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.

Good Days, Bad Days

Good Days, Bad Days.  What exactly does that mean? Well before Dys. came into my life a good day was simply a day when I was out and about and everything just seemed to go right. A bad day would have been a normal out and about day as well, only maybe, perhaps everything didn't go my way. Since Dys. came into my life Good Days, Bad Days has taken on an entire different meaning.  Now a good day is a day when I am able to shower and not get sick, and a bad day... well those are classified as not so bad days, bad days, and crummy days. Not so bad means I felt a little rough after my shower but I was able to shower and dress and maybe get out and get some errands done or just get something done around the house.  A bad day is when I wake up feeling not so good, and after I shower I am spent and feel crummy for the remainder of the day. Not able to get anything else done for that day. I may even fall asleep several times during these days, because naps here and there give me the energy I need to just exist as a lump on the couch.  A cruddy day is when a shower is not possible at all. These days I usually remain in bed for the entire day. I usually will sleep for a few hours at a time during those days, and on these days I'm actually able to sleep at night due to the sheer exhaustion of getting up to go to the bathroom during the day.
Today was simply a bad day. Last night I didn't rest at all... insomnia was horrible.  I had a phone interview for disability (the hospital arranged it for me) and after an hour on the phone, I was even more exhausted. Lack of sleep and a lot of questions are not a good combo for a normal person... you throw that at a dys. person and man we are like a bumbling bowl of jello!  I hope that my answers were coherent. I do remember apologizing for the slurred speech a lot.  After my phone interview I rested for a while longer, and managed to get a shower. Some days the benefits of feeling refreshed can outweigh the disadvantages of showering with Dys. Today was one of those days.  I managed my shower (all of which are sit down showers now), got dressed and put a cap on my head.  This was the extent of making myself presentable for the day. After all my mother in law was coming over to help with household chores and I just couldn't stay in a t-shirt only all day!  When she arrived I was fresh out of the shower in a heap on the couch waiting for my heart to quit beating out of my chest due to the shower.  Finally I was able to get "thank you for helping out" out and just lay there for the remainder of the time she was here pretty much.
 It's nice to have help. In fact it is a blessing.  My husband is great. He straightens and does his best at keeping the house up, but with 2 small kids, it can become a mess in a short amount of time.  So I called for backup today and she showed up ready to get some down and dirty scrubbing/cleaning done.  So now I'm laying here watching Christian Music Videos on KTV and typing this blog entry. I have a clean house, my husband fixed a decent supper, and I've had a shower today. The last 3 elements of my day have made my day bearable even though it was a bad day.  So just remember, even when it's a bad day, or worse, there are always small little things that can help make it more bearable!
Dys may try and kick me when I'm down, but it might as well be prepared and know that I'm a fighter! I have alot of support in my corner backing me, and even on bad days, it will not get me down!!!