I wish this was the story for more women. This is the first time I’ve been taken seriously in forever. My faith is restored. I’ve spoken before about having FND which I got gaslighted about. It affects the central nervous system but I’ve had symptoms that also fit in with POTS, to be honest, I’m sure I’ve had them longer than the FND ones if I think back to when I was younger. With the symptoms getting progressively worse for me, I had 2 drop attacks where I had no awareness because I was essentially blinded by darkness, when my awareness came back I was shaking. This was all because I stood up and my body can’t regulate blood. I decided it was time to suck it up and get help. I always dread having to even attempt that. Luckily, my watch speaks for itself when it’s constantly pinging because my heart rate is too high and won’t go down. That was only off standing, nothing insane. I talk about my symptoms and I’m listened to. Something that blew my mind completely. Friday 23rd, I am having an ECG, more bloods (kill me) and an active standing tests to hopefully get the answer I need. I mean it’s pretty obvious at this point when I fit the entire criteria. I’m still scared either way, ironically I’d say I’m more scared of getting lost finding the room. It nearly happened, the place is a maze and I am not good with directions or should I say their directions aren’t great.

Pots is a type of dysautonomia. Postural orthostatic tachycardia syndrome. The autonomic system is supposed to regulate the bodies involuntary functions of the body which include: heart rate, BP, temperature regulation hormones and more. Mine has not worked in a long time, what do you mean I am absolutely melting in the freezing cold or I’m so cold that I feel too warm. In the boiling weather, my hands are ice cold while I feel I’m gonna pass out and smack my face off the floor. It’s completely intolerable. My hormones are crazy to the point I have rash flares on my arms and when they finally heal, they come back a bit later.

People have no idea how horrible these symptoms can impact, if it’s not one thing, it’s another. Not being able to reach above your head or stand too long without blood pooling. When all the blood pools you want to puke.

I was on the metro the other week, well, jammed into the door if you call it on. I couldn’t grip to anything, it was all the horrible things combined. I couldn’t even move when I got home, I was so sick, if I’m moving it helps regulate things but the moment I stop, it feels like a ticking clock.

I wish it was more understood, it’s not some “trend” it’s not “cute” it’s actually very ugly all around.

Update: I survived only just from the assessment. My vision went dark and if I didn’t sit down it would have been a scary situation. I wasn’t okay for 2 days but day 3 and I am better.