Dysautonomia Awareness Month

I feel like my autonomic nervous system got wind that it was Dysautonomia Awareness Month and decided to give me some talking points. Vis a vis (I feel all nerd-glowy for using that in a sentence...)

Vis a vis, I neared my record for shittiest blood pressure ever this week. A whopping 63/44. This is second only to the 50something/30something I had a few years ago. I... uh... can't remember exactly because I'm not entirely sure I was fully conscious at the time.

What I am sure of is that those of us with chronic illnesses are some of the most resiliant, badass people out there. We manage to do a lot more with far less than most people could even think of doing. Because we have to. Because we refuse to give up. And, for the most part, I've been doing pretty well lately. Things have been manageable. No running marathons or the like but I've been able to get dressed most days, go to appointments if I need to, take my dog for walks now and again, make dinners (with, like, actual cutting and pans and veggies and crap!), and focus long enough to get some writing in.

But here I am on Day 4 of Ridiculously Shitty (as opposed to Typically Shitty) Blood Pressure and while, yes, I'm trying to figure out potential causes as well as balance and take care of myself, I can't help but think, "Wellp, it was a good run while it lasted." And isn't that one of the biggest fears for anyone with a chronic illness? We value the crap out of the days where we can do stuff -- even "little" things like making dinner for cripes sake. We don't take the hours, or days, or weeks, or months for granted where we feel like we're living rather than just getting by. And, through it all, we never forget the worst it has been for us, which makes it so we can't help but think -- when we catch that cold, or push too hard, or the weather changes too quickly -- that it's going to finally, and permanently, take us back to that life that wasn't living at all.

Driving back from my appointment yesterday (instead of running errands like I wanted to, because my blood pressure plummeted), I thought about people who've gone into remission with cancer. How do they do it? Because God, now there is a fear of a hammer dropping for sure. Holy shit. Seriously, how do they do it? It's like the fear I have but ten-fold. And, in no way am I comparing cancer to dysautonomia but, rather, trying to acknolwedge the freakish badassery of cancer patients -- because with Dysautonomia, I can at least know I'm not necessarily fighting against death.

I also know I am armed with more knowledge now than when I was bed-ridden for 2 years. I know things to do that help and things to avoid. But none of it is a given. My nervous system could just decide to go flooshotty and no amount of water, or salt, or whatever could necessarily right it.

Except, nothing is a given for anyone. No one is guaranteed to wake up tomorrow. I know that platitude as well as the next person. Except, most people don't have to choose between taking a shower or feeding themselves in the morning. And maybe the fear of losing it all keeps me trying my best to live well -- which might not be something most people get to have either.