Mingo.Life

[Contains Strong Language]

Author’s Note: Finally written once the weapons-grade painkillers had worn off. Some names have been changed. My heartfelt thanks to the nurses, staff, and HCAs of Lowman Ward for their compassion and care.

BANG!
The pain suddenly shot upwards.

Racing from my cheek, where it had been digging in with the pressure of a size 10 boot, crushing me. It moved to just above my right eye, where it felt like I had taken a bullet to the forehead.

I dropped to one knee, clutching my head in pain as the Accident & Emergency doctor asked if I was leaving yet, apparently having more interest in freeing up a bed space than the wellbeing of the person directly in front of them…

I eventually went to leave, in fits of agony.

Then, suddenly, I was on the floor. Slumped against a radiator.

“Stephen!? Stephen!? Are you okay?”
A young nurse’s voice was the next thing I heard.

I felt a warm sensation on my legs. My medicine box lay scattered beside me.

Ah, fuck, I thought, I’ve passed out. And I’ve fucking pissed myself. Brilliant.

****

At first it was just a little pain. Annoying, but manageable. Nothing I wasn’t already familiar with. Then, it became the kind of pain that stops you mid-sentence. Perhaps you know it, the kind that makes your world shrink to a single, burning point.

Within days I’d gone from chasing promotion at work, to staring at ceiling tiles in a hospital bed, waiting for someone to tell me what the hell was going on.

And then came the words that would change my world forever.

“The neurologist says there’s nothing we can do to fix this. It’s just about pain management now.”

I’m sorry… What!?

Eight words. Eight little words that would change the direction of my life forever.

There’s nothing we can do to fix this.

Those words landed like a brick through glass. It felt like a playground bully had lifted me up by my collar and punched me hard in the gut.

I have an incurable chronic pain condition.

I recently mused that nobody knows what the future holds, but, what now? A lifetime of appointments, handfuls of strong medication multiple times of day, and all the horrendous side effects they bring. I would later be told I’d also have to attend a clinic every 2-3 months to receive an intravenous infusion.

The job I loved, the hobbies that kept me sane, the simple things I used to take for granted… all now perhaps off the table, or forever changed. There were so many thoughts racing through my head that I wanted to scream, but pain had stolen my voice.

So yes. I’m 34, and I’ve just been told I’m permanently disabled.

That was a strange sentence to write. Stranger still to live through.

But how did we get here?

Earlier that first day, Wednesday, I called 111 for some advice. The usual neuropathic pain in the right side of my face was particularly brutal today for some reason. I could feel a line of crushing pain running down my jaw, a wildfire burning across my right cheek up to underneath my eye, and a shadow of colossal pain creeping around my eye socket. My ear and nose were blocked and suddenly I could barely speak.

These are the warning signs and symptoms that many trigeminal nerve pain sufferers will be all too familiar with.

I knew what was coming next to join it: a cluster attack directly to the right side of my forehead. This is where the entire right side of my face locks up, and all the elements I just described are fully engaged in the business of delivering pain signals at high speed. My vision blurs. My eyes water. The pain becomes unbearable. For no reason.

Halfway through the call I entered a full-blown neuropathic storm. The clinician transferred me to the ambulance service. I could barely get words out. “Botched dental surgery,” I croaked. “Unmanageable.” Then I handed the phone to Emma and hit the deck.

I was in a world of hurt. And I was simply supposed to be at work instead?

Less than half an hour later the ambulance arrived. Three lovely ladies were in my bedroom (an improvement on my personal best of two), and they took good care of me. I was packaged up and shipped down to the Royal Devon & Exeter Hospital. They gave me a cubicle in A&E and there I quietly suffered alone, as daytime turned to night.

I was feeling extremely low about being here yet again, so I have to retrospectively question the doctor’s decision to have a nice chat and then promptly hand me a bottle of morphine, pat me on my back and send me on my way.

I didn’t make it to the door.

The pain became a solid 11/10 and the only option my body chose was to simply shut down. Windows restart.

You know the rest!

And it was there I sat, in the Acute Medical Ward, with an oxygen mask strapped to my face. My previous neurologist, earlier in the year, had theorised that high flow oxygen would combat the cluster headache pain. And to be fair, it did! Bravely sweeping away the forehead pain, but it did nothing for the inferno in my cheek or jaw.

FUN FACT: The Trigeminal Nerve network splits into three, hence the Tri in the name. They are affectionately named V1 (upper area above the eye), V2 (across the cheek from ear to eye) and V3 (the lower mandible line, down your jaw). Back in August I had an MRI which detailed all of this. I’ve got damage in there somewhere, but it’s not operable apparently. Those where the nerve and artery cross can, in some circumstances, have a procedure to fix it. Unfortunately I do not fall into that category.

Little did I know, I was about to become very familiar with all this terminology over the next 10 days.

Deep breath.

Enter the neurologist, let’s call him Dr. Zap (ironically close to his actual name, and the sensation I am likely currently feeling in my face as you read this), standing at the foot of my bed with his assistant Igor. It was here that Zap, expressionless, and in world record time, would announce in one breath that;
– There’s nothing we can do to fix your nerve damage.
– It’s just about pain management now and there’s no point doing another MRI, or any kind of scan really.
– It’s not really a treatable condition.
– You’re basically imagining it, please go away Sir.

Don’t worry, my friends. Over the next ten days I would ride a rollercoaster of emotions, eventually leading to a diagnosis with a very good Doctor. And no, it turns out I wasn’t making it up.

Was there going to be a flicker of hope? Yes.
But first came the Maxillofacial department, a smiling young woman standing by my bed with four long needles and a cheerful “This won’t hurt much.”
Spoiler: it did.
Because she was about to stick all four needles INSIDE MY MOUTH.

You can find part 2 here.

Next: Needles. Many needles.

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Aufwiedersehen!