"I`ve never forgotten her. She gave me hope that it might be different for me one day."
I said this to the geneticist this past summer. I`d last seen him three years ago and during that visit he told me about another patient with the same connective tissue disorder as me. She had her rough spots but one day she came into his office and was a different woman. She had a vibrancy and life about her that he had never seen. I had left his office that day thinking that if it was possible for her it was possible for me. And this past summer I walked into his office embodying that same hope. I mentioned that I remembered her. I didn't even have to give him any details and he knew which woman I was talking about even though he sees hundreds of patients with our disorder. He told me she had since had a surgery but had come through okay. He didn't quite say the word remission but he talked in those terms. This is a disorder of peaks and valleys and no one can predict when they will rise and fall. I hate that about it.
This morning I got up and my muscles were weak. My heart was racing. I was fatigued like I haven't been in longer than I can remember. I've been in quite a bit of physical pain this past while. I made my way to town anyway. Went to my home group meeting. Did a few errands, but cut my town list short. Everything seemed to be in slow motion. I was hyper aware of my body. Every day used to be like today was or worse. For five years. Many times today I was grateful that today was an anomaly.
I don`t want to go back to counting my steps, to choosing whether to use up all my spoons washing my hair or save them for other things. I could wake up tomorrow and be fine. I could wake up tomorrow to more of the same. (For newer readers I can`t get my link button to work right now so if you type spoon theory in a search engine you will know what I am talking of when I talk about spoons and energy.)
This is where I`m supposed to tell you that I will be fine even if I wake up so fatigued I don`t have the energy to lift my arms above my head to wash my hair. That God will see me through and I will be able to be at peace regardless. That sick or well, I can choose my attitude. And while that is all totally true, there is a whole lot of shit to wade through to get to the place of acceptance. All those human emotions that I need to acknowledge before I can say, okay, it is what it is.
Days like today scare me.