Mourning Mornings

I've been struggling with this illness for at least 5 years now. As my sensitivity to sound, light, smells, and motion worsen, I definitely have acute episodes of extreme discomfort. These sensory issues, along with the cognitive losses, are far more debilitating to me than any of the pains in my joints or the tingling/burning/numbness in my extremities. Feeling assaulted by the normal input of the world and not being able to think properly create cycles of despair and loneliness. Though, it is usually later in the day that I have to shut down from the overload, its is the mornings which wear me down emotionally the most.

For the first 42 years of my life, I was an excellent sleeper. I put my head down on the pillow and within minutes I was asleep. Eight hours later, I would awake refreshed and energized for a new day. When I went skiing with friends, I was often the first up on the slopes. When I did some programming for a health club, I taught a 6am aerobics class to get the day going. I might have phases of being a night owl, but I still slept 8 hours, ready to hit whatever road lay ahead for that day when I awoke.

Now, waking up is a chore in and of itself. The first thing I notice is that my ears are already screeching and they are filled with the roar of things going on outside and inside my house. Next, it is the pain in my feet. Sharp pains. As though someone has run a knife along the underside of my toes right where they meet the balls of my feet, and another slice across the middle of my soles, feeling as if the tendon in my arch has been severed.

Then I assess the level of the tingling/burning sensations. Is it just to my ankles? Can I feel it in my calves? Is it up past my knees? What about my hands? Can I feel them? Can I move them? Do they feel swollen? How bad is the ache in my elbows? My hips? My shoulders? How stiff is my neck? Do I have a headache? How's my face? Are my lips tingling? Is my face puffy? Can I feel my face?

Worst of all: can I fully wake up? Are my eyes open? Sometimes I can't see for a while, so I have to check if my eyes are open. Other times, I just see a world behind a waterfall. There are things there, but I can't quite make them out. Can I lift my head off the pillow? If I try to move, will my body actuate the commands from my brain? Its hard to explain this inability to waken. I lie there, hearing all that is going on around me, but it feels as if I'm in a coma. I can't quite break free of the sleep state. Some days this may just be minutes. Others it is hours. I focus on breathing. I can't say I get panicked any longer. I used to panic. It simply made things worse. Now I stay calm and try to breathe through as much as I can while I wait it out. There is no point in pushing myself too hard. If I even made it upright and started walking, I wouldn't make it down the stairs.

I suppose if I didn't have people I care for, interests in life, or things I want to do, I wouldn't care. I could just wile away my days, lingering in bed. However, that's not me. Perhaps, I would have been better off with different cognitive impairments. I have horrible short-term memory and attention problems now, but my intellect is still fairly keen. My imagination is in tact. I have an active but unmanageable brain. I need a personal assistant to keep me on task. I've always had an active brain. I have never been bored in my life. I always find things of interest to pursue. I once realized that if I were locked away in a cell with nothing to do, I'd probably write a novel in my head and then start on other creative pursuits. So, here's the thing: I have things I want to pursue. I want to get out of bed and get going. For me, nothing is more deflating than the fact that I can't.

Day after day after day. Months on end. Years gone by. My mornings are not what they once were. Sometimes they are not at all. Mornings have given over to mourning. Mourning the person I once was. The life I was once living. The world I was once enthralled with.