The Eye of the ????

Today is a day filled with feelings, so that is what today’s post is all about. Something is working. Either the increased pain meds or the antibiotic or both. I am not comfortable, but nor am I am in pain. At least not when the meds are in full effect. There is still some pain as it nears time to re-up. Regardless, I will happily take discomfort over pain.

When browsing through chronic illness shirts and stickers–hey, a girl has got to have her hobbies– I see a lot of “warrior” language. Let it be known here that I am not a gastroparesis warrior. I simply don’t have that kind of energy.

I have a pin on my backpack that says “being strong was never optional.” I have no choice but to be strong. Literally. When I felt myself beginning to die from malnutrition many months ago, I felt a literal compulsion to stay alive. That is when I knew that I no longer had a choice but to put everything I had, ever last iota of energy available, towards staying alive.

And that strength made me effective, as my complex care coordinator continues to remind me. She continues to be impressed with how well I navigated arcane bureaucracies, intransigent gatekeepers and even incommunicative doctors . And that means a lot coming from someone who does this professionally.

But that strength comes at a steep cost. And I am fully and deeply aware of how privileged I am to have someone like Mary to take the reigns. Because I honestly am not sure that I could muster the kind of energy I would need to take over that coordination right now. I am just so exhausted every day. Exhausted by malnutrition stretching on over a month, exhaustion from my pain and exhaustion from a complex and confining medication regimen.

I loved my excursion this past weekend. But it also wiped me out. We, by which I mean mostly David, shepherded my energy well. Reminding me that the more I walked enroute to the second festival, the less energy I would have at the festival itself. David was right. I spent my energy exactly where I wanted it and had a marvelous time doing so. But I haven’t had the energy to even leave the apartment since. And I probably won’t for another day or so.

I am taking a break from watching The Tony Awards to write this. I had a little meltdown because I realized that even with my transport chair, I do not have the energy to see any kind of theater. Not when a stroll through the park and a couple of festivals wipe me out for days.

But, I have a much anticipated appointment with a GI in exactly a week. And she has the experience to help me up my nutrition. So I am actually feeling optimistic, even if it doesn’t always feel like it. There is just a lot for me to reconcile on a daily basis. And that takes a lot of my very meager energy.

Yes, I am strong as I need to be. And right now, barring any unforeseen disasters, all of my strength is needed to simply getting myself through the day.