Amish Quilts and Nap Time

Yesterday, my wife and I went to see the Amish Quilt show at the DeYoung Museum in San Francisco. What astonishing stuff. The patterns are just striking and the optical illusion 3D patterns are something you can get lost in while looking at them. They use a lot of black backgrounds with vivid primary colors that just make the patterns pop off the quilt at you. I can’t imagine being able to sleep with some of those quilts on your bed though; your eyeballs would never stop vibrating.
Going there did point up another aspect of the Hep C treatment management thing and that is that you have to plan your day pretty carefully and with full awareness of what your energy level is.

It’s not like going to the museum is climbing Half-Dome. We parked a few blocks away, walked on flat ground to the museum, walked around the museum on mostly flat floors and still after an hour of looking at art, it was “let’s head for the café and sit down for a while.”

It’s only been about 7 weeks since I started treatment and my mind still thinks like it did 2 months ago. You go out for an afternoon or evening of socializing thinking full well that you will be going strong for 3 or 4 hours. Then, 90 minutes in to the event, you start searching for a chair, yawning, and getting that dazed and confused feeling that comes with real fatigue.

My wife gets it a lot better than I do. She has been watching me now for months as I discovered the extent of the disease, researched treatment, screened for the study and then started in. She has seen the energy go down, the bags under the eyes get larger (like I really needed that, they looked like sand dunes already), and has watched me gasping after going up a flight of stairs. She is always asking how I feel, if I am tired and do I want to sit down.

Of course I am tired, feel crappy and do want to sit down, but the old Midwestern Catholic upbringing makes me feel like it’s my willpower that is weak, not my body. So I find myself not paying enough attention and then hitting the wall of exhaustion.

As anyone’s wife would say, “If you just listened to me, this wouldn’t happen.” And she is absolutely right. As one of the folks in Living with Hepatitis C by Everson says, “You have to learn to be patient with yourself,” and believe me, that can be very hard to do.