I Would Rather Just Stay In Bed

I have a new home care worker, a very pleasant young lady who, along with pretty much all the rest of my home care workers, is a relatively new Canadian. She came to Canada from Ethiopia via Kenya, arriving here in Calgary in 2006. She has a husband back in Kenya and has applied for him to come here as well. Canada continues its historic tradition as a land of immigrants.

Having a new home care worker is a bit of a chore for me. First of all, on their first visit they are supposed to come with a supervisor for onsite training. This means they want to arrive early. For most of us, coming at 12:30 PM instead of 1:00 PM would not seem like much of a hardship. For those of you who have seen me try to get up in the mornings, you know what that loss of a half hour does to me.

The whole sleeping thing is problematic; I go to sleep at about 11:00 PM or so at night, except on those nights where I stay out late, typically Tuesday and Thursday. Then all bets are off. Nonetheless, even on nights when I get to bed at my typical time, I need about 12 hours of rest. That 12 hours is not all sleep. Usually I am up three or four times in a night, either to adjust my legs or to go pee, or both. In fact the very act of waking up to adjust my legs invites my bladder to participate in the activities. So these two things usually go together whether I like it or not.

Waking up itself is not a single event. I wake up tired, whether from a night of constantly interrupted sleep or the general exhaustion from ALS, I am tired from the get go. The mere act of sitting up is often enough to convince me to go back to sleep again. In fact that is usually the way it goes; I try to sit up, then lie back down for a while, often repeating this process two or three times until I can force myself to stay upright. So while I may awaken as early as 8:30 or 9:00 AM, I often drift in and out of consciousness for at least a couple of hours.

Once I do finally get there, to the point where I can face the ordeal of getting dressed, I start with underwear and socks. My compression socks are a major ordeal, a fight of the first order, getting them on my foot, over my heel and adjusted on my calf. Underwear, on the other hand, is a simple process of rocking and rolling sideways, adjusting the opposite side upwards with each shift of weight. Then comes the easiest part of the whole process, my shirt. I just slip it on with joyous ease and simplicity. Finally comes pants, another dance of rock and roll with pull and twist. Once reasonably close, I lie back down to give myself the needed pant slack to do up the button. While I am laying down, I usually close my eyes for another 15 minutes, just to catch my breath.

All of this takes quite a while and this is without bathroom needs or a shower. Add those things in and my usual morning takes at least an hour or more. So if you ask me to get up early, that takes a real commitment on my part. I would rather just stay in bed, thank you very much.