Monday, May 12, 2014

Monday Musings: Fibromyalgia Awareness Day


Who you are, deep inside, doesn't stop just because you're sick. But sometimes you have to put away the play until you feel well enough to do it again. Not such a big deal when all you have is a cold, and you know you'll get better at some point. But what happens when you're chronically ill? You're not getting better. You feel weird/pained/fatigued/etc. all the time. Your body isn't your own anymore.

I have two conditions that are my primary diagnoses, and Fibromyalgia is one of them. I got diagnosed when I was 15, and it changed my life.

https://www.facebook.com/fibromyalgiastories13


I had the flu. Cough, congestion, aches, pains, fatigue. I started to get better, sort of. But I was so tired, I slept for 16-18 hours per day, every day. I never felt rested. I hurt everywhere. Nothing helped. 

Four months, ten doctors, and one rheumatologist later, and we finally had it. A diagnosis of some kind. Fibromyalgia. Now we knew what was wrong. Sadly, at that time (and even still, with certain doctors), most doctors didn't "believe in" Fibromyalgia. It was all in my head. I needed to lose weight. I was too young. I was too old. I should exercise more. I was faking it. I couldn't possibly be in pain all the time. I looked fine.

I looked fine. Well, if you didn't count the grimace from the pain, or that I moved quite slowly because it hurt so much, my body didn't seem any the worse for wear. But if you don't have visible wounds, or at least a more visible experience, then it's hard to believe what happens beneath the surface of your skin.

To me, it's like saying pins-and-needles aren't real because you can't see them. I mean, you look at the person, and their limb seems just fine! But to them, it is a very real sensation, a real experience. Only with a chronic illness, it never ends, though it may be better or worse depending on the day.

I have learned to manage my condition over the years. I walk and swim for exercise, I take certain vitamins to promote health and well-being, and I try to avoid stress, which can make Fibro flare with a vengeance. Am I always in pain? Well, yes. But I try not to let it define my life any more than I have to. If I can work through it, I do. If I can't, I give myself a break because beating myself up about it (haha!) isn't going to help.

Being kinky whilst dealing with a condition which, by its nature, causes pain, is definitely an experience. And in many Fibro support groups, you'll face some judgement. You're in pain already, why would you volunteer for more?

My nature is quite submissive, though with a lot of sass and humor. I just had to get used to my own limitations and how that would change my forms of play. I can still play with rope, I can still be at my Dom's feet (though perhaps not kneeling, I'm on the floor all the same), and I can still take a spanking.

Erotic play and erotic pain work for me. I get an endorphin rush from it, and that helps me manage the rest of my pain. I have to spend some extra time warming up for something like a spanking, or with a bit more pain involved, but I can do it most days.

And on the days I can't...I remember that, kinky or vanilla, I'm still human, and there are plenty of ways to fuck with my mind, even if my body's uncooperative. So there's always that. 

3 comments:

T. Strange said...

It's amazing how many people--even kinky people--don't seem to understand that there are many, many different kinds of pain.

Dena Celeste said...

Yep! It's amazing, but I just try to stick with folks who like me the way I am. :) Plus, at least most kinksters understand how purposeful pain might = endorphins, and that is a pain relief of its own. ^_^

kold_kadavr_ flatliner said...

'No, not one soul will perish
who puts their trust in Me'
-Jesus