Friday, July 31, 2009

My energy drain on fibromyalgia.

The fatigue of fibromyalgia is like an old battery.

When the day begins, my battery is already half expended. No amount of caffeinated beverage is going to get that bad boy back to fully charged.

Fascinating to me are the things in my day that drain it. Take yesterday, for example. The evening before i'd had a massage. aaaaaaaaaaahhhhhhh. Yesterday morning i woke up and was an hour into my morning when i realized "HEY! i don't hurt!" Usually my first waking thought is "go get a pill for pain." And i didn't need one. How richly bizarre.

So i went on my way--a doctor's appointment, copy some papers and drop them off for a different doctor, refill a prescription, go get my eyebrows done (a necessity, trust me.) A little lunch, maybe a quick wander through a furniture consignment store. i really should stop at Target and pick up some cleaning supplies...

However, i've hit my wall. i'm fully in pain again. Plus these 3 hours of driving/thinking/doing have spent the battery. i must lay down now, and if i go to Target i will end up laying in the aisle.

Each and every thing done in a day causes a drain, not unlike any other person on the planet. The bugger of it all is that the battery started out the day half used. i have to keep a watchful eye on the battery gauge for that danger zone flag. Again, like the oversensitive screaming girl in your face pain, the battery gauge is oh so oversensitive. What?? Didn't stop shopping at the first signs of fatigue? Energy shortage for 3 days! What?? Had a great day out of the house? Down for a week!

It's a baffling, mystifying, annoying thing, this off-brand, previously-owned battery of the person with fibromyalgia. It never fully recharges. Some things may be found to help--given the nature of fibromyalgia, each person with it has their own unique stack of problems. For some, finding their food allergies and avoiding those helps. For others with more will-power than i, exercising is great. i want to use my half expended battery on the fun things! If only i could see exercise as fun.

i'd be glad to abuse some Ritalyn if it would help, but my doctors think i'm kidding when i suggest it.

Friday, July 24, 2009

My body on fibromyalgia Part 2.

i have burned my back with the heating pad, not quite this seriously--who knew those clasps on my, um, "Support The Girls" apparatus could get so stinkin' hot?

In the interest of illustrating the "screaming girl" analogy of my previous post, thought i'd share this.

Doing laundry. Every so often it's necessary to wash all those little rugs that hang out at doors and sinks. i have a clothesline out back for our lovely California days, a perfect place to hang all the little lovelies.

Rug One--sure, a bit heavy after the washer. Reach up to clothespin it to stay put on the line--if i don't and it drops, one of the doxies running around our house and yard will either eat it or pee on it.

Rug Two--reach up with it, ooh--arms from shoulder to fingertips are feeling it. And it isn't a question of strength, the actual muscle strength is there, no, it's those naughty screaming nerves.

Rug Three--begin to reach up to the line and OOH! a pulsating heat blasts between fingertips and shoulders. Arms begin to shake. Muscles feel exhausted, like i've just finished 15 pull-ups instead of hanging two small rugs.

Rest, repeat.

Not complaining, simply illustrating. Fibro is a weird thing indeed.

Monday, July 20, 2009

And this is my body on fibromyalgia--

i think i've found a way to help my 21 year old son understand fibromyalgia.

It was all because of a conversation. One of the million or so we've had on the subject since i was diagnosed about 4 years ago. i understand it doesn't "show." All limbs are apparently still connected. i don't walk with a limp. But we've been going through this for some time now. FOUR YEARS. Roughly.

He was trying to explain to me how there were things i could do. What exactly? i questioned politely. Well, he said, if you just push harder at things then you get better and better at them. (i believe exercise was the subject matter--the skinny little high metabolism can eat anything and everything and never gain an ounce punk of a guy.)

This is where you are wrong, i say calmly (for how i felt, at least.) Think of it this way, i say.

The reason having fibromyalgia is as painful as it is comes from the actions of the central nervous system. You see, IT thinks i am in much more pain than i should be for the amount of effort my body has made. The nerves are over-sensitive. NOW: picture a girl. An angry, emotional girl. Because she over-reacts to things with sobs or anger, you do this one little thing, she over-reacts, and before you can blink she is screaming in your face. This is what my nerves do on fibromyalgia--i do one little thing, they over-react. A little of what seems normal movement causes screaming in my muscles and such. The next time i say "i hurt" i want you to remember that hysterical girl screaming in your face. THAT is my body on fibromyalgia.

Does he "get" it yet? i can't know for sure, or if he ever truly will.

And this doesn't even touch the brain or emotional issues involved.

But you can just bet i will tell both him and you about those as soon as i can think of a good way to explain. Trust me.

Saturday, July 11, 2009

A book and a latte. Doesn't get much better.

Wow--it's been a while since i've been here. Feels like i need to have a look around and see if anything has changed--nope, that dirty coffee cup is still here since March. . .

Sometimes i wake up from a dream where i am running, easily and freely. Last night was one of those times. In my dream i was wearing sweats and running shoes, bounding weightlessly around a track. It felt great. No pain, no fatigue sitting on me like a rhino. And then i woke up.

Coming out of that dream, waking up to the real physical me didn't feel so great. i ached from the top of my head out to my fingertips and down to my feet. i was exhausted, even though i had slept. i just wanted to go back to bed.

i had a lovely day on Monday--i rode BART (Bay Area Rapid Transit) with son Jarel over to San Francisco, where he went to jury duty and i went shopping. The Westfield Mall, one short stop from Jarel's jury duty, is a wondrous place--circular escalators rising through floor upon floor of *SHOPPING*. . . my kind of Disneyland ride! Because we were in the city early i took my book to a cafe with mosaic tables and huge crystal chandeliers, bought a latte in one of those oversized soup bowl cups, and read till the stores opened. Lovely. Relaxing. A mini vacation. i could see out into the mall itself with its huge spaces of comfortable seating, natural light streaming down from an ornate domed skylight. It was one of those amazing days of clear sunlight, no fog. The kind of day that makes my heart go "Ahhhhh."

Every day since i have hurt. The annoying achiness and fatigue of the flu that leaves you wanting to cuddle up with a cup of tea and just feel sorry for yourself. But it isn't the flu, it's that *interruption* of fibromyalgia.

i recognize that in this world full of cancers and starving children and job loss and home loss, fibromyalgia isn't the worst thing i could have happening to me. i used to joke at the beginning of this fibro exploration, "The good thing about fibromyalgia is it doesn't kill you. And the bad thing about fibromyalgia is it doesn't kill you."

Flippant? i don't honestly think so. Some days i'm so thankful that i'm not looking at possible death or loss of a limb, while other days i feel so under the weight of the pain and numbing fatigue of it all that i lose sight of hope and joy and tomorrow.

i'm not a person to ever wish my life away, just some days are harder to keep my eyes focused past the today-ness of this annoying, concentration stealing, invisible-so-people-find-it-hard-to-believe-you millstone around my neck.

But i still had a really good day on Monday, and i'm still able to close my eyes and remember the refreshing feeling of that cafe.

Skimmer's recap: Fun on Monday, sore and exhausted every day since. A little feel-sorry-for-myself binge on Friday. Hoping for a better Saturday. Wouldn't trade that latte and book in a cafe for anything.