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Only We Pwn Look In Here.


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#1 doinmdirndest

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Posted 21 November 2013 - 08:52 AM

i'm certain the only people interested in the activities/posts of the 'sleepy people' ...are other sleepy people.  and perhaps just a few of our special others, occasionally.

 

not even our md's ever see these forums.  it's just us, folks.

 

certainly, it beats isolation.  forums are good.



#2 rayraybaybay

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Posted 21 November 2013 - 12:50 PM

I think it's because it is hard to relate to the inability to achieve/regulate sleep, which is something that is as natural to most as breathing.

 

It's also hard to comprehend the full consequences of sleep deprivation, etc., with N being an "invisible illness" and all... especially with the social stigmas attached to most of the very limited treatment options.

 

Try to relate as they may, the best people without N can do is think with  "Oh yeah, I'm tired too today... I didn't go to bed until 3am. I bet this is how it feels!..." and it's just like, NO.    lol.

 

It's impossible to imagine the physical, emotional, spiritual, and psychological frailty N can make ya' feel unless you've been there... On the good days, I feel almost-normal. On the bad days, I feel like Lady MacBeth!



#3 IdiopathicHypersomniac

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Posted 22 November 2013 - 08:25 PM

Most normal people can relate to narcoleptics because they've all experienced EDS after pulling an all-nighter, or jet lag.  Mothers with newborns who are woken up several times per night also feel like narcoleptics with the EDS that causes.  I've seen it myself.

 

It's not that they don't understand -- it's that they don't really care.  When my sister developed Parkinsons disease, I researched the disease and called her daily to see how she was.  Did she do the same for me when I got sick?  Nope.

 

On the other side of the coin, some narcoleptics are strange and/or selfish.  How many times do we see the "I'm new to this board ... rant ... help!" posts.  Then, we never hear from these people again.



#4 NightinPhilly

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Posted 23 November 2013 - 07:30 AM

I think normal people relate to EDS but not narcolepsy...and those experiences (all nighters, jet lag, periods of sleep deprivation) help them contextualize EDS but then they overcome that... there lies the difference - we don't overcome EDS without help and targeted focus... it's not just catching up on sleep for a few nights. That is among the many things they don't understand and it's hard to related when 'we don't look sick.' 

 

As for PWN, I think we come here because we're trying to figure it out. I know when I was first diagnosed I was so confused - I only was familiar with narcolepsy with cataplexy, I didn't know how I could have narcolepsy...and what would it mean, etc.  We experience a different range of symptoms, and how we react to medication, etc. is different as well. So it takes a lot to understand what we're dealing with and how we'll have to adjust to cope. I think that causes those 'help...rant' posts. 

 

Some of those people are still here... they may read but not post all the time... but I can say as a frequent reader I appreciate all my fellow PWNs post regarding their experiences, the rays of hope, the glimmers of humor, the knowledge that I'm not alone and others experience something similar to what I do. 



#5 jstjoehere

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Posted 24 November 2013 - 06:32 PM

Having N/C I really dont feel theres anyway possible that anyone normal can relate to our situations. Seriously I take a medium dose of xyrem twice nightly 600mg provigil 300mg of effexor daily and small doses of ritilan to help stay awake. Even with the xyrem I dont sleep well Im up and down alot through the night, and still have my nights through the day. Once in a very great while I will have an almost normal day but even then I have to refrain from a lot of activities I used to enjoy due to my C. Yes I do my own shopping I raise my daughter alone and we for the most part have a normal life with a few little exceptions. As an earlier member posted that normal people might try to relate to feeling tired because they were up late. My narcolepsy didnt really get a hold of me til just after college. I can remember staying up all night sleeping a couple hours and getting up early the next morning whether to work or just go do something. I didnt have to worry about falling down if I got to excited or just because I was so tired, I could at least fight my sleep then. But now thats all changed. Thing is this is how we are theres nothing we can do to change it. Yeah it sucks of course to have this disorder but what we need to do is be thankful that we have drs that treat us, This network to talk to people like ourselves that can truly relate. I rarely get depressed anymore Ive given my self a more positive state of mind with a lot of discipline Ive altered my way of thinking. By doing this im a little more confident, Ive learned to literally make myself get up and do what needs done and Ive learned to watch feeling of C very closely and know when I need to get away from the crowd. Basically this has become my normal life and Im doing all I can to make the most of it. And I hope everyone else is able to do the same.



#6 narcolexie

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Posted 12 December 2013 - 08:30 AM

I joined this group so that I could understand N for my daughter who was diagnosed about 10 years ago. She is an amazing girl and I hate to see her fight with her body everyday and end up depressed. I really appreciate Joe's outlook.. I am hoping that it is a place I can help my daughter get to. It is interesting as I am reading all of the comments regarding the variety of symptoms, I also have a lot of them and never made the connection that I might have N too. Too many of those symptoms that my daughter and I have in common I thought were just dumb luck.  Thanks for having a place for us to learn!