I have this fear that I will end up being dependent on Xanax and painkillers just to get through the day. I have days like this already, and the times it is true are increasing. That I now know why my back is killing me is beginning to hit me, and I have a moment where I lose it because I cannot reverse what damage has been done to my body by the hypermobility. The osteoarthritis in my spine, the ankle being so weak that I fall just standing up sometimes, the pinching when my hip tries to pull out of the socket.

Awareness is good long-term, but what the rheumatologist told me keeps playing over in my mind: "You will have to relearn how to do everything you have always done in your body, relearn how to move, how to walk, how to lift things, how to stand. You will never have anything close to a normal range of motion, but you will have to become conscious of your body and try to stay within a normal range. Your body will always hurt with exercise, but you need to build muscle to hold yourself together, otherwise it will keep getting worse. If you need to stop for a month at a time during this process, let yourself and don't feel discouraged, because it will be painful."

None of this was anything I didn't already suspect, minus the osteoarthritis, that was a shock. But to hear it out loud, and towards me, is really hard.

I have already had to relearn how to speak to people when I was 18-22 years old. Now I am doing the same with moving in my body. Every time I move or lift anything now, I wonder if i am doing it wrong, if i am unintentionally damaging my body more. I am preparing myself emotionally for the physical therapy. I am scared.

I have a long road ahead of me, and this just added a level of relief to finally know why I am in pain, but sadness too over it. She apologized to me for having been ignored for so long. All I could do was genuinely thank her for being someone who finally listened.

~e