so i've been posting on my twitter page about wanting guest bloggers to share their experiences, and along came erin. our initial conversation was about keeping lint out of my natural hair; it was just a coincidence that we both have fibromyalgia. here's her story:
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as a guest blogger, i feel like i have to watch my colorful language as i try to describe the joys of fibromyalgia. for anyone who doesn't know, sometimes all the profanity in the world does not help.
it's an invisible, torturous, all consuming pain in the ass. when my symptoms first started to interfere with my daily life, i swore i was losing my mind. i couldn't explain how, all of a sudden, everything hurt. some days, it's just between my shoulder blades and the tops of my shoulders. there are nights when my legs feel like i've run an ultra-marathon. at times, i feel like a goddamn elephant is sitting on top of my head getting a piggy back as i try not to have a meltdown at my desk. i'm not in pain because i am depressed; but there are times where i am utterly depressed from the pain.
me, the life of the party. the girl who works two jobs and goes to school and parties all weekend and volunteers and blah blah blah; that same me can sometimes be found in the bathroom at work, hands on the counter staring in the mirror and wishing that the ground would come up and swallow me whole so that i can get some peace for a change.
yes, i'm glad i finally have a diagnosis. there's actually a name for the BS that i'm going through-- which means, i'm not crazy, i'm not "just tired/achy/irritable/exaggerating." there are other people who go through the exact same thing, and sometimes, there are things that may help.
i went to an acupuncturist the other day, only for him to tell me that i have fibromyalgia because i "think" i have it. and the minute i stop "thinking" it, it will go away and life will go back to normal. *head starts to swell from instant defensive angry reaction to this ignorance*
ok, so my hands will stop swelling? the chronic fatigue will magically cease? i will be able to go back to the gym without nearly dying? i can detangle my curly hair by myself without bursting into tears of pain and frustration? GREAT! thanks bud!
enough of my sarcastic rant ... there are days when i feel like all i do is complain-- which i absolutely hate. i hate listening to other people bitch and moan and i certainly do not enjoy hearing myself do it either. but because fibromyalgia is so invisible.. i feel that if i don't complain, nobody will know that i am legitimately in agony. those who know me see it in my eyes. but i hide it well, most days on purpose.
sometimes, another flight of stairs will mean i am going to pay for them for a week. at times, i'm silently staring at my 6inch stilettos because the vain me knows that i absolutely cannot go out on the town in flats. the other me knows that i will feel like i am wearing daggers up through my legs for four hours, and puts the shoes i so desperately love back on the shelf. lest i spend three days walking on tiptoes and praying for a miracle. or the zombie apocalypse. anything to make it stop.
i know i have not "accepted" my fibromyalgia. i have not come to terms with pacing myself. i don't feel ready to pace myself. i'm 21 years old! i want to be able to strut my stuff in my fabulous shoes, and i'm not ready to give that up. i miss the me that wasn't in pain.. but i'm finding her hard to remember.
phew! all this typing has my fingers burning. no joke, i think i need to go lay down. and i f@$#ing hate it!
as we say on twitter, #thatisall.
ps - for those who don't have fibromyalgia: i'm having a flare today; right now. most days, i am the sweetest, most optimistic girl you'd ever want to meet! *cheesy grin*
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