– a stream of consciousness blog post

(Written by Someone Who Barely Knows What They’re Talking About Because the Brain Frog Has Taken Over)

*Note: everyone’s symptoms are different, you may or may not relate to this

Being kicked in the face is my villain origin story.

So is salad.

The first time I passed out, it was maybe 4 AM, and I landed on the ground next to the bed. Jakob found me when he got up to go to the bathroom and kicked me in the face.

I have more bruises than freckles at this point because I can’t stop knocking into things, and whenever I pass out, my knees slam on the floor first.

I have POTS and EDS, two forms of dysautonomia that cause flare-ups and make me struggle with the most mundane of things.

If I had to explain what life is like with POTS/EDS flares to someone who doesn’t have POTS/EDS, I’d probably say: imagine you’re standing completely still, but your body feels like you’re jumping in a moving elevator. And not just any elevator – the glass one from Willy Wonka’s Chocolate Factory. It’s going at warp speed, and your joints think they’re on a slip ’n slide, and also, for some reason, the elevator is on fire now.

The first thing I notice when I’m flaring is that the second I stand up, I feel like I’m standing on an inflatable raft in a tsunami. It’s gotten to the point where I trust my legs less than I trust politicians, because sometimes my legs fall asleep while I’m actively using them, and down I go.

Not only do physical activities take me down (literally), but I also have to be very mindful about what I’m putting into my body, and in the most backwards way.

The almost immediate rejection of most vegetables has been the weirdest part for me. If you’d told me as a kid I couldn’t eat veggies, I’d be psyched. But at 27, I just want to eat a salad without seeing it again afterward.

The most optimistic thought I’ve had recently that dysautonomia immediately humbled me for was, “I’ve been feeling pretty good lately, maybe I can try to eat a salad again,” and then the salad came back up to congratulate me an hour later.

In stark contrast to my toxic relationship with salad, fries have always saved the day.

The autonomic nervous system is in control of all the things your body is supposed to do without you thinking about it – like breathing, regulating heart rate and blood flow, digestion, and other things that my body has decided are too mysterious to figure out.

Living with POTS/EDS means constantly negotiating with my own nervous system, who seems to always think I’m in a traumatic event and therefore need to be in survival mode at all times. If my body had an HR department, I’d storm in and demand that my autonomic nervous system get fired.

I think the worst advice I’ve ever been given about my health was that “it’s all about your mindset,” that the suffering with this kind of thing is “all in your head.” Like, yeah, POTS is a neurological disorder. There is quite literally something wrong with my nervous system.

And then there’s brain fog, when your mind gets too cloudy to function properly and you get confused more easily and often say things wrong, like ironically calling it “brain frog.”

The worst is when my words get jumbled around inside my head (I guess because my blood decided to go all the way down to my legs and basically tell my brain “screw you”), and I say something that makes zero sense at all.

The one I can never seem to live down for my husband is the time he heard me sing, with the most confidence I’ve ever sung, “I’m too hot, hot cold.”

Similarly, I don’t always get to finish my sentences. Once, I was getting ready in the morning and talking to Jakob, and I just dropped mid-sentence, out cold – because, like so many others with POTS, my spirit animal is the fainting goat.

I often open up my phone to Google something and immediately forget why I needed Google. Then I just Google “Google.”

If brain fog were a person, they would win the Darwin Award.

I always lose words from my vocabulary on bad days, and I find myself playing twenty questions with myself out loud trying to get them back, sometimes celebrating a little too much when I finally retrieve one.

The desperate confusion also leads me to forget the most basic self-care tasks.

I need to hydrate way more than the average person, but I can never remember to hydrate even as much as the average person needs to. Jakob ends up asking me, “Do you want to spend $250 in the ER again just to get another liter of water directly sent into your blood?”

I hate to break it to him, but I am not a cheap date.

And also I hate the hospital because the chairs are horrible and they bring on the costochondritis.

Usually, the first sign that I’ve made a horrible mistake in determining my energy levels for the day is rib pain. If I walk like three steps too far, costochondritis will end me.

I don’t schedule anything back-to-back anymore unless I want to be back-to-floor.

Some days I just take the L and lie down in public.

Whenever I go to public places like Hersheypark, I can use an ADA pass so I don’t have to stand in long lines and get sick. But because my illness isn’t visible, people give me weird looks, and I can tell some people get mad that I don’t have to stand in line as long.

Frankly, I’d rather be able to stand in the line too. And I think they’d probably be angrier if a ride had to temporarily shut down because I passed out in the queue.

People always assume that people like me are faking being sick. To be honest, most of the time I’m faking not being sick, and I deserve an Academy Award for it.

It’s one thing to deal with strangers witnessing chronic illness, but it’s a whole other thing to deal with friends witnessing it.

It’s weird living a life where I have to answer questions like, “Do you want to grab coffee in like an hour?” with, “I’m so sorry, I can’t. I just showered, and now I need to take a nap before the nap forcibly takes me.”

So many lovely, well-meaning people try to give me advice regularly, and unfortunately, everything they say is a crock of BS they could never fully understand.

I often wish people would understand that I don’t need (or want) unsolicited medical advice from people who obtained their credentials from WebMD.

I wish people would stop confusing my illness with laziness.

I am lazy, but not because of this.

I wish instead of judgment, people would assume that I’m just dehydrated or something (because, to be perfectly honest, that is usually also the case).

Strength nowadays looks like managing my symptoms (to a reasonable extent) and continuing to live a life where I can spend meaningful time with my loved ones and make fun of myself.

Disclaimer: I am struggling with the struggle, but at least I am the only thing tough enough to fight me and win.