There seems to be a universal law when it comes to the way we are treated as Hydrocephalus patients.  (Or, I’m just being overly sensitive – you be the judge of that).  I know for a fact that, what I’ve experienced below and so many times before, is not unique to me alone.  There are many people with Hydrocephalus (thankfully not all), in exactly the same boat.  Some of us avoid seeking medical help, simply because it leads down the same path – over…and… over…and… over again!  Something, I personally, would love to see change. 

I’m struggling to see the difference between where I was, when I started on this Hydro journey, to where I am now.  Regardless…the countless situations, which evoke so much anger and frustration in me, do end up teaching me some valuable lessons.  Sometimes, I’m caught off guard when I reach the point of outward explosion, within a matter of seconds.  I lose my shit, and literally feel every part of me being affected, as my emotions rise.  I never go into these situations looking for a fight or for it to end in a negative way.  Why would I? 

What exactly triggered the last outburst, and consequential emotional spiral, I honestly don’t know.  I don’t think it was one specific thing but, a culmination of a few triggers hit all at once. 

The short version (is there ever one?): 

Visual disturbances a few weeks back, increase in daily headaches, more frequent sleep disturbances (after quite a few nights of sleeping like the dead).  Fast forward a few weeks, tiredness, loss of appetite, waking up with severe dizziness and nausea – lasting all day (24×7), for two weeks before easing up.  Feeling like someone is dangling me by my feet, upside down, from the side of a tall building – like I’m about to fall.  I literally woke up feeling this way, from morning to night.  Laying on my bed, in a half sitting position with my head against the pillow, was the only way I could function. 

By the end of Week 1, it bothered me to the point where I felt the need to act and seek medical attention.  Quite simply, I kept hearing that little voice inside my head – it was more my GP, insisting I go to the hospital if I need to and the category 1 triage letter, waiting for my appointment.  However, a visit to the Emergency Department at that point in time, ended up taking me quite by surprise. 

In a nutshell, it went nowhere.

I went in calmly, hoping for the best though silently expecting it to end like all the other times before and, I stormed out a boiling pressure cooker, threatening to explode!  

In hindsight, there were probably a few triggers (in no particular order): 

Whatever it was, the cherry on the cake, which caused my inevitable explosion, was hearing her say (more than once), “The CT shows no sign of Hydrocephalus, there is no Hydrocephalus…” 

I turned to her, looking her straight in the eye and said: “Hydrocephalus does NOT just go away so, don’t say it isn’t there.  In fact, if you said there’s no sign of pressure, that would be a much better way to put it!”.  She responded, “I know what Hydrocephalus is” and I bit back, “So do I, I live with it every day!”  She knew I was pissed off…giving me a disapproving look, as I walked out of the room.  Refusing to listen to anything else she had to say.   

I knew what she meant nonetheless…but, I’ve just been here SO many times before (a different country though) so, I kinda knew it was pointless. 

It wasn’t exactly how I saw this going...I actually had HOPE. 

Having the usual fallout with my husband after, didn’t help either.  His infamous question/statement, “But what do you expect them to do?  You keep coming back and they keep saying the same thing”, shut the door on the spiral staircase of depression I had seemingly begun my descent on.   

By Sunday, I decided to make an appointment with my GP to get some blood tests done in case something else was causing it.  My thyroid maybe or possibly the lesion in my abdomen – who knows?  (This was me not jumping to ETV Failure as the only and main culprit…or at least attempting to).  I also remembered the repeat MRI request form the Neurosurgeon gave me in March, (in anticipation of me needing it) and went to have that done.  Results still pending. I then made a follow-up appointment to see her again – I got one for mid-November! (That’s 3 and a half months away).  Two weeks…my ass! 

The way I see it, this situation is bloody ridiculous!  It leaves me feeling helpless while life, as usual, carries on with its demands and “normalcy”.   

I do have something to be grateful for though but, more on that in my next post. 

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