Every now and then I fire up my Way-Back Machine (the data that survived my thlrd great laptop melt-down). It's in a file on my desktop labelled, oddly enough, "Karen's Keep". I mine it for gems like this blog entry from nine years ago.
A Day in my Life – February 15, 2009
My typical day starts around 3 or 4 am when I wake up from the pain of restless leg cramps. I get up, walk around a bit, and then I usually work on the computer until about 7. Then the dystonic cramps start, usually when it’s time to get the kids up and ready for school. For dystonic, think “stone”. It’s like human pretzel syndrome. My toes curl under, my feet curl inward, my left arm goes up, my back and neck twist, and my right side goes down. The pain is excruciating. If I am carrying anything like a bowl of oatmeal or a cup of coffee, I have to be rescued.
As soon as the kids get picked up by their carpool, I crawl back to my bedroom (literally!) and pull myself up onto the bed to lie down until I untwist, usually about 45 minutes. If I have managed to make coffee that morning, I try to pour a cup and then push it in front of me while I crawl. Then I have a few good hours when I can work on the computer again, or crochet, or if someone takes me, I can do a bit of shopping. I can walk almost without pain.
Then about 5 or 6 in the evening I start shutting down again. My left side drags. I usually manage to make supper, but the kids have to do the dishes and housework. This is almost more work than doing it myself – just a matter of being emotionally difficult instead of the physical pain of trying to do it myself. I spend most of the evening in bed, and when the kids get to bed around 11, I take sleeping pills to get a few hours of sleep. Then rewind to the beginning of the paragraph and repeat.
Right now it is 4:45 am, and I have been up since 3. My neck is starting to twist already, so hopefully I can get back up the stairs and get to bed. Today is Saturday, so I don’t have to up early, but my body doesn’t let me sleep for long.
It’s not the life I would have chosen for myself, but it does have its perks. My usual line is that if weren’t for the constant pain and the inability to do much of anything, it’s not such a bad life. I get to stay home; I have indulged in some luxury items like a jetted tub and an ultramatic bed that healthy people usually have to wait until they are elderly to buy.