Today is the 139th day after my diagnosis. Overall I'd say I'm doing pretty well. Still primarily a mental and emotional struggle. Physically my left arm is getting weaker. I can't lift things or grip things quite as well. Sometimes I get a numbness or tingling feeling in my fingers. I have fasciculations (fuh-sik-you-lay-shuns), or twitching, in both arms and legs, my stomach, my back, my chest, and a little in my neck. 24/7. As a symptom goes, they aren't that much of an inconvenience or pain. It's what they represent that is the most nerve-wracking. Pun definitely intended. My left calf and quad muscles have seized up on me a few times, usually while sleeping. The pain is pretty bad, but nowhere near as painful as startling Kirsten out of sleep. She needs her rest while carrying our little girl. Yes, we're having a little girl if you hadn't already heard. There hasn't been a Stafne girl born in 3 generations, so she's bound to be pretty spoiled. I can't wait to meet her. Just 3 more months to go.
Anyway, for those of you that have had leg cramps in bed, you know they're pretty alarming. My legs are a little less sure of themselves. My balance is a few notches down from normal, but I haven't fallen yet. I've been trying to get to our gym at least 3 times a week, use the treadmill for 30 minutes. Definitely helps to stretch and loosen up before and after. Helps relieve a ton of tension too. But I have a hard time watching others in the club doing their thing, seemingly leading healthy lives. I feel a little bit like I'm getting away with something by even being there. Working undercover perhaps. Mostly I'm just glad to be there.
So yeah, physically I'm not all that bad off. My mental and emotional state is still a daily rollercoaster. But nowhere near the nasty ride of the first few months last fall. I've more or less reached a 'new normal', where I'm just trying to keep focused on the day at hand, appreciate things as they happen. I've struggled quite a bit between what at first seemed to me to be 2 opposite states of mind: acceptance and hope. How could I accept what doctors tell me is my fate and yet keep hope alive? It's a constant tug of war in my brain. I'm trying to reach a balance by hoping for the best, and preparing for the worst. And hope isn't limited to a cure. I can still hope for a slow progression. For advances in assistive devices. For good times with my friends and family. Oh great, I haven't cried in a few days, and now the tears are starting. But they're really a good thing for me. I haven't been very good about getting out my emotions for many years. It hurts, but in a way it's a good hurt. A cleansing.
Alright, enough of this. Back to the real world. Sometimes an extremely scary, frustrating, and painful world. But mostly a good one. My mantra, from here on out: Carpe deim. Seize the day.
This post brought to you by the number 3.