Saturday, May 12, 2012

It's Fibromyalgia Awareness Day

I didn't even know there was such a thing.

You know that awfulness you feel when you have the flu? The exhaustion. The all over hurtiness. That's what I feel like everyday, even on good days. I know exactly how much time I've spent in the last few years not feeling pain. It was 2 hours I spent in a hot springs pool. Imagine that, counting in minutes or a few scant hours when your body feels almost normal.

I dream of being a head in a jar. Or having a cyborg body.

Fibro is this stupid disease where your brain interprets any work done by your body or pressure put on your body as pain. There are a gazillion theories. It's autoimmune! It's neurological! And you get to play the illness roulette. Is it MS? Is it lupus? Is it some flavor of arthritis? Chronic fatigue? You won't know unless something definitive happens. In the mean time- it's fibro.

A few months ago I was at a party and this woman was telling a story about how her dad is one of those guys who just won't let go of a joke. She illustrated by poking me, repeatedly, in the arm while saying "did you get it". For someone without fibro, this would be annoying. But for me, that stupid round of arm-poking meant 3-4 days of pain. And I knew that's what would happen, but I felt frozen and unable to say "stop" because I didn't want to talk about this stupid disease and explain that her actions were doing me real, actual harm.

Sometimes I wonder if part of the reason for the exhaustion is the amount of self-control I need to go out in the world and not show pain. I make it to the bus stop most nights on willpower alone, ordering my legs to move and grimacing with every step. Then there are the nights that I just can't make the 2 block walk. Those nights are getting more frequent.

Blood pressure cuffs and those stupid rubber tourniquets they use to draw blood make me cry. I wear braces at work so that I can keep typing even when my hands are screaming at me. I have a deep and meaningful relationship with shoe insoles. They are the only thing that makes wearing shoes and walking possible for me. Every single step I take every single day is pain. The insoles cushion the blow a little.

I get tired just taking my bra off, and it's the kind of tired where you don't know if you can make it the 3 steps to the bed. I am pretty sure that someday soon I will be out somewhere and my body will hit the exhaustion/pain wall and I will fall down in the street and not be able to get up. 

I take a fist full of pills twice a day. Pills for pain caused by nervous system issues. Muscle relaxers. Pills to combat the horrid insomnia which may or may not cause fibro. Supplements like potassium and vitamin D that are supposed to help. I see an acupuncturist/naturopath once a week.  With extremely good health insurance, I still spend several hundred dollars a month out of pocket. And I am in this horrid loop where I have to work so I have healthcare/money to spend on treatments, so that I can make myself functional enough to work. But that's as good as it's ever going to get, functional enough so that I can work and not much else.

While we're on the topic of mothers

This is what the Shared Sacrifice* assholes want to happen to our country.

Mind the click-bait, btws. It says "Mothers forced to sell their children" though nothing in the article supports that. Mothers in Greece are being forced to put their children into the modern equivalent of orphanages because no jobs, no home, no money.

 *It ain't shared anything. They don't share the bounty, they don't share the sacrifice. They made record profits last year. And we get....

The obligatory Mother's Day Post, number blabbety zillion

If you've been around this here blog for more than a year, then consider this your annual reminder that I HATE MOTHER'S DAY!!!!

If you're new, lemme tell you why.

Mother's day is the day of the year when we get plied with booze, brunch, and presents that scream "my children are assholes* and instead of getting what I need I get bubble bath and an eye mask. DO I LOOK STRESSED? Why the fuckity fuck did you get me the 99cent 'relaxation sounds' cd from the gas station? I don't even own a cd player!!!!!!"

I'd rather skip the day entirely and get, oh I dunno, pay that equals what men (both with kids and without) and women without children make. Or maybe I'd just like to be treated like I am competent at my job as I actually am, instead of being assumed to be shitty because my uterus once grew an alien baby. Or maybe child support that actually covers have the cost of raising a child and is collected in a timely fashion instead of 70 percent of cases having arrears on them. Or maybe affordable daycare, though I am long past the point of needing it, but I am generous and remember how hard it was to pay both rent and daycare. Or maybe enough paid days off per year so that I didn't feel like I was constantly on the verge of burnout/failure.Or maybe affordable college tuition so I know the Kid can get an education. Or maybe an improved job market so I won't have to support him till he's 30. Or maybe a guarantee that the only thing between my ladybits and my doctor is a speculum and not a fucking gaggle of anti-choice, woman-hating fucknuggets. Or maybe universal healthcare plus dental since my healthcare costs for this year alone are close to 25% of my income.

Or maybe what I really want is the lip service about the hard jobs that mothers do cut the fuck out in recognition of the actual jobs mothers do.

Raising a kid to an adult benefits society way more than it benefits me. Yep, I love the Kid more than I love sex and cigarettes and cinnamon whiskey(and fuck me I love all those things hard ) but he's gonna grow up to work and pay taxes and contribute more to society than all the fuzzy Halmark moments could possibly add up to. And that's if he's just your average TAB, white, cis, het male. (Not that kids who are not those things aren't equal contributors. But except for poverty, Kid won the privilege lottery).

So once again, what I really want for Mother's Day is for mothers to be given the tools to do the job we have agreed to take on for society's sake. Society needs kids to grow up and do the work of supporting the generation before and after. So society should make sure that those of us who are mothers now have the tools to support the generation before and after.

Keep the fucking cards and drugstore bath products. (But hand over the booze). I don't give a flying fuck about the platitudes.

*Kid is soooo not an asshole, obvs. He's helpful and grateful and sweet. I don't need him to put on a show one day of the year to make up for being an asshole the rest of the year. Though I did see this thing on the interwebs about how to make a stuffed squirrel from a lonely winter glove. I did request a Kid make me a squirrel. Will it happen? Prolly not. But it was cute. We're spending Mother's Day, or the day before Mother's Day, resuming our picnic tradition. The grown-ups will be smuggling cocktails in water bottles. Tasty foods will be eaten. And apparently this year there will be croquet. We call it Drunknic. And this will be the first year since I went to awful Florida that we've been able to do it. And Kid made cookies.

Sunday, May 06, 2012

That was a helluva breakfast

So it turns out that a breakfast of muscle relaxers, neurontin, and advil means I actually can do more shit than just lay on the couch in pain. I built a closet organizer and did some massive cleaning. Now I am waiting on the always fashionably late Sylviaaaaa to come over and watch movies. So you all get to hear one of my favorite songs ever. I've been listening to funk all day long and in the bestest of moods.