The reality of HyperPOTS
At a glance, this illness seems like a college girl’s dream. Always in leggings (compression), watching lots of Netflix, eating bad salty food, and not working (because you literally can’t handle any form of stress) Toward the end of this post is the reality. I try hard to be upbeat and positive because it helps me get through it, but days like yesterday, those are the days that you can’t ignore.
Yesterday was a bad day. Yesterday was the much-anticipated fallout of all my positivity and energy I spent getting through this week. I knew I was overdue. It’s the most I’ve walked and talked since Christmas time. I woke up at 6 and I knew. I could feel it all like a snake poised to strike. I went to the continental breakfast not caring about fluffing my hair, putting in glasses/contacts, no makeup just schlepped my way with my mom. One half-eaten waffle later we went back to the room. In the darkest room we were able to make with large pillows and a tall chair blacking out the window I laid quietly. The left side of my chest hurt. I laid there clutching it quietly. My blood pressure cuff automatically went off every ten minutes and it created a throbbing pain and with the prolonged and constant measurements, it began inducing palpitations. My skin was raw and red where the four electrodes clung to me. I could already tell the lower two on my ribs would bleed when I removed them.
My mood was bad. It’s rare for me. Sad every once in a while but never really bad. I was grumpy. I hate being grumpy. I hate trying to not be grumpy but anything I said sounded grumpy and short. So I kept quiet under the extra blankets we ordered for my freezing body. I was relatively nonverbal yesterday. This happens on bad days. Talking seems impossible on these days. That’s how everyone knows I’m sick. When I can’t talk.
My friend was supposed to come down and I thought it’d lift my spirits so I looked forward to it. I took a warm bath to calm my constant shivers. 6 minutes later I was out and my legs were angry red with pooled blood and I was so swollen I couldn’t bend my ankles. I was even worse now. I was exhausted. We had to cancel our plans and the harsh reality of my current limitations were once again, in my face.
Toward the end of the night, I felt a little better. By my Apple watch’s count, I’d taken 38 steps since breakfast. After laughing at some videos with my mom I turned over with my headphones in. When getting settled under the blankets, the button volume on my watch must have been moved because the sound went all the way up during Bazzi’s 3:15. This may not be a big deal to most. A minor inconvenience to some. To me it was catastrophic. I yanked out my headphones. Due to my HyperPOTS with high norepinephrine levels, my body freaked out. I began to full on sob. Uncontrollably sob. I couldn’t stop. It was just sound. But I couldn’t handle it. My mom came to my bedside confused and trying to figure out what happened. My pulse jumped by almost 40 beats per minute. My blood pressure dropped and my body temperature went up. Her touch began to panic me and caused my temperature to spike even more. I pushed her away and threw off the covers only to desperately grab them again seconds later to calm the shivering and tremors. I kept sobbing. And sobbing. And sobbing. Trying to breathe deep and acknowledge that all that happened was just a loud noise. I was safe. It didn’t matter. You can’t outthink chemical reactions in your body when it’s like that.
These are the moments that are hard. Because by no means should a song playing a little loudly trigger a five-alarm fire response, but it did. And it will continue to, for the foreseeable future. I did find a way to disable the music controls but holy buckets.
I’ve been so spoiled being able to medicate in Portland with potent CBD so I haven’t had one of these episodes in months.
Sometimes I need these moments. I need to feel what I’m going through this deeply so I remember to give myself grace. I need to acknowledge where I am. Despite countless motivational quotes, there are certain things you can’t do. (Not right now anyway.) I spent a whole day catering to my needs and nursing myself to a somewhat stable condition only to break down over a volume increase.
That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that. It truly turns your life upside down.
potsiemouth 