I don’t talk about it much on this site, because this is a Style site, rather than a personal blog… but because it affects me everyday (some days more than others), lupus is a deeply personal issue for me, and sometimes I have to talk about it.
This is what lupus looks like:
For the last couple of months, I’ve been fighting back spasms in my spine near my neck, between my shoulder blades and lower back just above the glutes. Some days, the pain is bearable, others really NOT–it can range from so-so to oh-my-god-you-can’t-even-touch-my-hand-it-feels-like-you-took-a-bat-to-my-back. It’s the kind of pain that makes you forget things. It’s the kind of pain that makes you want to slouch everywhere you go, while you sit, while you walk, while you huddle in your car almost crying and biting your lip and praying to God, the Universe, Buddha, Allah, your left shoe, that they’ll just turn off the burning flower of pain blossoming in your spinal column and radiating outward like a dying star, pulverizing all tissue in a massive, fiery death march.
Today and yesterday were those kinds of days.
My brain shut off the moment my lupus decided to go into attack mode. And I’ve been in a state of bed-rest since about 8PM last night, and only got out of bed around 8PM today to eat dinner and try to spend a little time with my husband over re-runs of Community we’re streaming from our Boxee server.
Lupus can really get a girl down sometimes. Sometimes.
But then again, a day spent home sick in bed can be liberating. I’m not constantly on the computer or on my iPhone while I take pee breaks from my data/proposal work at the office. I’m not worrying about money, because I check my bank balance once a day and then immediately have a panic attack because I’m over spending on things that supposedly make me happy and then I’m in over my head after I get the items and realize the happiness was only imagined while I was throwing them into my shopping cart on their shop’s online store. I’m not worrying about what to make for dinner, because a girl can’t cook while she’s lying in pain in bed, when even the heroic act of trying to get out of bed only brings severe muscle trauma or what she’d imagine the feeling to be. I’m not worrying too much about whether the dog is occupied, because, let’s face it, if a dog’s precious mummy is lying down, he’s going to be doing the same thing, too. Like mum, like son, right? There’s no laundry that is so urgent it has to be folded right now because, well, who honestly needs a pair of drawers to be folded perfectly, when it’s only going to lose that perfectly folded shape the moment it is pulled hastily from the drawer in the frantic morning rush of needing to be at the office on time? Yeah, so I don’t need to worry about that pile on the couch and dining room table. Maybe if I’m feeling a bit better this afternoon, and those steroids and anti-inflammatories I popped earlier start to kick in, but not right now.
And hey, while I’m not worrying about all those other things, I’m not worrying about my blog traffic, or whether I’m writing enough for that wonderful style news social network I’m writing for, or whether I got enough posts out on thereafterish., or whether people care about me because I haven’t Tweeted anything in over 9 hours, and whether people notice my absence from the interwebz, or whether I’m reading enough fashion, design, beauty, health news to stay ahead of the game and blahdiblahdiblahdiblah. Blah humblog.
Instead, I’m exchanging loving text messages with my husband, who somehow has managed to contact me more today than in a normal day, because instead of being at the office where I’m distracted by doing actual work, and therefore cannot email him, and he the same, he’s worried about my well-being and wants to text me little notes to let me know he cares and that he’s worried and wants to take care of me more than he usually does (which is a lot!).
So, despite wanting to writhe in bed in pain and self-loathing and pity and all that good stuff that people do when they’re being sorry for themselves and miserable, I really can’t indulge in it, because 1.) actual writhing would require me to move, which would result in me screaming and more necessary pill-popping, and 2.) I’m not totally feeling miserable and sorry for myself. I’m getting to catch up on sleep I usually don’t get until Saturday night, my husband is getting all schmoopy and lovey on me via texts–and a girl cannot complain about that, and I’m feeling slightly liberated without being tied to all this internetty stuff and the worries that come along with that. Also, I get to lie down on the couch after having done a couple of things around the house, like lazily walking the dog as slow as possible so as not to hurt myself, and putting away the dishes as slowly as possible so as not to hurt myself by bending down to put away that pot or that cutting board or pulling a back muscle while I reach up to put away that bowl, and watch TV and pretend that I’m some rich, spoiled housewife who gets to stay home all day, eating grapes and letting the a/c run. And I did need to re-watch that last episode of Glee and the most recent episode of Drop Dead Diva again, anyway. It’s been on my to-do list.
See, there are upsides to having a shitty, painful disease. Today was full of them.
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