Those times that you want nothing more then for your body to just stand still. To hold still. To not jerk. The moments you look down at your phone to see Mom again..."Are you ok? I'm so sorry your dystonia has been a struggle. I wish I could take it for you. I love you!"
Let me be honest. I have went from being frustrated to angry. To realizing I have no control over when I move and when I don't. Which lets be honest drives me crazy!
Taking a step back into time. My mindset this time last year was "We will put a simulator in and call it done. No more dystonia." I sometimes laugh at how crazy that mindset was but I had so much hope for a cure then. While I still have hope that one day the future generation will see a cure it's really hard to keep my eye and heart on this.
Those moments where your asking Jesus all the "Why's?"
1.)Dating:
Remember that one date that you where asked a million questions about why your body moves? That was such a fun date...Let me answer more questions since that is the first thing you see in me.
2.)Those times you blank completely out but have no idea why or even what causes it? It always ends up in "we don't know".
3.)Those times you want to push and work as hard as you can but your body is on the struggle bus...BUT then you know there are people out in this world who have healthy bodies that don't work nor want too. Like how is that even close to being fair? I'd take their healthy body and push and push.
4.) Why is chronic illness come with anxiety? Like I never know from day to day how I am going to feel or what dystonia may bring to my body.
5.)That time where you suck your pride and make yourself go through speech therapy. Thinking "Man I did this and I can't wait for the doctor to say your speech sounds awesome! Speech complete." Only for them to say "It takes time. Keep going!" What? Why?
From day one when I started blogging I promised myself to be honest in each post I blogged.
There are crappy days that make me want to give up! To say "Dystonia you win!"
In the last few days I have felt so frustrated with myself. Asking myself "Why can't you control your body? It is YOUR body Chelsi." I have fought it daily this week. Wanting no one around me or near me.
I can only handle so much "There is nothing else we can do. We are sorry." Do something! Fix it. Research it more. Do something so that not another human goes through this or feels this way. Your the doctors. And also very human at that...
I came home tonight to only find myself struggling to get dressed. Like come on! At 26 years old this shouldn't even be a struggle...and then when it is I get so frustrated and just stand there thinking that will make things better. Ha. Guys Getting mad doesn't help things but only makes it harder so I am learning.
Then I am sitting in bed and this picture comes up on time hop and I remember that this was a few weeks after our rough results with a spinal tap. Somehow she makes everything ok!
Not once has she not been by my side. Not once has she ever complained.
I know that Jesus knew what he was doing to allow her to be MY Mom.
This time last year we were sitting on the couch when she said very slowly with tears in her eyes "I'm sorry sister. There isn't anything else we can do. Sometimes we don't understand Jesus's ways but we have to trust their good."
I thought that I was OK with no answers.
I kinda just skipped that no answers part until about a month ago.
It hit me that there really wasn't a cure yet.
That dystonia is just what it is.
Tough.
A year later and I am just NOW realizing that this is reality.
It is by far the hardest thing to remember that you are loved when you just feel so defeated.
Welcome to David and Goliath.
A part of me feels like I know how David must have felt before his battle ended in victory.
Sometimes, I pull these out to just read. To remind myself Jesus uses the tough stuff for his glory. To remind myself giving up would be easy but fighting it head on will always be there harder one. But the one worth wild.
I'm so thankful that when I feel so crappy about myself that Jesus still loves me.
"Sometimes God will put a Goliath in your life so you can find the David within you."
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