So my posts are becoming less frequent, which you and I should both take as a sign of improvement. We went to the beach a week ago, and after a two-mile walk, reflecting on storm-driven seven-foot waves, I had a revelation.
Last July, we went to the beach as well, only my symptoms were just beginning. I could barely make my way across the boardwalk. The give of the sand and sway of the waves made me incredibly dizzy. I could never stay for long before going home and back to bed.
On this last trip, however, I spent all the time at the beach I wanted, descending long, twisty stairs to get there. I walked, then swam out to a sandbar several hundred yards from shore, and stood there for close to twenty minutes — rocked by waves, watching clouds speed over head, observing the shore line. I’d say that’s improvement. I did get tired, and needed to rest for a while every day, but the dizziness wasn’t too bad.
I’m writing well — or at least concentrating well — too, which is exciting. Cognitive Rehabilitation Therapy hasn’t improved me just yet, but it has helped me to recognize clear weaknesses that I can make better. Some of it, I’m told, is just being in my 40s and not working those parts of my brain for a long time. But some of it is also due to the SCDS and the resulting trauma. I might get specific on some of this stuff once my doc tells me I’m back to or above average.
Just as an aside — tylenol makes me dizzy. Alleve doesn’t. That was a welcome discovery as my head still hurts quite often, and the acetaminophen made things worse.
Running is still a bit too taxing on my vestibular system, which bums me out. It’s the bounce. I no longer have functioning vertical gyroscopes in my head, which makes the whole world bounce when I run. Maybe that can be trained away like it was for walking, but it is going to take much longer.
On the plus side, though, I have successfully resumed yoga! Six sessions in two weeks. Last night I was holding balance poses that other people were struggling to maintain. Granted, it’s a newbie class and I’m not exactly a newbie, having practiced steadily for three years in LA, but I found it encouraging.
I’m trying to teach myself to do something I’ve never been good at — live in the moment. I’ve always been focused on the future, and too often on the past, and have struggled with the present. While my present is going well, I’m trying to live fully within it. But, I’m finding that can be as much of a struggle as learning to physically balance again. It’s hard to override years of self-reinforced programming — teaching an old dog new tricks — but I’m trying.
Finally, I have made a new appointment with Dr. Hain in Chicago to have testing done on my left side to see where it is right now. I plan to then fly to Boston and have Dr. Lee exam my new scans. I want to know all of the options going forward, and monitor the size of the holes on the left. While I’m in Boston, whenever that happens, I hope to interview Dr. Lee as the first speaker in a short documentary I’m planning to produce on Superior Canal Dehiscence Syndrome.
That’s it. Thanks for reading. I always enjoy hearing from folks, so please feel free to comment.