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I awoke at 8 am this morning to the sound of my six year old son standing next to my bed cane.  He wanted to say goodbye before he went to school.  My partner Justin swept into the room to bring me some coffee and turn on the heat.  If the room is too cold my legs cramp up and I have a hard time walking. I did a quick survey of how I felt, starting with “can I get up on my own to use the bathroom?”  I decided I could.  In the time it takes me to get up and complete this task my little boy is being taken to the bus stop, Justin is cleaning the house and preparing my food and darn near an hour ticks by.  My legs have cramped up anyway and the nerves feel like they are strings on a guitar being tightened and tweaked, plucked and strummed.  They reverberate and waves of pain seize my lower half.  I grimace and continue on.  I grab my laptop and settle in to the idea that today may be one that is spent in bed.  “Bed days” are not foreign to my 30 year old body but are still fought with resistance by my brain.  These are days that consist of sleep, research, emailing, reading and hopefully a little writing.  In fact I have learned that quite a lot can be accomplished from bed including delegating responsibility, paying bills, counseling friends and family via the phone, reading to my son, laughing with my partner and at times just being a general smartass so that people know I have yet to lose my spunk.  Am I productive?  Maybe not compared to your average woman with a family and a career, but who’s comparing?  Certainly not the people that love and care for me.  Most of my shame and guilt is self inflicted and I have chosen not to take that path.  I look forward to the days that I can get up and accept the days that I cannot.  This is my life.

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