My flesh and my heart faileth...

Today I just wanted to blog an encouragement to all of my fellow Dys. Fighters.  There are many days when we feel alone, isolated, and up against an unshakable wall.  We wake up to find our bodies are screaming against everything within us that wants to get up and go.  We get out of bed, only to realize too late as we hit the floor that our body just will not agree with our plans for the day.
People ask me so many times, how do you do it? I'm often at a loss for words, because I don't do it. Well not without the strength of my Savior, Jesus.  Everyday is a struggle.  I've made some things easier in some ways. For instance, one hard choice to make for me was my hair.  Not in a conceited way or anything, but I've always been told I had beautiful hair. My Aunt Alley, who lost a battle to breast cancer, was one of those ones who would say to me that my hair was beautiful.  My husbands family always told me what beautiful hair I had, how rich and healthy it looked.  But now for the sake of my health in this Alabama heat, I had to make the choice to cut it. Not just a trim, but now it's as close to a boy cut as a girl can have. Do I like it? No. I miss looking in the mirror and knowing that at least something about me was beautiful. Now I look in the mirror and see ease. Not beauty but the ease that short hair has afforded me. The energy saved from not having to blowdry and style. It's just a small sacrifice. People may say, So what, big deal, you had to cut your hair. But for me it was huge. Another decision I make every day is do I chance going outside in the heat or do I stay inside and try to pass the day however I can. Well that's just an obvious decision. The heat would zap me of my energy instantly, making me sick therefore rendering me unable to care for my kids while my husband is at work. This is a hard one for me, and sometimes I go against my body and all logic within me and I go out anyway. I pay the price, for several days or more, but sometimes giving up another love - the love of the outdoors - is sometimes hard to let go.
My point in all of this is that it is oftentimes the little things we are forced to let go that hurt the most. Not being able to spend a lazy summer afternoon out playing with my beautiful daughters is so hard on me. It was the one thing I struggled with the most at first. It's been more than a year now since I've been really sick. Is it any easier to miss those days outdoors with my girls doing all the things I did with my parents outdoors? No it's not easier. But I do make an effort to find other things we can do together. It's all about finding your priority in life, and if the circumstances have changed and caused you to be unable to fulfill these priorities the way you always have, then find another means of fulfilling them! Does your child miss you playing ball outdoors, or camping outside under the stars, and other things? Play ball indoors! Break the rules! We have one of those huge bouncy balls, and we'll toss it around in the bedroom, kick it around the kitchen. If something gets broken, you won't miss it as much as you'll miss those moments with your kids!  There is always a way where there is a will.  And with Dysautonomia you can't make it without the will to fight!
My main weapon in fighting Dysautonomia is my faith in Jesus. He is my strength and my biggest fan. Why do I say that? Well I have a purpose in life. God designed me with that purpose in mind and as long as I'm striving to fulfill the purpose, God is there helping me with the strength to go on. He never fails me. Yes I have an incurable, rare, frustrating beyond belief disease. Yes I struggle to do the things I know God has called me to do. But, I know that God is my strength when I'm weak. He's my courage when I'm scared. He's my clarity when my mind is in a foggy mess. He's my best friend when I feel alone. He is my everything. There is nothing I can't do without God.
I've been told I'm so brave to do the things that I do. Referring to singing in the worship team and things like that. After all, singing uses oxygen, which we already struggle having enough of! I'm not brave, I'm faith driven. Love driven. Passion driven. I love my Savior, I love singing in worship to my Savior, and I have faith that this is what He's called me to do and He will supply the strength ,to do it. This is where the title of this blog comes in.
Psalms 73:26 says, "My flesh and my heart faileth: [but] God [is] the strength of my heart, and my portion forever.
When you feel like all the world is crashing down around you. When you feel your body is at the very least against you. Remember that verse. And then follow it up with this one.
Psalms 18:2 says, " The Lord [is] my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, [and] my high tower.

Just remember on those extra hard days, Keep your faith, hope, and trust in the Lord. God is our strength, our deliverer, and our help in times of trouble and difficulty. I truly believe this and felt that someone out there today needed to be reminded of this. I love you all, and pray for you daily that God gives you strength, comfort, and peace today. God Bless, Miranda - Fellow Dys. Fighter :)

One day I will...

It's 1:15 am.  I should most definitely be asleep because I have to wake up early for church in the morning.  But yet again, sleep evades me.  So I thought I'd blog.  I don't have much to say right now, but we'll see how this goes.  Who knows, I may end up with a decent blog, or you may end up reading the ramblings of a woman who has a severe case of insomnia again.

I guess I'll write about my feelings today. It's been one of those days where I have questioned, why me?  I had my cry, in private of course, and I vented in an email to a friend (I hope she didn't mind).  It has been one of those days when reality sets in, and I realized in startling clarity just how many of my choices have been stripped away.  My choice to make it a pajama day or get outside for starters.  Pajama days are fun if you chose them.  It's fun to lay around and doing nothing, if you chose to do so. But having to do so out of the absolute need to reserve strength for the next days events, well that just takes the fun out of it all.  Saturdays used to be fun. Especially this time of year.  Tradition for us has been to get up, get dressed, watch some football at the in-laws and eat chili or hot dogs or anything really.  We have spent almost every single Saturday doing this as long as I've been married to Eric. Well, at least the Saturdays that he didn't have to work.  So today my mother in law calls and asks do we want to come over and eat supper.  Of course we couldn't, because I have been in bed all day with a horrible headache again, and I know that if we go to their house I will most assuredly not have the energy to go to church in the morning.  Just another choice that was taken away from me.

Some people have mentioned that I am handling this so well, and I suppose I am handling it well on most days.  But I am human after all. I have emotions and thoughts just like everyone else.  I look at my situation and I get angry.  I'm angry because I am too young to be laying in bed all day because I don't have the strength to get up and get going that day.  I'm angry because at this point in my life I should be in the yard running and playing with my two beautiful little girls.  I'm angry because there is so much in life I want to do, but the body I'm trapped in screams at me whenever I do just normal things.  So that doesn't leave room for doing the extraordinary things in life or even the simple non-routine things. It breaks my heart.  It hurts me to my very core because I have lost almost all the choices in life.

The only choice I have left it seems, is to fight.  And I'll fight this.  If you know me, then you know how determined and stubborn and hard-headed that I can be.  You know that when I set my mind to something I will move heaven and earth to get it done.  So I have my days that I allow myself to cry, to get angry, to sit and be down just a little bit.  But the next day, I say "No More! It's time to fight this again."  And I'll get up, get dressed, and at least make it past my bedroom door.  And one day I'm going to make it back out into the world of choices.  I may have to learn to choose what type of choices I make, but I am going to get that freedom of choice back.  One day.  After all, I remember hearing somewhere once, that it's mind over matter.  One of these days I am going to learn how to live with dysautonomia instead of merely existing with it.  That's all we really want isn't it? Our life back?  Our freedoms of choice and what we do with this life?

So I'm making a statement right now.  I declare that one day I am going to wake up.  I'm going to be stronger.  I am going to be capable of deciding what I want to do and be physically strong enough to do it.  One day, I'm going to have this disease under wraps, and I'm going to tell it what I am going to do that day instead of it forcing me to sit out this game of life.  One day I will... One day I will.