Day 196-352 (Part 5): Apparently It's Called PoTS (And Nobody Thought To Give Me An Instruction Manual)

13 hours ago
5 min read

So…

Apparently I have PoTS. And Orthostatic Hypotension.

Brilliant.

Tiny problem…

I hadn’t got the faintest idea what either of those actually really meant and how those conditions are going to affect my life going forward.

When the cardiologist first said “PoTS”, I genuinely thought he’d said pots.

As in…

Flower pots.

Plant pots.

The sort of thing you buy from B&Q because you’ve convinced yourself this is definitely the year you’re going to become a gardener.

Spoiler alert…

It never is.

I remember sitting there thinking,

“That’s a very strange name for a medical condition.”

Turns out…

The name is the least strange thing about it.

The cardiologist started explaining how the autonomic nervous system wasn’t working properly.

Now, if you’re wondering what the autonomic nervous system is…

Don’t worry.

So was I.

Apparently I’d owned one for nearly fifty years without ever giving it a second thought.

Rather like my appendix.

Or my spleen.

Or whatever my gallbladder used to do before it packed its bags and left.

The autonomic nervous system is basically your body’s autopilot.

It’s responsible for all the things you never have to think about.

Your heart beating.

Your blood pressure.

Breathing.

Digestion.

Temperature regulation.

Sweating.

Moving blood around your body.

Even things like your pupils adjusting to light.

It’s basically the overworked office manager keeping the whole company running behind the scenes.

Mine had clearly handed in its notice.

Or at the very least, it had decided to work from home with absolutely no intention of answering emails.

The cardiologist explained that what I had was called dysautonomia.

I’d never heard the word before.

It isn’t actually a single condition.

It’s an umbrella term for disorders of the autonomic nervous system.

PoTS and Orthostatic Hypotension are both forms of dysautonomia.

So basically…

I hadn’t just won one prize.

I’d accidentally entered the deluxe package.

The easiest way I’ve found to explain it is this…

Imagine your body is a Formula One team.

Every single member of the pit crew has a job.

One controls the heart.

One controls blood pressure.

One controls circulation.

One controls temperature.

One controls digestion.

They all communicate perfectly.

Until one day…

Half the team decide to go for lunch at the same time.

That’s dysautonomia.

Everything still sort of works…

Just not particularly well.

The cardiologist then explained what happened every time I stood up.

Normally, gravity pulls blood into your legs.

A healthy autonomic nervous system immediately tightens your blood vessels, keeps your blood pressure stable and makes tiny adjustments so enough blood reaches your brain.

You don’t even notice it.

Mine, however…

Reacted like a group project where nobody had read the instructions.

Instead of tightening my blood vessels properly, they were about as useful as wet spaghetti.

Blood pooled in my legs.

My blood pressure often dropped.

Less blood reached my brain.

Hence the dizziness.

The light-headedness.

The feeling I was about to faint.

The blurry vision.

The brain fog.

Meanwhile my heart would panic.

“OH NO! WE’RE NOT GETTING ENOUGH BLOOD TO THE BRAIN! EVERYONE RUN!”

So instead of fixing the problem…

It simply beat faster.

Much faster.

150 beats per minute…

Just because I’d had the outrageous idea of standing up.

Imagine sprinting up ten flights of stairs…

Except you’re actually waiting for the kettle to boil.

That was my normal.

Then there was the Orthostatic Hypotension.

If PoTS was my heart behaving like an overenthusiastic Labrador…

Orthostatic Hypotension was my blood pressure quietly disappearing without telling anyone.

Every time I stood up, my systolic blood pressure could fall dramatically.

No wonder I constantly felt faint.

No wonder the room spun.

No wonder I thought I was losing my mind.

It turns out I wasn’t.

My circulation simply wasn’t playing by the rules anymore.

Then everything else suddenly made sense.

The exhaustion.

The dizziness.

The racing heart.

The blue feet.

The freezing cold.

The internal shivering.

The hot, itchy toes that had convinced me I was about to become Britain’s first Smurf amputee.

The heat intolerance.

The brain fog.

The feeling like I’d run a marathon after loading the washing machine.

It wasn’t fifty different problems.

It was one faulty operating system creating chaos everywhere.

Then the cardiologist said something that really made me stop and think.

A lot of people develop dysautonomia after a viral infection.

Including COVID-19.

Suddenly…

The timeline made perfect sense.

The pieces I’d been desperately trying to force together for months finally clicked.

It was never laziness.

It wasn’t lack of fitness.

It wasn’t because I was getting older.

It wasn’t because I was perimenopausal.

It wasn’t because I needed more vitamins.

And no…

It definitely wasn’t because Mercury was in retrograde.

And most importantly - it had absolutely nothing to do with me being on Mounjaro...

Can we also have a quick chat about anxiety?

Honestly…

If one more person had suggested anxiety, I was going to start issuing invoices.

Apparently anxiety can now explain absolutely everything.

Headache?

Anxiety.

Palpitations?

Anxiety.

Feeling faint?

Anxiety.

Blue feet?

Probably anxiety.

Honestly, if I’d sneezed while wearing odd socks, someone somewhere would’ve blamed anxiety.

Look…

I have anxiety and panic disorder and I am medicated...

I know exactly what it feels like.

This wasn’t anxiety.

This was my body physically failing to regulate itself.

There’s a huge difference.

Over the following weeks I had more assessments, including an active stand test and a tilt table test.

If you’ve never heard of either, imagine paying professionals to repeatedly make you stand up while attached to enough monitors to launch a space shuttle.

Very glamorous.

The results confirmed just how dramatically my body reacted to standing.

My heart raced.

My blood pressure dropped.

My symptoms appeared almost immediately.

Watching the numbers on the screen was surreal.

For months I’d felt like something was wrong.

Now I could actually see it happening.

There it was.

Proof.

Not in my head.

Not exaggerated.

Not imagined.

Real.

Walking out of those appointments was a strange mix of relief and grief.

Relief because I finally knew what I was fighting.

Grief because I also knew there wasn’t a magic tablet that was going to make it disappear overnight.

The consultant explained that dysautonomia affects everyone differently.

Some people faint.

Some never do.

Some improve significantly.

Some stay about the same.

Some can still run marathons.

Others struggle to walk to the kitchen.

It’s basically the medical equivalent of a lucky dip.

Except nobody actually wants the prize.

I left carrying leaflets.

Leaflets.

You know you’ve officially joined a club nobody wants to be in when you’re handed homework.

When I got home, my boyfriend asked,

“So… how did it go?”

How do you answer that?

“Good news… my heart itself is perfectly healthy.”

“Bad news… apparently standing up has become one of my body’s least favourite hobbies.”