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#1 munky

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Posted 04 January 2013 - 01:07 AM

I have reached a point where I just ... I don't know. I don't want to let this thing control my life and force me to do things. The focus of that has become my scheduled nap at work. Every night at work, around 3:15-3:20 AM, I'm supposed to take a scheduled nap--either in my car (my preference) or in an empty office in our area (when the weather is nasty).

Lately--the last two weeks, actually--I just ... don't do it. I have no real reason to skip it, but every night, I find an excuse. In fact, one day last week, I had to work a 12-hour shift because of the snowstorm. I should have taken two naps that night, and I didn't do either.

I know they help. When I take my nap, I don't have sleep attacks at work and I can drive home with no problems. When I don't take the nap, I have sleep attacks or I'm fighting to stay awake. I usually end up falling asleep in my car before I drive home--without meaning to. I get in my car, turn it on so it can start warming up, and the next thing I know, it's been anywhere from 30 minutes to an hour, and I'm slumped in my seat, head hanging forward, neck stiff as a frozen turkey ... and I'm still tired. I have to stop on the way home and walk around. Sometimes, I make it to a store or gas station, but sometimes I'm just pulled off on the shoulder of the highway (someplace where it's good and wide) and pacing in the grass. Twice, I've had to explain to a state trooper that I had been at work all night and I was tired, so I pulled over to walk around a bit in order to wake myself up. Thankfully, both officers praised my choice and told me to take my time and be sure to pull over and do the same again if I needed to--you CAN get a ticket for driving while you're sleepy.

So I know the naps help! And I know my co-workers, if they knew about them, would be envious. But, dammit, I don't want to have to take them! Staying home and being lazy for a week because I choose to (vacation) is one thing, but staying home and doing nothing all week because I have to (say, recovering from an illness or surgery) drives me crazy. The naps are the same way. I don't mind taking a nap because I choose to, but taking one because I have to drives me nuts!

And, lately, I just can't make myself look at it as a choice. Yes, I can choose not to take the nap--I have been choosing not to for the last two weeks, after all! But the consequences are obvious and debilitating. Which makes it obvious that I need that nap--which makes me feel like I'm being forced to take one. I am not in control of my life--of my own body, for that matter!

I hate it. I hate it. I HATE IT!!

I keep telling myself I'm going to take my nap, like I'm supposed to, like I need to. But when the time comes, I get angry and, dammit, don't want to do it! So I go downstairs and read for a bit, instead. And then, when my break ends, I come back upstairs to work. I sit here and stare at my computer screen and I know that I screwed up again, and I just want to cry.

And in a little over a week, I go on 12-hour shifts permanently and I'll need the naps more than ever. But, dammit, I don't want to!

No point, really ... just venting.

#2 DeathRabbit

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Posted 04 January 2013 - 02:44 PM

I have reached a point where I just ... I don't know. I don't want to let this thing control my life and force me to do things. The focus of that has become my scheduled nap at work. Every night at work, around 3:15-3:20 AM, I'm supposed to take a scheduled nap--either in my car (my preference) or in an empty office in our area (when the weather is nasty).

Lately--the last two weeks, actually--I just ... don't do it. I have no real reason to skip it, but every night, I find an excuse. In fact, one day last week, I had to work a 12-hour shift because of the snowstorm. I should have taken two naps that night, and I didn't do either.

I know they help. When I take my nap, I don't have sleep attacks at work and I can drive home with no problems. When I don't take the nap, I have sleep attacks or I'm fighting to stay awake. I usually end up falling asleep in my car before I drive home--without meaning to. I get in my car, turn it on so it can start warming up, and the next thing I know, it's been anywhere from 30 minutes to an hour, and I'm slumped in my seat, head hanging forward, neck stiff as a frozen turkey ... and I'm still tired. I have to stop on the way home and walk around. Sometimes, I make it to a store or gas station, but sometimes I'm just pulled off on the shoulder of the highway (someplace where it's good and wide) and pacing in the grass. Twice, I've had to explain to a state trooper that I had been at work all night and I was tired, so I pulled over to walk around a bit in order to wake myself up. Thankfully, both officers praised my choice and told me to take my time and be sure to pull over and do the same again if I needed to--you CAN get a ticket for driving while you're sleepy.

So I know the naps help! And I know my co-workers, if they knew about them, would be envious. But, dammit, I don't want to have to take them! Staying home and being lazy for a week because I choose to (vacation) is one thing, but staying home and doing nothing all week because I have to (say, recovering from an illness or surgery) drives me crazy. The naps are the same way. I don't mind taking a nap because I choose to, but taking one because I have to drives me nuts!

And, lately, I just can't make myself look at it as a choice. Yes, I can choose not to take the nap--I have been choosing not to for the last two weeks, after all! But the consequences are obvious and debilitating. Which makes it obvious that I need that nap--which makes me feel like I'm being forced to take one. I am not in control of my life--of my own body, for that matter!

I hate it. I hate it. I HATE IT!!

I keep telling myself I'm going to take my nap, like I'm supposed to, like I need to. But when the time comes, I get angry and, dammit, don't want to do it! So I go downstairs and read for a bit, instead. And then, when my break ends, I come back upstairs to work. I sit here and stare at my computer screen and I know that I screwed up again, and I just want to cry.

And in a little over a week, I go on 12-hour shifts permanently and I'll need the naps more than ever. But, dammit, I don't want to!

No point, really ... just venting.

Sorry you're having a rough go!

#3 munky

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Posted 05 January 2013 - 01:28 AM

Sorry you're having a rough go!


Thanks! And I was doing so well for a while there, right after the diagnosis! Guess I just suddenly slammed hard--and at full speed--into the Brick Wall of Denial. I'm just going to have to come to terms with it, and make myself accept that I have to take these damned naps.

Thankfully, I have a week off work, starting Saturday, before the 12-hour shifts start. I plan to use that time to do some ... "soul searching," I guess would be the best term--chip away at the mortar until the bricks come down, so to speak.

I'm so grateful for these forums! I needed to get as much of the anger and frustration out as I could as the first step, and these forums gave me a place to do that. Can't move forward without breaking down the wall, after all.

I think I'm babbling again. I just meant to say thank you. Being able to vent here, knowing that there are people out there who understand and sympathise, is a real help.

#4 stoic

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Posted 05 January 2013 - 03:23 AM

Sorry to hear munky - vent away!

I struggle with scheduled naps sometimes too. Especially when it can take up to 5-10 minutes to actually fall asleep at times.

Sometimes I'll go to get up, but I just convince myself the nap is my medicine and I need it.

However, realising there is no cure and you need to do this forever can be pretty depressing at times.

#5 Megssosleepy

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Posted 22 January 2013 - 04:00 PM


However, realising there is no cure and you need to do this forever can be pretty depressing at times.

 

This is where I get myself into trouble as well.  Its really nerve racking to know it never going to end... even with the medicine, living healthy, getting exercise, and scheduling naps... nothing makes it go away!

 


I am struggling with the fact that I want to start dating again... but, I can't date like I used to due to the crazy medication Xyrem.  "sorry I cant eat two hours before bed" or "I have to be home and in bed by 10:00 so I have enough time to take my meds"  I am going to sound like a crazy old person or something!  

 

It's like the N is a huge part of us and the fact that we cant control it is so frustrating!  why cant we just take an easy pill and sleep the night and one in morning to last all day? 

 

Munky- I am sorry your going through this... its hard when we have to fight with ourselves due to this damn illness!  It sucks, but you will get through this frustration  just as I will get through mine.  With each step back we gain knowledge to help someone else in the future.  I can't really nap any more, I used to fall asleep so fast.  Now with taking Xyrem I am still super tired but, I just cant fall asleep, and forcing myself causes SP :(

 

Sometimes just venting can make you feel better... so I hope that getting it out in the open helped a little bit!



#6 DeathRabbit

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Posted 23 January 2013 - 11:02 AM

@Meg-If you find someone who really cares, they wont worry about any of that. :) Don't lose hope. My current girlfriend, I told her about all my Narcolepsy and emotional issues up front and she was basically like "I still like you enough to put up with all of that." I'm sure you can find someone of that calibre as well.



#7 Megssosleepy

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Posted 23 January 2013 - 02:13 PM

@Meg-If you find someone who really cares, they wont worry about any of that. :) Don't lose hope. My current girlfriend, I told her about all my Narcolepsy and emotional issues up front and she was basically like "I still like you enough to put up with all of that." I'm sure you can find someone of that calibre as well.

 

That's what I keep telling myself, but it's still hard.



#8 munky

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Posted 24 January 2013 - 01:00 AM

I started the 12-hour shifts a little over a week ago, and still found myself fighting against taking the naps. But I couldn't make it through the shift without them. The last couple of nights last week, I took one nap around 3AM, instead of the 2 I'm supposed to take. It wasn't enough. I was still having sleep attacks toward the end of the shift, and pretty much dying as soon as I got home.

 

Tonight is the first night of the work week for me. I just got back from forcing myself to take the first of the two 20-minute naps I'm supposed to take. And I couldn't sleep. At least, I don't think I did. I just laid there in my car, thoughts chasing themselves around in my head--including "I hate this!"--and waited for the alarm on my phone to go off and tell me I could go back upstairs. Finally gave up and checked the time on my phone a minute before the alarm was due to go off, so I just went ahead and went back upstairs.

 

I don't feel like I slept at all. I didn't even have the dream fragments I normally do in these short little naps. I just kept thinking about how much I hate this, worrying about how I'm going to get through school and other things ... I even tried to bore myself to sleep thinking about the Calculus I'm working on this week ... Nothing worked. I was just bored and awake.

 

I hope the second nap goes better. And who knows? Maybe just lying there with my eyes closed helped, even if it doesn't feel like it did now. Guess we'll see when it gets to the end of the shift. If I can't get adjusted to this shift and able to stay awake through it in a reasonable time, I'll have to try to get an earlier appointment with the neurologist. Right now, my followup isn't until mid-March.



#9 Megssosleepy

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Posted 24 January 2013 - 02:31 PM

Megs- I have been making new friends since I've been back in school and having the same issue of trying to explain that I want to hang out with them, but I have to be finished eating by a specific time and blah blah blah.  A few of my new friends know I have N, and I will tell others when the time is right.  Navigating new and maintaining current relationships/friendships on xyrem is tricky, but it's possible. My friend knew that I couldn't go out late with everyone so we organized an afternoon get together.  If you tell someone that you can't eat past a certain time and that's enough for them to blow you off, then they aren't worth it! 

 

munky-  we all have those days where we are just so fed up with N that we just need to scream.  I can't nap anymore and I wish I could sometimes.  Naps (whether you want them or don't) are frustrating! 

 

Thank you for your positive thoughts, and you're right if someone can't handle the fact that I need to go to bed early they aren't worth my time anyhow.  But, as you know it's just hard being different.  Why would someone want to deal with a PWN when they could have someone w/o it!  I know I am selling myself short... I need to practice more positive thinking I guess!  I also keep reminding myself that if I wasnt on Xyrem I would be a big mess a big noticeable mess, so not taking it isnt an option!



#10 DeathRabbit

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Posted 05 February 2013 - 03:09 PM

I have been miserable with panic attacks, headaches, and derp(brain fog) for the past two days.This is hell.



#11 Gemini730

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Posted 07 February 2013 - 10:15 PM

You all have hit on so many sensitive areas for me.  It's crazy how much we have in common, yet how different our symptoms, treatment, etc can be.  Just to respond to the napping issue, for me it's a physical struggle, emotional struggle, psychological struggle.  I've spent years having the very first thought/concern of each and every day being when/how/where I'd be able to nap.  I told my neurologist that, in hindsight, I felt like I've been a nap addict all my life.  I take Adderall several times each day in order to function and I can't say that I'd want to go back to napping daily, even if I could.  So, I can completely understand the urge to skip it and then realize the impact of skipping it.  This site has been so helpful to me since I joined just a few weeks ago.  It's clear that we may never have all the answers, but that N. is something that needs to be managed, since there is no cure right now.  I relate to the relationship issue (relationships in general) because I just don't know how anyone could even come close to understanding what it's like to have N. and also what it's like to deal with all the seconday struggles that so naturally come right along with it.  I am 41 years old, married for almost 8 years, two kids--stepson and daughter.  Having my daughter 6 years ago pushed me right over the edge to realize I could not function.  I consider myself VERY lucky, very loved by friends and family, yet I have been surprised/diappointed/angered by the seeming lack of interest they have had in my dx.  I guess, like a lot of things, it's always so much bigger when it's happening to you.  :)  To speak to the explaining to friends, etc, the limitations we have in scheduling, participating in activities, etc., I feel like even though several of my friends and family know, they don't seem to really get it.  The whole loss of energy in conversations, flatness in affect, etc, it hits me hardest late afternoon and I am so sensitive and aware of how I am "coming across" to other people, even on the meds.  After social events, I've had friends come back to me to "check in" and see if I was ok.  I've had friends, with good intentions, tell me to "try to get some rest" when we say goodbye after time together....some know, some don't.  Of course this raises my anxiety, anxiety makes me tired, it cycles on and on.  It's especially hard to be around people who are hyper-verbal/chatty, makes me just zone out all the more.  Anyway, I will stop venting now.....I am thankful to feel like there ARE others out there who understand what this is like.  As a side note, I'm a Marriage and Family Therapist (yep :) and I spend almost every day teaching people to be aware of cognitive distortions (worth looking up if you've never heard of them) and work to not allow the negative thoughts to control their feelings/behaviors, etc.  It's hard to take your own advice sometimes!  I guess what's most important is that we don't take a "snapshot" of things when we're feeling REALLY bad and use that as a gauge for how we are doing......now, I WILL stop.  Take care!



#12 KarenM

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Posted 02 March 2013 - 12:47 PM

I'm having a rough time too. We'll get through this. I just hope it'll be sooner rather than later :/