HyperPOTS: Another Piece of my Story

 

Smiling. Standing. I look normal. I look healthy. But what you don’t see is my autonomic system geeking out. You don’t see my heart plummeting and within seconds, shooting through the roof. You don’t see my vision going, my hands shaking, my legs pooling, or my brain fogging (is that a thing? It is now). Sounds dramatic I know, but that ain’t even the half of it and it’s just the ugly reality.

Medical cliff note: There’s a lot that goes into POTS, but to put it simply, everything that is supposed to be automatically regulated is not. (Heart rate (!!!!), Temperature, digestion, and so much more.) Cliff note to my cliff note: Those who have hyperPOTS (me, whoopee!) have extremely high levels of adrenaline, in other words, they are forever in fight or flight mode.

Okay, back on track. I’ve been getting increasingly sicker in the last few months and the heat has made it that much more of a struggle. My sweet husband planned a day out in cooler weather and it was so nice. So nice to be out of the city with my person and so nice to be in...less hot(?) weather. But it’s also hard. Hard seeing people my age hiking and seemingly unfazed by the heat, by walking, by standing. It’s hard having to solely depend on my husband when the dizziness has gone to loss of vision and I can feel my brain prepping for a syncopal episode. Days like this just get me thinking.

Yuck, it is just hard. My body is exhausted and running on empty, my immune system doesn’t stand a chance and no one has any answers or solutions. It’s a vicious cycle that runs you to all the doc’s under the sun. Chronic illnesses are more than the pain you feel or the limitations you have. They can be emotionally debilitating and give you a million things to overthink.

The biggest ones:

1. I don’t look sick.

2. How can I be myself and sick at the same time. (hellloooo overthinking)

Regardless of the fact that I don’t look sick, I am, but that’s not all that I am. I am happy and outgoing, determined and hardworking, hecka stubborn and sick at. the. same. time. This has been a hard pill for me to swallow. For so long, I felt like it was impossible to be all those things AND be sick at the same time and if I was all the things then people would think I am just making it all up and I’m actually perfectly healthy, which couldn’t be further from the truth. but I’m slowly learning I can and I am, and I need to stop caring about how my illness looks from the outside looking in.

To the POTsies out there: POTS can have such a hold on you physically, mentally, and emotionally. You have a limited amount of energy to begin with, don’t waste it on worrying about whether people understand you’re sick even when you slap a smile on and try to blend in. (This one is such a daily battle) Sorry, rant over.

I tried to fight my illness for a long time (sometimes I still do, but I’ve gotten a lot better). Fighting it didn’t do diddly squat, except exhaust me further. The bottom line is that POTS changed my life. I have limitations whether I like to admit it or not. But I’m learning how to live with those limitations. I’m learning how to express my needs, how to sit down and rest when all I want to do is the dishes or the laundry (you have no idea how much these little chores mean until you can’t physically do them the same). I’m learning to reserve my energy for those who reserve their energy for me. I’m learning to care less about how it looks and care more about how I feel. I’m learning that the stool that sits in my shower isn’t a humble pill, but a serious spoon saver (that ones for you, fellow spoonies!). I’m learning that saying no to things isn’t selfish, it’s just me listening to my body. I’m learning that sitting on the ground in line at Marshall’s may get me weird looks, but it’ll keep me conscious and that is worth it. I’m learning it’s empowering to slow down, listen to your body, and voice your needs and that maybe just maybe people will surprise you with their understanding (or maybe they won’t, but you don’t need them in your life, girlfrand.)

I’ve received emails from people who suffer from the same illness and their messages have encouraged me to talk more, to share more. Which is scary for a lot of reasons. BUT those messages are also the reason why I’m sharing now. Talking helps in so many ways and once again, it’s taught me a huge lesson. There is power in sharing. 

I’ve always been an open book, but when it comes to my condition, I’ve always felt like it’s something to be hush hush about. I mean after all, it’s a chronic illness and any type of invisible illness is taboo to talk about; it’s sad, but true. Because talking about it makes you an attention seeker, a faker, or even a lazy complainer, right? WRONG. Quite the opposite actually. Talking about it is brave. Talking about it is healing. It’s healing for me, it’s been healing for my potsie friends, it’s just plain old healing.

So I’m going to share and (try) not (to) care. I may be judged. I may be misunderstood, but I may be encouraged, I may be inspired, and I may be empowered. I already am.

HyperPOTS is just another part of my story, so heck, why not share it!