This is my first official blog. I wrote this as a way to get everything out, as a sort of therapy. I posted it to a site and realized there are other people out there feeling the same way. Maybe getting this out in the open could help someone else as well.
Where to begin...
I am searching so desperately to find me again. I have Narcolepsy. I am dependent and drugs that make me stay awake, yet I still feel like I am asleep... Only now I also feel agitated, depressed, paranoid, irritable, and half crazy most of the time. Trying to find a balance is exhausting to say the least. I cannot focus, my memory is just that... A distant memory....
I'm careful not to get too happy or sad, scared, frightened or excited or heaven forbid get in an argument for fear of a sleep attack because of the emotional response.
I'm in a self induced coma yet, I'm awake.....
That's what everyone wants from me right?
"Just stay awake!"
"Everyone gets tired!"
"You need to get some more sleep!"
"You're so grumpy all the time!"
Everyone has a solution...
I'm never trying hard enough. I'm never good enough.... But don't worry I won't forget to plaster the smile on my face in public.
I'm finding its much easier to deal with the criticism rather than try to explain. So I'm lazy, I don't care and I must be stupid because I cannot form a single intelligent sentence half the time. You tell me "just focus"...
Telling someone with Narcolepsy to focus or remember is like shoving a knife through every piece of their being. Could you imagine telling someone with Parkinson's to stop shaking because it irritated you? Would you feel comfortable telling a blind person to look at you because it is disrespectful not to? How about asking a paraplegic to just walk cause it would make it easier....
Do you get it yet?
I wish I could show you my heart, how I feel from the inside out, but it would make no difference because like my disease it is impossible to see.
You will say...
"Of course I can see it!"
"I watch you fall asleep everywhere, I talk you through the hallucinations, the sleep paralysis, I pick up your slack, brush it off when you are irrational and remind you constantly about everything!".
What you can't see is my want to accomplish things, remember things and focus. You can't see the hurt, the feelings of failure, the constant guilt, the heartbreak, the disdain I have for myself and this disease. You can't watch me beg myself to get up and do something, to plead with myself and to give up over and over again. You can't see the tears I hold back or even the ones I let fall... I won't let you see that.
You won't say it but I know... You think I use this as an excuse to be lazy and not worry about anything, you think I use it to not have to do things you want to do, or admit that I made yet another mistake or forgot something that needed to be done.
You use words to hurt me because you know that they will and it gives you some gratification for your resentment towards me and this stupid disease. You won't say it but I know.
I am so careful to never ever say "It's the narcolepsy's fault..." unless it is a physical response like falling asleep or hallucinations. It's easier to just tell you that I let you down again because that's what you want to hear. You want someone to blame and well, it's my disease not yours so the blame falls on me. I will own it because I have no other choice. I didn't wake up one day and say " I think I will be Narcoleptic today." I am learning along the way and I know you are too. The difference is that I am researching and reading and trying to find better ways to cope with this. You are doing what you know, suggesting solutions and trying to ignore it. I don't know any other way to tell you IT'S NOT GOING AWAY! Sure we can not talk about it and continue to act like it isnt the big deal that I make it out to be. I will continue on my own to get support from online blogs and Facebook pages and eventually we will grow into our own separate lives and wonder how it happened. We will continue to go through the motions and I won't forget to smile and have a good time at parties, when people ask why i look so tired i'll tell them i had a long day. Eventually there will be nothing left of us. As much as I hate this thing called Narcolepsy, it's not what I am most afraid of... My greatest fear is loosing myself, the person I was, am and want to be. I cannot be that person if I end up hating myself because we pretend that narcolepsy isn't part of who I am. I am on a big journey to figure out how to be happy despite this. I want you there with me because I love you and I want to share the rest of my life you. We cannot look forward without being aware of the struggles we may see with this. It will not be an easy road, but I am asking you for the sake of our family to please take some time to read up on Narcolepsy. I need to know if we are in this together or not. The ball is in your court and I wouldn't blame you if you wanted to go. If you choose to stay I need you to know that I will no
longer be apologizing for having Narcolepsy, it will be our journey not mine. It will be our success or our failure. I promise it won't be easy. It will be hard, very hard... but I have to believe that it will be worth it.
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