Sunday, December 11, 2011

A caregiver tells his side of the story, Part 1

"Diseases have their stories, of course.  They only have two, though, and both are written by those who do not have them.  In the first story, our heroine contracts The Disease, but The Disease never has a chance because our heroine is full of spunk or gumption or has an old soul (every folk tale has its regional variations) that The Disease cannot overcome.  Our heroine has her dark night of the soul. The Disease is a formidable opponent and looks like it might snatch her from us, but our heroine outlasts, outsmarts, out-hustles The Disease.  And we all feel better for having cheered her on.  The end.  In the second story, our heroine contracts The Disease, but despite her strength, spunk and gumption, The Disease is mightier and they march together towards her Noble Demise.  Everybody loves a good Noble Demise, one where you cry and your crying for our heroine redeems her, you and anyone who might be standing nearby." 
* * *
Unfortunately for PWCs, no one sees CFS as "The Disease is mightier".  They urge you to dig deeper and find more strength, spunk and gumption, even though you've already given it all you have.  The fact is, with most of us, we are doing everything the heroine of the first story did, and then some, but the body fails anyway ... because what we really need to do is rest, not push ourselves to overcome.  This is so counter-intuitive to most people that even when I say "the experts recommend rest", they argue with me that I need to exercise my way back to health.  Following doctors' orders to do less is considered proof that I've given up and taken to my bed in defeat, not that I'm falling back to regroup and recuperate.

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