Hospital Chronicles Part Two: The Pain, the Poke, and the "Perception Problem"

By Antonia at Unremarkable Me

Let’s talk about pain.

Not just “ouch” pain. I mean body-on-fire, brain-melting, nothing-is-comfortable kind of pain .The kind that scrapes against your skull and drills into your spine like it’s trying to sublet space in your bones.

By Day Two, that’s where I was.That’s where I lived.

Every inch of me felt hijacked by something monstrous. The only thing tethering me to anything resembling reality was a particular painkiller—the kind that comes with a warning label and a side of societal judgment, because it belongs to the opioid family.

Fair enough. I wasn’t asking for a reckless dose. Anyone who knows me knows I hate medication. It makes me feel like I’ve been shrink-wrapped in bubble wrap and left to melt on a windowsill.

But when that painkiller disappeared—poof—no warning, no taper, no conversation?

First, I was confused. Then I was furious.

When I asked why, I got hesitation. And that look.You know the one—the quiet recalibration from “patient in pain” to “potential problem.”

Suddenly, the tone changed. I was being handled. Spoken to differently.

Their words tiptoed around a suggestion no one dared say out loud: Do you have a problem with perception medication?

For the people in the back:

I don’t want to be medicated. I want to be helped. I want to be heard.

So I said as much. Calmly. Firmly.I told them how uncomfortable—how frankly insulted—I felt.

Cue the backpedal:

“No, no, of course not, that’s not what we meant…”

Cool. Still no answers. Just pain. Just fog. Just silence.

After that, the days blurred.I floated in and out of lucidity like I was stuck between dimensions. My neck burned. My head felt like a crushed Coke can. I couldn’t sit upright without my vision spinning and my heart protesting.

Somewhere in the fog, the word meningitis landed. just like that. Like a brick through a window.

By then, I was already on two IV antibiotics. All they needed was confirmation: viral or bacterial.So I agreed to a lumbar puncture. Signed the forms with a hand that shook more from weakness than nerves.

A junior doctor came in.He was kind. Patient. Acknowledged my EDS.After three attempts and forty-five minutes, he stopped.

“I don’t want to hurt you more. We’ll try again tomorrow.”

I could’ve cried from relief.

The next day…

Same junior doctor. Another three attempts. Still kind. but this time, though, he brought backup.

Enter his boss—part peacock, part battering ram. Washing his hands like he was prepping for a cage match, he declared:

“Don’t worry, I’ll get in there.”

Spoiler: he did not.

What he did do was punch more than three holes into my back in under an hour. Muttering things like “tricky one” and “it’s moving again”—as though I was a Rubik’s Cube instead of a person in agony.

I was shaking. Gripping the bed frame like it owed me answers.

Halfway through, they ran out of needles. Yes, really.

It took ten minutes to get more—from another ward.

Eventually, they conceded: I’d need a surgical lumbar puncture under anaesthetic.

Later, a surgeon came to talk about doing it that day. I laughed. Out loud.

The idea of being wheeled from one trauma into another without even a breather? Absurd.

We agreed on Tuesday instead. It was a bank holiday weekend, after all.

That night, I tried to rest. My temperature dropped. I managed to sit upright for a few minutes in my neck brace. For a moment, I thought—maybe.

But my body had other plans.

That warm, fuzzy falling feeling returned, The one that always precedes the big episodes.

I told a nurse something was coming. I knew it in my bones.

And just like that…Back to square one.

Let’s talk about veins.

Over those few days, I’d had constant IV antibiotics, dozens of tablets, and more failed procedures than I could count.

But my veins?

My poor, fragile veins.

They collapsed seven times in three days. Each cannula blew within hours.

My arms looked like I’d lost a bar fight with a hedgehog.

One nurse even implied—again—that I was somehow causing it.

So I explained—again:

With Ehlers-Danlos Syndrome, my connective tissue is faulty. My veins are shy woodland creatures. They move when punctured.They bruise. They vanish. They throw tantrums during blood draws.

So no, I wasn’t being dramatic.

I was just being… me. And me comes with medical plot twists.

Stay tuned for Part 3 tomorrow.

Because, yes—somehow, it gets worse.And no—I still haven’t seen the neurologist who was supposedly the expert on all things “me.”📌 If you're navigating EDS, Chiari, or chronic illness confusion—check out Unremarkable Me’s resource page for support, community, and a little sarcasm-based sanity.