“Are people with Hydrocephalus unsociable”

“Are people with Hydrocephalus unsociable”

A search term used by someone who stumbled across my blog…

It got me thinking and wondering why someone would type that particular string of words into a Google search.

A few weeks ago, I had a discussion with a colleague who, after hearing about my book, Hydrocephalus: Floating Faithfully, wanted to meet up with me for a coffee. “Maybe you can help me understand my Dad! He has Hydrocephalus too” was her response. I smiled to myself and agreed to meet with her.

I told her how one of the first signs aside from an escalating headache, was my foul mood. The words I used was “I become a total bitch and then regret it afterwards…but I can’t help it. I don’t want to be around people and noise irritates the crap out of me among other things“. She smiled and said, “Are you sure it’s just not early signs of menopause?” I had to smile at this.

First of all, I don’t think I’m old enough to be going through that just yet. (Though I’m also not entirely going to disregard the possibility).

Secondly, those words made me feel like I was trying to explain a Hydro headache to someone “who also suffers from really bad headaches” but does not actually have Hydrocephalus. Our “headachesARE different to people who do not have this condition.

She told me how her Dad gets into a foul mood and is just plain miserable at times. All I said was, “it’s a fine line and could quite possibly just be his personality“.

This is what got me thinking more after reading the search string.

Would it be fair to say we are unsociable when we are actually not? When you have a common cold, nose clogged up, head and body aching, feeling drowsy and just bleh! No one expects you to be “sociable” under these circumstances. But, that’s because they can “see” you are unwell.

We’ve all felt this way…so I’m sure you understand what I’m getting at.

I looked at myself over the past couple of days with Christmas and New year. I don’t think I was unsociable but I’m going to assume I probably appeared to be, to those around me. I wasn’t drinking along with everyone else and therefore disadvantaged at that level of joviality. I decided, on my own, to give up alcohol completely because the hangover the next day is just not worth it. It’s a trigger for my Hydro headache and HAD to go.

I sat in the company of those around me, and at times found myself rather retreating to the bedroom to lie down or watch a bit of TV. This was simply because I just wasn’t feeling the spirit of it all. I also nearly slept into the new year but decided to get up and join everyone else as they wished each other at the strike of midnight. I realised a long time ago that I needed my sleep like my body needs to breathe. Lack of sleep is a trigger to my headaches as well so, I make sure I get the required amount of rest.  However, being in the moment with everyone else, was something I definitely don’t regret.  Alcohol does something to your personality, your way of thinking and just plain level of enjoyment.

Explaining all of this to the people around us is sometimes one of the harder things we need to do…and, even harder is their understanding and acceptance of how it all affects us. I wish I could give each person I come across just a few hours or a day to walk in my shoes when the Hydro clock strikes and my number is up. Then I realise, it’s not about them understanding, accepting or even caring enough to make me feel better about the whole situation. It’s about me doing what is best for myself at any given time because I’m the one who has to live with this condition and am therefore the guardian of my own body. Even if it means I end up “appearing” to be unsociable.

If I had to admit to it, then yes, I have become less sociable. However, I can still share a good joke, I can still laugh and I do find enjoyment in different things in life now. I had my time to drink and be stupidly drunk…I enjoyed it at the time. Then, there came a time and I made a decision too important to mess up. Why do we need to drink to be happy or enjoy ourselves? Why do we need to party till the early hours of the morning? Why can’t the people around us, not just accept the life we’ve HAD to accept and be happy with the time we do spend with them? And, why is it so easy for others to label us “unsociable” when all we’re doing is everything we need to, to feel good for another day?  Especially, since those days are sometimes few and far between.

If I had to answer the person who typed that search string, I would say:

People with Hydrocephalus are not unsociable, they’re simply surviving life as best they can and, that should be enough.

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!

No Comments

  • minionmayhem514

    January 7, 2016 at 3:52 am Reply

    This is a great explanation. You HAVE to take care of you first, and people who don’t have it/deal with it just don’t understand. I hope your etv checkup went well, if you had it already.

    • skyewaters

      January 7, 2016 at 8:12 pm Reply

      Thank you 🙂 Not yet, I’m still away on holiday but will look into it when I get back.

Post a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.