I’m on Day 2 of 3 for my monthly IVIG infusion cycle to treat my invisible disability. So, in other words, I’m exhausted, my limbs feel like they weigh a thousand pounds, and moving feels like I’m stuck in molasses.
But, if we’re being totally honest, I wouldn’t change a thing about it. When you have dysautonomia and an immunodeficiency like I do, most of your days are going to be what we call Bad Days. A Bad Day could mean it’s your fifth new respiratory infection this month, or it could mean that every nerve in your body feels like it’s on fire. Or, if you’re lucky, a Bad Day could just mean that you “only” have a migraine, or maybe just a new food intolerance. You like chicken? Too bad, this week it’s going to cause all sorts of unpleasant stomach issues.
Before a year and a half ago, almost every day was a Bad Day. But then, everything changed when the Fire Nation attacked. Or, in my case, when my genius neurologist was able to slay the evil Health Insurance Company and convince them to allow me to start treatment.
Every month, I get a 25mg IV infusion of Gammagard for three days straight. Those are not fun days. But those three days mean that the rest of the month I feel pretty okay-ish most of the time. Yeah, I still have bad days here and there. Very rarely do I feel what I’d consider actually “good.” But then again, what is feeling “good?”
If you’re someone like me, with an invisible disability that took the better half of a decade to get diagnosed, “good” can mean anywhere from “yeah, I don’t feel bad” to “well I’m not totally miserable today.” It’s going to change day to day, hour to hour, even minute to minute. But it’s a very rare occasion that “good” means something as extreme as “yeah, I can go to the gym for an hour and not spend the next three days laid out in bed from the effort.”
What causes a bad day? Well, sometimes we just wake up that way. Sometimes we overexert ourselves. Sometimes it just happens randomly at 2:37pm when your back decides to give up on you when you bend over to put on your shoes. And sometimes it’s just the mental strain of dealing with your “good” days being everyone else’s “bad” days. But hey, maybe tomorrow will be a good day.
But tonight, I go to sleep beyond exhausted, knowing tomorrow will be even more unpleasant. Why am I okay with this? Because I can feel like crap for just three days to feel okay-ish the rest of the month. I’m lucky, I got a diagnosis. Not all of us are able to, and some of us take even longer than I did to get there.
If you could put all of your bad days into just a few in a row, would you?
-Nick