It’s hard to describe it to people who don’t know it. It’s all but impossible to illustrate for skeptics. It’s not that pleasant to explain to loved ones. But that doesn’t change the fact that it’s there — the pain.
I have grown so accustomed to it that it’s all but imperceptible, if I don’t pay attention to it. The dull ache behind my eyes. The complaints of my hands, when I spread my fingers “too wide” in a stretch. The catch in my shoulder when I shrug. The stab in my back when I turn. The pull in my hip when I stand up. All my body, it seems some days, is like one of those old rubber bands that comes wrapped around broccoli. You remove the rubber band and leave it on the kitchen counter, wash and steam the broccoli and eat it, and you forget about the rubber band till months later, when you’re cleaning the kitchen (finally) and you find it wedged behind the blender. It’s stiff, brittle, crackly when you pull it. And if you pull it too hard, it snaps and nips at your fingers, all the little dusty bits of it falling into the cracks you just cleaned in the counter.
For a while, I tracked my headaches. Behind my eyes. Above my ears. In the back of my head. At the base of my skull. Traveling up the back of my skull and down to my eyes, like the insignia on a San Diego Chargers helmet. Throb. Ache. “Lightning strikes” of sharp, shooting pain — I’m having one now.
But after three months, I realized it was an exercise in futility. My doctor didn’t want to see my log. Nobody wanted to see my log. It did me no good — just reminded me I had a headache. All the time. And there was no changing it. So, I quit.
And then I tracked my other aches and pains. The stiffness of my joints, the spasms in my lower back, the tight ache in my hands that kept at an almost imperceptible level… unless I spread my fingers or actually used my hands for something other than typing. Stiff knuckles. Achey tendons. Sore phalanges. Ouch.
I tried to “track” the pain, to see where it was coming from and where it was going to… until I realized that it came from everywhere and nowhere… and it wasn’t going anywhere. I could eat Advil by the handful (which I don’t do anymore, knowing what it can do to your pancreas). All it did was take the edge off. At midnight, when lying awake in shrieking pain, every nerve ending feeling like it’s been dipped in acid, that’s not a small thing. But it’s not a permanent thing. And my internal organs cannot withstand a ceaseless parade of Advil caplets through my digestive system.
I quit tracking that pain. It just made things worse. Again, nobody wanted to hear about or see my log. It didn’t seem to be real to them. As though I was lying to them. Trying to get attention. Malingering. Bullsh*t.
One piece of my pain I cannot dwell too much on, is the all-over pain my clothes cause me. I literally cannot think about it, because when I do, it’s too overwhelming. It’s not everywhere, exactly – mostly on my arms, from my wrists up to my shoulders, especially at my wrists and my upper arms… and the tops of my thighs. Oh, also, my upper back, across my shoulderblades. Depending on how tired I am, or how anxious I feel, the pain can range from a feeling of lots of pins being pressed into my skin, to the sensation of the top layer of my skin being peeled off. Not good.
Most days, I cannot stand to have anything touching my wrists, and I spend my days with my sleeves pushed up around my elbows. I also cannot take the sensation of a watch on my wrist, or rings on my fingers. I know folks who favor heavy signet rings and other jewelry. I don’t know how they do it. I have a hard time just handling wearing clothes — in the summertime, I wear as few as possible. Not to attract attention or get a good even tan. But to be comfortable.
Some days — today is one of those days — I am extremely tired, and everything hurts. Everything. My clothes, any movement, or just sitting. Any kind of contact is unpleasant. Some days — today is one of those days — even the air on my skin hurts it. It feels like I have a first degree burn all over my body, which is healing veeeerrrrryyyy ssssssllllllooooowwwwwlllllyyyyyy.
It sucks. And I chafe and cringe and try to figure out what to do about it.
Tonight, what I’m going to do, is go to bed early. I’m taking a long, hot shower and jumping into bed.
Yes… a long hot shower…. and bed.
Good night, everyone. Good night.