Look at that mess of pills. Some are shiny or brightly colored, the white ones come in different sizes. They all go into Sean’s stomach every day. That’s right, this is *1* day’s worth of medication. You would think that with all these pills he’d be feeling pretty darn good every day. I’ve seen first hand how each pill affects him, and the adverse effects when he does not take them. I believe that (at least to some degree) they are helping him, and his doctors agree that he’s been more stable than not in the past two years. Sean himself doesn’t want to make major changes to his medication regimen because he remembers how he felt and acted pre-medications.
2013 was a long year. Sean had more pain than normal, experienced more periods of depression, contracted a nasty unidentified illness while in Mexico (he didn’t even drink the water) that took months of recovery, was diagnosed with gastroparesis (stomach is too slow to empty), and had more trouble generally accomplishing his goals. We scaled way back, while still trying to participate in a few events to get ourselves engaged. The past two months his migraines have been out of control and his pain levels over all have consistently increased. The pain meds don’t seem to be helping the way they should. I feel very helpless. Tomorrow he will be seeing his doctor and I have been reviewing his daily health notes. It’s sad to see the marked decline since October. And scary.
I have accepted that we will have good days followed by bad days and that the cycle will continue. I no longer panic every time he has a difficult day or a new symptom or weird behavior. But when I see a consistent march downward, it frightens me. Not because I fear the immediate future, but because no one knows what his health will be a year from now, or five years, or ten. Is this a sign of what’s to come?
Last night was a particularly bad night. Incredible pain. Pain meds were no help. He was up and down all night long, unsteady on his feet and needing help getting around. He finally went to sleep around 7 AM this morning. His poor dog was up all night, too, worrying over him and trying to let me know that his dad wasn’t feeling well. I am praying they both sleep well tonight.