Lessons in Pain

So I had the ‘all clear’.

I had a conversation with the nurse, which was all a blur, and insisted to her that I’d be back to work in a couple of weeks. My wife had tried to manage my expectations, but true to form, I had made my mind up.

I’m not sure it is possible to be any more wrong than I was.

This was around the third day in the hospital, unable to walk or move, the blood in my CSF was starting to touch every nerve, and as described previously, it was like pouring acid on the nerve endings.

Every movement below my neck hurt, and of course, my head was hurting beyond the norm.

They can only go with Codeine and Paracetamol. No ibuprofen and no morphine, due to the possible side effects.

I was also on nimodipine and having my pressure taken every 30 minutes and my bloods twice a day. I also had to measure how much liquid was going in and out, and had to drink 3 litres of water per day, without argument.

But broadly, things were manageable; I was asleep most of the time and in a daze. It felt like being underwater, which is something I now consider a normal feeling, but at the time, it was extremely strange.

The first lesson

I had already experienced the ‘fireball’ in my head mid-bleed. The moment when my body was fighting to stay alive. I didn’t think things could get worse than that extreme, acute burning sensation in my head.

But they did, however, in a different way.

On my third night, I discovered I had a rash of some kind all over my lower half; it was actually pretty gross and not something I had experienced before. The night doctor drew on me and gave me some stuff to put on it, no idea what.

But later that night, a deep, irrepressible pain started to radiate from the very centre of my head, outward, in waves.

It was like there was a tender part of my brain in the middle that someone was jabbing every 5 seconds. At each ‘jab’, a wave of pain went from the middle of my brain to the outer edge of my head.

It was relentless. 

I didn’t know what to do.

It wouldn’t stop, and it was beyond agony.

Lesson 1: Some pain is beyond your power to control

I called the night doctor back, as I was writhing in agony on the bed. She was worried and called for me to go for another CAT or MRI. Not sure which at this point.

I begged for morphine or something stronger, but nothing was touching this at all.

It appears now that this might have been hydrocephalus, whereby excess CSF puts pressure on the brain ventricles. Or, it could have just been the blood that was in the fluid beginning to disperse. Either way, I was in a bad place.

The Second Lesson

The scan showed nothing adverse, but having looked over my notes before I wrote this, things were not going to plan and needed time to settle down.

The pain continued unabated.

One compounding effect was how it affected sleep. I just wanted to close my eyes and be asleep, but the pain was absolutely unrelenting.

Every second felt like an hour, and teh brief respite that came at the end of each ‘wave’ felt like a millisecond compared to what came next.

I had some experience with this kind of radiant pain with intercostal neuralgia, which I have suffered from for 20 years. It comes probably every 3-4 weeks out of the blue and is also totally debilitating. But it lasts around 15-20 minutes and then is gone.

This was a different ball game.

There was no way out. And for the only time in my life, I wished I could end it.

This is what people being tortured feel like. They have to give up because the pain is just too much to cope with. 

Mentally and physically, it exhausts you.

When every moment takes a huge amount of energy, it drains your will to go on.

But I had no choice; it was time to buckle up.

Lesson 2: It's going to be hell on earth, but you can get through it because you must.

The Third Lesson

This was the worst night of my life by far. 

I couldn’t imagine anything worse, and it was not getting any better.

But now, some 3 years on, it’s a memory and one I use when it’s time to buckle up and face something down.

I didn’t think I would make it through the night. Not because what was happening was life-threatening, but because I honestly thought my mind and body couldn’t take it. That I would pass out from the pain and never wake up.

Neither of these things happened, and I had to ride out many more days of radiating head pain. Which codeine and paracetamol dulled rather than quelled.

But eventually, like the sun rising in the morning, the pain slowly disappeared from my head and I could face the days and nights again.

Lesson 3: You achieved something you thought impossible.

This was not the end of my experience with high-grade pain, far from it. 

There was much more in store, but my head was now a much more gentle, dull ache, with the odd lightning strike, as opposed to a continuous reverberation of agony hour upon hour.

But I knew if I could survive the initial bleed and thunderclap, and this torturous night in which death was on my mind, then I could push through anything. And I would need to.