Because my nerves are sending incorrect messages to the muscles in my legs and feet, the muscles are activated all the time (twitching and spasms), so I get fatigued easily. (Imagine if your legs never rested.) Lately, because of muscle weakness and lack of coordination, I have difficulty even walking across the room. I’m often in a lot of pain (nerve and muscle pain). I fight depression almost daily.
There are many things I can’t do anymore, like work in the yard or do much around the house, which means Laurie bears a much bigger burden and I constantly fight guilt. She doesn't get as much of me as she used to. This isn’t what she signed up for – not that we can ever predict how that’s going to turn out, but we were hoping for a couple decades of more fun and less distress.
I can’t stand anymore when I sing, which feels unnatural! I will need hand controls for the car in the near future because I can’t always tell where my feet are. I have to sit on a stool when I’m cooking. If I want to do yoga - previously one of my favorite activities - I have to do it sitting in a chair. I used to pride myself on my balance poses.
Why am I telling you all this? Not because I want pity or sympathy or cooing words of comfort, but because I need to be completely honest about what it’s like for me to become progressively disabled. I need my friends and family to know what it's like for Laurie and me on a daily basis. I love telling difficult stories with a healthy dose of humor because I think it’s so much easier to hear. But sometimes I just don’t feel very funny and I need that to be OK.
I need witnesses to the difficult times. I know not all of you are able to do that, and that’s OK. Perhaps I’ll code my posts with happy or sad masks so you’ll know whether or not to venture forth.