Friday, March 4, 2016

Fibromyalgia: This Is Who I Am

I hurt. I hurt like a bird brought down from flight, a tree limb weighted by ice, a shuddering bolt of metal in a groove. There were times I ran in the sun. I have swum across lakes. I have carried heavy loads. I will still do those things. I will. But I hurt, all over. Something with talons has me about the neck and digs in, and I strive every moment to escape. Signals fire down my limbs. Elbow, wrist, fingers, knees, ankles.


I’ve recently been diagnosed with Fibromyalgia, and I have the most profound relief. Honestly, I wish it had been something worse. Something that would make people really sit up and take notice! Because “Fibromyalgia” sounds sort of like “Oh, you have the Yuppie Flu” or “You have some chronically lazy and fake pain caused by your hatred of being a servile wench at the beck and call of the helpless multitudes” or “You wish to get out of folding the laundry again.”

Well, it’s real, and you can listen to people speak about it in the NY Times here.

And read about it here.

And here.

Fibromyalgia has the following symptoms, at least for me:



  • Lots of fucking pain all over your body, most of the time except on those rare "gift" days.
  • Crushing fatigue, on and off.
  • Fuzzy-headed "fibro-fog:" A condition that makes you feel drunk, but not in a good way.
  • A hyper-attuned startle reflex, such that a ringing phone or a sneaky kid with a water-bomb makes me have a small panic attack.
  • An unsettling feeling of nerves "firing" in my body when they should not be. Like a series of small bombs going off: Plink! Plink! Plink! Every time they fire, I grow tense and exhausted.


Still, I wish I could have told people I had Lupus, or something like Granuloid MyoOptic Diffusion Carconosmia (doesn’t that sound scary?). My 16-year-old cousin died of Lupus! She really for real did. And that would mean I might die of it too, and people would feel really sorry for me and bring me pies and never once question the veracity of my pain.

I don’t have Lupus, so thinks the doctor. (Still waiting on the blood tests. I might have it, or worse.) And I don’t get any pie. I don't even care for pie! I hate pie. Don't bring me no stinking pies.

For months, years, I have asked doctors to tell me what’s wrong with me. They have all said I’m healthy as a horse.

“Your bloodwork is completely normal and there is nothing at all amiss. You should consult a psychiatrist, because you are clearly a nutter who is looking for attention and is making up a whole lot of fantasy badness in your head.”

“Your MRI shows nothing that would explain this pain. Everything is normal. Normal! I will send you to physical therapy, where they will charge you up the wing-wang to pull at some elastic bands and hoist wimpy 3-pound weights and do stretches. But your physical therapist will be exceedingly white-toothed and attractive, at least.”

“I’ll write you a prescription for Myclobenzaniadreapene. That will relieve some of the pain. Except you’ll be so sleepy you won’t be able to function. In any way. You will be comatose. And during your comatose-ness, you will actually still feel pain! Because the pill is actually just a placebo made of horseradish and marmot sweat, with a touch of sleeping powder as a glaze.”

Before I knew what this thing was, I complained to anyone in range, when I hoped to have a kind ear. My fingers turned cold and numb and white, when the temperature was a mild 62 degrees. I slapped at them and felt nothing at all. I cried, my cheek against the cold bathroom tile. My comb was filled with loose hair and I was as stiff as an 80-year-old, clenching tight upon the banister to get downstairs. Every morning is like that. I’m old before I’m young again.

I get really cold when no-one else in the room is cold. My teeth start chattering. I don't understand.

One friend said: “You're cold? Come on. Women are being enslaved in Syria. Hello, #FirstWorldProblems.”

I stopped complaining, for the most part. 

Well, no I didn't. But I tried hard. I tried to direct my complaints toward kind ears, such as those of my veterinarian friend, who, upon hearing some of my symptoms, suggested I see a rheumatologist. 

"My vet sent me," I told the woman who finally diagnosed me. My vet says she sees dogs gaze at her with the same kind of sad puppy-dog pain-filled eyes that I have. (She's one of the few whom I have allowed to see the full spectrum of unattractive misery.) 

I don't wish to complain, because it is utterly boring. But I want to explain away the grinding exhaustion that casts a dark shadow over my face during a game of Uno. I feel I should account for the fact that I keep grimacing, that I suddenly have to lie down. The raptor of pain has me in its grip. I’m not your mother anymore. I am a thing. I am a thing of want and hope. 

“What’s wrong, Mommy?”

“I’m in a little bit of pain, honey.”

“Are you sick?”

“No, I’m fine. I’m not sick. I would like a healing hug.”

And so they give them, believing in their small powers to cure. And every now and then I feel a frisson of energy awaken me, and my back sings, and my heart thrums, and my very hair starts to vibrate, and I think: “My son is a natural healer!” 

When the hurt settles again, I decide: “That was some powerful mojo. But it didn’t last. But it was for real while it did.”

(I really do believe in things like Reiki. In my next life, I will be a Reiki practitioner. I will help people, and heal them. And I do believe that my sons’ healing energy has given me something. Maybe I am a total whacknut, but littlest son’s last “Ultimate Special Hug With Kiss Attached And Some Chi” packed a big whammy. I'm not joking.)

My doctor gave me a pill. I am waiting for it to work. I don't write anymore. I don't do much of anything anymore, except wait for that pill to work.

It hurts while I am watching a movie. I try to pay attention to the plot, but really I am wondering: “When does the pain end? Will this go on forever and ever?” It hurts while I am watching my eldest son’s basketball game, during which he moves so gracefully, so swiftly, that, for a brief moment, it makes my heart swell and ache beyond comprehension. How could he be more beautiful? He's suddenly so tall, so heart-rendingly tall. And my second son spins through the living room and lands at the piano bench and bangs out a perfect rendition of the Star Wars theme from memory and then spins away, pain free, light as a breeze. And youngest son flails himself without fear from ottoman to couch in gap-toothed ninja derring-do, and I watch it all and feel love and joy and all along the way I can’t help but think I’m in pain I’m in pain I’m in pain.

I wish I could stop thinking about it for just one hour. Five minutes. And I feel incredibly guilty, because here they all pass before my eyes and what am I thinking about? Me. My own pain. Circus caravans and dancing yetis and talking penguins in bras could pass before my door and I would still be crouched in some small corner of my brain, cognizant of only one thing. Pain. Boring selfish whiny stupid ever-present pain eating my days alive.

What a bore. I have become a fucking selfish bore.

I wish I could stop feeling it.

But sometimes I make myself forget, actually. I am learning to play “Linus and Lucy” on the piano. When I sit down at the piano I become not myself, for some pure minutes, and although I feel pain tracing its insidious way down my right hand as I hit the chords, I don’t care.

Last winter, I decided I would learn how to skate, because it was the scariest thing I could imagine. I could twist an ankle! I might fall and crush my coccyx! Or I might fall and a skater would skate right over my hand and slice off all my digits! (OK, you have now probably realized that I suffer from anxiety, too.) I hurt all the time while I was skating, but I didn’t care. I was learning how to fly. One day, while I was clinging hopelessly to the side wall and scratching along, I heard a girl say to her friend, “You’ll never learn to skate if you always hold onto the wall.”

On that day I resolved to let go of the wall, and I was freed.

This winter I went sledding. I learned how to serve in paddle tennis, such that the ball goes in 95% of the time as opposed to 5% of the time. I practiced in my driveway once, against the garage door. I hurt the whole time I was doing it, but I didn’t care. I played one-on-one basketball with my son in the same driveway, and I was terrible­—an embarrassment! He took me down. He was “baller,” in tween lingo. I was a rickety, rusted thing. But I tried, and played, and that is what I care to count. I gave him a run for his money, because I never go halfway.

Every moment hurts. But every moment matters, even when I hurt. Right now, as I type, my neck and back and arms and fingers and knees are a blurred presence of pain. I want so much to walk to the piano and just play, free and clear. I composed songs; I want to finish them. I want to sing. I want to finish that beautiful novel, but after being at a computer all day, hunched and intent, my body betrays me: No more no more no more.

Even writing this hurts. Typing even hurts. But it was worth it, because maybe someone like me will one day read it and think: I am not alone.

We are not accidents. 




4 comments:

Anonymous said...

Oh JennyP - Feel better soon. Gail C.

anna allocco said...

Dr Bessel Van der Kolk wrote a powerful book, The Body Keeps the Score. The connection between chronic stress and pain is undeniable. Complete recovery is possibles!

Erin MacPherson said...

Oh my gosh...this is awful. I would bring you pie!! I'm so sorry...this must be so hard. I'm glad you have a diagnosis and can start to heal

Agnes Lawson said...

I know exactly how you feel. Having pain that can't be "verified" by x-rays or tests is so frustrating because no one believes that you're hurting badly. Even friends look at you and assume that you are healthy, not realizing that you are actually in agony, but trying to go on with life and not constantly complain.