A new diagnosis has led to some new treatment. This post shares my experience of the first few days since I heard the news.
As I wrote in my last post, my symptoms are getting worse. Waking up as tired as I was when I slept and seeing every slope as an Alpine ascent. Last Thursday I visited with my Neurologist, and after discussing the changes he concluded I now have Secondary Progressive Multiple Sclerosis. This means cycles of good and bad will stop, replaced by a never-ending decline. It might be fast, or slow, but constant.
My head went into a tailspin on the way home. Tiredness made the fatigue worse because I had to get out of bed 2 hours earlier to arrive on time. Tiredness has a way of making the simplest of crises something of mammoth proportions. Visions of wheelchairs, hoists, 24-hour care in some soulless institution. Thoughts careering around my head like dodgems with death wish teenagers at the wheel.
After arriving home, I sat outside the back of the house, and let the sun burn away the negativity. Time with my thoughts, the blank pages of my journal the new home for the ashes left behind. Cleansed, purged of anxiety about my future, I could now focus on regaining equilibrium. By focusing inward I lost all connection with the world around me. I was in my cave. On days like those, I am disconnected.
The following day they informed me that I should arrive at the hospital at 10:30 on Monday for a 3-day course of IV steroids and Botox injections in my right leg. The aim, improve mobility, reduce fatigue, to slow progression of this illness.
In the hospital
Today is Monday, and I have had my first infusion. My room looks on trees and grass. While the drugs were being administered, I watched someone walk two dogs. They bounced, ran and turned with the enthusiasm that comes from being a Spaniel out on a summer’s day. A smile grew on my face, I wondered if my stay would also bring a spring back into my gait. Would I lose the look of Quasimodo and become Bolt? That would be perfection, but for me, it would be a joy to ascend 10 step and not feel like I had sprinted 100 meters in under 10 seconds.
Treatment started, something is being done. Will it work, I don’t know. Maybe. The key is that I am doing something. By joining this battle, actively, I now sense achievement. Meanwhile, adjusting to the change in diagnosis, I have time to think if I will change my plan I shared the last week. It was a good plan last week, and the only thing that has changed is the name of my disease. It is a good plan, and for now, I won’t change anything.