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Back to Jayenkai's Blog ( Created 22 August 2014 | Last Edited 22 August 2014)
Health Update : August 2014
Last week saw the two year anniversary of this post, where I waffled and rambled on about my health condition. Mum suggested it was about time to write an update, so this is that!

Two years on, and although I'm marginally better, I'm still somewhat stuck in a fairly similar position.

Since the whole thing happened, I've spent much of my time sat lazily on the couch. Life is passing by, as days, weeks, months sail past and I continue to sit around, merely coding, playing games, making little paper arcade cabinets, and otherwise wasting my time.

The tumour is gone, and doctors say that recent scans show no signs of it re-emerging. My fourth ventricle is still enlarged, but the shunt is in place to drain all of the excess fluid away, and that appears to be working just fine.

My balance is the crux of my current problems. Something, somewhere, has affected my balance quite severely. Whether it was the tumour itself, or a side effect of one of the many brain ops, I'm not sure.
The doctors have scanned and double checked, and see nothing obvious, and I've had all kinds of inner-ear tests from the Physio team, but they simply revealed that it's not an inner ear issue, and is instead something much more severe. A case of "you'll have to live with it", as opposed to a fixable complication.

As a result, my movement is still limited. During my time with Physio, they helped me recognise my limited movement, and gave me a few exercises to help regain the movement that I'd lost.
As a result, my walking ability has somewhat improved, but I'm still limited in my head movements. Although I can walk* down the street, for example, I can't really look around to watch for oncoming traffic, or step aside to let other pedestrians past. If you see me out and about, you'll see my Mum with me. I'm incapable to heading out alone. It's a dangerous world, out there!!
(*I have the stability of a staggering drunkard, and can barely keep in a straight line for more than a few steps!)

The daily sickness has mostly worn off, and I can generally go about my days now without being too queazy. This is, however, due to the fact that I've trained myself not to overexert myself. I've found that if I push myself too hard, I tend to become very queazy, and pushing any further... Well.. That's when the sickbucket comes in handy! Even a simple task, like standing to have a shave, requires a good ten minute rest period afterwards.
The sickness mostly shows up after a lengthy burst of energy. Some days I can make the walk to the shops without any issues, whilst others I'm sick fairly soon afterwards. Quite what causes it on some days but not others isn't something I've managed to figure out, yet, but I'm sure that if I keep an eye on things, some kind of pattern will emerge.

Over the past few months I've bought a WiiU with a WiiFit setup, for monitoring my step count, and watching my balance. Keeping track of these stats show that, although I'm starting to move a little further, I'm still not really making it any further than to the local shops and back. And even then it's only once, maybe twice a week. I've yet to manage a whole week of shop-walking, something that I've been aiming for, for quite a while.

Another of my goals is a trip to see the "new" Mecanno bridge. It's been nearly three years since they erected a large Mecanno-esque bridge, fairly close to home, and yet I've been too ill to take the trip to see it. One day, I'll make it!
But not yet. I'm still struggling with short trips to the shop. I'm not sure I could make it all the way to the bridge and back!

In the meantime, I continue to sit about, and not do much. Thankfully I've got my coding to keep me occupied, and have a great online community to keep me sane. I'm not sure how well I'd've coped had it not been for coding, family, and friends!

Thankyou all, for your great support, and kind words, over the past couple of years.

I'll post another waffling rambling health update in a few months

Latest Comments

Posted : Saturday, 23 August 2014, 11:03


*chronically ill solidarity fist bump!*

Posted : Saturday, 23 August 2014, 11:31

I'd join in, but the iPad might not survive!!!

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