And I still am. I'm still in pain. Every moment of every day I am in pain. Such pain that (after a point) I just have to live with it and do things anyway. That is a daunting prospect: living in pain. Living the rest of your life in pain that will never go away
Except it has. Even though it's still here, even though I push past it to move, my pain is less significant today than it was to me a couple years ago. Back then I lay in bed all day. I lay on the couch. I worked on the computer lying flat on my stomach and I sat up using my arms as props—I got compression injuries in my shoulders and forearms because I lay and sat this way. It has taken years for those compressions to loosen, freeing me from nightly pain as the Aleve wore off and I rested without sleeping, feeling the results of stressing my body in ways it wasn't meant to be stressed
But the situation has improved. Partially because I decided to follow the discipline of doing service and creativity—taking care of the house for my wife while she works, washing the dishes regularly, taking out the trash, folding clothes when I can, and also pursuing my photography and sharing that online. And partially because I started taking Austedo, a medicine designed specifically to treat TD. Austedo changes things for me. It's a TD medicine that, as I increased my dose, allowed me to sit and stand better. It lessened my shaking. And it's given me hope that I might live a life that, physically, I enjoy
Since starting Austedo, I have started exercising. First this was massaging my back and shoulders with a small hard ball that I put on the floor and then lay down on, rolling the ball over muscles that I couldn't reach otherwise. This reduced some of my pain and increased my mobility. Then I decided to do tai chi—a 5 minute video on YouTube. The neurologist who diagnosed me with tardive dystonia suggested tai chi when I asked what exercise I might do. Tai chi has been amazing for me: it allowed me to develop some upper arm strength where I didn't have much before, and it allowed me to feel good about doing some exercise that I could complete. The instructor's approach is key. Her class is for beginners and old people and people with disabilities—people who might have trouble doing even the slow movements of tai chi. When I started, I had to stand with my walker in front of me for the whole routine. Back then, every movement was excruciating—hard to even do. That's ok, the instructor says, "it's not important that you do the movements correctly. What's important is that you make the time to move a little bit every day." That instruction drew me in—and I've stuck with it for 8 months. The movements are no longer that painful for me and I do them without my walker
I've expanded my exercise routine since I started tai chi. It now includes:
- Stretches for sciatica and spondylolisthesis
- Yoga's child's pose
- Ball massage my back and chest
- Roller my calves
- Squats, crunches, jumping jacks
- Leaning from side to side
- Windshield wiper stretches for my shoulders
- Electric massage my hands, feet, arms, legs, and chest
- Ice packs on my wrists, arms, and lower back
- Tai chi
These are all low impact exercises that I can do. They've become the anchor to my day. Whereas before, when I woke up, I focused on other things (internet, worrying, working)—now I focus on my exercises. I start out worrying (as I do each day there is something to worry about) but by the time I've finished my exercises, my worries seem less important, for I'm doing something creative and constructive that increases my mobility and lessens my pain. Before, I might have thought of exercise as a chore. Now, I think of it as an essential part of me having a great day
So I used to be in pain
And I'm still in pain
But it's less now—it's more manageable
Austedo helps. Weed helps. Exercise helps. Washing the dishes helps. Writing helps. Photography helps
I'm feeling daring—so you know what I did today? I know it will hurt, but I bought a jump rope. I'm going to go easy, but I'm going to try jumping some rope this week