Friday, November 13, 2015


It's been a long time since I've written about being sick.  Just that word makes me both cringe and want to fight.  I want to say, "no, I'm not sick, I just have Fibromyalgia."  But that's like saying, "having cancer doesn't make me sick."  I'm ridiculous sometimes. 

For the few of you who haven't heard, Adele has a new single out called, "Hello".  I read an interview with her in Rolling Stone and she explained that it's not about a former lover, as one might assume.  Instead, it's more of a conversation she's having with herself.  The whole album, 25, is in a similar vein. 

After reading that, I listened to the song again (who are we kidding, for the millionth time, really) and it started becoming, for me, about life in the six years since I was diagnosed.  What I might say in a phone conversation with the woman I was at the beginning.  I quit calling her a long time ago.  I quit talking about myself a long time ago.  I still tell my loved ones the basic medical facts from each new doctor's appointment but that's all.  The words to the rest became a loop of same shit, different day. 

There have been no new ways to explain my emotions or thoughts, nor the physicality of this illness.  I think my personal best came one night when I said that the pain felt like a potato peeler was being scraped up my legs from ankle to knees, just stripping away bone in neat, clean shavings.  How do you beat that horror story of words?

Or the others that came before, trying to describe what felt like a collarbone breaking while you typed, or your ankle suddenly feeling like it snapped while walking into the store, the pain so vicious that you had to drag your foot along like a dying appendage.  These are just a few of the ways that fibromyalgia attacks your body and changes the person you are.

I know people might say, "but you don't have to let it change you" or "you're still you".  That's not the way of it though.  Pain absolutely changes you. 

Pain makes you tired.
Pain makes you less patient.
Pain steals joy.
Pain makes you sad.
Pain makes you full of rage at how unfair it is.
Pain makes you proud.
Pain takes away opportunities.
Pain makes you fight.
Pain is filled with guilt.
Pain makes you cry.. usually in the bathroom, with the door closed, hiding out from everyone while you stare in the mirror at a face that has been ravaged by a grimace of agony. 
Pain dulls the sparkle in your eyes.
Or maybe that's the pharmacy of drugs in your stomach that allow you to get out of bed at all.
Pain makes you forget what came before it.

I'm not the same woman that I was six years ago.   Adele's beautiful, powerful voice speaks of meeting and I wonder what I would say to myself across the line.  Maybe that this is the other side - the slow but steady progression.  The fight to stay the same and yes, giving in too.  I would say that there is good - the strangeness of becoming even stronger while learning how to be weak.  You are less judgmental and more empathetic. You discover that it's not always a bad thing to be selfish and how empowering the word 'no' is. 

You know how precious life without pain is and you jump into the good days with both feet, willing to play as hard as you can, for as long as you're allowed.  Even when it means paying for it, for days afterward.  I find myself doing that often now, despite how much it hurts.  If it's at all manageable, I do as much as I can and at times, frenetically, and then ask myself why.  Am I trying to cram everything in because I fear the day when I no longer can? 

I think I would tell her that I'm sorry for everything fibromyalgia has done to us but please understand that I have fought so hard and still do, every single day.  I'm not going quietly. 

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