My Journey: When Flare-Ups Feel Like Relapse.

Let me start with the obvious: I’ve been here before.

Flare-ups, relapses, setbacks—whatever you call them, they’ve shown up so frequently they might as well have their own keys to my house. But this one? This one stormed in, kicked the front door off its hinges, and left me unsure if I’d ever fully recover.

It began predictably enough: a headache. Just a nagging ache I usually silence with a cup of tea and stubborn optimism. But it didn’t budge. Day four rolled around in, and suddenly it escalated into a migraine that felt like someone was drilling behind my eyes with a rusty corkscrew. I lost a full week to it—bedbound, light-sensitive, and barely able to string a sentence together.

Then, just as I thought I might be turning a corner, things took a dramatic nosedive.

A massive dark spot swallowed most of my vision in my right eye—no blur, no floaters, just a curtain dropping abruptly. Electric flashes erupted at the edges of my sight, followed by waves of warmth crawling from my scalp to my fingertips and toes. My neck stiffened like cement, vertigo staged a fierce comeback, the tip of my tongue went disturbingly numb, and three spontaneous nosebleeds punctuated the chaos.

For the first time in ages, I was genuinely terrified. And here's the kicker: I wasn’t even sure I wound make it through this one.

Hospitals and Me: A Troubled Romance

Hospitals and I have a complicated relationship, built less on fear and more on a history of disappointments and unhelpfulness . I've landed in A&E countless times with alarming symptoms only to leave with a patronizing leaflet about stress and working too much. "You're young! Your labs look fine! Maybe you're just anxious?"

But this time, fear won out over mistrust. Sam and I drew a line: if things didn't improve by morning, we’d head straight to the hospital. Brutally simple.

The next day brought relief—not recovery exactly, just enough of a change to let me justify ridding this out at home. And so, I stayed put—bruised, cautious, quietly enduring another week in bed.

The Aftermath: Navigating the Quiet Chaos

Now I find myself in that strange silence after a storm.

Physically, I’m wrecked—muscles weak, joints aching, my body feeling reassembled incorrectly. But the emotional aftermath cuts even deeper.

From the outside, people see me standing ish and say, "You look better!" But inside, the anxiety whispers loudly: Did something permanently break this time? Is this the new normal? Maybe next time you won't be so lucky.

No one applauds when you put your braces back on. There’s no ceremony acknowledging the quiet grief you feel for the pieces of yourself that might never fully return. Every flare brings the unspoken question: Have I lost another piece of who I was?

This time, it feels like My Chiari malformation has aggressively seized the steering wheel, with EDS lounging ominously in the backseat, scripting the next chapter of my chronic-illness horror story. My body has always felt like a poorly-managed rental property, and lately, the tenants are staging a riot.

The Hidden Side of Chronic Illness

We rarely talk about the fear—the raw uncertainty of distinguishing between a temporary flare and a permanent decline. It’s the surreal experience of your own body becoming unfamiliar territory, leaving you hesitant to even seek medical help. What's scarier: being dismissed yet again, or being told nothing can be done?

Yet, despite everything, here I am—not whole, not healed, but still here.

If you're navigating your own flare, relapse, or baffling symptoms right now, remember: You're not alone. You're surviving something brutal with more courage and grace than you'll ever receive credit for.

If no one has said it yet, hear me clearly: I see you. I get it. And you're doing far better than you feel.

Resources for Support (UK-specific)

If this feels painfully familiar, here are some valuable resources:

• The Ann Conroy Trust: Specialist support for Chiari Malformation and related conditions.

• The Brain Charity: Comprehensive assistance for those dealing with neurological disorders.

• Ehlers-Danlos Support UK: Essential advocacy for those navigating life with EDS.

• Shine Charity: Vital support for CSF leaks and related conditions.

• Mind UK: Tackles the mental health impacts of chronic illness—anxiety, trauma, and burnout.

  
  

And of course, there's always Unremarkable Me, where we share real stories—the messy ones, the unfinished ones, where just getting through the day is enough.

Because sometimes, surviving is an act worth celebrating—and absolutely worth writing about.