Quite a few years ago, I heard about the Spoon Theory, a story written by a woman, Christine Miserandino,
who is living with Lupus. She was trying to explain to a friend how she deals with her energy every day, and the friend didn't get it. So she explained it by using spoons.
The Spoon Theory is a story that can fit almost anyone living with a chronic disease, not just Lupus. It completely fits the life of someone dealing with pulmonary hypertension. There are some days when I might have a ton of spoons, and I can do a bunch of things and feel pretty decent. There are even days when I miraculously end up with some extra spoons by the end of the day! And then there are those days when I might drop all my spoons on the floor the minute I get out of bed in the morning. I have often used this story to explain to my family and friends how it feels to live with PH. They seem to understand when I tell them I don't have enough spoons to deal with something. It sucks, but at least it's a way to open their eyes.