Ways orthostatic intolerance is ruining my life

It’s debilitating.

“Orthostatic” means upright activity, like sitting or standing.

The “intolerance” aspect is that my heart jumps about 35-40 bpm upon standing.

My systolic blood pressure increases, while the diastolic stays mostly the same, e.g. 104/67 laying down (supine) to 128/87 after standing for about a minute, with a pulse jumping from 70 to 97 and continuing.

Basically, I have hypertensive blood pressure when I stand up.

I have ~9000-11000 mg of sodium everyday.

Just to function.

I think of it as like,

• lights on = adequate sodium for functioning
• flickering lights = not enough, yet not too little (yet)
• lights off = no/critically low sodium intake

I’ll have about 6000-7000 mg sodium through fluids, then the rest through food.

Foods I used to avoid because I found them too salty — like potato chips and Ritz crackers, except in specific circumstances — taste quite bland to me now. Cheetos aren’t salty to me anymore, either.

At least not after I’ve hit 5000 mg sodium.

More recently, I went to the ER because my electrolytes were all off, my GI tract shut down, my body wasn’t holding onto any sodium at all, and I’d had a recent fall after being tachycardic for a day.

I was given a 1000 mL lactated ringer bolus in under an hour, discharged, drank more LMNT at home.

My skin stopped being translucent white vampire, which validated my claims that my skin was not naturally so pale. That the pallor was a symptom.

Sodium is my “magic cure”

I feel like my family obsessed so much over a “magic cure” to make me “normal”. Some version of me they wanted to fit into a mold, even if they had to stuff me in and sit to snap the mold shut.

Sparkling LMNT looks like an energy drink, so at first I felt cool drinking it because do you know how my retail employees drink Monsters? But LMNT is literally an energy drink for people like me.

I need sodium and water for fuel, not caffeine. Actually, I really struggle with caffeine and end up feeling like total shit.

I DON’T drink plain water.

Initially, I was stubborn and wanted plain water.

Now, I’m familiar with how it makes me feel enough that I can’t tolerate it. I’d felt this way for about six months prior to being told to not drink plain water, but…I thought I was just addicted to electrolyte packets. 😅

Water in recipes is replaced with broth.

Any water in soup or, like, boxed meals is replaced with broth ’cause I NEED the sodium.

Last year, I’d accept low- or no-sodium broth substitutions, but feel like trash after eating the dish. Now, I know why!

Eating my sodium is somewhat easier, because there can be over 1000 mg of sodium in one serving, whereas I can only drink that much in minimum 20oz or else I’m going to be sick.

And it’s, like, the only way I can tolerate eating regular-sized (ish) meals without fainting afterward.

Having to rethink my life long-term

Where I saw myself prior to this was not that different.

But now, I know I need insurance for certain prior to becoming a full-time blogger.

And I know that becoming a full-time blogger IS the best route for me.

Because of chronic illnesses.

Before all this, my needing to run my own business felt like a concept instead of a path I needed to take…probably because I’d buckle at other people’s criticism so much.

I’ve accepted orthostatic intolerance and that other people don’t really, fully understand what it means.

It’s not one-and-done, though; it’s constant. Reminders pop up, like dropping my phone on the floor or walking too fast or standing for too long in one place.

Learning how to pace myself

The biggest part of all this is, I’ve had to learn to pace myself.

Feeling capable in the moment doesn’t mean I can do the thing.

Or if I do do something I can do, it might cost me something later — like a fall, sleep, retaining a meal after eating it, etc.