If I could write a letter to me on the day I was diagnosed...

Take a deep breath... Today is going to be a difficult one I can promise you that. Please remember how strong you have always been. You are going to have to get stronger. Today you are going to feel a sense of relief. You're going to feel like the labels are going to float away. You'll get excited thinking that you'll no longer be seen as lazy and unmotivated, that everything will suddenly get better. The excitement will quickly fade. Within the next 24 hours you will feel just about every emotion you've ever felt but it will be scrambled and mushed into a crazy massive slap in the face. Then you're going to cry...
A lot...
And then some more..
You will stuff your face full of articles and blogs and research and learn as much as you possibly can. You will focus so much energy on helping your family to understand, more energy than you have at your disposal, and eventually you'll give up. In giving up this fight you'll finally realize that the energy didn't need to be expelled. You'll realize again, like you have countless times in the past, that your family is unlike any other and they will always love and support you no matter the situation. Then you will smile and thank God for his endless blessings.
You will begin to talk to God more than before. You will thank Him everyday for the ways he has blessed you and pray that he helps you to recognize the blessings you overlook.
You will try different medications that will take you on a year long crazy ride. It will test your faith, your marriage, your job and make you question your ability to be a good mommy. 

Don't worry dear, you are stronger than you know and when you cannot be strong any longer you'll fall into the open arms of a man who will give you every last ounce of his. You'll realize an entirely new love, and again you will smile... and then you'll hang your head and thank God for those blessings you didn't see.
You're going to have bad days, and worse ones... You'll have great ones too.
You will begin to peel back all of the pain and resentment that you have let build up around your spirit. You will stop breaking yourself down and force yourself to step back into the light. Then you will smile... And you'll  drop to your knees and thank God for the blessings you couldn't see...
and you will be alright, I promise.

Up goes the dose!

So, Vivance has proven to be a much better solution for me. I feel happy again! Yay! It started wearing off really quickly though, so we bumped the dosage to see if it helps. I am seriously hoping so, because I finally feel good again. If I could give anyone a piece of advice, it is this.... Please keep trying to find something that brings out the best in you. I thought I would spend the remainder of my existence on Earth struggling to smile... I was heartbroken at the thought...

I am so excited to realize that it doesn't have to be that way! Cheers to whatever the future brings!

"Good" Morning

I finally started on a different medication yesterday. Nuvigil was great in the beginning, but before I knew it I was a completely different person. My husband finally confided in me that he was often scared to even talk to me or ask a question for fear of my crazy irrational responses. I knew I was more irritable than normal, but I had no idea it was that bad. I knew that wasn't me. I was never mean or nasty on purpose. I have always been a person that understands the power of words and the effect they can have on others. This understanding comes mostly from my own experiences in the past and I made a promise to myself a long time ago that I wouldn't ever make someone feel like I felt... 

I broke my promise...

I find comfort in knowing that some of this comes from the nuvigil itself. What kills me is that was I so caught up in my own misery for the last few months that I couldn't see what I was doing to my family. I'm sure it goes even further than that too. What about my coworkers? Strangers I meet? Extended family? My friends? 

I've got a lot of fixing to do! 

I already feel like I am in a much better place. It feels good to care again, To not feel paranoid and aggressive. I can speak a thought without it getting jumbled up coming out of my mouth. 

It is really hard coming to terms with the fact that I just thought I had to feel that way to stay awake. I am hoping this new medicine is a good fit for me. 

I just started taking Vyvance yesterday. The first day was hard as the Nuvigil wore off much faster than the Vyvance is taking effect. It's okay though, I can surely get through a few days of oddness for the hope that I can get back to me or even better a more energized me!

Mending the fences is going to be the tough part for me. My family and friends are much more understanding than I believed. I can see now that without even apologizing yet, they have already forgiven me. The toughest journey will be forgiving myself and moving forward more aware of my actions and what I have to work on recognizing. I was so focused on what they didn't understand that I could not see what they do understand.

Time to go to work...

What I've been trying to say...

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.