macabrekawaii:

Something that goes with chronic pain & autoimmune disorder that people don’t really talk about is how overwhelmingly aware you are that yr meat sack is slowly dying around you and that you are damaged and flawed and someday going to cease working entirely. You feel yr joints all the time. You know exactly where yr bones grind into one another. You lie down and try and get comfortable but you can feel the way the muscles in yr legs just don’t work right. That yr skin feels too hot, too hot all the time. Or suddenly too cold, for no reason. There’s a constant awareness at all times just how constrained you are by yr physical form. Want to dance!? Too bad, the meat ship yr consciousness inhabits isn’t working well enough today. Tired and want to sleep? Whoops the medicine you need to put into the other flesh and chemicals that comprise you makes you anxious, unable to rest. And it wears you down. It’s every moment of every day. Even the best days, the very best of the best days, yr only 80% of a healthy person. So you try and give 110% just to get by. You give 200% for something that really matters to make it count and make it perfect. And then you crash. You collapse, maybe not literally— but sometimes literally— and it can take weeks, god forbid even, months, to get back to that 80% you yearn for so much.

And you try and imagine what life must be like if you don’t feel yr heart thumping in yr chest you don’t have to count the breaths in and out you don’t have to writhe in pain before laying down to sleep you don’t have to weigh yr options between going outside a bit and feeling okay for longer. You wonder what it must be like to simply think about who you are, or what you want to eat for lunch, or the nice thing you want to get yr partner for their birthday. You do not know how this feels. All you know is the pain and the uncertainty that tomorrow might not always be better. Optimism is great. Hope is a balm. It can and will carry you far.

But when yr chest aches from exhaustion, from yr heart straining to meet the demands of yr body, from yr body being in so much pain for so long yr spiraling stressed, it’s hard not to think just how close you are, all the time, every day, to when whatever cascade of cellular frailty keeps you afloat, how close you are to when it all house of cards collapses.

Yr always right there. And it’s exhausting.

ohthebrave:

It doesn’t happen like that. You don’t just wake up one day and find that everything has worked itself out. You must get out of bed, morning after morning, and make a conscious effort to control the circumstances of that given day. You must learn to handle your issues with grace because you respect what they are attempting to teach you. You must drown your insecurities slowly, one self-realization at a time. You must allow yourself to feel the fear bubbling just beneath your skin but you must never allow it the satisfaction of crippling you; grit your teeth and march on. You see, they never tell you how hard these things will be. This fight to reclaim yourself is not easy or straightforward but, my god, is it necessary.