Monday, 28 August 2017


I feel better today. Of course it's Monday, so I have all the things I need to feel better; Kathy's sandwiches for lunch, a clean apartment around me, the floor bright and shiny, 14 hours of a good night's sleep. So here I am, well rested, well fed, comfortable, relaxed. How could I not feel better?

Never forget that ALS is persistent, if nothing else. So while I may feel good today, all I have to do is wait a day or two. Something else will get to me by then. That's perhaps the most frustrating thing about being sick like this. No matter what I do, no matter how I feel, I can always count on something failing me some day soon. This is not just a cloud for every silver lining. This is a constant state of being.

I'm tired, even though I slept 14 hours last night, and 16 hours the day before. This is not body tired. This is ALS tired. Since I am feeling good, I am hoping to get 8 good hours out of my day. By 9:00 PM tonight, I will be tired. I won't want to go to bed; I'll need to go to bed. I might even go to bed earlier than that, with the help of a cookie or a brownie to relax both my body and my mind. The brownies are stronger than the cookies; I haven't tried them yet. Regardless, I already know that if I sleep 12 hours, 14 hours, 16 hours or 24 hours, I will be tired when my day starts tomorrow, just like I am now.

So what must I do? I must revel in the moment, enjoy the now. I just ate two terrific sandwiches, literally gobbling them down I was so hungry. I'm enjoyng a nice cup of coffee along with a mug of water. I have things to do today; laundry, pill sorting, wine management. I will be productive during the day, and ready to rest at night. Brownie time will be 7:00 PM or so. I might even eat dinner beforehand. I will do my best to live for today.

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