Sometimes it's like I can feel it in my bones. I don't know where the nerve endings actually are—whether they're at all close to my calcified tissue—but the pain in those minutes, hours, days, is so deep it hurts to exist.
I feel it most often in my legs. Sometimes it seeps into my hips. Often, I'll have the instinct to shift and stretch in pursuit of relief, but it doesn't help. It's not that my legs are restless, after all; they just hurt. And moving sometimes is more trouble than it's worth, bringing with it an ache in my ankles my ankles—a sharp, unexplained pinch at the joint.
But I still move, because I must do something.
Then there's the muscle tension. It aches throughout my body, from feet to calves to hamstrings to glutes—all the way up my back to the top of my neck. I feel it everywhere, in the muscles I don't have the names for and those that I do. It's long been most noticeable in my mid-to-upper back—a deep and dull soreness that's also somehow sharp and stinging.
This pain is always on my mind when present, though I hardly let on. I will be in the middle of a conversation, keeping up, thinking of the pain in my back. "I've been reading this really great book," someone says. Pain. "Oh yeah? Which one?" I ask. Pain. Or, "Sarah, can you do this thing by the end of the week?" Pain. "Yeah, absolutely," with a smile. Pain pain pain.
Though it's been around for a couple of decades now, the pain has recently increased its reach. The tension, tight, inches lower than it used to, stretching now to meet my glutes and surrounding muscles in what feels like a painful tug of war. When I have internal inflammation or distention—as I often do—it pulls (or pushes, I'm not sure) on my lower back, which then pulls on lower muscles. And oh wow it hurts.
And this is all tied up with the burning, tingling, stinging sensation of the nerves pinching. Beginning in my glute—or is it my hip?—the pain extends down the outside of the back of my leg. At times it's so much I want to cry. Sometimes I do. I'll bend my knee and pull it toward my chest in hopes it will release somehow. I'll massage the muscles that ache the sharpest. I'll apply Biofreeze liberally. To no avail. I end up with a strained, overused feeling from the stretching and a bruise from the pressure.
The burning also happens in my left arm. Shooting down the tricep, I'll sometimes feel the numbness in my forearm and pinky. Sometimes an ache there. But the burning is the worst part. And where does it come from? Is it in my underarm, where I can feel the muscles tightly bound together? Or in the back of my shoulder, where there's a sharpness that doesn't seem to ease until I've been lying flat for awhile. And even then, the burning is often still there. Once or twice, the sensation extended up into my neck—and those muscles are certainly a mess—but I can't figure out the source.
My neck also always hurts, though I don't often notice it straightaway through the noise of my back pain. From the base up to where it meets my skull, there's a deep, sort of heavy, hurt. Poor posture may be partially to blame, but when I correct it I often hurt worse somewhere else without much relief in my neck. I'll stretch it side to side and sometimes there'll be a loud crack, but the pain does not let up.
For awhile, there was a gnawing inside. It popped up regularly, at any time of the day, just beneath my left rib cage. It felt like my stomach was being squeezed in a tight fist. Sometimes it would pulse, not in a cramping, easing and worsening sort of way, but like a longer-drawn out heart beat. Most often though, it would simply hurt. There were no instinctual urges with this pain. Nothing I could try to find relief. Instead, I would just place my palm there and hug myself slightly, as if I were providing physical support for it to lean on.
That pain is fortunately more of a stranger these days, though it still pops in from time to time. It has been replaced by an irritation, stinging, bruising-feeling near my stoma, both on the outside and the inside. At rest, I might not feel anything, but movements can sometimes result in a twinge, even uncontrollable twitches. With every cough or sneeze, my body tightens uncomfortably around the tube as if is still surprised to find it there. When the balloon moves with gut movement, my tube sucks in sharply, the bumper pulsing tightly against my skin until it releases. The feeling is indescribable. Like all things tube-related, it simply feels foreign, like it's not supposed to be there.
In my lower gut, air and sluggishness will often result in a sharp but somehow diffused point of pain. Sometimes it will cramp and ease. Other times it will simply hurt and radiate. When I'm not in my body, I can mostly pretend it's not there, but the moment I notice it I can't think about anything else. I'll try to curl into the fetal position and it'll ease for a moment and then return just as harshly. It's not a new pain. In fact, it's a very familiar one. But the rules of short-term resolution are different now, and it is around a lot more than it used to be.
There are days when, despite everything, there's a pain that's so much I can do nothing but think of it. It's all I can see. And even then I don't know that I can even see it because everything is so overwhelmed. On these days, it's hard to tell that I'm existing. I can't be sure that I am.
Most days, though, the pain is simply a part of the story, woven into the narrative but not the center figure. There are no days without pain.
It's hard to explain what it's like to someone who doesn't live it—that I can hurt and continue to do things. That if I didn't, if I were to wait until it stopped hurting to get out of bed, that I would never leave the blankets. We don't even have enough words to describe pain; I've only a handful of adjectives to choose from and they don't fully tell the story, can't fully tell the story.
How then am I supposed to explain this life—to help you understand—if I don't have the words?
It's like a glass that has a crack in it but is still usable. With each use, the crack deepens. Someday it will shatter. Or like that light that has always flickered but the bulb is irreplaceable. Someday it will go out.