fibro bits

(Originally posted at BABble.)

The following article came up under the feed i’d set up for a google search for “fibromyalgia”: Cyberbullies ‘just want to be mean’. Um. Wait, what? How are these two things related? So i made the mistake of clicking on the link. Le sigh. WHEN WILL I LEARN?! Apparently never.

After being diagnosed with fibromyalgia, Phyllis knew she would have to find another way to experience the world.

I personally hate these sorts of articles, the “local chronic pain patient’s personal story as source of inspiration/schadenfreude”, where they turn someone’s life into a fucking after-school special. Oh, and the “find another way to experience the world” line pissed me right the hell off, because they’re not talking about introspection, re-evaluation of priorities, or learning to appreciate the flowers. Oh, no: they’re talking about escapism.

So she logged on to Second Life, a 3-D virtual community, and created an avatar. She walked down golden streets, admired oceans and beaches and made new friends. She even bought a beautiful ball gown so she could dance again, something she couldn’t do in her real life with the crushing pain in her joints and muscles.

Okay, here’s where i admit that i can be rather harsh with certain perspectives. I am all about making sure that one’s health issues are adequately taken care of, which includes keeping track of one’s spoon supply. If doctors are no good, i am all about taking my own health into my own hands, and doing what i can to improve my quality of life. I am responsible for my own health and happiness.

I cannot support her sort of escapism. Having a chronic pain condition does not mean that i can no longer live my life. Sure, my life will look very different than that of most folks, but i’m not interested in letting my personhood be defined by my pain – physically or emotionally.

Three weeks into her virtual haven, the bullies descended.

“Are you a Christian?” one asked her. “Yes,” she said.

They sneered. They called her names. They pushed her down. Somehow, they obtained her personal information, threatened to come to her Hazel Green home and unleashed viruses on her computer.

So far, i have no reason to believe that fibromyalgia has anything really to do with this article, other than to serve as an excuse for her foray into online gaming. Because you can’t play games if you’re an adult…? In any case, the religious fighting that goes on online is nothing new – it occurs in every online medium i’ve ever taken part of. It’s more likely they’re targeting her because of that, not because of her having fibromyalgia. But yanno, let’s just pretend that sort of thing doesn’t happen and jump right back into the whole escapism thing:

She signed up for a free account on Second Life and created her avatar, a slender blonde with Barbie-like proportions and cascading curls.

*twitch*

Okay, maybe it’s just that i’m hormonal, or that it’s cold in here, or that i’m hungry… whatever the underlying cause of my current snarky/crankybits, i’d be tempted to mess with her. I wouldn’t, mind you. But i’d be lying if i said the temptation wasn’t there.

Phyllis often wakes up in the middle of the night with excruciating pain. She had to find something – anything – to take her mind off the pain.

Second Life isn’t just an escape, she said. It’s a part of her life now.

“I hardly have the energy to walk from one room to the other some days,” she said. “That’s why I try to keep my mind occupied.”

Just so you know? I didn’t skip all that much; this article really does jump around like a cricket on Red Bull.

Maybe part of the reason that quoted bit irritates the hell out of me is because i’ve been there? Maybe this is ties in with the old adage “the things we hate most about other people are the things we hate most about ourselves”? I’m willing to accept that. My pain wakes me up every night, every morning. Yes, i have used different games as forms of temporary escape – and i think back to those times and recognize that i was miserable underneath it all. Now i still play some of those games, but i do it for fun – not as a means of pretending my problems don’t exist.

So the story goes on about how she’s being griefed by these “cyberbullies”: everything from computer viruses to harassing phone calls, threats that they know where she lives, etc. And of course, the wrap-up of the article goes for the gold:

It’s hard, she said, but she can’t stop now. She needs to know who these people are, and she wants to know what they’re plotting next, if anything.

And the only way to do that is to keep signing on, and to keep hoping that today they’ll have something better to do.

“I don’t know what else they would do to me,” she said. “They’ve got everything.

“I’m going to die anyway, so I’m not afraid. Right now, I’m just waiting it out.”

*blink*

Has anyone told her that fibromyalgia is non-fatal? Pain in the ass yes, going to kill you no. Tear down your quality of life so you might want to speed up the process of death, only as much as you choose. It’s not like fibromyalgics have some sort of corner on the death market. Newsflash: we’re ALL going to die anyway.

The minute someone tells me they’re just “waiting out” their life? That’s the minute i’m less inclined to feel sorry for them and more inclined to tell them to fuck off. You want to be happy? Then fucking damn well DO IT. No, you may not have the same kind of life you had when you were a teenager – but let me clue you in to something: no one does. The closest parallel i can think of is the sad chap who was the star quarterback in high school and now the only thing that makes him less than miserable is watching football games.

Therapy exists for a reason, people.

(Originally posted at BABble.)

I saw the quote in the title over in the comments thread in one of Kate’s posts over at Shakesville.

I am fat. Having someone try to make me anorexic when i was 4 or 5 pretty much guaranteed that i’d have weight issues my entire life. That sort of metabolism-fucking at such an early age causes all sorts of health issues.

I am also sick. The symptoms of endometriosis started within a year of my first period (which happened when i was 13). They got worse and worse. My first surgery was when i was 19. The fibromyalgia symptoms started when i was 18. It started with inexplicable tendinitis in all of my toes. Next were the mysterious backaches that plague me to this day: they wake me up in the middle of the night, so painful that it hurts to breath. I woke up with one of those this morning, and will probably have one tomorrow and the day after. Almost every day, since i was a teenager. I will be 31 in a few weeks. You do the math.

My chiropractor is the only reason i am able to walk on a regular basis. Several years ago, i had to call in sick to work because i got up out of bed and my legs collapsed under me. I once had a twelve-day migraine because the vertebrae in my neck decided to twist and turn in a way that was impairing the flow of oxygen to my brain.

Some people have tried to say that i simply have no pain tolerance. To them i respond: when you can sit in the dentist’s chair and not require Novocaine, you let me know. Until then, STFU and get the hell off my damn lawn.

I am not lazy. As a child, i was more sedentary than my brother (who lived for soccer practice), but i was still active. I used to ride my bike all over Chicago. I rode my bike to and from school – 16 miles round trip. Occasionally, i walked home from school – 8 miles. It wasn’t like i’d spent all my bus fare on choccies and chips: i rode my bike and walked because i wanted to. I had adequate reason to be an angry child, and whenever i was angry (which was often), i would get on my bike to blow off the steam.

So in the narrow-minded notion of “fat = sick or lazy”, it’s because i’m sick. Does that give me a “Get Out Of Fat Free” card? Does that mean if i wear a hat with a blinking neon sign that says “Fat Due To Sick”, people will stop looking at me as if i had no right to exist? Does that mean i’m suddenly worthy of respect?

For that matter: why is there shame associated with being sick? As if it’s a fucking choice? I chose this? Who in their right mind would choose this? For that matter, why on earth should i be ashamed? If anything, the amount of pain i put up with on a daily basis without giving in to it is something people have admired in the past. I would tell you to walk a mile in my shoes, but if you were in my shoes you wouldn’t be able to handle the pain that comes with that mile.

I’m not on drugs, i don’t drink, and i haven’t killed myself. I’ve considered all of the above as viable means of escaping this pain in the past, but not anymore. I like who i am, fat and pain and all. I am a good person who rescues stray cats and dogs. I am a loving and supportive wife. I am a good daughter. I hold down a regular 8-5 job, 5 days a week. I am a responsible member of society who pays her bills and taxes, does not participate in illegal acts, bathes regularly, has healthy relationships with friends and family, and i do NOT deserve your arrogant scorn or your condescending pity.

If anything, people who feel this way about me are the ones to be scorned and pitied for taking their mobility and freedom from pain for granted.

I am fat. I am sick. Neither of them are a valid excuse for treating me as less than human.