We were at Barnes and Noble, one of our favorite weekend hang-outs. I’d been feeling… cloudy… that morning, but dammit I’d been basically glued to the couch all day Thursday and half of Friday and we barely did much of anything Saturday. I could power through this slump. So we continued with our plan to run a couple errands and then swing by B&N for a book or two or six.
I had selected my choice in the YA Fantasy section (judge me after you read a few modern-day YA fantasies, then we’ll talk, k? Sarah J. Maas converted me, and I won’t apologize for it!), and was carving the familiar path toward the Business & Technology shelves, my husband’s usual nerd category of choice.
As I passed the info desk, the fog clouding my head mutated. The peripheries of my vision blurred, and my legs melted to jello. I swallowed the spike of panic I felt leap in my chest (later, I’d discover it was a heart rate spike to 159 bmp from standing after selecting my book on the bottom shelf), and casually stopped at a sales table, leaning against it and pretending to peruse the titles, raking in a few deep breaths and testing the weight in my legs every few seconds.
Hmmmm maybe I should have brought some water… The voice in my head was calm, casual, as if I was soothing myself. I took a few more breaths and pushed away from the table. I found Matt, grabbed his hand for some stability, and told him, “I’m not feeling great.”
That’s how I always say it. Because I don’t feel awful. I don’t feel like death. There are people in the world much sicker than I, who are fighting for their lives, and I’m sure they feel a lot worse than I do. I’m just fighting to stay vertical. Much less concerning. So I just don’t feel great.
We discussed how we might rectify this as we checked out. We grabbed a salty snack at the cafe, and stopped at Publix to read nutrition labels of sports drinks (as I refuse to fall victim to another sugar addiction just because I need more salt and potassium in my diet – dammit). I clung to my husband as we walked the aisles, as we checked out, as we walked back to the car. When we got home, I changed back into sweatpants and crashed on the couch, exhausted and thankful I’d remained conscious, but racked with guilt while Matt continued the planned chores for the day.
This is living with P.O.T.S.
I define POTS as “a minor heart condition.” Mostly because heart conditions are often pretty serious, and although POTS is kind of serious, it’s not one of the ones that means you’re constantly on the brink of a massive coronary, so I think saying “it’s a heart condition,” is a little misleading.
Plus, if I’m being honest, I really don’t like the idea of people making a big deal over it.
I’ve spent the last year trying to not make a big deal over it. Over a year, since I’m trying to be honest and all. For almost eighteen months, I’ve subtly planted my hand on the back of a chair or the corner of a table. I’ve casually leaned against a doorway, or column, or perched on the edge of a desk. Mindlessly allowed my fingers to test the texture of a wall or banister while I strolled. I haven’t let people know that I’m aware of where the closest bathroom is, so if I start to feel the heat radiate through my limbs, I can excuse myself and waste no time before locking myself in a stall, sinking down to the cool tile floor, stretching my legs out in front of me until my heart rate comes back down and my vision clears. I’ve carefully excused myself to stand in front of a fan or in a cooler room, silently praying I make it to somewhere private before I collapse. I haven’t counted the number of times I’ve opened my eyes after a dizzy spell, wondering if I lost consciousness or how long I’d been out.
I thought I didn’t want to make a big deal about it before because it didn’t have a name. The doctors didn’t know how to treat it. After all the tests were done, they still had no answers, they just knew they couldn’t fix me, and that was enough for them. At that point, I just wanted to get home to my husband, where I could comfortably hide my symptoms in peace, where maybe I wouldn’t have to explain myself every twelve seconds to every passer by that I lose consciousness sometimes and we don’t know why. Where I could have rights as a patient first, and not as a soldier, forced to respond with “Yes, Sir” when a doctor didn’t meet my eyes to say “there’s nothing we can do – it’s probably just anxiety.”
In the service, I sought treatment for ten months. I saw six medical professionals, three of whom were specialists. As a civilian, it took less than two months and only two doctors, one of them the cardiology specialist that diagnosed me last week with a dysautonomia condition called Postural Orthostatic Tachycardia Syndrome, commonly dubbed “POTS.”
It means my cardiovascular system doesn’t work the way it’s supposed to. It means my heart goes into overdrive trying to regulate my circulation, often directing all of my blood to the body part or organ most in need, and neglecting everything else. It means when my legs are tired, my blood pools there, and my heart can’t get it back up to my brain, causing dizziness, and, sometimes, loss of consciousness.
So, maybe, it is kind of a medium deal. Not a big deal, but not a little deal either. Just sort of in the middle.
I know now that I haven’t been fair to myself this past year. That I’ve been lying to myself and everyone I love about the severity of my symptoms.
Maybe part of it was the stigma that comes with wearing the uniform, that you always have to appear strong, invincible, invulnerable, immovable… you get the picture. That, as a general rule, the military assumes that if something is physically wrong with you, it’s a direct reflection of your character. That you’re defective, broken, less than human. Maybe it’s that I’ve always been fiercely independent, that I’ve never wanted to need help, or appear to need help. That since college, I have hated feeling dependent on another person, for literally anything.
And this past year, I have been battling with trying to not be burden, or an inconvenience to everyone else. I hate feeling weak. I hate sitting around on flare up days, unable to be active or productive or to even think clearly. I hate that when I do push through the symptoms, I wind up lying on some flat surface somewhere, wondering if I lost consciousness or not. Wondering when the last time was that this floor was cleaned. Wondering if this store knows they have ketchup stains on their ceiling. Or at least I hope those are ketchup stains.
POTS is treatable, even to the extent of manageable, but it could take months before I have a handle on it, and I don’t want to lie down on anymore strange tile floors. I don’t want to diminish my symptoms anymore, saying “please don’t make a big deal, I’m fine!”
I’m not fine. I’m not bad, either. But I’m definitely not fine.
I still don’t want a big deal. I don’t want pity either – I will figure this out. What I, and many others with chronic, and often “invisible” illness need, is understanding. Understanding that sometimes we’re not feeling great, and it would be awesome if maybe you didn’t try to push or doubt us.
So we’ll meet in the middle, maybe. Make a medium deal. Just while I figure this thing out, then we can go back to making a little deal. Or no deal at all? Eh, one step at a time.
Future Goals for this post: Add an adorable montage containing photos of my dog, Ruger, who likes to lay down on my chest when my heart is racing. He knew before I did how to make me feel better. We don’t deserve dogs. See my other web development goals here!
