Mingo.Life

Thank you. That’s where I’d like to start this. I am going to be positive. Since posting part one, I’ve really been in a dark place. I’ve been coming to terms with this pain and what it means to reshape my life around it. Forever. But after hitting ‘publish’, I had a wave of support from friends, family, and even complete strangers. People on sites like Reddit and Facebook, who also live with various flavours of Trigeminal Neuralgia and Neuropathy, have been in touch. I’ve heard stories that have made me wince in sympathy and some genuine nuggets of advice that didn’t involve witchcraft, 11 herbs and spices or essential oils.

A support network I didn’t even realise was there. You, dear reader included. People have reached into that well of despair and pulled me up by the lapels.

The positivity hit me hard, in a good way, and in some cases moved me to tears.

Thank you.

There needs to be a voice, research and understanding for the hundreds of thousands silently enduring Trigeminal pain… Maybe I can somehow help once I’m not spending half my day writhing and swearing into a pillow (and not in a fun way).

And by God, I know there are so many people in the world worse off than me. I’m not terminal, for a start. I’ve still got my house, my kids, my wife and my car, my feet on my table, and a Cuban cigar.

But hey, you’re right, just because one doctor shrugged and said, “not treatable,” doesn’t mean I’m taking that as gospel. Since posting part one, I’ve already asked for a referral back to neurology to see someone with a bit more mileage on the clock than Dr. Zap.

I’ve also opened a case with a private doctor scheme for a formal second opinion. And if they can’t help, I’ll ask for a referral to the National Neurology Hospital in London. Nobody knows what the future holds, but I hope it’s answers.

And if none of them can fix me, fine. I’ll pack a suitcase and I will chase answers across continents if I bloody have to. Thailand, Dubai, Texas, wherever the clever people with scalpels and sympathy are hiding. I still have really dark days, depression doesn’t just go away overnight, but I also have a cup full of hope too.

In the meantime, it’s about getting the pain under control. Stabilising things enough to find something that looks like the life I had before all this. So I can work again. So I can be there for my kids. So I can be a husband, not just a patient.

Threading nicely back to the story from part one, I did receive some good news whilst slumped in the AMU (that’s Acute Medical Unit I was told, not Absolutely Miserable Unit).

The doctors had finally looked at my MRI results. There was nothing terminal. No growth. No tumors. Nothing life threatening, just… Life changing.

As I lay there, in excruciating pain, I took solace in that. I wasn’t going to drop dead today. I might live until I’m 80, 90 or beyond. In pain every day, but still alive. Alright, let’s work with that. Take 10 minutes and Just Breathe.

Now would someone please make the agony stop?

“Open Wide” takes on a new meaning, a new sense of fear, when opening your mouth as wide as it can go stretches your face and causes the neuropathic pain you’re already in to go absolutely apeshit bananas. Nonetheless, a good soldier follows orders.

The Maxillofacial Doctor had arrived. And she’d brought along her torture kit.

In came the first needle, pinching somewhere inside my cheek. Then another. Then another. And, of course, the classic, “just one more, sorry!”

To be fair, the Maxillofacial specialist was amazing. She really was. She told me to close my eyes and keep breathing slowly through my nose. To wiggle my feet gently and to raise and lower my shoulders in time with my breath. Her voice was calm and soothing. By the end of it, I was almost meditating.

Four needles later, and I opened my eyes.

The nerves had been sedated.

I could feel some relief spreading out across my cheek and jaw. I muttered a dribbled “ank oo” to the nice lady before I lay back and begged sleep to take me. Between the injections and the morphine, I actually bloody slept too. For a few hours at least.

Until…

It wore off.

Of course it fucking did.

I awoke again at 4am, still in AMU. Horizontal. AGONY. 10/10 pain had hit me like a punch to the jaw.

I hit the call button, pointed at my right cheek and made noises that, with generous subtitles, might have said help. Eyes leaking like a dodgy tap.

They called for Maxillofacial again.

The nice lady returned. I beamed up at her like a lost puppy, apologising for ruining her nightshift. She was very kind to me again, even as she unrolled another set of needles.

I was getting used to being stabbed at this point, as I lay back and let my torturer get on with it (and not in a fun way). I would have given up my secrets hours ago to be honest. I wouldn’t wish trigeminal pain on anyone, and they ought to consider introducing it into S.A.S selection training.

Dutifully, I took another round of injections inside the mouth.

At 5am, I urgently pressed the call button.

It hadn’t worked.

Not only had it not worked, but holy hell, this was worse. Oh boy, it really hadn’t worked. The nerve block had numbed everything except, inconveniently, the actual nerves causing the problem. The trigeminals were back, furious, and clearly had at some point unionised.

For what felt like eternity, I lay there as the pain signals ricocheted around my skull, colliding with patches of numbness and stiff muscles like a deranged pinball machine. My face was half-asleep, the other half hosting a fireworks championships. And a cluster headache decided to join in. Wonderful.

I lay there in excruciating pain for another TWO HOURS, until someone helped. The pain was simply frightening. I tried to breathe my way through it.

There was nothing more I could do to fix it.

Eventually, a kind day shift nurse appeared and administered to me the mightiest dose of morphine she could muster. 

Mercifully, it started working.

I can’t really write about the next part because, frankly, I don’t remember it. Most of the next day that followed was a soft-focus blur, kind of like someone had filmed it through a potato. At some point, I was wheeled away to a place called Lowman Ward, and parked neatly in a bay.

My belongings were taken and folded neatly onto the chair beside the bed by someone. My soiled clothes were bagged and labelled with dignity. Someone scrawled my name on the whiteboard behind me. I think food appeared briefly, then vanished again after I failed to eat it.

Time passed.

Morphine wore off.

Reality resumed its usual schedule.

My face had decided to stabilize itself back to the usual 6/10 levels of pain, and I then noticed I was on a drip, with a cannula in.

It was the evening when I regained my senses. Three or four other patients were talking and joking together on the ward; the fifth was snoring behind the curtains.

And then it happened.

A fart.

A colossal, unapologetic, cockney-accented fart from the bay next to mine. It cut through the ward like a brass section. After forty-eight hours of hell, that sound was beyond hilarious to me. I smiled! Just on the left side of my mouth, of course, the right side was still on strike. They all laughed. I laughed. I looked at the ceiling and laughed.

Gallows humour. I knew that language fluently.

Enter: Tom, Richard, Harry and Neil.

And, in the left corner, Grandad.

The Lowman Ward Gentlemen were about to make my stay… interesting.

By the way, this is our 20th post on Mingo.Life!

Make sure to drop your email in and subscribe for part three, coming at you just a little quicker than a hospital parking fine. If you want, you can throw us some support via the Buy Me A Coffee link (and it most certainly will get spent on coffee at the moment), but of course don’t feel obliged. See you soon, hopefully.