Hydrocephalus: Saying “I’m fine…”

Hydrocephalus: Saying “I’m fine…”

When someone asks me how I am in general, but especially, after a Hydro “episode”, I often respond with these 2 little words. It’s instinctive. The truth of the matter is, I don’t know that for sure. How do I truly know that I am fine..!? Fact is, I don’t (Truth). 

Surely, something must be causing me to feel this way…

I’ve become so accustomed to being knocked down by an “episode” and then slowly recovering from it. I’ve become so used to responding with “I’m fine”…even adding a smile. I’ve become so used to “bouncing back“, pushing through and ignoring my physical discomfort. But, the more I respond this way, the more I realise, I don’t flippen know that for sure!

I’ve even become used to the painfully “visible silence” and “discomfort” of others, whether it be face-to-face, via a call or even a text, who simply don’t know what to say. To you, I say: 

I get it!

You want to show your support but you don’t know how. It’s not easy to find the words to something so complex. Incurable conditions make it hard for everyone involved. I get it…

You see me going through “stuff”. You hear my constant plea. You lift your head and raise a hand to somehow comfort me. But…you stop yourself. I get it…

It’s hard for you to find the words. It’s hard for you to fully understand. You want to make my world better but somehow…you don’t know where to start! I get it…

If I could offer a word of advice perhaps…

Just be there to listen. Though, bear in mind, sometimes silence can speak volumes and may cause me to take it negatively. However, you don’t always have to respond but knowing you care, helps me get through this. Regardless, I’ll continue to give it my all, I have no other choice. I’ll pull through, as I always do and for now, I know, You get it!

It’s as if these 2 little words, “I’m fine“, have a momentum of their own as they lunge from my brain and out of my mouth. I don’t control it and yet…I do. If I had to be honest, I probably will be fine…until the next time. And, true to the Hydro lifetime guarantee, there will be a next time!!!

As for the word “fine” itself, I don’t really know how much weight it holds, when all this takes it’s toll on you – mentally, physically, etc. Going every couple of months in-between, experiencing the same symptoms, doing my own due diligence and ruling out everything other than Hydro first – is exhausting. None of which, isfine”.

Cindy said it best this week; For us, (living with Hydro), it’s a matter of saying; “when does the ride stop and I want to get off NOW!”.

In fact, if you really have to know, more than anything in this world, I do want it all to stop. I don’t want to have to second guess myself, thinking that it’s not bad enough to warrant a trip to the hospital. Nor do I want to have this feeling of anxiety at the thought of being brushed aside because the doctors can’t find anything wrong. I don’t want to see how far my pain threshold will go this time, compared to…all the other times before!

I don’t want to feel guilty about neglecting my daily household chores and not being present for my family. Hell! I don’t even want to feel guilty about not feeling well enough, to take the dog for her 6am walk (her internal clock is spot on and she’s knighted me pack leader! In dog terms, she’s become my shadow). But, I’ve found a way to deceive her.

The house we bought from an 80+ old lady a few months back, has shutters on most of the windows, which blocks out all light. (We jokingly refer to them as the garage door). They cover me in sweet darkness, which is so welcome when my headache hits. And, successfully fool her into thinking it’s still night time! At least for a little while. If only all things in life were as simple 🙂

Maybe next time someone asks me, I’ll practice saying; “No, I’m not fine but, thanks for asking”.

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!

4 Comments

  • Vicki

    August 3, 2020 at 8:04 pm Reply

    Thank you for this blog. I was told by a friend that now I have a shunt, I am cured. To that I said nothing as I thought to myself it’s a silent condition that if you allow it, rules your life. I have an amazing Boss who recognizes some days for me are harder. He simply drives me home saying today my disease comes first. I will continue to work as long as I am able, it’s my norm. I smile because I am here and give thanks for understanding family, friends and my amazing Boss🙏

    • Skyewaters

      August 3, 2020 at 10:12 pm Reply

      Absolutely! I’m glad you have a good support system, it certainly helps💙

  • Cindy Hirsch

    July 31, 2020 at 9:12 am Reply

    Wow- my sentiments exactly. sometimes it’s just a touch on the shoulder, a call that is not about hydro, a distraction that means the most to me. I am a hydrowarrior, but not by choice by any means. Having my Neurologist tell me he is so sorry for my suffering and that he believes me as i describe both atypical and typical symptoms, was the highlight of my week. Words matter and your insight to our hydro journeys is reassuring and validating. We are not making this up. We are not lazy. We are in constant and chronic pain. But we are certainly NOT fine, just surviving. Thank you for blog and your words. 💙

    • Skyewaters

      July 31, 2020 at 9:58 am Reply

      Absolutely, you are most welcome! And, thank you for providing me with validation too💙

Leave a Reply to Cindy Hirsch Cancel reply

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