I was talking to another PNE patient who expressed what an emotional journey this is, going through the ups and downs of this disease. After a long reprieve of experiencing little or no pain, she is suddenly back in pain.
It is impossible to describe how devastating that can be. I think living with pain is was one of the most grueling emotional journeys of all … because it awakens our “fight or flight” response. Yet there is nothing and noone to fight. I went through some long dark hours wishing I could just go to sleep and not wake up. Or just wondering how this was going to end, because I was losing hope that any intervention was going to work.
We don’t even receive the empathy granted to those with other serious diseases, because this kind of pain is invisible. And hard to talk about, because it involves the most private area of our body. It just sucks.
I am aware every day that I have experienced a miracle. I can walk, really walk, the way I used to, striding down a hallway or taking a brisk walk around the park. I thought I would never have that again. I can go places! I can drive (most of the time, unless I’m tired or having a flare up). I can do things like quilting, and I’m learning new things. Cooking! Who knew? I watched a video of crepe-making, bought the pan, and tonight I am bringing crepes to a party with some girl friends!
What a gift I have been given! My life!