To bed last night at 7:00 PM. Wake up at 10:00 PM to take my evening pills, including a sleeping pill. It doesn't work. I toss and turn until 11:00 PM. I take another half sleeping pill. It works. I go out quick, and stay out until this morning when my Home Care Aide calls from the front door to be let into my apartment building. It's 8:50 AM. Add it all up. It's nearly 13 hours of solid sleep.
When I get up, I'm feeling alert; weak as always, but at least my mind is alert. I go to the bathroom, and feel the energy start to drain. I have a shower too. It's work. I get dressed, transfers included. Even with Micheal's help, it takes effort. The energy continues to drain. I keep going.
It's been almost an hour since Micheal got here. I am fully dressed. And I am starting to tire out. I have exercises to do first. With Micheal doing his part, more work than mine, I feel even more energy draining from me. Each lift, each turn, each grab takes its toll. I almost fall asleep a couple of times while Micheal is holding on to my legs.
Now I have to do my arms; no help on these ones. I am barely functional, ready completely to go to sleep. My energy has pretty much left me. I am drained. Regardless, I push on, doing my arms. At least once I lose track of things, settling into a zone of bare consciousness. I need a rest. I need to stop. I need to sleep.
I finish my exercises. It's been two hours since Micheal arrived. The first out is getting me up and dressed. The second hour is exercises. Except we are ahead of schedule. It's only 10:40 AM. Then again, he got here at 8:50 AM, so it's close. He is supposed to make me breakfast. We have our continuing argument about the quality of cereal as a breakfast. He says that is all he is supposed to do. His other clients don't expect a "fancy restaurant breakfast." A fried egg sandwich would be good enough. I don't get one.
I grab the fruit platter from the fridge. I eat some fruit. I need to sleep. I go to the bedroom, but don't have the energy to put on the sling. I sit, falling asleep in my wheelchair, jerked back to life when I almost fall forward out of the chair. I grab the dresser and railing beside me, stablizing myself.
I go to the kitchen table. I put my head down in my arms. It's uncomfortable. I decide to make a cup of coffee. It's here. I will drink perhaps half. I don't have the energy for any more. I'm going to fight my way into that sling, and go back to bed. I need to sleep.
I wish sleep could rejuvenate you.......at least it puts you in a peaceful place.
ReplyDeleteThat's why sleep is so enticing. When I sleep, I do not have ALS.
DeleteIt's upsetting to me that Michael doesn't put a little more effort into a more enticing breakfast ... common graciousness done for someone ,who can't do for themselves.
ReplyDeleteI've left a message for his supervisor to contact me. I want to see what we can do about this, and a couple of other things. Fundamentally he is a good care aide. He just needs some stronger guidance than I can give.
DeleteRichard, is it only a choice between your wheelchair and your bed?
ReplyDeleteI have the couch and my power wheelchair, but everything requires a sling transfer. I just didn't want to do it.
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