There are these moments when I feel normal again. There is no pain. There is no pain. My muscles don’t lock out away from me or in toward me. There are no funny wiggles or struggles to breath. These are the moments I know I can run, jump, good around and whatever happens I am in control of it. Sometimes these moments can last a few days, weeks. Once these moments lasted a couple of months. In the beginning these moments made me think, yes I’m cured and all the weird spasms that had happened to my body were all in my head. It must have been stress or something. Almost two years later I know better. I know I need to enjoy these moments and in take advantage of them to do the things I miss, because these freeing, pain free healthy moments won’t be forever, but then again what is. And at the same time, these moments also come with fear, an underlining fear that at any moment I can go into a spasm. I struggle to cope with it. Some days are better than other.
Yesterday on mother’s day at my mom’s, feeling wonderful, no pain, no “dystonia” on the surface, completely normal we were walking back inside from the front yard when my left foot got caught underneath the welcome mat and and I struggled to catch myself my leg began to lock. Still I caught myself, but then I step clear and then forward and on that forward movement I went down on my left knee. Everyone asking if I’m alright and I’m trying to pretend like I am but I knew I’d be limping after that, not because of my knee but because of where my muscle now locked and how my foot would now drop. Sure enough it did and to hide it I quickly sat down on the rocking chair. My siblings, mom, kids, and boyfriend looking at me and asking me if I was OK. My mom most concerned becuase I’ve struggled to tell her what this is. I don’t know how. It’s a language barrier sure, but also I’m struggling to communicate with my mom lately. dystonia isn’t exactly way to explain either. The news is recent to my siblings too. I told them earlier this month. My oldest sister who works in the “mind” business understand s the most about dystonia but since it’s rare…My little sister heard me having a bit of issues struggling to breath. She sat in my lap to take a picture of us and show me snap chat. I told her not to lean on my chest. She thought at first I was kidding after about 3 minutes I had to get her off of me and she realized I wasn’t kidding and felt terrible. I giggled and told her she was to heavy and I wanted to hug her and tell her it was all going to be okay. I told her instead this one isn’t bad. I can handle this one and in about 5 minutes everything was better. My boyfriend was watching th e whole time. He said are you okay now. I said yeah that one wasn’t bad.
Today is another normal day and I feel great.