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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Sunday, April 21, 2013


It occurred to me after reading the suggestions people gave me for how to deal with the issue of my eye pain being t riggered by a lit candle that one of the problems we face is the individuality of not only the pain, but the minute specifics of it.

The candle hurts my eye.  Can you patch it?  Can you wear sunglasses?  That should fix it.

Normally, in the common world, it would.  In my world, it does not.

It is not the brightness of the candle.  Well, it is the brightness but not the brightness alone.  The movement of the flame is the problem.

My eye cannot tolerate movement as I read or follow someone walking, for instance.  For some reason, no one has figured out why, the pain is also quickly, immediately, triggered by movement in front of the eye, even if the eye itself is not moving.

There are some forms of M.S. where the person has trouble walking one day and the next they are fine (before it happens again)

You had the cane on Wednesday.  You didn't need it on Thursday, so why are you using it today?

(When I used a walker for a few weeks, after a surgery that left me very weak and more balanced impaired then usual, I was very surprised when a man I vaguely knew from my apartment building saw me on the street.  He stopped me.  "I saw you in the foyer not using your walker.  Why are you using it now?" I was flabbergasted, that he noticed and even more so that he questioned me about my use of it.)

Some days our pain is bad, or our physical abilities less then the day before. 

I understand why someone might question what they do not get.  Your eye is not moving.  Why would watching someone fan themselves hurt your eye?  You could get around yesterday but you can't today,.  How come?  You were able to bend down to tie your shoes an hour ago but you can't pick up the towel on the floor now?  It does not make sense.  I know even for me it sometimes seems surreal.  But, it is real. 

How do you explain?  Do you need to explain?

Life is full of inconsistencies.  Why should chronic pain be any different?

What do you think?