Some days

are better than others.

Gotcha!!

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!

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5 Comments (+add yours?)

  1. gibsongirl247
    Sep 19, 2010 @ 20:49:44

    Kittie,
    I’m glad you posted this blog.
    What a loving post about your dear husband. You are blessed to have him, as he is blessed to have you.
    This blog made you more Real.
    I love the childhood book, The Velveteen Rabbit.
    “…but REALLY loves you, then you become Real.” “Does it hurt?” asked the Rabbit. “Sometimes”, said the Skin Horse for he was always truthful. “When you are Real you don’t mind being hurt.” ……”When you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”
    Thanks for taking the time to be Real to your bloggy friends:)

    Reply

    • Kittie
      Sep 19, 2010 @ 21:51:16

      Thanks, Dawn! This wasn’t at all the post I sat down to write today…but it’s what came out, and I’m not sorry. I love your quotation from the Velveteen Rabbit; what a lovely image! I want to be Real, shabbiness and all, always…

      Reply

  2. She.Is.Just.A.Rat
    Sep 20, 2010 @ 15:27:43

    This is probably the sweetest, loveliest, and most honest post I’ve read in quite some time. It is wonderful that you are in such a loving and supportive relationship.

    A couple of years back, I started to develop pain in my lower back that quickly began to spread. There was no real indication as to what it was, but no painkillers could touch it. My doctors essentially seemed to convey that I was making it up to get medication. Truly, I just wanted to be able to sleep. I had wondered if it was any myriad of things…fibro…lupus perhaps…the pain spread from back pain to all over my upper back, shoulders and upper legs…and morphed from what felt like muscle pain to the feeling like I had sunburn…I couldn’t remove clothing without the feeling of skin being ripped off…I couldn’t take the stairs without looking like a 90 year old woman.

    Finally, my doctors – knowing of my diabetes – decided to begin to listen to my concerns, and considered the fact that it could be nerve damage. Sure enough, I was put on Lyrica, and while the pain wasn’t instantly dispersed, it did help. Later, I heard that another drug – an antidepressant – was used for similar nerve-related issues. So I switched to Cymbalta. I was able to take one pill every two days and the pain was gone. It was amazing…eventually, I realized that the condition seemed to have disappeared as suddenly as it came. I researched and researched and discovered that I likely had a condition called diabetic amyotrophy…essentially muscle wasting. Very rare…something like 0.8% of diabetics get it, and they are usually quite old.

    I’m not sure why I shared this…I suppose because you were so open and honest in this post. I’m certain that you’ve tried the two medications that I used, but perhaps not. I know Lyrica has been successful for some people with fibro…I don’t know if Cymbalta has…all I know is that my experience made me so grateful for something I never used to think about…and I never take for granted the time I’m pain free now. I wish you all the best…

    Reply

    • Kittie
      Sep 21, 2010 @ 01:19:53

      Thanks for that!! It does definitely help to hear that I’m not alone in dealing with health challenges on a daily basis. I did, in fact, take Lyrica and Cymbalta for two or three years, but decided the side effects weren’t worth the minimal results I was experiencing. Doctors have been trying to put me on antidepressants for…gosh…20 years now? I’ve tried several but they never stuck…I hate the ‘zombie effect’ – and if there’s nothing else in life I’m sure of, I KNOW I’m not depressed!

      I’m getting some awkward comments about this post from people I know in ‘real life’. They seem to feel compelled to express sympathy or concern for me…and that’s SO not what I was writing about, or for. I know so many people who have daily struggles that totally eclipse mine, whether in their health, personal relationships, finances, job stress, or whatever…and we seem to hold those inside and talk about anything and everything else, just to avoid showing our vulnerability.

      I decided to let mine hang out, for better or worse. And to tell that it really is possible to enjoy Life, and count our blessings, even with those challenges.

      Thanks again!

      Reply

  3. jo
    Sep 29, 2010 @ 01:37:50

    i know your pain,love. i admire the positive engery you have.

    Reply

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