Day 359: My Body Has Apparently Introduced A Loyalty Points Scheme!

Wow… what an evening and what a night...

The pain.

Bloody hell.

I honestly don’t know whether yesterday’s steroid injection actually went into my shoulder or somehow took a scenic detour and ended up in my brain stem. At this point I’m willing to consider all possibilities because it would certainly explain why my neck has all the flexibility of a Victorian grandfather clock.

Need to look left? Not happening.

Need to look right? Also not happening.

Need to look behind me? Well, the entire upper half of my body has to rotate like Batman. If someone calls my name from behind, they’re just going to have to wait while I perform a three-point turn.

Sleeping wasn’t much better.

Actually… I’m not even sure I slept.

I think I just spent the entire night auditioning different positions to see which one hurt the least.

Spoiler alert… none of them won.

Every time I moved my shoulder complained, my neck complained and my arm joined in for good measure.

By the time morning arrived I felt like I’d spent the night in a tumble dryer instead of a bed.

To make matters even more entertaining, yesterday’s trip to London absolutely destroyed my Pace Point allowance on my Visible band.

Apparently I’m allowed a grand total of 29 Pace Points before my body decides enough is enough.

One trip.

ONE.

I wasn’t climbing Everest.

I wasn’t running the London Marathon.

I literally went into London and my Visible band responded as though I’d attempted Tough Mudder while carrying a grand piano.

Honestly, the Pace Points feature should go on Mounjaro because it seems determined to eat absolutely everything.

By lunchtime it had devoured my entire allowance, my energy, my optimism and probably next Tuesday’s as well.

The frustrating thing is I genuinely don’t know what causes these crashes anymore.

Is it the heat?

Ist it MJ?

Is it my shoulder?

Is it the injection?

Is it not sleeping?

Is it Long Covid?

Is it PoTS?

Is it all of the above working together in some evil little committee meeting inside my body?

Or did I simply breathe too enthusiastically?

Some days I can do something and get away with it.

The next day the exact same thing wipes me out.

There doesn’t seem to be any logic to it.

My body is basically a faulty Magic 8 Ball.

Will today be a good day?

“Reply hazy. Ask again tomorrow.”

The list of possible triggers is becoming ridiculous.

Heat.

Cold.

Standing.

Walking.

Cooking.

Stress.

Lack of sleep.

Too much sleep.

Going shopping.

Working.

Cleaning.

Changing the bed.

Having a shower.

Carrying washing.

Getting excited.

Getting upset.

Probably blinking too aggressively.

Honestly, I spend more time trying to identify my crash triggers than detectives spend solving murders.

I’m actually getting nervous about leaving the house now because I’m constantly thinking about Pace Points. Every decision has become a maths problem.

Can I afford to go food shopping?

How many points will that cost?

Can I go for lunch?

Can I meet someone?

Can I walk to the station?

What happens if there are stairs?

What happens if it’s too hot?

What happens if the train’s delayed and I’m standing around for half an hour?

Because I know what happens afterwards.

The crash.

Not just a little “I feel a bit tired” crash either.

I’m talking about the type of crash where your body cashes in every single Pace Point with interest.

Quadruple points.

Buy one, get three free. It’s as though my nervous system has signed me up to the world’s worst loyalty programme.

“Congratulations! You’ve exceeded your allowance. Your reward is three days of feeling absolutely dreadful.”

Brilliant.

The pain eased off slightly during the morning, enough for me to make a coffee, which remains one of the healthiest and most stable relationships in my life except my amazing boyfriend obviosuly.

Breakfast, however, was slightly less glamorous.

I really need to start making those Instagram-worthy protein bowls again. You know the ones… colourful fruit, protein yoghurt, granola, seeds, all beautifully arranged so it looks like I absolutely have my life together.

Instead, today’s culinary masterpiece consisted of a few bits of watermelon and some mango.

The end.

MasterChef judges, please try to contain your excitement.

Then came the cats.

Oh…

The cats.

Anyone who owns cats knows they occasionally leave little “presents” in the litter tray that make you question every life choice you’ve ever made.

This morning’s offering nearly finished me off.

I gagged.

And gagged.

And gagged some more.

Honestly, I thought I was going to end up face first in the litter tray myself.

The funny thing is the Mounjaro side effects seem to be creeping back in. My appetite has disappeared again, which I’m not exactly complaining about, but my sense of smell has apparently been upgraded to military-grade.

To be fair, I’ve always had an incredibly sensitive sense of smell.

Ridiculously sensitive.

Someone could peel an orange three streets away and I’d probably ask who was having citrus.

If somebody opens a tin of tuna, I know about it before the cat does.

One thing Covid didn’t permanently rob me of.

I think it borrowed it for a while, but it’s definitely back now, and apparently with a vengeance.

While we’re discussing my digestive system, let’s not forget the reflux.

As if gastroparesis wasn’t enough.

The more I read about PoTS and dysautonomia, the more everything finally starts making sense.

Gastroparesis often goes hand in hand with PoTS, which explains years of random digestive issues that nobody could really join together.

I genuinely thought I was special.

Turns out I wasn’t.

It was just another free gift with purchase.

Congratulations on your PoTS diagnosis!

Included at no extra cost…

Fatigue.

Brain fog.

Heat intolerance.

Reflux.

Gastroparesis.

Random nausea.

Heart rate that behaves like it’s trying to win the lottery.

And a nervous system that apparently woke up one day and chose violence.

Work was busy today. Really busy.

I tried to power through because that’s what I always do, but my arm was making it abundantly clear that perhaps today wasn’t the day for pretending everything was fine.

At the same time my Pace Points were increasing with the speed of light.

Actually, scratch that.

They were climbing faster than Pac-Man after finding a row of power pellets.

They were multiplying like Gremlins after midnight.

Like browser tabs when I’m “just quickly looking” on Amazon.

Like emails after you’ve dared to take one day off work.

Every time I looked at my Visible app the number seemed higher than it had been five minutes earlier, and I could almost hear it sighing at me.

“Oh look… she’s ignored us again.”

So I actually listened.

I stepped away from my desk, lay down for a while and rested because I genuinely want to remember the weekend instead of spending it horizontal wondering why I pushed through again.

That’s the hardest part about all of this.

I don’t want PoTS controlling my life.

I don’t want to have to analyse every decision, every trip, every chore, every outing or every meal based on whether it’ll wipe me out tomorrow.

I want to be spontaneous.

I want to say yes without calculating the consequences.

I want to go somewhere without wondering how many Pace Points it’ll cost me.

But if I’m honest…

Right now it is controlling my life.

Not because I’m letting it.

Because sometimes my body simply makes the decision for me.

This evening I made enchiladas for dinner.

They looked amazing.

Smelled amazing.

Tasted amazing.

Well… I assume they did because I managed exactly one before my stomach announced we’d finished for the evening.

Cooking them, however, was an entirely different experience.

Standing in front of a hot oven in the middle of Britain’s latest attempt at becoming the Sahara Desert sent my heart rate soaring again.

Halfway through making dinner I had to sit down because my body decided enchiladas now count as high-intensity interval training.

Honestly, who needs the gym?

Apparently changing bedsheets is enough these days.

Speaking of which…

Today’s award for “Most Ridiculous Heart Rate” goes to…

Changing the bed.

My heart rate hit 160 bpm.

One hundred and sixty.

From putting a fitted sheet on a mattress.

Then, because my body enjoys keeping things interesting, it suddenly dropped to around 60 for absolutely no reason whatsoever.

What the actual hell?

To be fair, I’d also done four loads of washing, which apparently now qualifies as endurance sport.

Does this mean housework is officially cancelled until further notice?

Because if my heart could write me a sick note, I think it probably would.

The really annoying part is that all of this seems to have been triggered by one trip to London yesterday, in the heat!

One.

That’s all it took.

The whole day has been one giant crash and I genuinely don’t know what caused it.

Was it the lack of sleep?

The injection?

My shoulder?

The heat?

Yesterday’s travelling?

Or all of them teaming up together?

If I showed you my heart rate readings from today, you genuinely wouldn’t believe they belonged to somebody sitting at home doing normal everyday things.

Even my resting heart rate refuses to behave at the moment. It doesn’t seem to want to go below the ninety-somethings, and every time I think it’s finally settling down, it finds another excuse to sprint.

One word sums today up perfectly.

Crash.

Not just tired.

Not just exhausted.

Crash.

The sort where every cell in your body feels like its battery is flashing red.

By the evening my battery was the lowest I’ve ever seen on my Visible app, which felt about right because so was I.

I crawled into bed ridiculously early, hoping tonight might be better than last night.

My shoulder still hurt.

My neck still refused to cooperate.

The heat was unbearable.

Britain still felt like the surface of the sun.

Eventually I think I fell asleep.

Or perhaps my brain simply overheated and temporarily shut itself down.

At this point, I’m honestly not sure there’s much difference.

With Love,

JABatha Christie