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.

Dear Friends and Family

Today I sat at my computer and wrote a letter.  I wrote to my friends and family who have supported me and my family through all of this Dys. stuff.  Many of them really don't understand.  They know I'm sick, but what exactly with they aren't quite sure.  I even had one aunt recently say they had given me up for dead! Now I know I'm sick with this, but I'm not quite there yet!!!  *Smile*  So I decided to write a letter to give a little information and inform them of my typical days.  Just something to help them understand that if I decline to go out or do something it is most assuredly not them I am declining, but rather the illness I have causing the declining.  I also wanted to thank them for all they have done during this time.  I wanted to tell them how much I love them and appreciate them.  So I thought a letter was the way to go.  I now have to print copies and get it out to all those friends and family, but that shouldn't be hard.

  Maybe if you have friends or family and you haven't quite explained your situation (should you have a situation) then perhaps a letter to them would be the way to go.  It gives you a chance to share your life as well as a chance to say thank you for all they've done.  Dealing with this without support would have been possible, but by no means would it have been easy!  My family and friends are what give me that extra little "ummph" in my step.  Their encouragement goes through my mind over and over.  I can hear their words reminding me to keep fighting, keep pushing, and to keep trusting God.  So I say thank you.... if you are one of those people.... thank you from the bottom of my heart!