Fibromyalgia Awareness Day!

[beanside]

So, I've been told that today is the day to make people aware of fibromyalgia.


Hmmmm...That's a tough one for me, as I don't have fibro. (just kidding Jess)

Oh wait, I do. Apparently, it's fairly common for people with my fucked up spinal column to have fibro. They think the way the cord is compressed causes your nerves to react oddly to stimulus, which then causes pain--sometimes with just a brush of a fingertip against skin. It also causes chronic tiredness, though when you have any type of chronic pain, I think that's a given. There's just no way that you can be energetic and perky when you spend all your waking hours with a constant, low to mid level nagging, grinding pain in your spine.

That's my baseline. I would usually rank it at about a 5 out of 10. I can function normally until it hits 7/10.

But fibro means that when someone lays a companionable hand on my back, I fight to not flinch in pain. When I'm in a crowd, it means feeling buffeted by the different voices, the sounds overlapping until it makes me want to scream. It means not planning more than one or two things to do on any given weekend day (and forget about workdays!) to avoid spending the next day in bed feeling like I was hit by a truck.

It means taking drugs that most addicts would kill for, just for the privilege of being able to pass as 'normal.' It means never being able to do 'spur of the moment' things, because outings must be planned and packed for like Hannibal crossing the Alps.

It means shame. I use a cane. Sometimes, I use a motorized shopping cart. Sometimes, I use my handicapped parking pass. It means having people refuse to talk to you, like it's your mind that's broken instead of your body. It means hearing people say things like 'fat is not a disability.'

So, I guess I'm pretty aware of my fibro. I know it, I loathe it, I deny it as much as I can.

Comments

[poisontaster]

♥

[justsonya.livejournal.com]

*hugs and loves*

[atypia.livejournal.com]

<3 I so hear you on the shame thing.

[jdsgirlbev.livejournal.com]

I know it's true,people are made to be ashamed... but I've never been able to figure out why someone should be made to be ashamed of having a disease!*shakes head*

Until I started reading your posts I had no IDEA that THIS is what Fibromialga was like.

if we can't treat it, it's imaginary

[auroramama]

On medical ignorance and the compulsion to deny its subject's existence:

My Girl thought she had CFS - the symptoms matched - and of course couldn't get Medicaid for it. When we found out it was metastatic breast cancer, the symptoms still matched, but it was easier to get Medicaid, and there were treatments that helped, for a while. I try never to forget that many disabilities are invisible and that medical ignorance doesn't make illness less real.

Thank you for your testimony. I'll keep it in mind.

[flinchflower.livejournal.com]

I am the daughter of a SKINNY woman who suffers from Reflex Sympathetic Dystrophy Syndrome, which I know the fibromyalgia pain is a kissing cousin to. I'm 36, I wear my mothers sexy jeans from when SHE was 36, and I suffer from Marfan syndrome, which brings a unique pain of it's own to the forefront. Pain knows no boundaries, pain knows no limits, it doesn't matter if you're fat or skinny or purple polka dotted or white, if you're from the USA or Naruru. What matters is the soul that lives inside of that body. I am so appreciative of what you have given the world in your writing. When I am struggling to write, myself, I go back to reading your fics. Sometimes they make me stop, go away from my laptop, and sob helplessly, because I want so badly for myself the sort of wonder that you portray in them. So, thank you. It's not your mind that's broken, it's just your body and it's own individual bizzareness - I understand - I hate the high pain days having to lay down and rest instead of taking care of the house, and working on grad school, and writing, and being a carefree person - and YOUR writing makes those days easier. Thank you.