Everything I ever thought of when I thought of primary progressive multiple sclerosis is coming true. The stiffness. The not being able to walk very well or very far. The inability to stand for any length of time. The aching legs and leg cramps. The stiff hands that make it difficult to type. Losing my balance or afraid of losing my balance so I cautiously move through the house like a drunk ballerina.
I remember when I was first diagnosed, reading blogs and other personal experiences of people who have ppms and being scared shit. Now I understand what they were talking about. In particular, the creeping paralysis. How do I explain “my creeping paralysis”? It’s feels like a stiffness and it takes much more effort to move my hands, limiting range of motion, insidiously stealing mobility by slowly paralyzing.
Stiffness was one of my first symptoms along with pain and fatigue. I kept asking a friend, why am I so stiff?
The last couple of weeks have been rough. I’ve been going over it in my head and all I can think of is the physical stress of running back and forth to the hospital to see my Mom totally did me in. Then I think to myself, I really wasn’t walking well before that and the daily walking through the never ending corridors at the healthcare facilities was telling.
I wonder to myself, if I rest up will I regain the mobility I rapidly lost? I’m torn between maybe I will and it wasn’t so rapid. I rest up anyway.
Or, maybe I was enjoying the much talked about “plateau” I think to myself.
Or, maybe I was just happy that my legs held me up and if I didn’t think about it they would continue to.
Finally I tell myself, adapt and adjust. Adapt and adjust.