED IT!!!

Thanks so much for posting it and the link. You're awesome!


QUOTE (Marcianna @ Sep 3 2008, 10:10 AM) <{POST_SNAPBACK}>
I think it is just lovely that everyone is being so supportive for you!

I myself am not in that kind of mood today. angry.gif Happy nice words are not flowing from me so easily. But I do want you to know I feel your pain. And I hope things turn up for you soon with your classes. And If not get hold of me and we can go parade around with a couple of two by fours..... perhaps convincing people that they should listen more attentively to what we are trying to say!

unsure.gif

(not that I would ever hit anyone on purpose, but if for some reason I were to doze off or have cataplexy, I would find it ever so fitting for them to get whomped in the head! There! Do you believe me now?!?!?!?!?! Perhaps if I tried harder I would not crack your skull open!!!!!! laugh.gif OOPS!!!!!!!)


I love you too! LoL We should head out with some 2 by 4's. That would at least be pretty entertaining! laugh.gif

Thank you to all of you for replying.

And thank God, today was better than yesterday smile.gif


#8 Kimberly

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Posted 04 September 2008 - 08:31 AM

QUOTE (Lais02 @ Sep 3 2008, 11:05 PM) <{POST_SNAPBACK}>
So... I just emailed this to my parents lol. I hope they at least read it.


Keep us updated -- especially if this helps them to start thinking in another light.

#9 AssociatedWithFire

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Posted 23 November 2009 - 01:41 PM

It has been harder than hard to try and get people to understand what its like and what I have to deal with, mostly cause when confronted my brain just cant come up with anything. It feels like I get dumber instantly. than hours later if Im lucky it hits me....OH I should have said....Its a hard battle I lose every time. My own mother doesnt get it either. I always get "Im just useing Narcolepsy as an excuse" and "I need tto ajust my mood and not get angry at people, I can do that cant I" Ugh! If anyone has any links that help explain what it is like to stubborn people I would love to know myself. I keep telling my mother I live a different life now, before I may have been a jerk, but now Im not a jerk anymore but my Narcolepsy is. :)