Hydrocephalus: Isn’t it ironic?

Hydrocephalus: Isn’t it ironic?

My husband fears me having more brain surgery and would rather pretend all is well with me. When it comes to Hydrocephalus, I fear so many things too, including sharing his fears. I understand what drives it. However, I don’t have the luxury of pretending all is well, especially not knowing all that I do about this condition and how it’s affecting my body.

A temporary loss of vision today, followed by a slight headache, had me freaking out while Christmas shopping. This is nothing new to me though, I’ve had it before. The squiggly aura on the side of my left vision field and a blockout view on the right. Looking at his face, I could only see one side. Focusing on a price tag, I could only see 2 out of 4 digits. I blinked repeatedly thinking it was just my eyes playing tricks on me but it stayed that way for quite a while. 

Do you know how quickly one can have a full on debate and overthinking conversation inside your head?

Something along the lines of; What the heck is this? Why now? It’s Hydro…NO! It’s just a migraine. But, what if..? Check the signs and symptoms. Assess the pain, if any. Wait for it…Is that blurry vision accompanied by some kind of aura, colours, squiggly lines, etc. Note the nausea, dizziness and confusion. What scale is that on? What else am I missing…Ooh, I feel a pulsing throb at my burr hole…Dismiss and ignore it all.

Those around you are none the wiser as you silently freak out!

I calmed my inner self down, rationalising that it was probably just the start of a migraine as I waited for the insane head pain that accompanies it…It never came. At least, the pain that ensued was tame and mild in comparison to what I’ve felt before. My lack of energy increased as I grew listless and all intentions to spring clean, flew out the window. I went from happy go lucky to the total opposite in a matter of minutes. Sigh…

WARNING: Vent ahead.

I hate this flippen condition! I despise all it’s unknown intricacies. I hate that it feels as if I’m just a pawn and don’t know all the rules of the stupid game. I want out so badly, to just relinquish the title and take the loss. I’m over it…Done! I’m tired of feeling weak. Of not knowing if I have enough left in me, to keep fighting. It’s a fight I feel doomed to lose, knowing fully the Hydro bully will be laughing it’s ass off in the other corner!

It’s a hopeless situation. If you don’t fight, you’re told to keep on doing so. If you do fight, you’re asked why you keep pushing the doctors. Going to the hospital emergency, countless times before, has taught me that it just isn’t much of an option (for me anyway). Or, you’re told there’s nothing wrong. Or, despite your symptoms, tests show nothing obvious requiring immediate action. Therefore, you simply have to find a way to suck it up, ride the roller coaster and pray it all calms down to a bearable state. Either way, I feel like there’s no way out.

So, what are you to do when you feel “unwell”?

When you don’t know if the partial loss of eyesight is just a migraine rearing it’s head or…something else? The insane tiredness and loss of energy, lack of appetite and nausea, makes it known who’s in control. Given my experiences over these past few years, I’m pushing and forcing myself to think it’s just a migraine because that is what’s “more acceptable and tolerable”, by those around me. Hard as it may be. My fighting spirit has been broken yet, I prepare myself for whatever lies ahead. The fear rises inside of me and slowly ebbs away as I soak in a warm bath and let the tears fall where they may. The same fear my husband feels…

Game, set, match…I see you!

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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