There's a room full of people in your head, in your head,
Yes there's a room full of people in your head, in your head.
And every single one of them knows your name.
So goes the song by Craig Minoa of Cloud Cult.
Woke this morning with the critic on the mic. I'm not doing enough, just going through the motions, checking things off my list so at some point I can turn back to God, or my Doctors or anyone else and scream "IT'S NOT MY FAULT!!! -- SEE LOOK, I DID EVERYTHING I COULD..."
Screaming, more of that. I grabbed a pillow on Sunday and screamed for about 30 seconds - everything felt better, and my voice dropped.
No water for most of the day today. Dr Ming is visibly upset, but something that is obviously not in his control. Talking with others about it, this is not common but not unheard of.
So we all pitched in and boiled water in the kitchen for dishes (we still have a hot/cold water cooler in the room, so plenty to drink). I was planning on a shower and laundry today -- best laid plans.
Tremors are high today and all over my body. Nothing uncomfortable, and no cramping -- I like to think it is a good thing. The muscles are "beaconing" to the neurons for signal. Healthy neurons can take the place of those that have become too weak to signal -- with the potential to expand by a factor of 5!
Cooking my own meals today -- and glad for it. Nothing tastes as good as your own food.
The morning routine is pretty much set. If I'm up by 6 I get through it all by 9 in time for the Doctor's rounds. Then tea, a little video chat with my sweet wife and daughter and acupuncture and massage takes me to almost 1.
Making, eating and cleaning up lunch takes about 2 hours -- a nap, exercise, a little computer time and then dinner. Meals are a social time -- hanging out cooking in the kitchen with everyone else is enjoyable. So far everyone I've met is here for ALS treatment.
After dinner and cleanup another video chat, and if I have the energy some reading or computer time.
Hard to believe I used to work 10 hours a day.
Thanks for all the comments and emails. It helps to hear from you and stay connected.
Until tomorrow -- love from China.