March 21, 2015

The dream I had last night was far too accurate a metaphor for my life than I’m comfortable dealing with. It was long and drawn out, with many different twists and turns, but the theme was the same throughout: autoimmune disease is always going to try to get the upper hand, but it cannot win. A preteen boy, overweight with short black hair and a round face, represented the diseases. He was always ultimately in control of me, even though I tried to defy him at every turn. Sometimes he pretended to be my friend and I’d start trusting him, and when he had trapped me in a corner or a car he would change personas and pull a gun to my face to try to force me to do something. But I never did because I knew his gun could never kill me, even if he pulled the trigger. I was always trying to run away from him, but no matter where I ran he was already there, even if I had left him far behind me when I started running. There were other elements of the dream; a new large house that my parents had purchased, a stay in the hospital, an old car with a german shepherd dog in it that I had been promised I could keep, a room full of empty chairs and tables, a long circular hallway, a doctor that listened to me, but the main part of the dream was always that boy and how I was either running away from him or behind the gun he had pointed at me. It was a very vivid dream and I’ve thought of it all day.

I had another victory as far as independence is concerned today. I did the dishes from lunch. There weren’t many, and I had to lean on the wheelchair at first and ultimately sit in it, but I finished the dishes all by myself. I couldn’t eat the lunch I had wanted today, which was celery and carrot sticks and dip. It was too crunchy and my jaw wasn’t strong enough. I ended up eating a smoothie and feeling betrayed by my body again.

Even though I’ve posted it online and have tried to make myself believe it, I still haven’t quite accepted the diagnosis of Myasthenia Gravis. Everytime I feel okay I tell myself I’m just fine, and my issues were only temporary and caused by the high dose steroids from the Addisonian Crisis. Then my left knee gives out and my legs feel heavy again and I have to remind myself of all my “Addison Days” with my concrete legs that can’t be attributed to Addison’s disease. In those good moments I also seem to forget about the fact that I’m on medication specifically used to treat MG and that’s the reason I feel okay, not because my muscles are working again on their own. It’s devastating each time I have to relearn that I have this new disease.

Regardless of my defeatist attitude when I write, I am getting better. I can do more everyday and have added two reps to each of my physio exercises. I’m pacing in the house with the walker more and more and am trying to rely on the wheelchair less and less. I refuse to call it “my” wheelchair and instead refer to it as “the” wheelchair. I refuse to take ownership of that thing, even though it helps me a alot. I wish my family would notice my subtle language around it and follow suit, but they haven’t and I don’t really want to point it out to them. I’m not really sure why though.


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