I have not written much lately. I have not been feeling good, but today I woke up feeling great. I have decided to write about my experience last week, because it was a difficult week. I was feeling things I never had before. It was very difficult for me and my family and caregivers. I don’t understand exactly what happened, but since I have always been honest about my Rett symptoms, I decided to write it for you. I hope I never feel these things that way again.
I felt so much anger in my body. It wasn’t in my mind, it was just in my body. I am trying to think of how to explain it to you, because I have felt anger as an emotion before, but this was very different. I felt completely out of control. I tried to throw myself back and it didn’t seem like I felt pain. I am tall, so it was really hard for my Mom, who is much shorter than me, to help me walk or even sit next to me. While I was doing these things, I felt so scared because it wasn’t me. It wasn’t who I usually am. I am very content and gentle most of the time. I would never hurt someone. It felt like I had no control of my body. I was sweating which is very unusual for me. I typically am very cold. My body smelled funny, even to me. I couldn’t sleep most nights. It was painful to be inside of me.
I found that if we got out and walked at the place I go with my walker in the cold months that it helped relieve some of my feelings of anger, but I couldn’t get rid of them completely. The past two days have been very different, so I am glad for that. I hope this might help you understand if you know of a Rett girl who is acting very aggressive, that it may not be anything she is actually feeling inside. I don’t know why it happened; we weren’t doing anything different than usual. No new medications or supplements or diet changes. It was very weird. I feel great today, except I didn’t sleep at all last night, but I feel content.