Day 360-361: The Weekend That Almost Behaved… Until It Didn’t

1 day ago
7 min read

You know those weekends where you think:

“This is it. This is the comeback weekend.”

Yeah…

Mine submitted a complaint to management.

Saturday (Day 360)

I remember waking up during the night with my heart absolutely galloping.

Not because my body had decided to malfunction for absolutely no reason (although that’s always a possibility these days).

No.

I’d had the most ridiculous dream imaginable.

There was apparently a burglar hiding in my wardrobe.

Not stealing anything.

Just…

Hiding.

Watching.

Existing.

My subconscious really has Netflix-level writers.

I’m blaming the cheesy enchiladas.

There is absolutely no scientific evidence that enchiladas can create imaginary wardrobe burglars, but until someone proves otherwise, that’s my official diagnosis.

Eventually I drifted back to sleep.

Weird.

Very weird.

Now…

The Shoulder Saga™.

Honestly, I think this shoulder deserves its own Netflix documentary by now.

Episode 1:

“It hurts.”

Episode 2:

"It still hurts.”

Episode 3:

“Hydrodilatation.”

Episode 4:

“Is it working?”

Episode 5:

"NOBODY KNOWS.”

At the moment it’s popping.

Clicking.

Crunching.

Occasionally sounding like someone walking across bubble wrap.

Apparently…

That’s actually a GOOD sign.

Who knew?

If your shoulder starts sounding like a bowl of Rice Krispies, congratulations.

Progress.

It’s still sore though.

Originally I was telling everyone I’d know by Tuesday whether the injection had worked.

Ha. Ha. Ha.

Apparently not.

Turns out these injections can take FIVE TO SIX WEEKS to reach their full effect.

Five.

To.

Six.

Weeks.

Which basically means every single twinge, click, pop, ache and random stabbing sensation over the next month and a half will have me asking:

“Is this healing?”

“Is this worse?”

“Is this normal?”

“Have I broken it?”

“Should I Google it?”

(No. Never Google it.)

So for now it’s a waiting game.

An expensive, noisy, crunchy waiting game.

First thing in the morning I checked my Visible app.

I nearly applauded.

My Pace Points threshold is 29.

Friday had nearly ended me.

But somehow…

Somehow…

I finished on…

28.9. Not 29.

Not 29.1.

28.9. I literally survived Friday by 0.1 Pace Points.

It’s like finishing a marathon and collapsing one centimetre after the finish line.

Friday…

You were something else.

Looking back now, I genuinely think it was probably my second biggest POTS flare-up yet.

No wonder I felt like I’d been hit by several buses.

Driven by other buses.

Meanwhile…

My poor boyfriend had to go to work.

Bless him.

Imagine leaving the house to earn money while your girlfriend is lying on the sofa discussing electrolyte flavours with herself.

Life really is about balance.

Me?

My only objective for Saturday was…

Become one with the sofa.

Recharge.

Recover.

Rehydrate.

Replace whatever my body had decided to throw away on Friday.

Electrolytes were flowing.

Water was flowing.

Salt was flowing.

If resting doesn’t work, I have genuinely considered plugging myself into the EV charger outside.

Surely 20 minutes on rapid charge would sort me out?

Worth asking.

At around 8am, instead of doing the sensible thing and going back to sleep…

I decided to treat myself.

I bought The Devil Wears Prada 2 on Sky Store.

Twenty quid.

Twenty.

Pounds.

For breakfast entertainment.

Popcorn at 8am?

Absolutely.

Breakfast of champions.

So…

Was it worth £20?

I’m…Conflicted.

There were moments I loved.

Moments I laughed.

Moments where I thought, “Oh, that’s clever.”

And then there were moments where I found myself wondering whether they should have just left perfection alone.

Some films don’t need sequels.

Some stories already ended beautifully.

This one?

I’m giving it a very polite…

“Hmmm…”

Not terrible.

Not incredible.

Just…

Expensive.

One thing I noticed though…

It’s really weird not feeling hungry again.

Don’t get me wrong.

I still THINK about food. Constantly.

Food lives rent free in my head.

I’ll open the fridge. Look inside. Consider every shelf. Close it again. Open it five minutes later. Look again.

Still…

“No thanks.”

It’s bizarre and I’ve actually missed that feeling.

Am I weird?

Probably.

Don’t answer that.

Eventually I settled on scrambled eggs with fresh chives, avocado on the side and finished off the leftover mango.

Absolutely delicious.

My taste buds were delighted.

My stomach, however, was probably sitting in the corner making notes for revenge later.

Gastroparesis has a fantastic sense of humour.

The sofa remained my headquarters for the rest of the day.

And before anyone starts thinking:

“Must be nice sitting watching TV all day…”

Please…

Go and have a little read about POTS.

About crashes.

About flare-ups.

About post-exertional payback.

Because honestly?

With the collection of symptoms I get during a flare, most people would have gone straight to A&E.

Me?

It’s just…

Tuesday.

Or Friday.

Or whenever my autonomic nervous system decides to spin the Wheel of Medical Misfortune.

Panicking doesn’t fix it.

Stress makes it worse.

So I rest.

Recharge.

Hydrate.

Salt.

Repeat.

Lunch consisted of…

Sliced cucumber.

Covered in salt.

Years ago if someone had told me I’d one day be genuinely excited about salted cucumber…

I’d have laughed.

Now?

It’s gourmet dining.

Salt has become my emotional support mineral.

I even have a Himalayan pink salt lamp in the bedroom.

I’ve genuinely wondered whether licking it before bed would count towards my daily intake.

I haven’t done it.

Yet.

Dinner?

Easy.

Leftover enchiladas.

Again.

I wasn’t complaining.

Mainly because I couldn’t be bothered to cook.

One observation…

I am peeing…

A LOT.

Like…

Suspiciously a lot.

Some of it is obviously because I’m drinking gallons of water.

Some of it reminds me of when I first started Mounjaro.

The amount of water I lost back then was unbelievable.

Which is something I really need to be careful with now because dehydration and POTS are basically best friends.

And not in a good way.

My body seems determined to remove every drop of fluid I carefully spend all day putting back in.

Thanks.

Really appreciate the teamwork.

Overall though…

Saturday was actually a good day compared to Friday.

A genuine improvement.

My resting heart rate had calmed down.

I stayed comfortably below my Pace Points threshold.

Maybe it was because it wasn’t as hot.

Maybe the breeze made all the difference.

Maybe my nervous system finally remembered how to behave.

Whatever it was…

I’ll take it.

Tiny victories still count.

We watched The Great British Bake Off: Professionals.

Honestly…

Watching Benoit judging pastries is one of life’s great pleasures.

That man can detect an overbaked éclair from approximately six postcodes away.

And Cherish…

I don’t know how she keeps a straight face sometimes.

Every episode someone spends six hours creating a chocolate masterpiece…

Only for gravity to remind them who’s really in charge.

"It looked amazing…”

Collapse.

“It was going so well…”

Collapse.

“My sugar sculpture…”

Collapse.

Nothing collapsed in this episode though.

Which frankly felt unrealistic.

Then…

Football.

England vs Norway.

Semi-final.

Of course we watched it.

Everyone suddenly becomes a football expert during tournaments.

Me included.

I shout things like:

“PASS IT!”

As though the television can hear me.

I know absolutely nothing tactically.

But I have opinions.

Lots of opinions.

I actually went to bed before the match finished because I was absolutely shattered.

So naturally…

England won.

You’re welcome.

Clearly my staying awake was the problem all along.

I’ll happily make that sacrifice for the nation.

Sunday (Day 361)

Well…

What a difference.

I woke up at…8am.

According to Visible I’d actually slept…

Really well.

Excuse me?

Who authorised this?

I actually felt…

Normal.

Like…

Properly normal.

For the first time in what feels like forever.

I almost didn’t know what to do with myself.

The shoulder was slightly more painful than Saturday.

But everything else?

Not bad at all.

First job…

Feed my babies.

Unfortunately I’d completely missed the royal breakfast service.

Apparently breakfast is expected around 6am.

Anything later than that is considered unacceptable customer service.

They looked at me.

Looked at the bowls.

Looked back at me.

Pure judgement.

Honestly these two cats think they live on a luxury cruise ship.

“Excuse me…

Where is the breakfast buffet?

Why has room service been delayed?

We shall be reporting this.”

Absolute drama queens.

I made myself a lovely coffee.

Briefly considered another one.

Then remembered…

POTS.

Heart rate.

Blood pressure.

Adrenaline.

Palpitations.

Basically my body reads caffeine as a declaration of war.

So…

One coffee it was.

Adulting.

Mid-morning I started feeling…

Odd.

It’s really hard to explain.

Not dizzy exactly.

Not faint.

Just…

Wrong.

That weird feeling in my head returned.

Blood pressure felt a bit low.

So I forced myself to eat.

Out came my now Instagram-famous protein powder bowl.

You know the one.

The photogenic one.

The one that looks healthy enough to influence strangers into buying chia seeds.

This time…

With added salt.

Imagine explaining that sentence to myself five years ago.

I’ve said this before.

And I’ll keep saying it.

I refuse to let this condition completely dictate my life.

It already steals enough.

So despite feeling rough…

I got dressed.

Suggested to my boyfriend that we go for a walk.

Maybe stop at the pub.

Have a couple of drinks.

Just…

Be normal.

I needed fresh air.

I’d been indoors for weeks.

At this point I felt less like a human and more like a sourdough starter quietly fermenting in the corner of the house.

And you know what?

We actually had a lovely day.

Lots of smiles.

Lots of laughs.

Lots of silly conversations.

Even though underneath it all…

I still felt rough.

Sometimes you just desperately want one ordinary day.

Not a medical day.

Not a recovery day.

Not a symptom day.

Just…

A Sunday.

When we got home we ordered pizza.

Carbs.

Comfort.

Perfection.

Except…

Not quite.

Because alongside the pizza…

I’d also had a few drinks.

Turns out…

That wasn’t my finest tactical decision.

So congratulations.

The POTS Trigger Collection has welcomed two more members.

Current suspects include:

Heat.

Standing.

Walking.

Too much walking.

Too little walking.

Stress.

Excitement.

Dehydration.

Not enough salt.

Too much sugar.

Big meals.

Tiny meals.

Hormones.

Lack of sleep.

Too much sleep.

Looking at stairs.

Thinking about stairs.

Possibly Mercury being in retrograde.

Someone breathing too loudly.

Existing.

Honestly at this point I’m expecting my autonomic nervous system to file an official complaint because I blinked too enthusiastically.

Pizza?

Trigger.

Alcohol?

Trigger.

Being alive?

Also occasionally a trigger.

It’s like playing medical bingo every single day.

The prize?

You get to lie down.

Again.

Little did I know…

The aftermath of Sunday’s little adventure was quietly preparing itself backstage…