Monday, May 03, 2004

Quivering protoplasm

Oh my, yesterday was awful. I had a spurt of normal energy in the morning, in the mid afternoon, and early evening, but other than that I spent the whole day lying on the couch or the floor and moaning. It was a strange affliction. This morning I am doing as little as possible, and lying down a lot. But my boy was shouting in the other room so I came in here for some noise reduction. Sitting up is OK. But I want to conserve my energy so that I don't collapse like yesterday.

It was like a flu, where your whole body aches, and yes I did run a temperature. We never measured it though, but I got pretty hot. I think it was an opportunistic virus, the kind you carry around inside you, normally to no harm. But the exercise two days ago (and it was light, moderate exercise), plus the sleep interruptions, seem to have weakened my system. I functioned until 9:30 AM, at which point I lay down on the concrete patio to rest. I did make a blog entry. Then there was more lying down and moaning. I took a couple of Exedrin around 1 PM while trying to nap. But then my rambunctious son basically mugged me. He was happy and bouncy and mischievous and playful, shouting in my ear, putting his feet in my face, slamming me. I kept begging him to stop. My moaning laughter turned into sobs and crying. I was just beyond my limit. It was like torture. It was torture. But when he saw me crying he showed once again one of the qualities about him that I really love. He is at root a caring, empathetic person. He hugged me and kissed me and tried to be gentle with me. He spent most of the evening gently applying pretend doctor remedies to me, using whatever toys were at hand to run scans on me. He found a tiny hole in the bones of my foot, and a tiny hole my forehead bone. He gave me some pretend medicines to heal up the holes. He also used a device which seemed to operate remarkably like the Mars rovers, to obtain a microscopic look inside me for germs. There were no germs.

By evening I was lying on the floor, slowly pushing myself along with my feet, grabbing bits of food off the table, pumping some water for myself. I didn't even feel like I could crawl. My wife was very solicitous and took good care of me. But when you are trying to feed dinner to two kids and get them both to bed, you can't always follow your moaning, back-sliding husband around the house asking him what he needs. Babies be screaming. She did everything yesterday. She made me a bag of mixed snacks (nuts and raisins and cereal and things) for me to eat in the middle of the night. She has just now made breakfast for us. I am going to go eat it...

...OK, I ate it. Two toaster waffles, two breakfast sausages, one fried egg, one banana, some chopped apple and kiwi. It is very reassuring to me that my appetite has returned, because last night I was unable to eat. And my stomach felt so touchy that I was afraid to put anything in it.

Just to remind the reading public, my hunch is that the horrible, total-body-wracking cough I had in October last year was the final insult which caused my ALS to bloom. Don't use logic on me, this is what I believe. So it is very important to me to try to come through any subsequent illnesses intact, as I have this superstition that if I get really sick, the ALS may be able to make more progress against me. Don't use logic, that's what I think.

I feel like I am handling this well. I just want to come out the other side with the same level of functionality as when I went in.
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