It's hard for me to remember what it's like to lay in bed at the end of the day, and be completely still, as I fall asleep. I know for nearly 30 years it was my normal, but these days it is just a faint memory. I now get into bed and find the most comfortable position to lay my head on the pillow, so that I can relax the muscles in my neck that have been pulling and twisting all day. When I finally find that position, my head still rocks back and forth, until my evening antidepressant, which is also helpful for sleep, let's me fall off into dreamland.
When I finally reach deep sleep, the tremor completely stops, and my body is finally still. But before I wake, the tremor has already started up again, and doesn't stop until my next cycle of sleep. It is somewhat of a relief to know that when I do sleep, my body gets a break from the otherwise nonstop workout. I still find myself waking up in the morning, though, wishing that this was the day I would wake up and the tremor would be gone. By the time I get up and out of bed, and have my cup of coffee, I've let go of that thought, and moved on to what I do have control over.
In the beginning, the moving on part, was the most difficult. I had a hard time thinking anything other than "My head is shaking. I want it to stop. I want it to go away." It was the majority of my thoughts throughout the day, accompanied by fears of forever being tortured by this very physical, unwanted, and painful condition. The thing with negative thoughts is, once you accumulate a few, they begin to infest your brain. A morning of feeling sorry for myself led to an afternoon of being miserable, and an evening of frustration. And my thoughts that ended the day, often began with "If the tremor won't stop, please don't let me wake up." And the next morning when I was woken up by the back and forth, the cycle would repeat.
These days, if I wake up in the middle of the night, and all is still around me, I focus on that. Worrying about not being able to go back to sleep because I am being kept up by my own movements, only wakes me up more. I think we all know, that once you start worrying in the middle of the night, it's pretty hard to get it to stop. So I've accumulated some tricks to set the worry aside, so I can give my body the rest it needs. As I lay in bed awake, I first acknowledge that, yes, I am still shaking. Then I find a part of my body, or something in the room (the wall) that ISN'T shaking. I begin to notice my breathing and count each inhale and exhale. Or I let myself imagine, that I am in a hammock, being gently rocked to sleep. Whichever tool I use, I eventually fall back asleep.
It is an everyday effort to change what could be, an automatically negative day, if I let it. I won't lie, and tell you I don't have moments of ultimate frustration and fury over having a tremor. I do. But allowing myself to live my life with frustration and fury, wasn't very effective for me. What is effective, is acknowledging that I may have some negative and uncomfortable feelings, and then letting them pass. Making a choice to find a positive to hold onto, instead of a negative. Finding peace, and living my life from there.
Peace comes in all forms these days. From writing a blog post, to sending out my resume, from having a cup of tea, to having a good laugh. Most often though, peace comes for me, in the still of the night.