Here’s the thing you need to know: the pain never really goes away. It may be muted, submerged under the Tramadol or other pain medication. It may be a “good” day, and the pain is just at the edge of your consciousness, just in your peripheral vision. You don’t always see it, but it’s there.
You may look “normal” and completely functional. Until you lift a book off the desk and wince at the throbbing in your hands. Or you cringe when someone shakes your hand. Or they hear the crack of your joints in the meeting when you pick up a marker.
And all the time your pain, your constant companion, is right beside you.
You wish the condition were more visible, more obvious. But the pain is internal, not external. You don’t get to turn it off. The pain may shift from a throbbing ache to a burning in the joints, and then to a strangling tightness. Or it may only be there when you move. But you can’t turn it off.
All the pain medications, all NSAIDS and the DMARDS, all they do is help turn it down. They help keep you functional, working and feeling like your old self, before you had to ask your son to open the door because you can no longer turn the knob. Before you volunteered to do the dishes every night because you get a few precious moments of relief in the hot water. But the medications wear off, or you can’t take a large enough dose because you have to drive to the office, and that’s when you know your companion is still there, no matter what you do.
Your companion robs you of your rest. Most nights are a bit uncomfortable, just enough so you’re on the edge of waking. But turning over some nights causes a jolt of pain that makes you wake with a gasp. You then face a choice: take the maximum dose of pain medication, get a semi-drugged sleep, and work through a fog the next day. Or go without the medication, get no sleep at all, and work through a fog next day.
Even if you get some rest, the pain brings fatigue, crushing at times. You know when a flare-up is coming by the complete, bone deep weariness, where you don’t have the strength to get up. But you need to move, to live, so you choose: do you clean the kitchen, or do you do the laundry? You can’t do both. Do you play with your son, or you go for a walk with your wife? You can’t do both. Sometimes you don’t even get that choice: you can’t do either one. You only get to spend time with your constant companion, your pain.