If only you knew just how tired I am of fighting. Of taking handfuls of medications day in and day out. Being poked and prodded.
If only you knew how many needles and catheters I have placed in my spine. Heck, I don’t even know!
If only you knew what it is like to receive 30 trigger point injections in the back every three weeks just to be able to move. It helps the pain some, but not much.
If only you knew I push myself to take nasty medications and endure more pain to try and eliminate pain. Most of the time, the medications don’t even work and then I have to take more medications to deal with the side effects.
If only you knew how painful it is to have highly potent medications surging through and frying your veins for weeks at a time.
If only you knew how hard it is to just get a 24 gauge needle into my shrunken veins. They can’t even use adult sized needles on me.
If only you knew what it is like to have 23, soon to be 24 hospitalizations in less than two years.
If only you knew just how much I would like to see what “normal” is, if only for an hour.
If only you knew how I much I wish I could escape from my shattered body, as I look back on the days when pain wasn’t forever. I wish I could go back to my former self. The girl that didn’t have to worry about the consequences of doing everyday tasks or hanging out with friends. The girl that could run like the wind whenever she pleased and dreamed of being a great basketball player. The girl who didn’t have to watch her hair fall out in clumps and who didn’t have to hear the small screams of children or the shocked eyes of doctors and nurses when her legs turned
So the next time you volunteer to take my pain from me, please remember this. My pain is like nothing you could ever possibly imagine. Because I know this, I’d never let you take this pain. Not even for five minutes. No one could last a lifetime in this body. A lifetime of fear of what is going to malfunction next because something is always malfunctioning. I scream on this rollercoaster of pain that no one can seem to get me off. The emergency brakes have long since broke. Even if you think you could bear it, I’m here to tell you that you can’t, because truly even the people with the disease can’t stand it. No one can. If only you knew what hides behind this smile.