Hydrocephalus: Have you become complacent?

Hydrocephalus: Have you become complacent?

When you live with a condition like Hydrocephalus and, have the challenges that come with it, it’s easy to reach a level of complacency.  However, the kind of challenges I’m talking about don’t include the physical but more the medical care (specifically the lack thereof).  So many of us (thankfully) have excellent doctors to whom we entrust our lives, in more ways than one.  But, (I hate that there’s always a but…), too many of us are living without the “comfort” of knowing we’ve got a number to call when things go South.  I wish it were as simple as just going to the Hospital Emergency Department but that’s a whole other challenge, all on its own.

The thing about becoming complacent though is, it only takes one thing or a few big ones to literally give you a shake.  In the Hydro world, it could be anything, from someone succumbing due to a shunt breaking inside of their head or seeing a tweet like the one below:

Why is it that some doctors take the stance of these two, yet I’ve consulted with so many who literally don’t share the same view?  It boggles my mind…

I am in no position to preach to anyone else (so please don’t take this post as such).  What it boils down to is, knowing the importance of having a check-up, despite what those around you might think.  Like family or friends who believe you’ve been “cured” since your last surgery…Hell, I’d like to believe that beyond a shadow of a doubt!  I don’t even think it’s a case of just being paranoid.  Besides, erring on the side of caution is better, especially when it’s your own life at stake.

I suppose the thing that hits home to me about this tweet is that after reading the question, I answered: “Yes…” (withdrawing my head, in shame, like a tortoise).  Maybe it’s the Capital letters which feel like they’re shouting at me or the fact that they stand out to make the point of the serious nature of it all…who knows.  Regardless, it’s brought me to the realisation that I DO need to take it seriously enough.  (It’s been haunting me ever since I read it).  It certainly has my interest piqued to the point where I feel like what they have to say is probably something of great value.  But, the cost alone of registering feels unmanageable.

If anything, it’s made me realise that, it’s my responsibility (to myself) to ensure that I get the diagnostic tests done to make sure this little hole inside my head is doing its job.  This, despite knowing there’s not much I can do about my circumstances/obstacles right now, not at this point in time anyway.  But, it doesn’t mean I don’t plan for the future or just brush it aside (my memory issues certainly ensure that I forget about it all long enough though).  Being faced with financial struggles (these tests cost a fortune if you don’t have the money or the luxury of a working medical system), this is but one such obstacle.  I know others have the same and even worse things to deal with…I am not unique in this regard.

It’s a difficult position to be in and one I would much rather not be in, to begin with.  I don’t have a doctor managing my Hydrocephalus, I’m doing it as best I can on my own.  I know, that sounds a bit impossible and probably grossly negligent on my part but I’m literally floating faithfullyI have no other choice.  Admittedly, I get frustrated and feel helpless from time to time but…

Does that mean I give up?  Nope!

Just as much as I know there are doctors out there who let us down from time to time and Fail, I know too that there are good doctors and my good doctor is out there.

As with most things in life, when it’s beyond your own control, then there’s no use worrying yourself too much over anything (easier said than done, says the worry wart).

If this is you right now, know this:

Acknowledging the fact that you need to do what it takes to get checked, no matter the obstacles in your way is a step in the right direction.  Then think about ways to overcome your obstacles, whatever they may be. You owe it to yourself to do what’s right for you, regardless of the people around you.  It’s not an act of defiance or attention seeking, it’s due diligence and putting yourself first.

Because, as the saying goes, how can you take care of anyone else if you don’t take care of yourself first?

At least just think about it…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

1 Comment

  • Rob Sander

    June 26, 2018 at 4:06 pm Reply

    Dr.Williams is my neurologist in Issaquah,WA. Have never had to have any surgery’s since I started seeing him,only adjustments.

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