A lot of people don’t understand how I can be so dismissive about information regarding CFS/ME. When they try to shove the newest ‘cure’ or newest ‘possible cause’ under my nose, I shrug it off. I am told that I am being negative, or that I want to stay in the dark. But really? I’m just trying to help myself out…
This too.
‘New pain’ itself isn’t difficult to explain. It’s just pain. More pain. Pain on top of pain. But it’s effect and impact can be hard to get your head around.
The physical pain never leaves, but with time, I learn how to live with it. I develop some level of understanding. Sometimes, I figure out what causes it and perhaps even what helps it. That doesn’t mean that the pain disappears, but there is some level of control, no matter how small. Even if there is no way to stop the pain, not even a little bit, I become less aware of its presence as time goes on. It worries me less, I become unwillingly accustomed to its presence. While it is always in my mind, it is no longer permanently at the frontof mind.
So when new pain comes along, it throws me.
The ‘I don’t know’s’ start to build up: I don’t know how to deal with this new pain, I don’t know how long it’s going to be around, I don’t know if it’s going to be yet another symptoms that I am going to be stuck with for another four years, I don’t know if it has an entirely new cause. One of the worst things for me to consider is whether or not I have taken another step backwards. Simply, I know nothing. Still, I scramble for a new cause, trying to find its trigger. But more to the point, it is stuck to the front of my mind. I am always extremelyaware of it. And it completely, utterly overwhelms me. Then the anxiety begins. It becomes harder to think through the pain, sometimes it’s hard to breathethrough it.
Sooner or later, I adjust. It’s still there, it’s still so hard but I’m used to it. With a chronic illness, you have to become accustomed to living with these things. So even on the horrible days, I find a way to inhale and exhale. But until then… new pain will knock me off my feet and for weeks, sometimes months, I won’t know how to stand.
