This phrase kept going through my head today. Burn baby burn. Burn! Burn! Burn!
Why does it always seem worse when I try to do something? I just wanted to do some basic things like drive to my doctor appointment and stop at the grocery store on my way back. This is the kind of thing other people do without a second thought. Not me. For once I’d like to go somewhere without being reminded that I have a this dang disease.
I have to remind myself that I’m not cured; I’m just being “managed.” There is no “fix” that will make this all go away. I know this. I KNOW it! Yet there is an illusion, because I seem better and am participating more in life, that I AM better.
I hear this all the time from well-meaning friends and family: “I’m so glad you are getting better!” I even start to believe it myself, that somehow – underneath the drugs numbing my pelvis – my bladder has started rebuilding itself. Then I am surprised when a flare knocks me down, and once again, I’m crying in pain.
I’m still learning every day how to deal with this. Even with the best pain management it isn’t easy.