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The hidden symptoms of MS

Posted Jan 14 2009 8:53pm
I imagine that many people with MS are like me. At first we are astonished by our diagnosis. It is the center of our thoughts. Our symptoms are a giant net and we flail at their cortex. Then, depending on our predispositions we start to move beyond our diagnosis. I imagine that some people define themselves by their MS but that most of us choose not to. I have chosen not to. Yeah, I have MS but that is a tiny part of what fundamentally makes me, me.
I also imagine that at first many of those with MS tell others a lot about their symptoms but in time, they stop talking about everything except the major stuff. I guess that at that point, if they seem cheery, well-adjusted and physically well that most of those around them assume they are no longer experiencing symptoms. I doubt this is really the case though.
I am in "Remission" and in some ways I would say I am 110% of what I used to be but in another sense I am still really sick. I am exhausted all the time now. I still have trouble focusing my eyes. I get spasms in my back and neck. Nights are the worst... I am depressed, tired and afraid to go to sleep. Every REM sleep has its terrors. "Brain Cheese" mentioned "Going down the rabbit hole" in her blog. Every night I go down that hole, sucked into the black vortex of REM sleep. I startle awake, feeling I have forgotten to swallow. I wonder if I will wake up or die somehow during the night. I have already made my peace with death so I usually go to sleep without fear now.
When I awake I have to come back anyway. I awake nauseated every time. It is only through breathe that I slowly resuscitate myself each morning. I awake blurry-eyed and sick. I mediate and use my breathe to clear the symptoms enough that I can get out of bed. Once I have completely cleared my body in the bathroom, I begin to see a little better. Once I have eaten and swallowed some black tea I approach the reality where "normal" people live but even then I am other.
Even with "benign" MS you know that it is not really benign because you can have a relapse at any time and then it is no longer benign. You live, trying not to wait for the other shoe to drop. You try to be present, define priorities and set boundaries but people are looking at you like you are fine and that you are also a big bitch for not caring anymore what anyone else thinks. I am sorry but half the time I am so depressed I don't even care what I think. I give myself a pep talk and say that it's ok to be sad sometiomes but I hate myself for even dwelling.
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