Here is a roundup of some of the posts I’ve written over the last few years to help articulate just what it’s like to live with this illness.
“Today is not like yesterday, because fibromyalgia is a puzzle, where all of the pieces are always in constant motion, and are always shape-shifting into something different and new.”
“Right this very minute there’s a bird singing outside my office window, and I wish to God that it would Just. Shut. Up.
I don’t hate birds; I suffer with a chronic illness. I have fibromyalgia which, among other things, is a chronic pain disorder that takes even the sweetest, gentlest sensory input and turns it into unbearable physical agony, as if your nervous system is constantly being struck by lightning.”
“So tired of being in pain.
So tired of thinking about being in pain.
So tired of talking about how much I think about being in pain.
How many different ways can I say, “Hey-I hurt! And it really *$@ing sucks!”
“I have been having a few pain-free days lately (although I’m terrified to even write this, lest I jinx it somehow. It’s hard not to be superstitious when you’re living with something as unpredictable as a chronic illness). I’m very grateful, and very appreciative for these days, but I’ve stopped announcing them to the world at large, because people who aren’t sick just don’t get the fact that starting to feel good after m-a-n-y days of being in pain is just as difficult and disorienting as it is when you start to feel bad after a handful of days of feeling good. And when I try to explain to anyone else why I’m kind of weirded out by a feeling-good-day and don’t know what to do with it, as much as I know they want to help, I cannot “just enjoy it.”
“But treating fibromyalgia is not like treating a sinus headache or strep throat, where the parameters of the illness are known and understood, there’s a standard treatment that clears up most cases, and there’s a predictable, linear improvement once the patient starts taking the necessary medication. Clear cause, clear treatment, clear effect.
Fibromyalgia on the other hand is a puzzle where the pieces are not only constantly moving, but also constantly changing size and shape. And speaking for myself and most of the fibro patients I know, there is no one thing that gets rid of all our pain. We’ve all had to develop an entire range of tools to deal with our illness.”
“After about five years, give or take, my symptoms stabilized a bit. I’d learned enough about how fibro affected me, my body, and my capacity to be able to venture out in the world a little. From here I’ve been focusing my awareness on how to create a happy, thriving, everyday life while also living with chronic pain and illness. So it is from this place that I offer a few of the lessons I’ve learned over these past few years of being ill.”