Friday, 13 March 2015

Doing It All Over Again

I am having a slow morning this morning. Thank goodness the time zone here in Alliance, NE is screwed up. For some reason it's like Newfoundland time, a half hour different than everywhere else. Or perhaps we have crossed some unseen barrier, leaving us deep in the Twilight Zone. It doesn't really matter; I need that extra half hour this morning. Even now, as I type, my hands are shaking. ALS exhaustion never goes away completely, no matter how much you sleep.

Over the last couple of years I have had the opportunity to make several significant voyages. In those travels, I have been blessed with travel companions who really understand what this disease is doing to me. They've taken the time to slow down in the mornings, shown me the care and help I need with things like showers and bathroom, gone the extra mile in seeking out suitable accommodations. It's not easy traveling with a person who needs more sleep, takes longer to get up in the morning, has erratic eating patterns.

This morning is one of those, the kind of morning where bed just seems like a better option. Perhaps this is payback for all the earlier mornings of late, a chance for my body to remind me that it is still in charge, that I cannot tell it what to do any more. I'm getting there; it's just taking a bit more time.

Typically I get up at around 10:00 AM, or at least that is the plan. I dress, have some coffee if it is available, and then I write. All of this is with a plan to hit the road at sometime around 11:00 AM. With the 7 hour average road day I have planned, which includes an hour for a lunch stopover or perhaps some tourism, that means we arrive at our destination at around 6:00 PM. After checking into a hotel or motel, we are usually seeking dinner at around 6:30 PM.

Dinner can take anywhere from 20 minutes to an hour or more, depending on the place, the beer, and the service. A location close to where we are staying, one where I don't have to drive, allows for more relaxation at dinner. Dinner ends at 7:30 PM or so, and then it's back to the hotel or motel, where I need to rest for a bit then have a shower. Showering in the evening just makes more sense for me, especially when checkout is usually at around 11:00 AM.

By the time I am done showering and taking care of various skin care and grooming tasks, it is almost always sometime after 9:00 PM. I can relax for a bit, then it's time for sleep, usually at around 10:30 PM or so. I need to sleep for 10 to 12 hours, so it's always a bit of a push to get up in the morning. I make it, with the help of Katherine. She loads the truck while I get up and write. Then we are off to do it all over again!


  1. Dare I say Don't overdo it as opposed to doing it over. Take care my dear son and get enough rest.
    Love you

  2. I know you're on the road, but I know how it is dealing with sitting in a wheelchair all the time and getting the dreaded "crotch rot." I used to get terrible jock itch and used all kinds of otc and prescription ointments to battle it, with little luck. I finally found some all natural body wash that has really helped! Ive had NO outtbreaks in the last 18 months. If you want to check it out, here's the link on Amazon:

    Hope it helps!