Some days

are better than others.


I was diagnosed in 1995 with Fibromyalgia.  Back then, it was a particularly controversial diagnosis, as Chronic Fatigue Syndrome and related illnesses were under intense scrutiny and evaluation from the FDA and related medical agencies.

By the year 2000, Fibro was a widely recognized, if still disputed, syndrome (a collection of symptoms with a predictable pattern, though the cause and medical specifics vary widely from patient to patient).

I have lived with constant, widespread (affecting many parts of the body) pain for literal decades (omg I’m OLD!!).  It is a part of who I am, one of the first three phrases I use to describe myself to someone who doesn’t know me:

I love life.
I cook.
I have fibromyalgia.

Given the choice, those would be the three phrases that define me…to myself, at least.  To others in ‘real life’, unless I know them well, it would change to:

I love life.
I cook.
I love fashion & personal style.

It’s funny, isn’t it, the parts of ourselves that we try to keep hidden?

Updating my Facebook status is always a challenge.  A large part of who I am on a given day, or how I am experiencing the world around me, is influenced, if not dictated by, my physical handicap.  Even when Life is going my way, I may be in so much pain that turning too suddenly to the side, or bending to pick up a scrap of paper on the floor, is enough to make me pale, wince, and turn away from any possible onlookers until the flood of painful sensation washes over me and recedes to a tolerable level.  But do my 304 Facebook friends really want to hear that?  Nah. 

My life is a rollercoaster of discomfort, and my dear hubby has adjusted admirably to its necessities and reality. 

I told him about the fibro on our first date, giving him just enough information that he understood something of its daily impact on my life without dwelling on the specific symptoms or discomfort it entails.  By our second date, he had not only remembered the name of my disability…but had googled it and asked me intelligent questions about my personal experience, diagnosis, and prognosis.

I am a lucky girl.  Luckier than I deserve.

Because I have my days.  Boy, do I.  And he loves me through them.

There are days we’ve planned for weeks in advance, to go to a museum or movie or party…and when the day arrives, all I can do is sit morosely in my bathrobe and offer a wan, fake smile when he asks me how I’m feeling.  We don’t make it to the planned event on those days.  I wince every time I shift my weight, he insists on bringing me drinks and food and pillows I don’t want, and he is so excruciatingly gentle when he touches me that it hurts.

Sometimes, on those days, it really gets to me.  What I think about most is how different his life would be if he’d married a woman without so many complications and restrictions, a woman who could reliably plan her days in advance and answer with ‘Why not?’ when asked ‘Do you want to?’

We go on a road trip, even a short one like this weekend, and after 85 miles it’s all I can do to unfold myself from his incredibly impractical, but very cute, sports car and walk like a woman in her early (okay, mid!) 30’s and not like my own grandmother with a broken hip.  Sitting still for too long kinks the muscles, you see, and I’ll have crazy, miniscule muscle spasms for the next several hours.  Just part of life with fibro.

When it gets to me…sometimes I lash out.  I want to rage, and scream, and sob at the injustice of it all.  I am a decent human being, I use my turn signal, I wash my hands after using a public restroom…I don’t deserve this shit.  And some days it pours out of me, the frustration and the anger and the confused tangle that is my heart that day. 

And he listens, and holds me, and loves me anyway.  He rubs my shoulders when I can stand it, and drops butterfly-light kisses on my face when that’s all my overwrought nerves can tolerate.

He does the major bulk of the housework, keeping the litterboxes clean and taking out the trash and loading and unloading the dishwasher like clockwork, without ever throwing it in my face or even allowing me to feel bad about my relative indolence.  When I feel like cooking (which I do as a release from the pain as much as anything else) he cheerfully chops and stirs and samples for me.  And when he sees the pain in my eyes grow too deep, he insists that I sit for a minute and take a break, and I am grateful, even while I resent the necessity.

I go to work at the luxury department store where I’m a manager, and I smile and wear heels (at least most of the way through a shift, most days!) and act like nothing is wrong.  And when I go home and show him what’s really going on for me, I feel bad, because if I could maintain a smile for a hundred anonymous customers I’ll never see again…shouldn’t he get at least that much from me?

But there are still the nights when, as soon as I make it through the door from the garage and a cat or three meets me, rubbing affectionately against my calves and purring like they haven’t seen me in weeks…I can’t help tearing up and showing how grateful I am to be home with the ones who love me, no matter what I’m feeling like.

I am a lucky girl.

And I have Fibromyalgia.

She's my favorite...don't tell the others!