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.

Thursday, March 26, 2009

Will work for praise.

i'm apparently incapable of finding a cartoon to fit this post. Maybe i'm simply impatient. So let me set the scene for you mentally:

Inside the bathroom the chrome sparkles, the shower gleams. Even the sink shines a welcoming grin. i am seated on a lawn chair in said bathroom, plastic cooler to my side. "Well HELLO!" i say as you enter. "Pull up a seat and pop open a soda-- Yup," i say gesturing with the hand holding a diet root beer, "i cleaned that mirror." i smile proudly. "And that shower wall, well, that bad boy gave me some trouble but it was aaaall worth it in the end--i got that soap scum off till the walls are as smooth as a baby's bottom."

i nod in proud silence as you stare numbly at the scene. "Yup, that was some of my finest work. Sit down a bit and we can just admire. Join me!"

You may as well sit down and say some nice words, because i'm not shutting up till you do.

Housework? Not my favorite. Praise? My favorite. Put the two together and i may get some of the first one done.

i can't seem to help myself. Sometimes i hear me talking and my brain is saying "shut up shut up!" but the mouth keeps going. For instance, my youngest daughter and her husband are staying with us at the moment. They enter the dining/kitchen area where i am standing. "Yup, i cleaned aaall the kitchen counters today!" They look blankly yet politely. "Shut up shut up!" screams my brain. The man's a real live chef. He expects a kitchen to be clean. My daughter loves a clean kitchen. They cleaned their apartment kitchen incessantly. But can i stop? NO. i will continue until someone politely says "Oh," with a courtesy smile.


But seriously, i ask, what is the point of cleaning if no one notices? i've used that theory for years to avoid cleaning. In fact i wait too long just so a completed task is noticeable. My husband is easy going about the whole cleanliness thing. We both enjoy cleanliness, but we're neither one invigorated by the process. You will never ever walk into our house and hear me say "You need to go now, i can't WAIT to get started cleaning that refrigerator!!"

Last weekend i got to help my friend's father sort some papers on his desk in preparation for moving. It was the closest i will ever get to an archaelogical dig--the various stratas of civilization on the desktop covered more than a decade. Much in the way an archaelogist delicately brushes the dirt from a bowl, i would carefully blow the dust from a letter from 1997. "Look what i found," i would say in awe.

Sorting is fun, her dad was appreciative. Working for praise, my favorite. i was pretty tired by the end and i'd forgotten my cooler, or i'd probably still be there--"Hey! Come on in! Grab yourself somethin' from the cooler! Check this out--that desktop was covered in papers and look at it now. Yup, did that myself--"

Skimmer's update: Want something cleaned? Laundry done? Hand me a soda and tell me how awesome i am. Will work for praise.

Tuesday, March 10, 2009

Happy birthday, somewhere--

Today is March 10. It's my brother's birthday. Though i haven't seen him since some time in 1989, when March 10th rolls around i remember.

It's not that he's dead, at least not to my knowledge. All i know is when i sent his Christmas present in 1989, it came back. "Return to sender: Moved No forwarding address."

He was my big brother, the one to go straighten out the kid at the playground who knocked me off the monkey bars. We were never really close, he and my sister were closer in age and more into the same things at the same time. He was in a garage band, she was into the boys around the band. Stuff like that. i was nearly 4 years younger than my sister but he was separated from her by only 2 years. While he was rockin' the rebellious hair, i was in awe of the first girl in my 5th grade class to wear a bra. Widely different places in life.

i don't guess i was too surprised at his leaving the family. Our father had recently died, my sister and brother had stopped communicating with our mother, and even when we'd all shared the same house we were far from the Cleavers. Heck, the Addams Family was more the All-American family than we were. (And their house was way cooler too.)

We three children all had our issues with our parents, not an uncommon thing in a family. But i've never understood my brother leaving us. My sister and i are still close, perhaps closer as we've gotten older and realized we Did Good surviving the chaos with still liking each other.

i will probably never know why my brother left with no forwarding address, but at least once a year, on March 10th, i stop and remember the big brother i once had who gave the kid at the park the what-for to stand up for his little sister.

Happy birthday, Michael, somewhere!

Thursday, February 26, 2009

Ready or not, here the ants come.

Housecleaning has never been the thing to give me that sigh of satisfaction of a job well done. It's never increased my endorphins. It's never given me something to get up for in the morning. (Well, that overlaps another thing that doesn't thrill me: morning.)

The things i love, the things that make me happy, ahhh....give me a yarn store to peruse, or a stack of books to read, or the sound of the ocean. Give me a store with...well, pretty much any store will do (sadly.) Then my heart sighs. Then the endorphins flow. But making a house sparkle? Getting that stain out of that shirt? Stuff's just going to get dull or spilled on again, so big woop.

Recently we've been fighting the rebel hordes of ants who desire to live INside rather than in their cozy ant hills in the great outdoors. Seeking the Holy Grail of Honey Grahams and Cheezits, they have raised their tiny swords high and come full battle force over the hill and into my kitchen. i appreciate their organization, their ability to work as a group, but i don't appreciate them in my cereal. Therefore they must die (i know, i know, "we're all a part of life" and whatnot.) They leave a lot of work for me that i don't enjoy (see previous paragraph for things that do qualify under "enjoy.")

This is where i admire those women who believe firmly in "leave things better than when you came."

This is where i want one of those women to come use my kitchen. You get the gist.

Skimmer's Recap: Ants clever, still want them dead. Please come clean my kitchen.

Wednesday, February 04, 2009

i'm a winner. Yep, me.

Recently i received this award from encouraging blogfriend Connie, over at My Thoughts and Creations. By the time i put the picture on here the print got too small and blurry to read. But she says "This award is called the nobelpris and it has to do with being a nice Mom to children, animals, anyone." And Connie wouldn't lie to me, right Connie?
Anyway, i've always hoped to be a nice Mom, though i apologize often for all the mom-things i didn't know how to do when they were smaller. And i have the unfortunate leaning toward mothering my friends. (Sorry, grown-up friends! It's all well intended! My nurturing gene is over-developed.)
i do have a soft spot for animals, and have recently aided in the capture of two little dogs who went astray, and in the returning them to their worried families--in the past 3 weeks. In fact, if i'd known how much chasing i would do yesterday, i wouldn't have gone to the gym first.
Thanks Connie!

Thursday, January 29, 2009

Why Cori makes me laugh.

Daughter Cori has always been able to make me guffaw in surprised laughter. Her timing and phrasing is guaranteed to unspool me. Here's an example.

Last night, for whatever reason, i was pondering the odd parental promise of "I'll give you something to cry about!"

Without any hesitation Cori said in her deadpan way, "I'll give you something to cry about--there's no Santa, and your grandma isn't in heaven, she was a bad, bad person."

i became helpless. (Also a little fearful for any future children.)