It's been 12.5 years since my crazy head trauma.

Let's have an update on my life-crap, shall we?
How cheery.

-=-=-

The Story So Far

2009 - Headaches getting worse.
2010 - See GP about headaches. "Bad Posture" he says.
2010, 2011 - Second and third opinions. "Oh, you sit at a desk typing on a computer all day? That'll be bad posture.. Get a new chair.."
February 2012 - Headaches really bad by this point. GP sends me for an Xray. Xray says "Bad posture"

Xrays only really show Bone, not gigantic blobs that are growing in your brain...

A week later - vomiting blood, I was rushed into Bolton Hospital where they did a CT scan which showed a bizarre lump in my brain.

They rushed me off to Salford Royal, where they did extra poking and prodding to figure out what it was.
They did brain-fluid extraction.. I had giant tubes running out of my skull into little sacks of goo, and they did test after test to figure out what the heck was going on.
By mid April, they finally told me it wasn't Cancer, and to this day, nobody's really told me exactly what is was, so .... *shrugs*

The CSF (Cerebrospinal Fluid) coming out of my head was far too much, and far too "not right", so they had me stay in for a fairly decent amount of time, trying to figure everything out.



They let me out in early May, and I managed about a week at home, but then the back of my head burst and started leaking the CSF fluid, so they rushed be back in again.
Oh joy.
Sickness, Balance, nausea.. I wasn't having a lot of fun.
And they kept me in there, not understanding why I was being sick, literally every day.

One day... the worst day.. They'd said "We can send you home today!" and then a few hours later "We're not sending you home today, it's still too much fluid, you're going to have to stay over the weekend.."
It was too much.. I was a sobbing blubberhead that day.

They sent a therapist around to see me, in the midst of my day of misery. "I'm not depressed," I sobbed to him.. "I'm just having a really bad day!!"

On 27th July 2012, they finally let me out in time to watch the Olympics opening ceremony, only for a checkup to be scheduled a few weeks later.

Jiggity

August 13th, 2012, I headed back into hospital for the checkup, and it was the first time since March that I'd gone into hospital, and was actually allowed back out again!!!

I wrote a blog on that day, titled Home Again, Home Again, Jiggity Jig, so it's become somewhat of a tradition since, to post a health update at this time of year.

It's been 12 years.

My condition, nowadays, is instability and nausea. I'm not well balanced, and my peripheral vision is almost non-existent, so if there's something in a room that someone *could* trip over, I'll be the one to find it for you.
Subtle head movements cause tiny waves in my head. It's like having an inner-ear infection, except it's not in my ear, it's in the hole in my head where they took out the unknown blob of whatever-the-heck.

If I turn too fast (a dog barks, a bee flies around me, I'm trying to talk to people at different sides of a room), then the fast wave causes extreme imbalance, and if I move my head too much, then the nausea kicks in.
And it's been pretty much the same issue for the past decade.

I bought a Treadmill. It didn't go well. Slow steps on the slow pace were ok for a minute or two, but then after marching step after marching step.. left, right, left, right, left, right..
It was wave after wave, and I had to stop.
Waste of money, that was.

Even the little foot-pedal bike eventually kicks in the nausea after a few minutes.

The waves just don't go away.

They said they "might", but they haven't..
Hey, at least it hasn't "really" gotten any worse. It's just on a nice level. A rolling swirling, constantly waving level.

2020

And then there was that time in October 2020 when the shunt that drains the fluid from my head, completely broke down, dislodged, and started to literally, physically, hammer my brain.

Boy, that was a fun week of crazy hallucinations in a hospital ward with practically nobody but a couple of patients and one or two nurses, because it was the height of the covid pandemic, with no visitors or anything.
Yeah, that was perfectly alright, and nothing at all unusual.
There was something about pumpkins, I can barely remember what that was.

I know my Sister was allowed to wave to me from the ward-door at one point, when she brought my suitcase full of clothes for the week. I hate to say it, but I can only remember waving, and nothing more than that.
...
Hey, at least I got to watch a brand new episode of Red Dwarf whilst in hospital. One of the nurses was watching it on a telly in the ward.
So that was cool.

Of course, there was no new Red Dwarf.
I'd already seen all the Red Dwarf they'd made up to that point..

And the nurse wasn't watching Red Dwarf on the telly, anyway.
.. .. because it wasn't even a telly.

It was a mirror on the wall.

A mirror that displayed the sheer extent of my crazy hallucinations.
...
Having a mechanical device, in your head, dislodge and try to kill you, can do that sort of thing to the mind.

Thankfully I'm ok, though, and there doesn't appear to be any lasting damage.
They put in a new shunt, and I was shipped off back home within a week.
Once back to normality, with the brand new "not trying to kill me" shunt, I got back to my regularly scheduled... sitting about..

Practically every day, the viscosity of the fluid in my head, is completely different.
If my head's too hot, the liquid is all runny and that causes more nausea and unbalanced behaviour even with minor turns of the head.
If my head's too cold, the liquid seems to slow to a crawl, and the speed difference means that even a slight head turn can cause the fluid to crawl slowly inside my head, making for more subtle, but more increased neusea.
It's a very bizarre sensation, and one that I wouldn't wish on my worst enemy.

It also means that each morning, I pretty much have to relearn how I'm going to be walking that day. Be it lengthy full strides, or slight shuffles.. In a straight line, or stumbling like a drunken crab.

And that's a daily thing. It's not a whole lot of fun. And with my inability to "glance" around at things, being outdoors is super-dangerous. A dog barks behind me, I turn to look, and now there's waves of goop swirling around in my head, enough to cause me to stumble, possibly into the road.
Every walk, it has to be with someone, who can catch me if I do stumble.
Thank god for Mum..

So we go for walks when it's safe to do so. Mum typically linking my arm, and we sometimes make it as far as the local shop (so local we can see it out the window of the house) 500 steps or so.. Sometimes as far as the local Tesco (about 30 or 40 houses away) 2500 steps away. But not usually any further than that.

We had to move to a bungalow, last year. The stairs were becoming a danger to me.
We left the home we'd been in for 37 years, and headed to a nice new single-floor traditional bungalow, without any dangerous stairs to cause me any issues.

Since the move, we've been finding short walking loops around the new estate. The longest of these has been about 3,000 steps, so not much further than Tesco, but it's a slightly different set of bungalows to look at along the way, admiring people's gardens if I tilt my head slowly enough to look at them!

But we're been trying to make it a daily (if not 3 or 4 times a week) occurrence to get out and have a short walk. Not that I'm getting any better at these walks, but at least it's getting me out and about.
As short a walk as it is.

My watch is forever telling me that I haven't even done half my daily step target yet. It's on the default setting, which is 5,000 steps a day. I haven't managed that in a single day, yet!!!
And Apple Health tells me my walking steadiness is low, too, so I guess that's a fun stat to have.

Ugh..

TL;DR;

I'm not really any better.
I keep trying to do more and more, but whenever I do, something inevitably forces me back onto the couch again.

I'm not worse, though
And I think it's ok to just "not be worse".

Being ok is ok...
Right?

I'll just carry on making games and stuff.
At least when I'm sat on the couch all day, I'm slightly less likely to fall over.