I guess I should have known that planning ahead with Syringomyelia isn’t exactly realistic. So having the expectations of getting so much done within a short amount of time was a little out of my league–especially after only four hours of sleep.

I woke up to my mom following the snowflake shaped post-it notes that I had left for her in a scavenger hunt to lighten up her dull Thursday morning. They were scattered around the house with clues from one to the next and though it was nothing magnificent, it was the highlight of my day. I just love putting a smile on my mom’s face; she is always able to do it for me…she deserves things to smile about too 🙂

So today, after not much sleep, I laid on the couch and decided a very long movie might help me fall back to sleep. Gone With The Wind seemed appropriate in length. A fourth into the movie I knew it was going to be a bad day–nauseated, sweating, and shaking from lack of fluids. The already long movie ended up being twice as long as I spent half the day curled up in a ball or in the bathroom.

By noon I finally finished the movie, and though I have seen bites and pieces of this movie before–I have never watched it completely. And at the end of the movie I realized that I had spent half of my day watching a classic, where most people die, no one ends up together, and there is nothing close to a happy ending. To be blunt I was confused as to why I had spent my time watching a movie that ended that way–when on such a bad day I needed a pick me up.


For the past twenty-four hours I have had my phone turned off. Having no real means of talking to anyone outside of my house–because I don’t have a home telephone.

But it was actually an enlightening experience. I realized how much time I had on my hands when I wasn’t on my phone texting, tweeting, and calling people all day long.

There are so many things that I am always saying that I want to do and then saying that I never have time for…but maybe it’s because I never really give myself the chance to have time for it all–I seem to fill those gaps of time with things that I truly don’t need to be doing.

So tomorrow, it is my goal to try to use my time wisely and hopefully start to complete some of the projects around my house that I have meant to do for the longest time. I am extremely excited to get started with them. A few weeks from now and I may not have anything to do [Haha].

Sometimes it may be harder to “take arms against a sea of troubles”; but it’s much easier to get through the days of questionable effort when I have my mom by my side to help me through them.
Whether she is there to help remind me to take my medication on time or whether I am lacking energy that day and she offers to wash my hair for me, it’s nice to know that I have someone to be my arms when mine do not seem to be enough.

One day, when I move out of my mother’s house and am off on my own…I hope to find someone that is willing to take care of me, and not because of force or pressure but because he wants to.
On days when I am snowed inside the house like this, with a foot of snow outside and more drifting this way–all I can do is think of the future as I am wrapped up inside of my Snuggie.

After two nights of going to the movies and going out to dinner, I knew that today wasn’t going to be the best day I’ve had. After only a few hours of sleep I paged through a few magazines and then watched Kate & Leopold, but nothing seemed to help me fall back into the realm of sleep–I guess that’s what happens when you have an incurable disease and no one knows how to cure it, let alone figure out how to control your sleep patterns or off-the-wall symptoms.

So now I’m onto my second movie, Sleepless In Seattle…I thought it was appropriate for the situation. At least I’m not Sam getting loads of brochures and pamphlets for counseling, that would be a little too much for me to handle at this point. But maybe he is onto something–moving to Seattle–maybe I should look into that.

On the radio talk show that Sam’s son calls into, the woman asks about wishes and dreams. It made me think that I would love to make a wish for my mom: I would wish that she wouldn’t have to worry about me anymore. That she wouldn’t have to constantly make sure that I am getting enough sleep, enough to eat, or taking my medication. But that dream is far off and in the hands of people who I may not ever meet.

Until I get some more sleep, I’m wide-awake.

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