Finding the words for what I feel in my head

Finding the words for what I feel in my head

At times, I get a slight throbbing feeling at the right bottom side of my head…I became aware of this a few months ago, though I thought nothing of it at first. Then, a few days ago, it nagged a little more than usual.  I visualised this spot to be where my ETV possibly is, as it left me wondering if this is where it resides.

I ignored the dull throb, thankful that it wasn’t causing me any pain but wondering if it would tip the scales at any moment. It’s like watching someone yielding a knife at you but you’re uncertain if they will actually take a stab at you or not. This feeling is filled with the same amount of uncertainty, fear and anxiety of the unknown.

Usually, the throbbing goes away after some time and doesn’t last too long. However, this time it lasted longer than normal, escalating and making my head feel…I struggle to find the words. How do I describe this?  Maybe something like this:

  • There’s a “full” feeling in my head? Or…
  • It feels as if I have pain but it’s not excruciating and unbearable? Or…
  • I feel off? Or…
  • I feel dizzy and need to blink my eyes a few times? Or…
  • I flex and arch my neck, stretching from side to side?  (This feels like a bad habit I’ve developed, repeated more than once). Or even…
  • Something doesn’t feel right inside my head?

I got through the day and made it to 4 o’clock, time to head home but I was left with these feelings and thoughts…best described as:

  • I start having thoughts of death and having to get home to see my kids…
  • A fear rises up inside of me and I question myself…
  • I never feared death, I don’t fear death but I don’t want to face it either…not yet.
  • I need to catch the train home, get in my car and drive home to my family.
  • I make deals with God all the time…not now, not like this, not here.
  • If I were to collapse on my way, would anyone even know that I have my medical info in my phone?
  • What if someone stole my phone? No, that won’t happen here…this is New Zealand.
  • What if there’s not enough time to get me to the hospital?
  • What if the emergency staff don’t act quickly enough and find out that I have Hydrocephalus?
  • Damn it! I pray all the time that I can just make it home to my kids and husband…
  • I’d rather if something were to happen, that it happen here.
  • I buy bread on autopilot before catching the next train home…because life doesn’t stop around me and my family will need lunch tomorrow.
  • I’m thankful to make it home and flop onto my bed.

Head off

The full feeling in my head hasn’t left me…I feel as if I could literally screw my head off my neck, clear out some of the fullness and rearrange everything back into order. Just a little breather from whatever stress, strain or crap I’m feeling. Like when you wear a tight pair of shoes and give your feet a break by removing the dreaded source of discomfort and pain…even if it be only temporarily.

Heavy and off…that’s how it feels. Happy to hit the pillow and relieved to close my eyes…

A few days later, and I’m left feeling dizzy and nauseous…

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!

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