I’m exhausted but hopeful


I envy my wife. It’s 4:33am, she’s passed out and I’m still awake and up. It’s the same every night. She sleeps soundly while I roam thehouse in an insomnianic sleep deprived stooper. My body is agitated and rigid so I just took a cocktail of Sinemet and Mirapex. As usual I can’t sleep even though I was only able to get about 3 hours of sleep last night. Before going to bed I debated whether or not to stay up and then go to bed late or go to bed and get very early. If I get too much sleep I wake up with a severe migraine and I can kiss the restfulness goodbye. I’ve been exhausted all day so I went to bed fairly early. I decided to get up at 12:30am. Or maybe it was 11:30? But like so many times before it just didn’t work out like I planned. I tossed and turned until I had to get out of bed and do something. So I’ve been up since. No matter. I’m used to sleepless nights. I’ve had them since I was a kid, just not like this though. For the most part I had slept ok during my Parkinson’s. As it progressed my sleeping worsened. Research now shows that sleep problems may be an early indicator of Parkinson’s.

Typically as symptoms progress sleep problems worsen. Pain and uncontrollable movements can cause severe insomnia. At night my uncontrollable movements become worse. I can’t seem to force myself to sit still as I type this blog out right now. I can go for days without sleep. Sleep deprivation will set in after so many nights. The shadows seem to come alive making their presence known jumping out from behind a door way or out of a closet. I could almost promise you I’ve seen the boogey man.

Being quiet isn’t hard to do. Everyone sleeps with their door shut. I roam the house making no noise. But I’m like that.

I’ve tried treating my insomnia for the last ten years with prescription drug, over the counter meds, changing diet, changing schedules, etc. Nothing works.
The days are long. And I mean 24 hour period of days. I’m awake for both day and night. The days are long because the nights are long.

I stopped trying to seek relief for now. It’s only temporary though. Within the last ten years I’ve tried almost 20 different medications with no positive results. I get either severe side effects or no effects at all. The trial-and-error process of trying to find the right treatment is exhausting. Not to mention aggravating.

So I get to see the sun rise and set almost each day. They are great reminders, simple reminders that have the potential of revealing to us our fragile human nature. The rising and descending sun is likened to our life cycle here on earth. We’re born, we grow, we learn, we live, then we die.
It’s very easy to get discouraged and negative about life if I let this Parkinson’s take control. I refuse to do that.

I am exhausted but hopeful
I am exhausted but hopeful
I took a sleeping pill tonight,
But it didn’t work, so I took another;
Yet here I lay, still pondering the shadows on my wall
I wonder if there’s anyone else like me
I see the back of my eyelids but seldom see sleep
I want to dream but I can never fall asleep
I pretend to be asleep every night but dreams never come
I feel too tired to count sheep
During the day I cope with everything
But at night, Oh these nights
With the darkness, the moon light,
The stillness makes things cultivate
And my emotions no longer hibernate
I feel the tears but do not comprehend them,
Irrational awakening dreams of family, friends
And loved ones, of future and of past
Longing for sunrise, longing for sleep
Longing for the end of this exhausting night
And the darkness of the sky.
I wonder: do the stars sleep at night,
Or do they wait ‘til morning’s first gray light
To lay their heads on downy pillows
And slip into the gentle cradle of dreams?
As I toss and turn, insomnia now my friend,
In the darkness of the night,
I leave my bed, I roam the house,
Look out the window, look at the stillness
But there is none within
For years upon years I’ve been chasing sleep;
He hides in the house and he starts to creep.
Sometimes in my bed I see him there;
In the corner of the room he stands and stares.
Try to close my eyes to get him out of my sight,
He pulls my eyelids open, “no sleep for you tonight”!
I walk around the house just knowing he’s there;
He’s plotting his next move and it’s too much to bear.
Sometimes he teases me with a quick five second nap,
When he comes out of nowhere with a firm hand slap.
I’ve finally given up the chase and wait for daylight,
And he sings sarcastically, “you’ll never sleep at night”!
I am exhausted but hopeful




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