This disease - ALS - is all about managing your energy. Think of it like this: if you, as an able bodied person, went to the gym at 5 this morning and worked our hard for 3 hours and then went to work and stood the whole time you worked, then rode your bike home, cleaned the house, cooked dinner, did laundry and finally at 10 pm, sat down to watch the news before bed... if you did this, your muscles, your brain would be pretty darn tired.
We met with consultants, doctors, therapists at the U of M two weeks ago and everyone talked about conserving and managing the guy's energy output. Make decisions on what is valuable to you: is it more important to get your own self dressed this morning or be up for taking your girlfriend out later that night :)
Yesterday, we spent the whole day together, which is pretty unusual for us. I work retail and have random, crazy hours. He has the traditional Mon - Fri job 8 - 4. Synching up our schedules is tough, especially on the weekends.
The muscle degeneration seems to have slowed - at least outwardly, to me. Life has stabilized somewhat and feels 'normal'. We chose to have a normal day yesterday. The kind of days we used to take for granted. Monkey around at home, leave for a late brunch around 1. Walk down Grand Ave, hold hands, people watch, shop. We ran a few more errands, went to 'our' nail place and got mani's and pedi's. Ran a few more errands and got home around 7. 6 hours of out and about.
We had plans for today - just more stuff around the house. My dad called to do something. The guy is downstairs, in his man cave and I think he's sleeping. Earlier, we were sitting together here in the living room and he'd close his eyes but say he wasn't sleeping. I told him to go downstairs, hang out and we'd figure something out for later.
I figure, let him rest. Conserve his energy for the upcoming week, the holidays. We're still hanging out together. I'll do the stuff around the house while he sleeps and we'll spend time together later.
The new normal.