Not Today Satan ….

well, maybe today… .possibly tomorrow. I just have to hold on until Friday. Then I have my infusion treatment which, pray to the sweet baby Jesus in a manger, continues to work. It has to work.

Thing is- I have learned to play nice with my demons from years past. Hell, sometimes I’ll even trot them out with friends when we’re drinking and we need a funny story “remember when my ex….” only, its funny now … wasn’t so funny then. My demons have been reduced to furbies that are only a little scary if you stare at them in the middle of the night and they start to talk without any prompts. But they have invited along new friends – that are bigger, angrier and have toothier. And don’t seem to care that no matter how hard I fight, they’ll continue to pound on the door to get in and force me to give up. But I can’t give up. Because where does that leave me? Still in pain, but reduced to a puddle of human rocking back and forth on my bed hiding in a blanket fort.

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I read these blogs of others with similar struggles- those with chronic pain, fibromyalgia, and other autoimmune disorders that only if you too are a survivor, only then can you truly understand what its like. And many of them say they can spend days in bed during a flare. And I wonder, what do you do? Do you have a job that allows you to spend days in bed? Are you a self employed person? Do you work from home? Or are you on disability? I cannot spend days in bed. I’m lucky if I get to spend my days off in bed. I have to drag my ass to work, put on a happy face, and try not to kill anyone around me.

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It’s soul crushing having this disorder. The new not friendly demons continuously bang at the door wanting to bring friends like anxiety (cause I don’t have enough of it already) depression (get the fuck away from me with that shit, I don’t have the time nor the inclination) guilt (I have moments of feeling guilt with this – when I don’t cook dinner, or cancel on friends, or can’t pull my weight at work, or do spend a day in bed just reading and cuddling with Jack). Those toothy demons also sometimes bring around anger. No, ok, fine always anger. Anger and I seem to be bedmates. I’m angry at this disorder trying to take over my life. I’m angry at not being able to do laundry, and grocery shop and vacuum and walk the dog all in the same day, then go to bed and wake up the next day and not feel like I’d been run over by a Mack truck then backed over by a zamboni.

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I have dabbled with the idea of seeing a therapist. The pain clinic at Duke has me meet with one once a month to see “where I am” as far as the treatment plan and self care plan they have me on. Where I am? I’m pissed off. Always. The stretches that are supposed to help, hurt. And they don’t get better. The meds that are supposed to help me sleep – don’t. They just make me gain weight. Most likely from lack of sleep. I use up most of my spoons before I even go to work lately. Not familiar with the spoon theory? There’s a helpful link. When you, dear reader, are most likely a normal functioning adult human who doesn’t have a chronic illness (I know some of you do have one and I ache for you) you don’t think about the steps it takes to get out of bed, go to the bathroom, take the dog out, shower and get dressed…. that just cost me about 6-8 spoons. On a good day.

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Thing is, I have seen a therapist once before- right after my divorce- and she flayed me open and left me exposed and didn’t give me the tools to sew myself back up. So I’m quite wary about the whole practice of psychology. Yes, based off that one experience- I didn’t want to go to her in the first place but I agreed per my boss at the time. And I don’t like talking about myself. Shocking I know coming from a person with a blog. Here, in blogosphere, it’s fine. Because I can’t see your lovely faces and I’m not expecting feedback. But as people get to know me, and my bastard demon, they get that look on their face, and they always ask “how are you feeling?” and I always take a beat and ask myself, do they really want to know, or are they asking to be polite? so I answer ” I’m ok” or “I’m upright today” or sardonically, “I’m alive”. Do they really want to hear how my spine feels like its been made from molten lava? How I’ve never been shot before but I can imagine the pain as my hip feels like the fiery blast of a bullet just exploded there? Always? Or how today its the left side of my body that’s decided it wants to go numb and have that cold depressed feeling you get after a body part falls asleep? but from shoulder down, and through the knee? Or how where I broke my nose 14 years ago, I can still feel the bone ache? How my feet tingle and burn if I forget to take my B12 vitamin? How the L5 in my back screams if I stand too long, but if I sit, its just as painful? How my skin itches the moment I get out of the shower, so I put lotion on, only to have to do it again a couple hours later even though the bottle promises 24 hour moisture? How if you stand close enough to me, you can physically feel the inflammation my body is giving off despite the medication I’m on to slow and stop the inflammation? How my fingers always feel swollen now, (they’re not) and I can’t make a proper fist, and the way I hold a pen is not how I was taught to hold a pen because I can’t grip properly because of the sensation of swollen fingers?

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Its awesome really. If this hasn’t taught me anything else it has taught me patience. Not with myself because I remember me before this pile of crap got heaped upon me and there’s a irrational part of my brain that continues to think its temporary, that one day I’ll wake up and it’ll be over. Some magical medicinal unicorn will have visited me in my sleep and heal me. I remember that I could go for hours on my feet without needing a break and be whatever you needed. Handyman? got it. Cleaning girl? on it. muck stalls? got that too. Now, I can’t even walk across the store without feeling the need to lean on a counter and silently scream in pain. What have I become?

It has taught me patience with others though. Not those that get the sniffles and feel like the world is ending. No, take a Zyrtec and suck it up buttercup. But those that have daily struggles like mine. Which, yes, a rational person would say “well, if you can find the patience for them, can’t you find it for yourself?” You would think so. And I’m working on it. Progress is slow.

In other completely unrelated news, I binge on Netflix so I’ve waited a long time for Grey’s Anatomy to load season 13. and I’m binging the shit out of that. And all the boys are still so very pretty. Here’s to my favorite. He so deserves better than he’s gotten so far.



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