I think everyone, especially everyone with a chronic illness, should read at least one Anatomy & Physiology book, even if they won't understand it all. It has really helped me put the pieces together and keep the terror at bay. I can get through a violent muscle spasm in my "shoulder" by knowing, "well of course it hurts, it's right over my brachial plexus!" I know it sounds intimidating but it makes a huge difference.
The spasms on my brachial plexus on either side have become officially chronic. Last night one was so severe that I had to leave the dojo. When I got home I showered, took a beefy muscle relaxer, and my night was over. I lay awake surfing funny animal photos on Pinterest, waiting for the pill to deaden the hellfire in my neck.
When I can't get to karate it's a horrible time. My emotions go into a tantrum and I feel so lonely for my karate family. I try hard to be patient, but I reel on the fact that karate is the one thing in which I have ever physically succeeded, and it's all I want to do.
Sometimes I catch myself thinking that, if I could just arm myself with enough knowledge, maybe I could beat Ehlers-Danlos Syndrome. At those times it couldn't be harder to accept that such a plan is completely unrealistic. Although, knowing more does help me cope better, in that it helps me to communicate exactly what I'm going through, helps me interpret what moves I need to make next, and helps me push myself to do the therapeutic work I need to perform after I exercise.
My health has been on a frightening decline since July. But I'm stubborn and I'm working hard on this life, piece by piece, poco a poco.