Sunday, May 6, 2012

My Heart Hurts

It seems that this blog has become my new lifeline. If I'm having a bad day, the thought of coming home and writing my thoughts down is such a comfort to me. Honestly, my heart has never hurt as much as it does right now. Another horrible thing about Dystonia is that if I'm feeling the least bit stressed out, it goes straight to my brain and the effects come out on my neck. I was at work today, in a lot of pain. I have been feeling okay lately, but last night my right shoulder bulked up and made it hard to turn my head. Very painful. One of the wonderful massage therapists I work with named Patrick asked me if I was feeling okay and I said no. He took the time to pull me into one of the massage rooms and tried to calm my aching neck by using trigger point and by telling me that the people that hurt me aren't worth my time.

My neck feels a little better. My heart, not so much.

I feel like a piece of me shattered when I got Dystonia. It's like a part of my brain snapped and I have these little episodes of complete and utter anger and grief. One time I threw shoes at my closet for an hour because it was the first thing I could get my hands on. One time I cried so hard I couldn't breathe and my mom had to yell at me to breathe. One time I thought about killing myself. One time I thought about losing faith in God. One time I told my mom to put me in a psych ward. Ya, embarrassing, but I promised to be honest. Sometimes I feel like I'm losing my sanity. 

I woke up today with a bible verse stuck in my head. 
Trust in the Lord and lean not on your own understanding.

And I really don't understand anymore. The hard part is that all I want to do is cry. I want to scream. I want to go on a really really long run. I want to yell. But I can't. If I do any of these things, I will be paying for it tomorrow in the form of Dystonia.
It's so weird. Crying is the worst. I think it's because it causes my shoulders to tense up and my brain is probably misfiring like crazy. But whenever I get upset, the effect it has on my body is SO intense. I will literally wake up with spasms and tilting and so much pressure in my head I can barely get through the day. Another harsh reality about Dystonia-I have to keep my emotions in check as much as possible for the sake of my body.

So all I can do is sit here and let the tears well up in my eyes and not let them spill over because if I start crying now, I won't stop. And I have a life waiting for me at 9am tomorrow. So I sit here. Hurt, confused, abandoned, rejected, angry, sad, you name it. And all I can do is sit here with a quiet dignity for the sake of not putting my body through hell tomorrow. It seems unfair. Shouldn't a girl be allowed to cry when people have hurt her without her body turning against her?
It's not fair. It's not fair. It's not fair.
I hate this disease so much. It is days like this where I'm so close to giving up. Bad things have happened to me throughout the course of this journey, but I think today tops them all. 

So what is the lesson?

Don't give up, Nicole. 
Because people need me. People with Dystonia worse than mine need me. 
People need me to be strong so someday I can stand in front of my local Legislature and tell my story and beg them for funding for research.
People need a young person to go out there and advocate. 

God has a plan for me and I intend to follow through for the greater good of those suffering out there.
Here are just a few of the faces of Dystonia. These are the people I am fighting for. They have names, they have families who love them, who want to take away their pain. They have hopes and dreams and lives just like everyone else. And that makes this journey worth it when I want to give up. I'm fighting for these people, because they are worth fighting for.

Thank you to everyone who continues to read and follow my story. You are helping more than I can explain. Now let's do something about the folks up there who are in pain^^. Aren't they worth fighting for?

When people walk away from you let them go. Your destiny is never tied to anyone who leaves you, and it doesn't mean they are bad people. It just means that their part in your story is over.

I am strong because I am weak.
I am beautiful because I know my flaws.
I am a lover because I am a fighter.
I am fearless because I have been afraid.
I am wise because I have been foolish.
And I can laugh because I have known sadness.

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