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Health Update : Jiggity - 2018
13th August, 2018
Although August 13th isn't a significant date in my health matters, it is the date that I wrote this rather lengthy blog post, back in 2012.
It's now become a bit of a tradition for me to post an annual update on this date.
Other Jiggity Posts
The posts are given the title "Jiggity", because my original post was titled "Home Again, Home Again, Jiggity Jig"!
It's a handy keyword when searching for these health posts.
A tumour/cyst/blob was wedged in my head, somewhere between the Spinal Cord and Cerebellum, near the Fourth Ventricle.
Thankfully the tumour turned out to be none-cancerous, but once they removed it, the balance issues kicked in, and I ended up stuck in the hospital, on various drips and oodles of medicines, vomiting daily, for literally months.
It wasn't a pleasant time.
The Current Issue
When they removed the tumour from my head, it left a hole. The hole should've been filled up by the nearby Fourth Ventricle, but .. apparently that didn't happen!
Instead, the hole remains, and as I move around, the fluid that's naturally inside the head tends to slosh about inside the hole.
This causes subtle, but really noticeable feelings of what I could probably describe as "motion-echo".
Many people assume this is an inner ear issue, as it does indeed sound incredibly similar to that, but in my case it's much deeper inside the head.
The issues that I'm left with are nearly all down to this motion issue.
Simply turning my head left and right must be done slowly, to avoid the waves of nausea.
If I want to look up at something, I have to do it gently.
Rolling my head back over the back of a chair can lead to "swirlyness" which takes a few seconds to overcome.
When the physio team first noticed how bad it was, they'd had me sat upright, then lay me straight on my back. The dizziness was ... extreme!! causing my eyes to dart all over, and I think I might've even lost a second or two, whilst they were doing it.
I'm not sure if my balance is gradually getting worse, or whether I'm starting to forget how bad it actually is.
Lately I seem to be stumbling far more than I used to, but then I'm also trying to stand up a fair amount more.
It isn't going very well!
Standing stationary is the worst, as the stumbles become more pronounced, and you can tell I'm really unsteady on my feet.
Walking up stairs can be fairly problematic, as most of my stumbles tend to be in a backwards direction, and .. Well, you can imagine that on a flight of stairs. .. Not a good thing.
As such, I tend to launch myself up stairs as if on a mission, and daren't stop until I'm safely at the top!
There's an odd splodge of Blind-Spot on the lower-left of my right eye.
Essentially if I stare at center of a computer screen, and close my left eye, then my right eye can't see most of the left of the taskbar.
It's all sort of greyed out, and "not there".
Because of that (I think!) my eyes are slightly drifting, so I've gained a fair amount of double vision over the past few years, and it seems to be getting worse.
Thankfully the glasses are currently tackling the issue, but the lenses are only going to get more expensive, the worse the drifting gets.
Something during the operation seemed to kick my tastebuds out of whack.
Ever since, certain onions, vinegars and other things seem to knock the nausea into gear.
I've not 100% tracked down all the scents that make me feel nauseous, but I'm learning what sorts of foods to avoid.
Some smells can cause me to lose my appetite completely, and others can cause the nausea to get a little overwhelming.
Additionally, I've not yet dared to eat-out. There's no point going out for a meal, if your tastebuds kick off, and you suddenly don't feel like eating.
I just wouldn't like to waste a whole meal, simply because of the smell of it being cooked!!
I'm completely terrible within groups of people.
As conversations move from side to side around me, and I'm glancing around the room, the nausea starts to kick in.
From that point I gradually get more and more silent, until I'm practically hidden away in the corner of the room.
I know it's rude to grab your phone when in polite company, but I've found that having something to focus on helps me avoid the head movement somewhat.
If you're ever in an IRL conversation with me, and I seem to stare aimlessly at a piece of furniture, please don't think I'm being rude!
I'm just trying to keep my head still!!
At the back of my neck is a fairly large dent. Inside is a bubble of fluid, but the Shunt drains it out, and keeps things from getting too full inside my head.
When I first awake each morning, the bubble is almost full, and the dent isn't noticeable at all, but as I start my day the shunt seems to kick in, the bubble reduces, and the dent slowly grows.
For the most-part, the dent is usually at what I would call "Half Dent".
Full Dent was what it was whilst I was in hospital and first had the Shunt doing its job.
I think it was probably draining a bit too much, at the beginning. Half Dent seems to be the natural size of the dent/bubble.
Over the past few weeks of extreme summer heat, the dent has been slightly less than I'd like, and the bubble has been slightly larger.
Having said that, the last couple of days of "Not so scorching summer" has seen the dent go back to it's usual position.
I guess, then, that I'd be no good going away anywhere hot for an extended time!
Lovely, murky, dreary British weather is good enough for me
Incidentally, if my neck gets too cold, during Winter, then it starts to get a bit frozen, and is hard to move properly.
During the winter months, you'll see me with a Snood on!!
Being outside is still immensely difficult for me.
Due to the head/motion issues, it's impossible for me to glance around whilst outside.
You don't realise how much you need that, when simply walking, until you can't do it! Then it becomes immediately apparent.
I'm fairly unsafe outside on my own.
I can't easily watch for other pavement users, I'm terrible at dodging "obstacles" on the floor, and crossing roads is a nightmare since I can't quickly check for traffic.
As such, and with all the other nausea issues, I'm either confined to being indoors, or when I'm feeling up to a walk (which isn't very often, or very far!) I need to have someone with me at all times.
I'm currently getting a couple of walks a month, or thereabouts, and those are usually just around the street and back, or down to the local Tesco, which is pretty much just around the corner.
If you'd like to monitor my outdoor'y'ness, you can do a Twitter Search for @Jayenkai "Today's Stroll", which should bring up any and all walks that I attempt.
Trying to find a fitness regime that doesn't cause waves in my head has been extremely difficult.
The treadmill seems OK at first, but the more you step, the more of a pattern you get into, and then waves grow.
I can usually last about 5 minutes on a treadmill at the most, before having to stop.
I also have one of those little foot-bike-pedal things that you place under your chair and pedal on.
I'm slightly better on this, but even still, once you get into the swing of things your head starts to gently sway, and the waves start forming.
Maybe I need to clamp my head still, whilst pedalling
Exercises involving pull ups, push ups, crouches, or basically anything repetitive will also lead to the same waves of nausea, so it's been incredibly hard to find anything that can help keep me fit.
I'm trying not to give up on my fitness levels, but it's difficult!
Simple things like cooking are mostly off-limits to me.
I can make a brew, or pour water into a Pot Noodle, but standing and properly cooking a meal are complete no-go's for me.
The balance issues and stumbling make for a dangerous scenario when there's hot cooking appliances involved.
Washing or Drying pots can be just as risky, with me stumbling around with large dishes in hand, trying not to break things.
On the few occasions we've bought some flat-packed furniture, I've also been next to useless at helping put the things up.
My mind's fit and well enough to understand the plans, and pass on instructions to others, but standing to help screw things together is an extreme task!
Where head movement is involved, I'm out!
I loved the Wii, and WiiSports used to be one of my favourite games of all time, but I just can't play it anymore.
Bowling is too swingy, Tennis is far too energetic, and I'm not even attempting the Boxing!!
Trying to play Face Raiders - AR on a 3DS is also too much for me, and I haven't dared attempt a VR headset, because I just know how bad it will be.
I've found that trying to play 3D games on a TV will trigger my motion sickness after just a few minutes.
If I play the same game on a Nintendo Switch in Handheld mode, the nausea is significantly reduced, so I assume this is down to either my head panning from side to side on the screen, or that the game in handheld mode slightly moves with me, as I play.
I'm not 100% sure what the deal is there, but handheld is definitely more playable than TV mode.
Also, Mario Odyssey was absolutely hellish for me. Nearly all of the boss battles (and there were a LOT of them) involved Mario and the Boss running circles around each other, and the camera spinning around and around and around.
I still haven't 100%'d the game. Not because it's "too hard", but because it's "too spinny!"
Whilst sitting, I appear to be fine. I can sit, I can code, I can chat away, and for the most part you wouldn't think there was anything wrong with me.
Sometimes I, too, forget how bad I really am.
It's not until I try to actually do anything that things become more evident, and all my issues come flooding back.
I can code.
Thank god I can still code..
I don't think there's anything that can realistically be done to aid my situation. They originally said it'd get better, but I'm not sure it has.
I'm not being sick as much. But that's more down to me understanding WHY I was being sick so much. (The balance/motion sickness)
I've learned to go at a slower pace, and generally move much gentler.
This seems to have helped reduce the sickness quite a lot, but as you'd expect, a little careless motion can kick it all off again.
So, life is slower, but things carry on.
As I say each year, I'll try to get out more, and keep pushing myself a bit at a time.
I know my limits, and I know to push myself without going too far.
Hopefully, this time next year, I'll be able to post a more cheery Jiggity post!