Hydrocephalus the Elephant

Hydrocephalus the Elephant

Hydrocephalus has become…the elephant inside my head the room.  The thing we never talk about, the thing people around me know exists but pretend is not there. The thing that, despite my trying to do the same as those around me (when in Rome, do as the Romans do), I’ve failed miserably to push aside, time and time again.  I’ve only done this because I want to believe with all my heart that it’s no longer a problem in my life.  I want to believe that I didn’t actually have Hydrocephalus, to begin with.  I want to believe that I’ve been “misdiagnosed and more importantly, I want to believe that I’ve been “cured“.  Passing my 8-year milestone a few weeks back, I guess I’ve just started believing that maybe, just maybe, I can actually be one of those people who go years (decades even) without needing any further treatment…

It really doesn’t matter how I planned on starting out this new year, not when I’ve come face to face with the “elephant inside my head” yet again.  3 days into the new year is all it took…

To be reminded by a soft thudding that there actually is a reason why a normal headache would have me waiting and watching to see which turn it takes.  It’s quite similar to watching the beginning of a storm, it could escalate quite violently and wreck havoc causing one to hold their breath and watch in agony as it tips the scales.  Or…it could just fizzle out and die, maybe even be blown in a different direction by the wind in which case, you give a sigh of relief.  That was much my reaction after that headache a few days ago.  It turns out it was just a false alarm. Maybe it’s just my Thyroid acting up and messing with my head, apparently, “it’s the control centre of everything within your body” (just to complicate matters a little more).  Or maybe I was just dehydrated – we have been having extreme heat (as extreme as it can get for Wellington, New Zealand – a rare occurrence ).  Admittedly, the heat even had me looking over my shoulder and wondering if my old pal would come tapping me on the shoulder.  However, the storm which has been lashing out over parts of Australia the past few days apparently swept over to our side, to fizzle out and die I suppose.  Thankfully, it brought with it some much-needed rain and has certainly cooled things down a bit.

Then, this morning, instead of being woken up by an alarm, I felt a familiar pain in the back of my head – too intense to ignore.  It was the kind of pain that had me thinking immediately about and staring straight into (and seeing all too clearly) the eyes of the elephant inside my head.  The thing is, no matter what I do or how positive I try to remain, I can’t forget about it.  Ironically, when a pressure headache hits me, it literally feels like an elephant trying to squeeze out of your head…Ouch! (would be an understatement)

I refuse to let it scare me though…I refuse to let it overpower me.

I might not have any “weapons” to fight against any of it but I’m willing to believe that there must be a reason why I’ve gone 8 years (especially the last nearly 6 years) without proper medical care for my Hydrocephalus.  More importantly, there’s a reason why I’m still standing and facing another day or rather I should say, have just reached the end of another day.

As for tomorrow…no one really knows what that holds…or if we’ll even live to see it.


  • Richard L Fry

    January 9, 2018 at 9:45 pm Reply

    I totally understand your aggravation, and apprehension. I am now on my 5th shunt, not many compared to others, in my 59 years, 54 since diagnosed. My current shunt, a programmable one, is at it’s lowest setting. My neurologist says that my scans all look “Normal’. But I am still in discomfort. My Ventricles are “Slit” like paper thin slit. Any dilation, and I have pain! My neurologists say that I need to decrease my pain medication to avoid rebound headache, but then I just lay down n’ try to go to sleep. But then I wake up in the middle of the night. It gets my clock off sync, an ruins time with my family.

    • Skyewaters

      January 11, 2018 at 8:39 am Reply

      I’m sorry you have to go through that Richard. This condition just doesn’t play fair, does it?
      I suppose it’s about finding what works for you most of the time, despite what the “specialists” have to say.
      I pray you get some relief…

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