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I'm not lazy ~ I am just tired....


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#21 brainysmrf

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Posted 21 January 2009 - 01:42 PM

I just got married about 2 months ago - he knew what he was getting into because I had been since for at least a year before he proposed but now I feel guilty I have been on disability since August and It's very hard for me to the basic things around the house that need to get done.

I want to be the person I was 2 years ago - working 10 hours days, going to the gym 5x a week and still have the energy to have people over on the weekends but now, now I shy away from the outside world and even have anxiety attacks when I go to the store. Has anyone else experienced this? it's almost as if my illness has given the perfect alibi to hide from my life and I'm sick of it but I don't know where to start...

#22 dogdreams

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Posted 21 January 2009 - 11:12 PM

QUOTE (brainysmrf @ Jan 21 2009, 10:42 AM) <{POST_SNAPBACK}>
Has anyone else experienced this? it's almost as if my illness has given the perfect alibi to hide from my life and I'm sick of it but I don't know where to start...


Yeah I totally went through that when I was with my ex. I was totally healthy when I met him and we did all sorts of "strong" things together like camping, exploring caves, rock climbing. He encouraged me to learn how to scuba dive although I didn't take him up on it. Then my N hit hard after being with him for 1.5 years. I was suddenly the "weak" one...always sleeping, walking around in a daze, falling down. He suddenly told me I could never scuba dive because I was too weak (but I actually probably could have.) I couldn't go out with our friends at night because I couldn't stay awake. They'd all be at clubs and I'd be fast asleep at home. I still have never been to a dance club to this day. Whatever. Anyway, I got sick of it. I couldn't cope with not being able to do the things I used to. I even had to drop out of school, which was a huge blow to me. I felt so useless because I couldn't even work and I just sat home all day and took tons of naps and spent hours paralyzed on the floor on any given day.

But now things are good for me. I'm controlling my symptoms, finished my degree, found a patient man who is really nice about my N, and I work full time and have a young son. He wears me out the most! lol But my point is, it didn't last forever for me. I think back then was one of the darkest periods of my life (there have been a couple...) so I know how you feel.

#23 Ashley

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Posted 02 May 2009 - 11:39 PM

QUOTE (Marinaki @ Oct 9 2007, 05:11 PM) <{POST_SNAPBACK}>
Hmm... Relationships and Narcolepsy. An Interesting combination. I am 26 years old, as I look back I had my first symptoms around 16... they were still controlable. Around 20 is when the sleep attacks took over my life. It was then that I was dating the guy we all wish we could some day find; and he was more than understanding that I was just tired and not lazy.... he even understood that I had to stop going to college cause my grades were suffering I could not stay awake to save my life.
At 22 I met another guy that although was at times a flat out scum bag, also understood that there was something beyond my control going on, and at this point I wanted to go back to school, but I also wanted to be able to make plans with my friends and not have to worry about taking a nap before I went to see them (which even that would not always guarentee my not passing out). At this point I had already diagnosed my self with narcolepsy, having demanded a referral for a sleep study a year prior... I was driving home from class one afternoon, and I remember at one point opening my eyes about a foot a way from driving into the back of 18 wheeler and decapitating my self... You don't know awake until you scare your self awake. I went home and stood in my boyfriends room for an hour or so until he came home, motionless, when he got there he asked what was wrong and he flipped out on me... I was so upset that he was angry at me, only to realize that he was upset at the situation... the next day i made my sleep study appt.
Two weeks later I realized the difference between (what normal ) people experience as tired and Sleep Attack tired... Freaken Provigil I wish I'd known you sooner.... my life could have been as vibrant and as happy as it once was.
Now I am dating another who although understands that I have narcolepsy resents it and sees it as an excuse, an excuse to be antisocial, an excuse to go home, an excuse to not go out... he still and sadly i don't think that he will does not see it as a disability but rather an inconvinience.... and that saddens me.

I missed my best friends birthday cause I was too tired.
I slept through my sister's graduation.
I skipped my own because I could not forsee sitting there for 3 hours...motionless.
I sleep on my break instead of eat.
I can't go to the movies.
I can't sit on a couch infront of new people... Comfy is no good.

but all those are nothing compared to the feeling of the decision to stop my medication to get pregnant to have a child, to be selfless.... but then in order to be a functioning parent go back on it after birth, or do i not have children at all and just adopt.

It's funny because something so 'invisible' has so much control over your life and the decisions you make, while every one else sees you as normal.

I'm sick of being moody.
I'm sick of being cranky.
I'm sick of not being able to do so many 'boring' things.
I'm sick of falling asleep while others drive.
I'm sick of not sleeping at night.
I'm sick of not eating lunch.
I'm just sick and tired of being tired.


Very beautifully written. I feel that exact way. I'm getting divorced because my husband just saw it as an excuse too.

#24 jenji

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Posted 03 May 2009 - 12:53 PM

[quote name='Ashley' date='May 3 2009, 12:39 AM' post='9810']
Very beautifully written. I feel that exact way. I'm getting divorced because my husband just saw it as an excuse too.
[/quote

No offense, Ashley, but it sounds like your soon to be ex-husband is in need of a swift kick to the nuts.
You're better off without that kind of negative energy.

Good luck.
jenji