Day 362-365: Four Days of Weirdness and the Usual Chaos

If anyone had asked me how this week was going to go, I’d probably have confidently replied, “Oh, fairly quiet I think.”

Which, as we all know by now, is basically the equivalent of standing in the middle of a field during a thunderstorm waving a metal umbrella around shouting, “What’s the worst that could happen?”

Because this week had absolutely everything.

A headache that deserved its own NHS referral, meetings about meetings, oversized red blood cells, another Mounjaro jab, football disappointment, neighbours auditioning for EastEnders at two o’clock in the morning, an optical migraine that had me questioning whether my eyeballs were malfunctioning, and a Visible Band that spent the entire week acting like an overprotective parent every time I dared stand up.

Despite all of that, the jab just quietly carried on doing exactly what it was supposed to do. My appetite stayed well and truly suppressed, I stuck with my protein, kept glugging electrolytes like they were going out of fashion and, although I didn’t know it yet, Sunday’s weigh-in was going to make every bit of this week’s madness worth it.

But I’m getting ahead of myself…

Let’s start with Monday.

Monday - Future Me Was Absolutely Right

Oh Monday…

How I paid for Sunday.

It’s official. After years of careful scientific research involving exactly one participant (me), I can now confidently announce that I cannot drink wine topped with rum.

Apparently that’s where my body draws the line.

Who knew?

Sunday had been absolutely lovely. I left the house for the first time in ages because of PoTS.

We had such a nice day together, laughed loads, enjoyed ourselves and, for a few precious hours, I almost forgot that my body has a habit of sending invoices a day or two after I’ve had fun.

Somewhere in the back of my mind I knew it was coming. You know that little voice that whispers, “You’re going to regret this tomorrow…”? Mine was practically waving a giant red flag. Naturally, I ignored it because hindsight is a wonderful thing and, at the time, another drink seemed like an excellent decision.

Monday morning politely informed me that it had not, in fact, been an excellent decision.

The headache was absolutely out of this world. Honestly, it felt as though somebody had hired a team of angry woodpeckers armed with pneumatic drills and given them unlimited access to my skull. Every heartbeat echoed around my head like someone was ringing the bells at Westminster Abbey from the inside.

Even blinking felt aggressive.

I don’t think it was technically a hangover. It had evolved into its own weather system.

To make matters worse, my POTS decided this would be the perfect opportunity to join in. One step forward, twenty-five steps back seems to be the theme of life sometimes. Whenever I start thinking I’m getting into a rhythm, my body likes to remind me that it’s still very much in charge.

My poor Visible Band was working harder than I was. I’m convinced it spent the night repeatedly looking at my heart rate and wondering whether it should call somebody. If it had a voice, I’m fairly sure it would have been saying, “Seriously? Again? Could you just lie down for five minutes without turning it into an endurance event?”

I’m surprised it didn’t simply unclip itself from my wrist and walk out.

Needless to say, working from home was the only realistic option. The heat certainly wasn’t helping either. I was so unbelievably hot and uncomfortable that I genuinely couldn’t find a position where I felt normal. Fan on, windows open, cold drinks, electrolytes… nothing seemed to make much difference. My body had quite simply decided it wasn’t interested in cooperating.

Sometimes living with POTS feels like driving a car where someone else keeps randomly pulling the handbrake on.

Tuesday - Who Gets to the Office at Seven?

By Tuesday morning I decided I’d had enough of feeling sorry for myself.

Well… that’s not entirely true.

I still felt sorry for myself, but I also knew I needed to get my life together.

Getting ready nowadays feels like an event in itself. There was a time when jumping in the shower, getting dressed and heading to work happened without a second thought. Now I seem to negotiate with myself before every single step.

“Right, shower first.”

“Okay… but maybe sit down afterwards.”

“Hair next.”

“Maybe another little sit down.”

It’s amazing how much energy you can expend before you’ve even left the house.

Somehow, though, I managed it.

Not only did I get myself ready, but I also arrived at the office at 7am.

Seven!

Who actually am I?

I don’t even think the building expected me. The cleaners were still doing their rounds and the coffee machine looked as though it hadn’t quite woken up yet. It was so early that I half expected someone to hand me a set of keys and ask me to unlock the place.

Work was… well… work.

A team meeting, followed by meetings about meetings, followed by discussions about actions from previous meetings before arranging future meetings to make sure we’d all remembered what we’d discussed in the earlier meetings.

Corporate life really is a fascinating place.

I had to leave early because I had an appointment with the haematologist at London Bridge. As some of you know, my blood tests have shown enlarged red blood cells, so it was time to investigate why my body has apparently decided that normal-sized blood cells simply aren’t ambitious enough.

Thankfully, the consultant was absolutely lovely. There’s something so reassuring about someone who actually listens, explains things properly and doesn’t make you feel as though you’re inconveniencing them by asking questions. We talked through everything, what they’re looking for and what happens next. Although I still don’t have all the answers, I left feeling far more reassured than when I arrived.

Straight back on the train afterwards…

And, of course, nobody offered me a seat.

Honestly, I don’t even know why I’m surprised anymore. Apparently looking like you’re trying very hard not to pass out still isn’t enough to convince people to move their shopping bag.

The biggest surprise of the day wasn’t the appointment though.

It was my Visible Band.

Somehow…

Against all odds…

I didn’t go over my pace points.

I went into London, navigated the Underground, attended a hospital appointment, travelled back home and still managed to stay within my pacing limits.

I genuinely checked the app twice because I thought it had malfunctioned.

The only explanation I can come up with is the office air conditioning.

Maybe not feeling like I was slowly roasting all day actually made a difference.

Who knew that being a comfortable temperature could be beneficial?

Groundbreaking stuff.

Wednesday - Jab Day

Wednesday was another working from home day, but more importantly, it was jab day.

Every week I tell myself that I know what to expect.

Every week my body likes to remind me that it can still surprise me.

The injection itself was absolutely fine, but before long that familiar taste came creeping back into my mouth. If you’re on Mounjaro, you’ll probably know exactly what I mean. It’s one of those strange little side effects that’s difficult to describe unless you’ve experienced it yourself.

I felt a little queasy afterwards and my appetite promptly disappeared for the rest of the day.

One tiny retch.

No actual vomiting.

I’ll take that as a victory.

It’s funny because, after all these months, the jab has almost become part of my weekly routine. It’s no different to remembering to put the bins out or watering the plants. Except instead of helping the roses, it’s helping me slowly become the version of myself I was before Long Covid, POTS and everything else barged into my life uninvited.

The appetite suppression is definitely still doing its job, so I’m leaning into it rather than fighting it. Protein, water and electrolytes have become my holy trinity. They’re not particularly glamorous, but they’re keeping me going.

Wednesday evening was England versus Argentina in the World Cup.

I had a funny feeling England probably weren’t going to pull it off, but of course I still watched.

Well…

I intended to.

The reality was slightly different.

At some point exhaustion won.

I went to bed before the final whistle.

Honestly, welcome to your late forties where a decent night’s sleep is often more exciting than finding out the final score.

Thursday - When the Neighbours Decide Nobody Needs Sleep

If Wednesday ended quietly, Thursday certainly didn’t begin that way.

At around two o’clock in the morning I was suddenly woken by what can only be described as absolute carnage coming from one of the houses on our street.

Shouting.

Screaming.

Doors slamming.

Language that would have made even me raise an eyebrow, and I do enjoy a well-placed swear word.

It just went on and on.

Eventually the police arrived and, from what I could gather, people were taken away. I have my suspicions about who was involved, but whatever had happened, it certainly wasn’t pleasant to listen to.

The thing that upset me most is that we genuinely live in such a lovely village. It’s quiet, friendly and exactly the sort of place where you don’t expect to be lying awake at two in the morning listening to a domestic unfold outside your window.

Once I was awake, that was it.

There was no going back to sleep.

The adrenaline had already kicked in and, unfortunately, once my nervous system decides it’s joining the party, it’s incredibly difficult to persuade it otherwise.

Before long I could feel the familiar heart palpitations starting.

Then came the panic attack.

If you’ve never had one, they’re incredibly difficult to explain to someone who hasn’t experienced them. Even when you know what’s happening, your brain has an amazing way of convincing you that something far more sinister is going on.

As if that wasn’t enough, I then developed one of the worst optical migraines I’ve had in a long time.

They’re such bizarre things. Mine usually starts with shimmering zigzags in one corner of my vision before slowly spreading until half of what I’m looking at seems to disappear behind flashing patterns. Trying to read becomes impossible. Looking at my phone is pointless. Even recognising people’s faces becomes strangely difficult because parts of them simply aren’t there.

It’s like somebody has put a kaleidoscope over one eye and decided that’s perfectly acceptable.

By this point I was supposed to be getting ready for the office.

Absolutely no chance.

My Visible Band completely lost the plot.

My pace points were climbing before I’d even done anything remotely energetic. Every time I thought my heart rate had settled, it shot straight back up again.

Honestly, it couldn’t keep up with me and I couldn’t keep up with it.

We were both having a terrible day.

So, thanks neighbours.

I sincerely hope you appreciate the chain reaction you caused because my nervous system certainly didn’t.

To be continued…

With Love,

JABatha Christie