Just a little earlier this evening I slid off the toilet and landed with a solid thwack on the floor with my bare bum all exposed and my undies around my ankles. Other than a twisted knee and what will probably be a rather sunset-hued bruise across my mid back, my sense of pride and dignity took the hardest hit. MS uses a rather crude peeler to pare back layer after layer of, "I would never," and "I'd rather be dead than be caught doing x,y, or z."
MS has a way of rubbing my nose in my physical failings like a parent who cruelly spanks their child for wetting the bed. It is as if a series of interlocking steps and processes that were carefully interwoven to create ME as I grew from infant to toddler: feeding & dressing myself, going potty, walking; grade school: exploring the world, meeting new people, riding a bike, playing outside; young adulthood: education, independence, travel, camping; adult: career, gardening, cooking, passion for living are collapsing back into themselves at an accelerated rate. Until I feel like my body is on a completely different journey than the one I expected to to take.
I've learned it is unwise to say I will never do or allow MS to do a certain step in my 'un'development. Although, I still cling to a few. I can't imagine having a total stranger come into the house as a bath aide. I don't think I could live if I were blind. Those are two that can crop up in nightmares. I used to be scared of being trapped somewhere out and about in my wheelchair, but in the twisted way MS works that has never happened because I am no longer able to go out and about alone because I become too fatigued and can get lost easily. Ironic, isn't it. What I feared wasn't anywhere as bad as what I ended up having to live with.
I am not particularly brave or noble or tough. I am, however, a survivor. Today required me to put aside my pride and ask my hubbie to drag my naked bum off the bathroom floor. And, knowing this damnable illness as I do, I am not too certain I want to know what it will ask of me tomorrow.
Friday, August 12, 2011
Sunday, July 31, 2011
Under Water
Four months? 16 weeks without posting, where did the time go? It is as if I went wading in a pond, my feet became stuck in the muck and I was slowly drawn under the water. Over time a thick opaque layer of ice built up covering the surface and I can't move or breathe. It isn't necessarily bad in a call the coast guard panic at the disco sort of way. More, just confining and suffocating and compressing and simply put, more than I can push past, through, or over.
Clinically, this is depression topped with a heaping ladle full of chronic pain and a garnish of cognitive loss, life hassles, and other bits and pieces of this and that. Frankly I am tired and warty and grumpy. I am equally tired of putting on a brave face and fighting.
And, in spite of this terrible inertia that grips me, I will. I wasn't sure I had anything left to say on my blog. Then, the other day a friend shared that she had shared my writing with a newly diagnosed friend. If I can let go of the idea that I have to be the poster child for the positive MS patient and share my life, warts and all. Maybe there are words left in me after all.
I can put on a happy face and act all sweetness and light. But, a little like a roman candle, I quickly fade and collapse. A short visit or a quick trip to the store or a walk around the block can lead to hours or days of increased symptoms. The pain I live with never goes away-it gnaws and eats at me all the time. Somehow, I have to find a way to live. That will be my focus.
Clinically, this is depression topped with a heaping ladle full of chronic pain and a garnish of cognitive loss, life hassles, and other bits and pieces of this and that. Frankly I am tired and warty and grumpy. I am equally tired of putting on a brave face and fighting.
And, in spite of this terrible inertia that grips me, I will. I wasn't sure I had anything left to say on my blog. Then, the other day a friend shared that she had shared my writing with a newly diagnosed friend. If I can let go of the idea that I have to be the poster child for the positive MS patient and share my life, warts and all. Maybe there are words left in me after all.
I can put on a happy face and act all sweetness and light. But, a little like a roman candle, I quickly fade and collapse. A short visit or a quick trip to the store or a walk around the block can lead to hours or days of increased symptoms. The pain I live with never goes away-it gnaws and eats at me all the time. Somehow, I have to find a way to live. That will be my focus.
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