The reactive nature of Hydrocephalus 

The reactive nature of Hydrocephalus 

As I’ve mentioned before, I work in IT and have always had the approach that being proactive is better than being reactive.  (In fact, this is my approach to life in general).  If you have the opportunity to solve an issue before it becomes a problem, then why not do that?  It’s like finding a nugget of gold in a sea of uncertainty.

When I was diagnosed, I not only took on this condition, I also took on the responsibility of being the caretaker of it especially since I’m on the frontline of what my body feels.  I have the advantage of feeling when something is wrong and not going well, inside of my body.  This to me is the nugget of gold that doctors need to acknowledge and take more seriously…but, in my experience, have not.

Sadly, I’ve been dealing with doctors who prefer to be more reactive, something I’m feeling more and more helpless to change.  I know that there are some people who don’t like the fact that doctors are being put down (and I do most times…).  However, I don’t believe that I do it with ill-intentions, I’m simply relaying my experiences.  And, I’m not naive enough to think I’m the only person in the world going through this either.

So many times, I’ve read posts where people are asking “Should I be worried about XYZ“.  The symptoms are there, you’re already aware that “something” is happening.  I’ll acknowledge that in certain situations, living with Hydrocephalus, we cannot always be proactive and it does require us to be more reactive.  I accept this.

My struggle is with the situations where we (patients and medical teams) are afforded an opportunity to do something before the s**t hits the fan.

Or am I living in a fantasy world?

Take for example the fact that I was told: “Most patients I see are in a coma“.  I find it very difficult to process this statement to a point of comfort, especially when it leaps out of the mouth of a learned physician.  Correct me if I’m wrong but, isn’t a coma a tricky spot to be in?  The nightmare for me in that instance does not only lie in the fact of not knowing when and if you’ll ever wake up.  But, what about the effect be, on those loved ones around you or the financial impact it might have?  So many things…so much uncertainty.  Also, the way it was relayed to me, left me thinking that if that happened to me, it would be a simple case of using smelling salts to wake me up.  Easy peasy…I THINK NOT!

The reality of living with this condition, is that being reactive trumps the slightest desire to be the opposite thereof.  It’s simply not a luxury afforded to all…

2 Comments

  • Jill

    September 6, 2017 at 6:47 pm Reply

    I have not had that said to me myself. I am astounded the you had it said to you. I do relate to everything you say. It’s like a silent condition nobody knows nobody sees nobody understands. Living in fear of something going wrong and nobody is going to help!

    • Skyewaters

      September 7, 2017 at 1:18 am Reply

      Thanks Jill! I’m vocal about this because I find the care unacceptable. On the flip side, if I get the opposite treatment, believe me the people who read my posts would know about it. For once I wish I can get a break and publish a more positive post.

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