A Spoonie’s Guide to Living in Pain 24/7: yes we know it sucks
While sometimes you will wake up from a dead sleep in the middle
Of the night, from pain, and think to yourself what did I do
To deserve this, you’ll have to tell yourself, no it’s okay, no I don’t actually
Deserve to hurt with each breath, with each motion and twist
And you don’t even have to believe it, just know it’s the truth. It’s true.
And while it may take time and years of pain and sweat and flare ups
And tears, you can’t hide from the truth. But you can’t hide
From pain either though. So you just have to keep living
Not being able to get up off the floor can be an interesting metaphor,
But really it just sucks a whole bunch.
And it’s humiliating and stupid and leaves you with the thought that
This is your life and you’ve gotten so bad that you can’t even
Stand up without help. And while being left with your thoughts is always
Fun, you’re still trapped on the floor by the body that was supposed
To be yours, supposed to bring something that helps rather than works against
You. I don’t know when I started seeing my body as a prison, a trap, a curse
In disguise. But I wish I could go back to when I still had enough energy
To drag myself off the floor and walk away from the fear of what I am now.
Eventually, you will either get up off the floor, whether you drag yourself tooth and nail towards a chair or your cane or a counter or anything, or someone comes to find you.
Or you stay on the floor, for just a bit longer;
Either way you have to keep living with yourself.
It’s okay to cry from the pain.
I know that it hurts and that its horrible to live like this and this guide doesn’t help with the reality
That being in pain every waking hour sucks so so much. But
You don’t deserve this and neither do I and neither does anyone. But
That thought doesn’t really help anything by itself, does it?
So it’s okay to cry; it’s okay, just
Do not punish yourself for simply existing.
It is not your purpose to
Educate everyone who decides to interrogate you about why
You have a mobility device, why
You are tired every waking hour and not sleeping and why
You are crying from how much it hurts, god why does it hurt, please just make it stop;
Physical therapy is what I hate the most about having chronic pain because it shows me
Just how much I can’t do anymore, how far I am away from the average
Person’s stability and strength, how I fail at the simplest of actions and
It hurts so much. I’m not sure if the soreness afterwards that lasts for hours
And hours even with ice packs eating away the pain, or the shame of knowing
That I have so far to go, to even be considered improving, is worse.
My PT is unchanging and uncompromising, intelligent and kind enough
To know when to stop me from pushing myself too far, too hard, too fast to deal with the
Shame of not being enough for myself; I’m still not quite sure I’m glad he stops me from hurting myself
Or not. But when I look back at how far I’ve come since I started physical therapy, how good it felt to stop failing at the simplest tasks, I think
That while I maybe will never be at the level I want to be at,
Trying to get there will be a battle I will always be willing to fight, if only to deal with the shame of failing myself
And my useless expectations.
I laid down in the back of my car the other day, in the pile of blankets and pillows I keep there for this exact reason, and I thought about how it was possible
To feel limitless and so very old at the same exact time, how it felt
To be a walking contradiction of a young face and an old body that’s already given up, and I think,
Maybe, if I was from the beginning going to be a practical joke made
By the universe, someone made from the irony of having a body that was already broken from the day I was born, the only way to deal with this is
To prank the universe right on back, and live out of spite and pain and happiness
To at least be alive and kicking in the first place.
