Day 358: Satan, Scrambled Eggs, A Train Full Of Imaginary Friends & My Shoulder's Personal Vendetta

Jul 10
6 min read

Honestly…

The last couple of weeks particularly but I would stretch as far as few months (- the temp), have felt like I’ve accidentally been selected for some new reality TV show called “Survive If You Can.”

Temperature? Approximately 100 billion degrees.

Sleep? Cancelled.

PoTS? Thriving.

Shoulder pain? Operating on a level previously only achieved by medieval torture devices.

I genuinely think these have been the worst three weeks I’ve had in a long time.

You know it’s bad when you wake up exhausted… after doing absolutely nothing except trying to exist.

Apparently even lying in bed has become an extreme sport.

Can we also discuss fans?

Every single fan I actually like is sold out.

Every.

Single.

One.

Apparently Britain collectively looked outside, saw the sun and thought:

“Quick! Buy every fan in the country before Jabatha gets one.”

The only ones left are either the size of Heathrow Airport’s jet engines or look like they belong in a 1994 office where Dave from Accounts still uses Windows XP.

At this rate I might get one…

…for Christmas.

Now…

Good news!

I jabbed yesterday.

Hello again, suppressed appetite.

I’ve genuinely missed you.

It’s weird how excited you can become about not wanting food.

Normal people celebrate pizza.

I’m over here celebrating because my brain has finally stopped screaming,

“Go and see what’s in the fridge for the eighteenth time.”

After jabbing, I also noticed something I haven’t had for ages…

That lovely raised, itchy patch on my thigh where I injected.

Ah…

Hello, old friend.

I was almost worried you’d forgotten about me.

Nothing says “successful injection” quite like your leg deciding to cosplay as an angry mosquito bite.

Oh… and while we’re welcoming back old friends…

That weird, familiar taste in my mouth has also decided to make a comeback.

Lovely.

Every now and then I get a random retch out of absolutely nowhere, just to keep life interesting.

And of course… my taste buds have once again entered their dramatic era.

Anything salty now tastes about 700% saltier.

Anything sweet tastes like someone emptied an entire sugar factory into it.

It’s honestly fascinating how one tiny jab can turn your mouth into a completely different operating system.

The side effects really do have a way of saying,

“Surprise! We missed you.”

Speaking of food…

Breakfast before the jab was… eventful.

I was making scrambled eggs…

…and my heart rate shot up to 140 bpm.

Now…

Was that PoTS?

Or…

Had my stomach simply become egg-cited because I hadn’t had scrambled eggs for ages?

Honestly…

I LOVE scrambled eggs.

But they don't love me after my gallbladder removal...

Shame!

But I am not going into any of details here and you know why!

I also sprinkled some crispy chorizo crumbs over the top.

And maybe my heart wasn’t reacting to standing up.

Maybe it just saw the chorizo and thought,

“LADS… THIS IS NOT A DRILL!!”

Either way…

According to my watch…

Making breakfast now apparently counts as cardio.

Olympics 2028…

I’m entering the Scrambled Egg Marathon.

Talking about my watch…

I’ve been tracking my activity loads recently because I wanted to understand what actually sends my body into meltdown.

And that brings me onto something I know loads of my fellow PoTSies ask about…

The Visible Band.

Honestly…

I’ve found it fascinating.

If you have PoTS or another form of dysautonomia, one of the biggest challenges isn’t just doing too much…

It’s realising you’ve done too much after your body has already started filing complaints.

Visible helps with pacing and exertion.

Instead of waiting until you’re completely wiped out, dizzy, shaky, seeing stars and questioning every life choice that got you to this point…

...it gives you a better idea of how hard your body is actually working.

Because here’s the thing with PoTS…

You can feel absolutely fine…

Then carry two shopping bags…

Walk upstairs…

Brush your hair…

Stand making scrambled eggs…

And suddenly your body behaves like you’ve just completed the London Marathon wearing a winter coat.

It’s taught me something really important.

Rest isn’t failure.

Pacing isn’t laziness.

Sometimes stopping before your body forces you to stop is actually the clever bit.

I’m still learning though…

My body occasionally sends mixed messages like,

“You’ve still got 10% battery.”

Five minutes later…

System shutting down.

Yesterday I worked from home until the afternoon…

Then it was time for the trip to London.

In that heat.

On a train.

Armed with nothing but a tiny portable fan that was doing the equivalent of one hamster gently blowing in my direction.

Absolutely useless.

I think it cooled approximately one eyebrow.

Thankfully my amazing boyfriend came with me.

Partly because he’s lovely…

Partly because I suspect he was worried I’d accidentally kick the surgeon in the face if the needle went in too far.

For the record…

I actually cope ridiculously well with pain.

Which leads us nicely onto one of the longest-running jokes in our house…

I don’t take painkillers.

Ever.

Unless…

I’ve got flu.

A proper virus.

Or my back decides today’s the day we’re all suffering.

Otherwise?

Nothing.

I could probably be hanging off the side of a cliff with one arm and someone would ask,

“Do you want some paracetamol?”

I’d still say,

“Nah… I’ll see how it goes.”

At this point my boyfriend doesn’t even ask anymore.

He knows the answer.

It’s become less of a question…

More of an accepted personality trait.

Now...

The actual procedure.

How do I even explain what I felt?

Imagine Satan himself grabbed hold of my shoulder…

Reached inside…

Wrapped both hands around my muscles…

And attempted to remove them through my armpit.

That was roughly what it felt like.

There was pressure.

There was stretching.

There was burning.

There was a moment when my soul briefly considered relocating to another postcode.

Honestly…

I wasn’t entirely convinced my arm was still attached afterwards.

After the procedure, the surgeon warned me…

“Your arm is going to feel like someone’s poured concrete into it afterwards.”

Well…

He wasn’t lying.

He absolutely nailed that prediction.

I genuinely thought B&Q was missing a bag of ready-mix.

My shoulder felt like it weighed the same as a small family car.

Lifting my arm required planning, commitment and probably planning permission.

It felt like someone had replaced all my muscles with wet cement, left it to set, and then occasionally poked it with a cattle prod just to check it was working.

Every tiny movement sent an official complaint straight from my shoulder to my brain.

I’d have rated the experience somewhere between stepping on Lego barefoot and being personally audited by Satan.

Zero stars.

Would not recommend.

Unless your hobby is voluntarily allowing strangers to remodel your shoulder from the inside.

The strange part?

Once the local anaesthetic was still working…

I actually felt surprisingly okay.

So naturally…

We went out for dinner afterwards.

Because if your shoulder has just been professionally assaulted…

Food seemed like the logical next step.

Then came the journey home.

Oh.

My.

God.

The anaesthetic wore off halfway through.

Bad timing.

Very bad timing.

I was trying incredibly hard not to cry.

Keyword…

Trying.

I may…

Possibly…

Potentially…

Have leaked a couple of actual tears.

Not because I’m dramatic.

Because my shoulder had declared war.

Then there were the crowds.

Every train seemed to be delayed or cancelled…

So the station had apparently gathered every human currently living in Britain into one carriage.

All I wanted was for nobody to bump my arm.

Simple request.

Apparently impossible.

Every person with a backpack became an immediate threat.

Every sudden movement looked like a potential shoulder assassination attempt.

And can we have a quick chat about…

The aisle-seat people?

You know the ones.

They sit on the aisle.

Their rucksack gets the window seat.

The actual empty seat remains unavailable because…

Apparently…

The bag is travelling first class.

I often wonder if they’re having full conversations.

“Would you like a drink, Mr Backpack?”

“Window okay for you today?”

“Hope you’re comfortable.”

Meanwhile the rest of us are performing advanced yoga moves trying to squeeze past without ending up sitting on someone’s lap.