It’s been a bad day. 

Today is a day to own up to not making it.

Today I wanted to kick and scream and cry and sleep through everything I possibly could.

I went for sleep. Thankfully, it was more groaning and whimpering than kicking and screaming. Although, I think my mom would prefer the kicking and screaming. I’m sure it’s much harder to watch your daughter whimper than it is to hear her scream. Maybe.

Today was terrible. Vomiting, diarrhea, headache, fever, migraine, pain. My hips hurt so badly today I couldn’t move my legs for an hour. Couldn’t even roll over.

But it also made me realize how long it’s been since I had a day like this. They’re getting fewer and farther. They’re not as bad as they used to be. And the farther apart they become, the harder they are to deal with. The more panic they induce.

So much of living with a beast like lupus is about balancing hope and rationality. I can’t give up.

———-Lets pause here and define “giving up.” Giving up is an elusive thing for the well to understand. Giving up isn’t just some break of will power. To give up when fighting a permanent, incurable, chronic illness means one day I’d wake up and stop taking my immunosuppressants. I’d keep taking my pain meds because the pain would be what was winning. But I’d stop my beta blockers, prednisone, supplements, antimalarials. I’d stop showing up for appointments and follow ups and infusions and tests and needle pricks and procedures. Giving up would mean deciding not to have lupus anymore. But that’s not possible. So when I say “I can’t give up” I don’t meant “I won’t let myself give up,” it means that I literally can’t give up. It is not possible for me to “give up” lupus. I don’t have that exit.———-

Anyway, I can’t give up. But I also can’t cling to some thread of research thirty years from fruition that might mean a new treatment that maybe in fifty years may open a clinical trial into a cure that maybe if I live to be 100 (which is probably twice my predicted lifespan) I’ll be able to try if the FDA rushes its approval.

I walk a narrow line. How do I keep my friends and family from collapsing under the despair of my disease? And how do I keep myself safe from all the hope that one day I’ll be better? How do I explain a day like this after such a good span of vibrant and bright days? How do I keep myself from fearing days like this?

I don’t have answers to these questions.


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