A Stranger In A Strange Land

I want to follow up on yesterday's post where I talked about how little effort it takes for me to become exhausted. Today I've spent most of my day in bed. When Home Care came this morning, Kathy, my Home Care Aide, left me in bed at my request. She did, however, make a couple of terrific sandwiches, prepped the coffee machine, peeled and segmented an orange for me, and set out a container of wafers on the table. I was sound asleep when she left.

That whole state of being sound asleep went on only for an hour or two. By 10:00 AM I was mostly awake, yet drifting in and out of sleep, dozing along. I stayed in bed longer. I would look at my phone periodically, reading Facebook postings, reading news, responding to messages. The effort of doing that would cause me to tire, so I would doze off again, until my phone drew me once again into its spell.

The reason behind this sloth and indolence is simple. I am at the point where it is just plain easier to stay in bed unless I have a reason to get up. Today, fortunately, I had a real reason. One of the messages today was a friend asking me to meet for a drink at Milestones across the street. It was perfect timing; it gave me cause to act. That's the only reason, besides toileting, for me to get out of bed today.

It's sad that I have come this far in progression and loss, to the point where sitting up in bed takes so much effort that I would rather not do it, to the point where getting dressed takes enough effort to make me want to go back to bed. If there is anything where I could say I am "fighting" ALS, it is in these kinds of daily efforts, these normal things which take so much out of me now. Even the help and encouragement of my HCA isn't enough some days.

Then it is the reverse at night. I am comfortable when seated in my wheelchair. It takes very little effort for me to move, to get a glass of wine or Scotch. It's easier for me to stay up than it is to get into bed and get undressed. Eventually my body takes over. Eventually sleep demands that I go to bed, or at least fall asleep in my wheelchair with my head resting on my table. So I often stay up late simply to avoid the effort of the transfer and work of undressing.

It's a strange life, a strange land in which to live, and here I am a stranger, so unready, so unprepared, so lost in it all.