Please read this, I know it's long....but I hope I've atleast kept it entertaining enough to get through.
I just started a blog. It almost feels like writing and posting something publicly finally transforms my problems with narcolepsy into being real.
Could you read this and comment on it? I really need some perspective and hopefully advice on something that happened today. I am so exhausted
My blog
I don't technically have cataplexy, but as I've read from others...the weird tingling/weakness I get in my hands and legs and the muscles in my face are like a subtle version of it or something. Just to give you a point of reference I guess.
Thanks so much
I Seriously Need Help
Started by
narcojesspy
, Dec 09 2011 11:46 PM
4 replies to this topic
#2
TiredAgain
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- Members
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Posted 10 December 2011 - 12:26 PM
Please read this, I know it's long....but I hope I've atleast kept it entertaining enough to get through.
I just started a blog. It almost feels like writing and posting something publicly finally transforms my problems with narcolepsy into being real.
Could you read this and comment on it? I really need some perspective and hopefully advice on something that happened today. I am so exhausted
My blog
I don't technically have cataplexy, but as I've read from others...the weird tingling/weakness I get in my hands and legs and the muscles in my face are like a subtle version of it or something. Just to give you a point of reference I guess.
Thanks so much
I tried to reply on your blog I even joined but it wants me to join other things to be able to post and I don't want to do that. Then I'll get all those advertisments etc..
#3
Rrrapture
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- Members
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- Location:Los Angeles
Posted 10 December 2011 - 12:45 PM
I posted this on your blog:
I have narcolepsy. I've been through similar experiences (at restaurants and office jobs) both before and after diagnosis. You aren't inadequate or irresponsible. You are performing quite well, you have a disability, and you have asked for resonable accommodations. It's a challenge to navigate day to day living with a debillitating neurological disorder; it's a whole 'nother challenge to educate employers and advocate for yourself. I'll post a reply on the NN forums, too. For now I suggest that you do go into work and do your usual best. Bring a copy of the note or the original and give it to them (have them sign a paper that they received it). Call a disability rights center first, a local labor/disability lawyer, or the labor board, if you want to have some ammo. It's ok if they fire you, and don't sign any paperwork if they do. If they do fire you then collect unemployment (if possible, or apply for state disability). You have the option to bring a lawsuit against them. You also may be able to get your job back. They are breaking the law, but depending on what paperwork/meetings have passed, it may be hard to prove that. Document as much as you can. You'll be ok; this is a battle you're in, but you aren't alone. Save as much energy as you need to take care of and feel good about yourself.
- - - - - - - -
You can follow the advice or not, whatever route you take right now will be the one that's appropriate for you. Message me here if you like, or email me with the address I'm going to send you. You have my full sympathies!
I have narcolepsy. I've been through similar experiences (at restaurants and office jobs) both before and after diagnosis. You aren't inadequate or irresponsible. You are performing quite well, you have a disability, and you have asked for resonable accommodations. It's a challenge to navigate day to day living with a debillitating neurological disorder; it's a whole 'nother challenge to educate employers and advocate for yourself. I'll post a reply on the NN forums, too. For now I suggest that you do go into work and do your usual best. Bring a copy of the note or the original and give it to them (have them sign a paper that they received it). Call a disability rights center first, a local labor/disability lawyer, or the labor board, if you want to have some ammo. It's ok if they fire you, and don't sign any paperwork if they do. If they do fire you then collect unemployment (if possible, or apply for state disability). You have the option to bring a lawsuit against them. You also may be able to get your job back. They are breaking the law, but depending on what paperwork/meetings have passed, it may be hard to prove that. Document as much as you can. You'll be ok; this is a battle you're in, but you aren't alone. Save as much energy as you need to take care of and feel good about yourself.
- - - - - - - -
You can follow the advice or not, whatever route you take right now will be the one that's appropriate for you. Message me here if you like, or email me with the address I'm going to send you. You have my full sympathies!
Please read this, I know it's long....but I hope I've atleast kept it entertaining enough to get through.
My blog
#4
sleepyk
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- Location:Coloumbus, OH
Posted 10 December 2011 - 01:20 PM
For what it's worth, you are not alone. I have a job in which I am in control of how I spend my day. I can do some work from home, some at the office, some with clients. But, I am expected to be working from about 9-5, no big breaks. I told my boss about my diagnosis, and she has been understanding.
But I am afraid to tell the truth...that I often can't wake all the way up until about 11AM, no matter how early I try to get up. That I often dream that I am already up and out the door. That sometimes I can turn off a complicated (not just one button to hit) alarm clock and not know that I did it. I haven't even told my husband, because even though I know I have this disorder, I am ashamed. I feel ashamed that I can't do what everyone else does, and petrified of what would happen if people found out the truth. It sucks having to fudge my time logs as to what I was doing between 9-11 some days.
Do I still get my work done and on time? Hell yes. Do I still provide to my clients and meet their needs? Hell yes. Do I always manage to do these things in the morning....? No.
The only advice I can give is to take comfort in knowing that you aren't alone, and to keep trying. After reading a lot of postings on this site, I have learned a few tricks other people try to wake up when they are supposed to. I won't give up. I will just keep trying. Maybe one day I will be able to tell others without N my deep, dark secret.
But I am afraid to tell the truth...that I often can't wake all the way up until about 11AM, no matter how early I try to get up. That I often dream that I am already up and out the door. That sometimes I can turn off a complicated (not just one button to hit) alarm clock and not know that I did it. I haven't even told my husband, because even though I know I have this disorder, I am ashamed. I feel ashamed that I can't do what everyone else does, and petrified of what would happen if people found out the truth. It sucks having to fudge my time logs as to what I was doing between 9-11 some days.
Do I still get my work done and on time? Hell yes. Do I still provide to my clients and meet their needs? Hell yes. Do I always manage to do these things in the morning....? No.
The only advice I can give is to take comfort in knowing that you aren't alone, and to keep trying. After reading a lot of postings on this site, I have learned a few tricks other people try to wake up when they are supposed to. I won't give up. I will just keep trying. Maybe one day I will be able to tell others without N my deep, dark secret.
#5
narcojesspy
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Posted 11 December 2011 - 03:34 AM
Wow!! I was not expecting this much response. It's unbelievable how comforting it is to just know that there are other people out there who get it.
Sorry about the blog trying to make you sign up and all that. The only reason I wanted something off of here is so that it could be my own; and for it to feel more like a stripped down, honest and descriptive journal of my struggles so that it might help the public one day understand what it's like in a way that they can't really connect to right now.
Well, this is how my day went.
After I wrote that entry (I seriously spent 5/6 hours writing it), I finally responded to a text message from a friend asking if I wanted to grab some drinks after she got out of work (she bartends at a different restaurant).
It was late, but I felt like I just needed to get out of the house after everything that went down...and I wanted to talk to her about it. Plus, like I said, I've been having a hard time with my N recently, so I've sort of dropped off the face of the earth for a week or so and felt like I somewhat needed to hang out with her if I consider myself a friend.
Had only enough time for a beer before last call (2am, I'm from CT), and we both had weird days to talk about, so I just followed her home and pulled out the futon and we talked about our days before falling asleep.
I still live with my parents, and I was in my room quietly writing that blog post yesterday instead of talking to my mom about what happened (who is finally 'getting it' about my N). But you know how it is, "do you think you were maybe written up because of something else?" "you just bought a new car, what are you going to do if you lose your job! you have to be more responsible!".....You always worry that this time, they'll be sick of hearing that it's because of N. So I kinda avoided her because I was scared about her reaction.
But on my way home from my friend's house this morning, I realized I really needed to talk to her about what happened before I went in for my shift. So I texted her and said I needed to talk about something. When I got home, we talked for a while and she was so cool about everything, even helped me to relax by saying "so what, if you lose your job you'll just get another. it's not the end of the world". I thought she would just freak out that I might be in a position to lose my job soon, and she did the opposite. I told her how much I appreciated it, and how it's still hard for me to open up when not too long ago we both didn't really understand my issues and I would always end up feeling so horrible after our talks. I started tearing up and she gave me a hug and said it will all be okay, that we'll take it one step at a time and work things out whatever that might mean.
I guess the attitude I took with going in today was this: there was an issue, I was written up, the issue is over. Awkward or not to see my managers, I knew they felt bad for what the managing partner said to me. I truly believe they agree that I didn't deserve it. But hey, he's essentially the owner so it doesn't really matter.
So I walked in, good mood and smiling, saying hi to everyone like I normally do, and got to work. I made it a point to say hello to my managers so that they didn't feel like they had to awkwardly do it. I was taking control. One of them even said something to me on the lines of how he wanted to see this very expensive appetizer we have on all of my tables tonight...which was essentially a subtle way of saying "kick ass tonight" like he was rooting for me and had my back. that felt really good.
But the night was kinda smooth in general. I sold some nice wines, had some great connections with a few of my guests again (i guess people find kindness so rare and refreshing)...but not only was the M-P not there, it just wasn't busy enough for me to have really shined in proving exactly how wonderfully competent I am. I guess I take these challenges as opportunities to show off how good I can do, and I didn't completely have the chance tonight because it was an easy night. I'll show 'em next time. And I still have to face him now for the first time since everything went down. Other than that, I'm almost thereeee.
I do want to share something that greatly cheered me up today, and put that smile on my face that I walked in with.
When I started this job, the amazing person that trained me offered me a bit of quirky advice and a bit of warning.
The warning was that this place can get to people, and it will inevitably suck the life out of you at one point if not just little by little. So to protect yourself, you have to walk around in a bubble of happiness that only you can see. This bubble is impenetrable, and thus protects you from all the work related drama and when you leave work, you leave the bubble and go back to your life.
He said this in such a positive way, I thought it was a cool bit of imagery to keep in the back of my mind for when things get crazy there. So sometimes we'll notice eachother being a little frazzled and say something on the lines of, "you look like you're out of the bubble- there's soothing music and aromatherapy flowing through mine right now, you are welcome to join me if need be!" Stupid things like that which are just ridiculous and silly enough to slightly cheer the other person up if only for a moment. It's like a positive and thoughtful acknowledgement of someone being upset when there's nothing either of you can really do or say at that moment to fix the problem. So to make small talk, and to better understand this bubble concept, one day I asked what color our bubbles were. He, never been asked that before, responded with "sea foam green" after thinking about it for a second... like it was the first time he ever thought it could have a color. So I said mine is pink. Real original, I know.
So before I texted my mom I sent him a text.
"Remember when you said there would be a day when I would hate the restaurant...I am definitely there now"
He responded with
"If you don't mind sea foam green, I left my extra happy bubble in a locker upstairs. Just breathe. It'll be ok I promise. I'm thinkin good thoughts for you:)"
What an awesome thing to say. Might I add, he didn't know what happened. He was just being kind. Guess kindness really is as refreshing as everyone makes it out to be. Anyway, I love this protective happy bubble thing. Feel free to get one of your own and let me know what color it is
Sorry about the blog trying to make you sign up and all that. The only reason I wanted something off of here is so that it could be my own; and for it to feel more like a stripped down, honest and descriptive journal of my struggles so that it might help the public one day understand what it's like in a way that they can't really connect to right now.
Well, this is how my day went.
After I wrote that entry (I seriously spent 5/6 hours writing it), I finally responded to a text message from a friend asking if I wanted to grab some drinks after she got out of work (she bartends at a different restaurant).
It was late, but I felt like I just needed to get out of the house after everything that went down...and I wanted to talk to her about it. Plus, like I said, I've been having a hard time with my N recently, so I've sort of dropped off the face of the earth for a week or so and felt like I somewhat needed to hang out with her if I consider myself a friend.
Had only enough time for a beer before last call (2am, I'm from CT), and we both had weird days to talk about, so I just followed her home and pulled out the futon and we talked about our days before falling asleep.
I still live with my parents, and I was in my room quietly writing that blog post yesterday instead of talking to my mom about what happened (who is finally 'getting it' about my N). But you know how it is, "do you think you were maybe written up because of something else?" "you just bought a new car, what are you going to do if you lose your job! you have to be more responsible!".....You always worry that this time, they'll be sick of hearing that it's because of N. So I kinda avoided her because I was scared about her reaction.
But on my way home from my friend's house this morning, I realized I really needed to talk to her about what happened before I went in for my shift. So I texted her and said I needed to talk about something. When I got home, we talked for a while and she was so cool about everything, even helped me to relax by saying "so what, if you lose your job you'll just get another. it's not the end of the world". I thought she would just freak out that I might be in a position to lose my job soon, and she did the opposite. I told her how much I appreciated it, and how it's still hard for me to open up when not too long ago we both didn't really understand my issues and I would always end up feeling so horrible after our talks. I started tearing up and she gave me a hug and said it will all be okay, that we'll take it one step at a time and work things out whatever that might mean.
I guess the attitude I took with going in today was this: there was an issue, I was written up, the issue is over. Awkward or not to see my managers, I knew they felt bad for what the managing partner said to me. I truly believe they agree that I didn't deserve it. But hey, he's essentially the owner so it doesn't really matter.
So I walked in, good mood and smiling, saying hi to everyone like I normally do, and got to work. I made it a point to say hello to my managers so that they didn't feel like they had to awkwardly do it. I was taking control. One of them even said something to me on the lines of how he wanted to see this very expensive appetizer we have on all of my tables tonight...which was essentially a subtle way of saying "kick ass tonight" like he was rooting for me and had my back. that felt really good.
But the night was kinda smooth in general. I sold some nice wines, had some great connections with a few of my guests again (i guess people find kindness so rare and refreshing)...but not only was the M-P not there, it just wasn't busy enough for me to have really shined in proving exactly how wonderfully competent I am. I guess I take these challenges as opportunities to show off how good I can do, and I didn't completely have the chance tonight because it was an easy night. I'll show 'em next time. And I still have to face him now for the first time since everything went down. Other than that, I'm almost thereeee.
I do want to share something that greatly cheered me up today, and put that smile on my face that I walked in with.
When I started this job, the amazing person that trained me offered me a bit of quirky advice and a bit of warning.
The warning was that this place can get to people, and it will inevitably suck the life out of you at one point if not just little by little. So to protect yourself, you have to walk around in a bubble of happiness that only you can see. This bubble is impenetrable, and thus protects you from all the work related drama and when you leave work, you leave the bubble and go back to your life.
He said this in such a positive way, I thought it was a cool bit of imagery to keep in the back of my mind for when things get crazy there. So sometimes we'll notice eachother being a little frazzled and say something on the lines of, "you look like you're out of the bubble- there's soothing music and aromatherapy flowing through mine right now, you are welcome to join me if need be!" Stupid things like that which are just ridiculous and silly enough to slightly cheer the other person up if only for a moment. It's like a positive and thoughtful acknowledgement of someone being upset when there's nothing either of you can really do or say at that moment to fix the problem. So to make small talk, and to better understand this bubble concept, one day I asked what color our bubbles were. He, never been asked that before, responded with "sea foam green" after thinking about it for a second... like it was the first time he ever thought it could have a color. So I said mine is pink. Real original, I know.
So before I texted my mom I sent him a text.
"Remember when you said there would be a day when I would hate the restaurant...I am definitely there now"
He responded with
"If you don't mind sea foam green, I left my extra happy bubble in a locker upstairs. Just breathe. It'll be ok I promise. I'm thinkin good thoughts for you:)"
What an awesome thing to say. Might I add, he didn't know what happened. He was just being kind. Guess kindness really is as refreshing as everyone makes it out to be. Anyway, I love this protective happy bubble thing. Feel free to get one of your own and let me know what color it is
