I have become attuned to my body’s energy cycle. I have energy from when I wake to around 1:00 pm. Then I crash from 1:00 to 4:00. I have energy from then until about 9:00, then start crashing again. It has a lot to do with my medications, because it coincides with the times I take them. It has a lot to do with my conditions too of course

Yesterday I had a day off, my wife was out for the day, and I planned to stay home and get some stuff done. Yesterday turned out to be one of my full energy days. I had energy from the time I got up to the time I went to bed. I did most of the stuff I had planned to do at home and only did not get to a couple of things, not because I was tired, but because I ran out of time. It has been a long time since I had a full day where I so full of energy. It felt good, and I missed that energy level all the time.

Today, I woke up at close to noon, a throbbing headache, hard to breathe and pretty much no energy level to talk about. I went out and did some errands with my wife, but I had to push through it. I longed for the energy I had yesterday. Not just for myself, but for us. My wife knows when I feel like crap, and I am pretending it is all okay. I know it’s hard on her to see me like that. Yesterday was such a rare day, and she missed it. We missed it.

I know life has changed for us, and it’s something I have accepted, but there are some times that I do wish for and remember those days when we could be more spontaneous and just get in the car and drive for five hours to walk the mall in DC and drive back, all in one day. Now I’m lucky to have energy for five hours straight. Then again, I am lucky to be alive.

Welcome to the sarcoidosis/heart failure/pulmonary hypertension roller coaster.