Hydrocephalus:  Are you waiting for the other shoe to drop?

Hydrocephalus: Are you waiting for the other shoe to drop?

Yesterday morning, a “weird” nagging feeling at the bottom of my head woke me from my sleep.  Immediately opening my eyes, the first thought that struck my mind was “What the heck is that?“.   A nanosecond later, I wondered if it was my ETV, especially since I pictured the location of the spot to be at the floor of my 3rd ventricle.  It was in line with my right eye and slightly below my right ear.  I lay still, closing and opening my eyes wondering if it was just going to be one of those strange pains or if it was going to last long enough for me to be worried.  I started the debate in my head that even if it was “something“, I wouldn’t know how to explain it to a doctor other than using the word weird and, even more so, to whom exactly was I going to say this to anyway.  I could go to my GP (If I managed to get an appointment the same day…more likely not) or to the Emergency Department at the hospital (though experience has taught me this is a complete waste of time and fruitless).

The feeling eventually subsided but because I’ve felt it a few times before, it lingered in my thoughts for a long time after that but was replaced by the normality of the day.

This morning, my daughter, who has been unwell since I fetched her from school on Monday (she has chicken pox, subsequently developed a bad chesty cough and complained of a headache when she moves her eyes), woke me up before 6 am and started vomiting.  The chicken pox I expected because it’s been going around school and was only a matter of time before she got it.  A chesty cough worries me every time because when it becomes really bad, her asthma flares up, something she developed when we moved to Wellington.

However, the most worrisome thing about all of her symptoms (for me), would be a headache.  I don’t like it when any of my kids complain about a headache.  This is probably because I know better than to belittle such a thing, it just unnerves me.

It got me thinking…

Any little feeling in my head, makes me sit up and take note, simply because I know that the ETV can close up and that means another brain operation.  I watch and wait to see if it will turn into something more or if it’s just a one-off thing that will be swallowed up into the Bermuda Triangle of my memories.  Or, will it be a repeat sign of something I’ve felt before?  The worst part for me about it is that the questions will always beg “Is this something serious enough to warrant action?” and “What am I going to do about it?“…(queue helpless feeling).

Similarly, with my daughter’s headache, I feel apprehensive to find out what’s going on with her as well.  I know Hydrocephalus isn’t hereditary but there is no way that I can in good conscience ignore the fact that she’s been complaining of a headache for the last couple of days.  Also, as someone who had Viral Meningitis twice, I have even more reason to take a headache in children serious.  It’s partly the cause of my Hydrocephalus and definitely not my friend.

This, in turn, makes me think about parents of children with Hydrocephalus.  It must be just as frustrating and scary for you/them to figure out if the “pressure is on” (Pun intended).  How do you know if your child is being affected by Hydrocephalus when they are unwell?  How do you distinguish if the things they are complaining about is just a consequence of them being unwell due to a virus or something else?

Will we ever be able to “relax” when it comes to the messages our bodies send?

This is a normal way of living for me.  I don’t know any better.  In fact, if anyone had to tell me any different, I would think they are abnormal.  Questioning things, more than the average person is probably one thing that I have been left with throughout all of this.

My last post, Am I depressed, has also got me thinking and re-evaluating my life in so many ways.  I can honestly say that if it were not for faith, I would not be able to get through this.  I may have wavered from time to time but that’s beside the point.  Faith is what grounds me, it’s what keeps me sane when I feel like losing the plot…It’s what carries me during the times when I question the most.  If I had to admit it, as easy as it is to give up my faith and say I don’t believe anymore, it’s just as easy for me to recognise that I was wrong and pick it up again.

However, I remain vigilant in response to what I’m feeling while Constantly waiting for the other shoe to drop…I will continue to Float Faithfully from this point forward because I simply am not strong enough on my own.

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

  • minionmayhem514

    September 17, 2016 at 1:07 am Reply

    Whenever anything is a tiny bit off with my daughter, I immediately think “shunt failure.” Doesn’t matter what it is. Slight fever-shunt. Crying-shunt. Didn’t finish her bottle-shunt.

    I’ll be so happy when she can talk.

    • Skyewaters

      September 18, 2016 at 3:21 am Reply

      So nice to hear from you again! I was just thinking about you this morning and wondering how Little Miss Minion is doing 🙂
      I hear you…hang in there, before you know it, she’ll be telling you all sorts of things.

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