Hydrocephalus, the condition that will make you work for it…

Hydrocephalus, the condition that will make you work for it…

It’s not enough that you or your loved one has been diagnosed with this condition, at least that’s the way I see it, from “life’s” point of view.  (“Life” being whatever it is that controls all the “bad” that people endure).  It’s not necessarily a death sentence but it very well could be (others have succumbed).  And.., it sure will make you work.  You will be tested beyond your limitations, pushed beyond your boundaries and left in a continuous limbo state.

Anyone who tells you that this condition is not as bad as some make it out to be…hmmm…think twice about listening to those people.  I’m all for being positive and trying to see the same side of a situation…maybe I’m just in a negative frame of mind at this point in time (or not).  Maybe I have a different view of the world through my connections with people across the globe who share their Hydro experiences with me.  I can, however, say this much:  Through some hard lessons, I’ve learnt that being cautious and actually discerning between the glass half full and glass half empty people and, varying situations in life, it’s not necessarily a bad thing.  If anything, when facing something with the odds in your favour, I’d say expect the worst and quite simply remain prepared.  (I personally prefer to work with the facts and, don’t like fluff or bullshit – give me truth and reality any day of the week).

We are all different and handle what life throws at us, in much the same way.  However, if I had to be very honest and give you my take on Hydrocephalus, it would be this:

It’s a condition that messes with your head literally and figuratively.

It robs you of things in life (big and small) and, how you choose to deal with that, is ultimately up to you.

When I say it makes you work, I mean it in the following sense:

  • Regardless of what you may think, it exercises the upper hand most times.  However, you will grow strongerbecause you have to.
  • For some of us…family, friends and especially (some) medical staff, will make you work for it.  Be prepared to put up the fight for your life (more than once), just to be heard or taken seriously.
  • It’s a package deal, it’s all yours – warts and all.  You will need to own it going forward and pay all the “costs” associated with it (mentally, physically, emotionally, spiritually, etc).  As for the financial costs associated with it, that goes without saying.
  • It’s not visible to the naked eye, therefore, you will spend the rest of your time convincing others (even yourself at times) that you actually have a life-threatening incurable condition.  That’s by no means an exaggeration…it’s a fact.
  • Others with the same condition will seem better off, worse off or more in touch than you.  Always remember…same condition, different anatomy.  Also, your level of knowledge will grow with experience and in time, you will come to “know” your own body better than anyone else.  
  • You may not have a doctorate in medicine but, you will self-diagnose at the first sign of head pain, running through a checklist and making mental notes despite the dull throb or nauseating feeling that overtakes your body.  Is it stress, tension, migraine or the pressure inside your head..?

Bring your A game even if you don’t want to play, you’ll soon realise, there’s no other choice.  So, the best approach is probably to keep the saying in mind: “Keep your friends close and your enemies even closer”. Hydro being the enemy in this case – never underestimate this opponent or take it too lightly.  Learn all you can about it, ask questions (there are no stupid ones), most importantly, listen to your own body and gut…always.

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!

2 Comments

  • Duncan

    July 25, 2018 at 5:38 am Reply

    Skye again you have nailed it, putting theses words out there for the many of us living with Hydrocephalus.
    Thank you again, I wish I was able to say these things. Lords knows I feel the pain.

    • Skyewaters

      July 25, 2018 at 8:36 am Reply

      I’m happy to be doing it for all of us Duncan😊. Let me be your voice💙

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