It means having to stop halfway when going up or down the stairs.
It means needing at least one nap every day in order to function.
It means living in brain fog and forgetting easy words like "spoon" or "parking lot."
It means chronic headaches and fatigue, dizzy spells, and fainting.
Having dysautonomia means a lot of things, but it doesn't mean my life is over.
Life doesn't stop because our bodies aren't playing nicely, and just because we don't feel well doesn't give us license to ask the world to revolve around us. We can find a good balance.
Having dysautonomia means my body doesn't work the way it should. My autonomic nervous system, which is in charge of a lot of the involuntary things my body does, is kind of messed up. Things like blood pressure, heart rate, and adrenaline are all affected.
Dysautonomia manifests itself in many ways. I wake up unable to see straight; I usually sit down halfway up the stairs; I rest on the couch for an hour before making breakfast. Nearly every "event" during the day requires a rest period before/after.
If there's an actual event coming up, whether a friend's wedding or getting coffee for an hour and a half, or even just running errands, I have to prepare by resting up to a full day before, and it could leave me wiped for days after. Which is frustrating because I love going out and doing things with people! #extrovertproblems
Dysautonomia gets in the way of participating in hiking, dancing, walking, and other physical activities because when my heart rate elevates, it triggers syncopal issues--basically, I turn into a fainting goat! And don't even think about popping out of somewhere to surprise me, because I'll pass out from that too, haha.
Sometimes I can't make it to church because I can't see straight and don't have the energy to make it to the garage, let alone drive anywhere.
When I make it to church, listening to the sermon is difficult because my vision gets blurry and spirally, and sounds get jumbled. Have you ever been listening to someone talk and you're 100% sure they're speaking English, yet it sounds like gibberish? That happens all the time.
It even happens when I'm the one talking. Sometimes I have no idea what I just said, let alone how it sounded to others. So that's a fun guessing game!
Having dysautonomia can be frustrating. Especially because we aren't sure yet exactly what type(s) I have, and that means lots of trials and errors when figuring out how to feel better! Some things that have had a positive effect, though, are drinking near a gallon of water every day and over-salting my food (per my doc's request) to keep that blood pressure up and counteract fainting.
Gatorade is my friend because of the electrolytes. I'm always drinking it during work so I can stay upright for the shift and make it home safely. The kiddos at work think it's funny and try to guess what flavors I have on different days.
And it just so happens that my water bottle is ironic, since I am always overheated. Y'all might get cold sometimes but I'm just always trying to keep myself cool! Sweating happens a lot, which sucks when it's 40 degrees and I'm still hot.
Having dysautonomia annoys me sometimes, because if I didn't have it, I think I would've been a different person. I would've been the person I wanted to be--I'd have a college degree, working full-time, much more active and adventurous, and, quite simply, I wouldn't feel sick so often.
But dysautonomia has changed the way I function, my body's capacity for basically everything, and it's prevented me from doing things in the ways I wanted to. I had to adjust school, work, and life in order to keep going. But, some cool stuff has come out of having dysautonomia.
It's teaching me how to be humble, like when I need people to help guide me to a place to sit when I can't see anything. It's teaching me to be positive, especially on days I'm stranded on the couch with dizziness. It's teaching me to be patient, with myself and with others. It's teaching me to take responsibility for myself and not make excuses, because dysautonomia isn't a crutch or an excuse to get pity. It's teaching me about balance in life, including the healthy balance between putting on a strong face and letting people know when I'm really not okay.
Talking about this stuff is important; it's a good topic to bring up about from time to time, because it's part of my life. It's also a part of the lives of many other people.
So for the sake of awareness, encouragement, accountability, and just sharing my life with y'all, I'm going to talk about it sometimes. Cool? Cool.
Go hug a spoonie today! If you don't know what that is, stay tuned. I'll write about it later. ;) P.S. Enjoy the photo of the weirdest thumbs up ever. I didn't even know my thumb looked like that haha. But I digress. Peace out, y'all!
(Photos on this post courtesy of Siri Burlew Photography!)