The Worst Hour of Every Day!
If I could just skip the first hour of every day - the "waking up/getting up hour," my life would be totally different and so much more positive and hopeful. I've tried to explain my experience with this "hour" many, many times to so many healthcare providers, but they cannot seem to understand how agonizingly traumatic and demoralizing it is.
In 2014, my darkest year, I literally became crippled with depression, despondent and suicidal, mostly because of chronic nightmares every night and THIS first hour of trying to function like a normal human being (without ANY progress.)
Managing mornings with Parkinson's
I don't use an alarm clock, never have. I seem to "start" to wake up at a pre-determined time in accordance with the time I go to bed. I can only sleep about five hours and I feel so much better in the evenings and late at night that midnight with TV in bed is my usual routine. By about 2:00 AM (after two, half hour "Hitchcocks"), I very reluctantly turn off the TV and most nights, have no difficulty falling asleep.
Somewhere around 6:30 or 7:00 AM, I slowly begin to realize that morning has come and that's it - my brain is telling me it's morning again. I cannot move or open my eyes. I always leave the TV on the local news channel with a very low volume and the remote very close. With a ridiculous amount of will power and physical exertion, my right arm slowly moves to find it and push that one button to turn it on.
I can perceive the light (with my eyes still closed) and the voices begin to wake up my brain a little more. Sometimes, I do not move or open my eyes for half an hour, but I can slowly feel "life" coming back into my body - an extremely painful awakening. I tell people it's like coming out of a coma or general anesthesia, SO AGONIZINGLY SLOW AND EXCRUCIATINGLY PAINFUL!
Then my eyes are open and I can move (in pain) to a slightly more comfortable position, even begin to look at the television screen. Next is sitting up on the edge of the bed, then standing up and finally limping (in pain) and completely unbalanced toward the bathroom for the morning routine - all of the time just wanting to go back and lay down and give up.
It's not until after my morning cup of coffee at the breakfast room table that I begin to feel slightly "human" again, that is, able to walk and talk and feed myself - roughly an hour later. I turn on my computer, check my emails, write in my journal and look at my "things to do" list from last night.
Grateful for the rest of the day
Not all mornings are this bad, but some are worse. I get the rest of my sleep on the living room sofa during the day, what I refer to as my "second bedroom." Unfortunately, waking up/getting up from that sofa is almost as difficult as my mornings and to do this "all over again" every day is just so depressing.
...but, it works for now. There was a time when I could NOT fall asleep, stay asleep and had even worse nightmares (what they call "Night Terrors") and all I could think about was ending the pain (by any means available to me.) I still do not know how I got through that awful period in my life, but I just don't know how to "quit' or give up (which is so painful "mentally.")
Right now, it's 10:30 at night and I feel pretty good, like I almost always do at this time. I dread going to bed, as comfortable as I am with my propped-up pillows and favorite TV programs, because I KNOW what's coming tomorrow morning! No matter how much I am aware that it goes away in an hour or so each day, I DON'T know that in the morning when I am going through it! It is SO agonizingly painful and such an ordeal that I am not able to tell myself then "It's OK, you will be better after that cup of coffee in just awhile."
It's like that Twilight Zone episode where Dennis Weaver is having the same nightmare over and over again and yet, it is STILL so painful while he is having it (even though he knows it's just a dream.)
Having said all of this, I am so grateful for the other 23 hours of each day. I do have bad days, but all of my symptoms seem to have leveled off for now. I am on a very strict, organic diet, take a lot of very carefully researched supplements and get exercise every day and now I know what to expect and all of my limitations. In some ways, I'm better than I was ten years ago.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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