K., my neurologist, scolded me. Gently. He never stops smiling, the chiding is in his eyes.
"Once a month isn't enough."
"I know. My goal has been once a week, but I haven't been able to manage it."
"Busy at work?" One eyebrow up slightly.
"That, and the holidays. And all of the usual excuses that one comes up with." He grins. Point made. I will redouble my efforts to get to the pool once a week.
This was my six month assessment and it confirmed my subjective impressions. Improvements in strength and sensation. Slight reduction in spasticity. I'm bending at the knee more when I walk. Tiny, tiny improvements. This is good. He thinks the lower back and hip pain that bedevils me periodically is sacroiliitis, brought on by the awkward way I've been putting weight on the right side these three years. An injection of corticosteroids should help.
That it's not a direct effect of the transverse myelitis is a great relief. One of the constant dangers of a chronic condition is that you start to see it as the cause of every difficulty you're having. Lynn cautions me about not identifying myself with my condition. It affects every moment, but I can't let it be the substance of every moment. The pain in the hip is suddenly easier to bear when I no longer worry that it's a manifestation of the damage in the spinal cord.
Since the spasticity and the spasms are improving, I'm going to start to cut back on the baclofen a bit. I'm hoping that will reduce the slight fogginess, the mental heaviness I often feel. It's a sensation of my head being encased in some kind of translucent capsule. I can think my way through it, but it can require considerable effort. Less baclofen might help. But it might also increase the spasticity, so I'll need to monitor that. Adjust as necessary.
K. continues to present cautious optimism. "Given the likely extent of the damage to the spinal cord, you're not going to regain full function, but improvements should continue." As long as we're trending in the right direction, I'm happy with the tiny steps. "Take your time," people tell me as they hold a door open for me. I always do. I have plenty of time.
Daily exercises. More physical therapy. The pool. The things I do, not the things I am.