Sunday, October 8, 2017
It has now been three months since my visit to Toronto to attend the cervical dystonia workshop with Dr. Farias.
I diligently have been trying to do the therapy and exercises Dr. Farias showed us along with the eye movement therapy and exercises from Dr. Kukurin and Dr. Antonucci. It adds up to about three hours a day. By the time I am done with the therapy and taking care of my son I am tapped out. I have seen significant improvement compared to where I was last year. My pain is lower. On a scale of 1-10, last year was a 10. Now I average a 6. I no longer think about suicide or running away. I am able to walk a bit easier. I drove a car for the first time in 2 1/2 years. THAT is huge. I was so afraid to try it because the last few times I drove in 2014 my head would shake uncontrollably. That did not happen! The Botox injections combined with the exercises and therapy are working! When people ask if I work it is hard to answer. Yes, I DO work. Harder than you can possibly imagine. Managing dystonia is my full-time job. On days when I am not able to do the therapy I can feel my symptoms getting more intense and my muscles tighten up. The deep breathing is key. I try and do the cardio at least three times a week and next week I want to start swimming again. This summer I swam almost every day it felt amazing and I was getting into better shape physically and mentally.
I tried to go shopping with my friends and it is still hard to be "in the moment" when I'm trying to control every movement I make. Nobody knows that I sometimes can't feel my left foot or that I have shooting pain in my neck. My muscles have searing, hot pain and I get a rash that is so itchy I could scream. When I try and look to the left I have to really concentrate and try as hard as I can to do it fluidly and without spasms. I am doing so much better but it is all relative. This pain is just more bearable. Not acceptable, but bearable.