Prisoner In My Own Body 

It’s been a long past couple of weeks. I can feel my body giving up. I struggle in doing any little task. The pain is never ending. It’s scary that my disease has progressed furiously. I refuse to sink, but I just want to rest for a few weeks with nothing to do. My neurologist put me on some new medication and it helps, but brings concerning side effects. I wish there was a quick fix for relief, but there isn’t. I can see the fear in my kids and husband’s eyes when they see me struggle. I carry guilt eventhough I know that having LGMD2J is beyond my control. I pray, but have doubts on whether or not I am doing it right. I need a miracle, but am I worthy of receiving one? What will life be like for me in a year from now? Will I be able to walk? I can barely stand up from a seated position. It has become increasingly difficult to stand up. I sat on the floor to care for my daughters sick pig while everyone was out and it took me 8 minutes to get up from the floor. 4 of those minutes I sobbed with frustration. I fall easily and fear that I am going to break a bone. The thought of that seems bittersweet. I’d have down time, but it would bring additional pain and burden my family even more. We spent the week at our county fair and I sat there watching people walk carelessly. They didn’t have to focus on the ground and worry about falling. They were able to bebop to wherever they wanted to go. They were having fun. I sat there and watched them enviously. I wanted to be able to walk around with my husband and visit with our friends. I wanted to walk with my daughters and enjoy the sights. But I sat there and watched others living life while I am a prisoner in my body. My mind wants to live life, but my body is too tired. I hate to have a pitty party, but today I am. I will try to be stronger tomorrow.