“What the hell did the doctor just say?”

So, Week 1. The week everything flipped.
I sat in a consultant’s room, holding my husband’s hand, while a doctor calmly said, “You’re very sick.”

He took my hand, looked me straight in the eye, said some words I can’t quite remember — and in that moment, I knew I could trust him. But also? I was completely floored. I heard things like “vasculitis,” “life-threatening,” “Wegener’s,” “CT scan,” “biopsy” — and honestly, I had no idea what any of it really meant.
Was it just some pills for a few weeks?
Would I be better in time for the summer holiday we’d booked?
Was I dying?

I left the hospital with a steroid prescription and a head spinning in all directions. Got home, opened Facebook, and searched for Wegener’s support groups. Typed things into Google I probably shouldn’t have.
Even asked ChatGPT: “How long do people live with GPA?”
Just trying to get a grip on what the hell I was facing.

What It Felt Like

Every joint in my body ached — knees, ankles, wrists, shoulders, feet — like they’d been filled with concrete.
The pressure across my face and nose was unreal. Even the weight of water from washing my face hurt.
Breathing took effort. My mouth was constantly dry, no matter how much water I drank.
And then there were the bruises under my knuckles — no bump, no explanation. Just there.

I’d walked from the car to the hospital. I’d shuffled between rooms for about 30 minutes.
Then a nurse, who’d clearly been watching me for a while, quietly offered a wheelchair.

My husband started to politely decline (he’d already suggested it earlier, and I’d flat-out refused — because wheelchairs were for really sick people… not me).
But I looked at her — and with what felt like my last drop of energy — said: “Yes, please.”
I gave in. I couldn’t keep pretending I was coping.

Where My Head Was At

Weirdly calm. Practical.
Focused on the admin — sick note for work, appointment letters, medication, paperwork.

Part of me still thought this might be a blip. A few weeks off, some meds, and I’d get back to life.
But then I’d be hit by waves of What the hell is happening?
And I’d go searching again. Facebook. Google. Anything to tell me what was next.

Spoiler: not much out there that made me feel better.