Fibromyalgia and the Perils of Not Listening to My Body.

But there were sales, and the opportunity to go shopping with a friend at the outlets. And then there was my trainer the next day. So I didn't listen when I should have.

Shopping and training and pain, Oh My.

You see, in Fibromyalgia, the body talks. Much earlier than they used to, the muscles yell "ACK! NO MORE!" But I must be listening.

Nothing about me looks different to remind myself or others that something is different. No cast, no limp, no wheelchair. Just the same Julie that walked the earth 20 years ago, give or take a pound or 40.

A person with a back injury may walk with a cane. I've known one of those. A person with a broken bone wears a cast. I've done that. Even a person with a cold probably has a red nose. But with Fibro, we just look like our same old selves, because the working of it is inside us, in our central nervous system, where our bodies tell us that a gentle wave of pain is actually A TSUNAMI RUN FOR YOUR LIVES!

The funny bit (well, not at the time maybe) is that when I am in a flare, having overdone and caused a tsunami, even my brain gets scrambled. Those days my brain is a shaken snow globe, and the flakes of snow are pieces of words and thoughts and scribbles that just can't quite connect to make a whole ANYthing. I once saw a movie where a confused woman wore her bra on the outside of her shirt to work. When I started experiencing the "brainfog" of Fibro, I thought, "Oh no!! That could be me!"

Honestly at those times I fear for myself and my decisions. Should I be trusted with a car, or trusted out of the house at all?

I was there for all of last week and into this week, in FibroFlareLand. Hadn't really visited there for more than a day at a time in several months. Got a little cocky about that. Felt a little powerful. Thought I was strong.

And again I was humbled--I was reminded that I have this thing, this interloper and interrupter. But since this is my life right now, I'm trying to learn to muddle through--trying to show up for the gym, show up in my family's life, show up for myself.

These times of weakness remind me that in myself I'm not really all that strong. I'm at the mercy of this thing that lives in my body. I want to be all spiritual and be able to calmly say, "God's strength is shown in my weakness," but in all honesty, I don't know whether I'm doing that for Him. I'm still not sure what that looks like in this case.

The flares bring me down, but not as far as they used to, so I must be learning. Maybe that's where His strength comes in. I'll keep you posted if I ever figure it out.


What's your place of weakness?

My Monday fibromyalgic thoughts after a busy but fun weekend.

(cartoon here showing a big thought bubble choked with 

random phrases overrunning the edges of the bubble-- 

couldn't find one, so you'll have to use your imagination.)

i get tired of living up here in my head

today it's quite noisy and my focus is bad

i hear my brain chattering:

 "should i go work outside? 

no, i should clean the kitchen--

no wait, shop for groceries--

why's that so dusty?

no, i should be. . ."

forget it.

think i'll go take a nap.

Why it's good to be me!

More and more lately i find my brain has gone out to lunch and forgotten to take me along. The good part? Something happens that i didn't like?? Give me 30 minutes and i'll have forgotten it ever happened.

Now, THERE'S something i didn't remember....

In a phone conversation talking about all the recent sun and heat, my sister mentioned that not only had she had skin cancer, but also our mother and brother. Huh. Did not remember that.

i've always been a bunch of freckles that refuse to become anything resembling a tan, and the heat makes me feel gross, so i've never been one of those "fun in the sun" people. "Whine in the shade," maybe. So i'd never really given thought to skin cancer as one of the things i should worry about. And that thought led to another thought (as they so often do,) this being a memory of a doctor visit early in the diagnosis of my fibromyalgia.

i had mentioned that, along with all the achy, dizzy, exhausted symptoms was one that troubled me--well, let's be honest, it scared the crap out of me. There had been a couple of times while i was driving in a familiar environment that i turned a corner and suddenly thought, "where the heck am i?" Just that momentary "Twilight Zone" feeling of having driven into a different dimension, an alternate universe, a shift in time.

Having not been all that helpful previously, suddenly my doctor was in territory she knew--she could send me to another doctor, a specialist. "Would you like to see someone who could assess you for memory issues?" Sure, i was game. So we set up an appointment with the in-house shrink.

When i arrived for the appointment, i was feeling uncertain of what was going to happen--so, do i do my best imitation of "normal" or...? i suppose it's a common fear of sitting in a room with a member of the Mental Health profession: "Is she reading my body language right now? How about now? Do i put on my 'acting casual' face and try to appear relaxed? Or should i look serious yet pleasant? Thoughtful yet confident? And can she tell that i'm thinking all this?"

Anyway, she did her best to put me at ease--she wore her "compassionate yet professional" face and body language, leaning slightly forward as she tried to make the questions on the clipboard she was holding sound as if she were simply having a pleasant conversation with me. i, in moments of nervousness (and to be honest, in pretty much all moments) can be something of a smart-mouth. i tried to keep that to a minimum in this conversation, although many things came to mind during the course of the 2 page "conversation" about my brain.

As she wrapped up the questions, i looked forward to some sort of illumination of my memory glitches, maybe even with some helpful steps to be taken. i smiled my "pleasant yet confident in the face of the Mental Health Professional" smile and waited for the verdict.

"Well, it doesn't look like you have any early Alzheimer's symptoms," she said, smiling back. "Often as people get older, it's helpful to carry a notebook with you to jot things down on."

i felt my smile freeze. i didn't even know i should have been worrying about Alzheimer's.

Okay, so i know i'm over 50 now, and i know it's downhill and down gravity from here, but how many other things should i be worrying about that i'm not? Now, there's something to keep me up nights.

In absolute brutal honesty, my mind has left me on enough occasions that i'm left worrying about whether or not i'll be one of those women who leaves the house with her bra on the outside of her clothes. And seriously, how do i make myself notes enough to avoid any of this? What do i do, leave myself a note on the inside of the front door that says, "Check to be sure you're wearing your pants"? Or, "Before you go to the store, check that bra is under blouse." Or maybe one on my dashboard: "Don't get lost today." And how do i know i'll remember where the notebook is?

If anybody else knows what else i should be worrying about that i don't know, just don't tell me. i'll probably forget it anyway.

the "fun with fibromyalgia" interruption.

Okay, so it isn't really fun, but i liked the "f"s (what's that called? Alliteration maybe? School was a looong time ago...)

When i started wondering a couple of years ago if the aches and pains and dizzyness and extreme fatigue and foggy head were symptoms of something besides being over 50, i went where i always go when learning something new: into the obsession-land of reading, reading, reading. Web searches for this combination of symptoms brought up a number of possibilities, fibromyalgia among them. My doctor, bless her, saw my history of depression and put on her Doctorly Face of Compassion and said, "Often when the issues in our lives are resolved, a person will start to feel better." Okay, and maybe if i didn't always feel like i'd been hit by a bus i'd be less depressed. Just a thought.

Bloodwork showed i didn't have some of the other (scarier) things i was worried about, and the fibromyalgia tender points proved on examination to be, well, tender. Go figure. Unpleasant news, but at least there was a (not terminal) name to go with the face of my symptoms.

i guess what i've been trying to learn since is that i may as well stop arguing and instead try to make friends with this stranger, this interruption of my "real" life. i have some thoughts on what caused it to drop by for an extended visit, but i can't change that. So i'm trying to be the good hostess and learn what i can do to make its stay more comfortable. That's an easier job on some days than others.