Hydrocephalus :  What I wish you knew…

Hydrocephalus : What I wish you knew…

Just because I’ve had brain surgery does NOT mean I’m cured.   

There is NO cure – that’s the reality of the condition. If I have to face it then…it shouldn’t be too hard for you.  And, just because I’ve accepted my reality, doesn’t mean I’m being negative.  If anything, I’m being realistic in my approach.  Not everyone faces a seemingly “negative” situation in the same way.  That’s what makes us humans unique.  Regardless, just because our views and approaches are different, it doesn’t mean you are right and I am wrong or vice versa. 

I have days when I feel good and days when I feel bad.   

Some days I can mask it better than others.  I lose my temper, can’t stand noisy environments and struggle to grasp things at times.  I’ll have days when I am strong and my attitude is in the right place but there will be days (guaranteed), where I will be a complete and utter mess.  Word to the wise – steer clear and nobody gets hurt… 

My memory is shite which makes learning anything new or “getting it” that much more of a struggle.   

It’s embarrassing enough being forgetful, especially in a professional setting. Regardless, I either will or I won’t “get it”, that’s not up to you nor any fault of my own. I will silently feel inadequate in this moment but you will be none the wiser. I may even quietly beat myself up because I “should be better than this”, until I have a little internal pep-talk reminder to NOT be so hard on myself. If my coping mechanism is to ignore what you say because my brain needs to wade through all the fluff coming out of your pie hole, then so be it. I get just as tired of hearing you say, “I’ve told you this before” as you do, having to play the broken record. And, if I do remember things you expected me not to, don’t take it as a sign of me faking. Instead, be as happy for me as I am, that I still have memories in tact. FYI – We don’t choose the memories we retain or forget!

My feelings matter just as much to me.

I’m just trying to do life as best I can, under the circumstances, as we all are. I’m not looking for special treatment but I wish you knew how my heart aches from the lashings of your tongue. I sometimes feel we would be better off without each other because You, Me and Hydro just aren’t a good match. Two’s company, three’s a crowd – or something like that…And one is seriously here to stay, till death us do part. It’s hard enough living with this condition, than to still worry about how all this is affecting everyone else around me. I am also painfully aware of the financial burden, each doctors’ visit creates, without the reminder of the next point below. This is especially true when I come back with a “normal” diagnosis, test after test. Furthermore, it doesn’t help being made to feel like I need a trip to the loony bin. In all honesty, I’m starting to wonder if I shouldn’t rather just endure the pain and discomfort in silence. Like the saying goes “Suck it up, buttercup!

“Doctors like you because all they see is money”

Money is at the root of it all…I’m not blind to that. Sure, there are doctors who are ruled by monetary gains. But, there are some who aren’t, the ones who genuinely care and want to help. It’s a challenge wading through the system to find the genuine ones. This statement evokes a fair amount of guilt, doubt and anger, I sometimes wonder if any of it is worth it? My constant search for answers to the cause of my ill-health, knowing fully that it all ends the same way for all of us anyway. One guarantee life gives each and every one of us is, No one is going to get out of here alive. And, just for the record, I most certainly don’t fear death

“You’re always tired…When are you not tired?” 

I may sleep a lot, according to you, but that’s just my body’s way of recovering and getting back to “normal.  Sometimes I fight a battle you will never know, see or even realise is going on.  I’m not lazy, I just know when to listen to the loudspeaker inside.  And, when I don’t, believe me – I pay the price. Cancelling plans last minute or staying home on a Friday/Saturday night is as social as I can allow myself to be sometimes. If that makes me unsociable, then so be it. My youngest son said this to me a few days ago.  I just looked at him and thought, if only you knew how stressed being this tired, makes me.  Knowing that my ETV is failing intermittently has me on high alert, even panicked to a certain degree.  Waiting for the other shoe to drop, and having to feel like death would be kinder, before I can get further medical help. But, this is not something I tend to broadcast to my family – I’ve said it, explained it, they heard (are tired of hearing it) and simply DON’T understand.

Forgetting I have Hydrocephalus is NOT an option for me. 

I do forget, sometimes, that I have this condition (oh how lovely this is at times). Even if it is only for a short while. But…I have my reminders. (The mind may forget but the body’s physical reminders work perfectly fine). The torture chamber I’m confined to when the pressure is high has no escape route, believe me, I’ve checked all the exits – there are none.

The little reminders aren’t always subtle…(and not limited to this list either)

  • The pounding headache which wakes me in the middle of the night or early in the morning.
  • Insomnia which gives me a booty call (not in a “let me melt all your stress away” kind of way), anywhere from 2 to 4am, leaving me to deal with the effects from lack of sleep.
  • The nausea which takes over and the lack of movement in my limbs…
  • When my world is rocked by dizziness and an unsteady balance, it’s nothing to scoff at.
  • The stress and worry of wondering, “Is my treatment option failing?” (This plagues me more than I care to admit, on any given day).

I laugh because if I don’t, I will cry and that doesn’t do anyone any good – least of all me. 

My eldest son called me a “real space head” a few days ago.  The way he said it, made me laugh but I had to ask him why he said that.  His response, “Because sometimes you just “space out”.  You know like when we’re driving somewhere or you walk into a room and ask out loud “Where am I going?OrWhy did I come in here?OrWhat am I looking for?”.  I smiled and simply responded with, “Yes…I guess I do, do that”.  So, if that makes me a space head then…Meh!  At least we could laugh about it.  

I wish you knew just how hard I try to be like a duck (calm on the surface but paddling like hell underneath).

I’m not faking any of it and fighting an invisible condition, amidst a system which doesn’t always work, is enough to test anyone’s sanity. I’m no longer the same person I used to be, pre-diagnosis but, I’m doing the best I can. I may have lost some things due to this condition and brain surgery yet, my sarcasm and brave facade are still fully intact. I guess this makes me a difficult contender at times…I apologise.

One thing I won’t apologise for though…having this condition. We all endure the things that this life throws at us because let’s face it…Life happens. I’ve had some lemons handed to me on my journey…Some have been surprisingly pleasant tasting (probably more of an orange) and others NOT!

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!

13 Comments

  • Paul Littlewood

    July 15, 2019 at 10:37 am Reply

    After 33 years I had my first revision which lasted 15 years, during those 15 years I had 4 further surgery’s to reconnect the tubing, replace and unblock the tubing, then my shunt finally stopped draining the CSF from my brain.
    I was then told an ETV was the better option for me and I had this procedure in April 2018, but I still had my ‘redundant’ shunt in situ.
    I was told that I had Hydrocephalus because I probably had meningitis as a baby, which my immune system fought off but left my ventricles enlarged. Then before my ETV it was explained that I had NPH, I saw the Consultant last month and all the headaches, nausea, dizziness is something I just have to live with, and that I have Congenital Hydrocephalus and have had it since birth and I face further operations in the future.
    It will never beat me though and I will never give in.

  • Julie Milner

    June 17, 2019 at 5:51 am Reply

    Having Hydrocephalus is definitely no picnic it’s learning to to deal with the aftermath of the condition I was diagnosed in 2015 and had VP shunt in soon after their is memory loss, my balance and co-ordination is affected ,slight headaches I have had a couple of falls and use a walker .

    • Skyewaters

      June 17, 2019 at 5:55 am Reply

      You are so right Julie. It’s a condition which affects most of us differently, in certain ways.
      Thank you for sharing💙

  • Cindy Hirsch

    June 12, 2019 at 5:52 pm Reply

    Thank you for sharing. Your story is so similar to mine. I have had 2 VP shunt revisions in the last 3 months, after 13 years with my original one.Yesterday I found out my reservoir is collapsed. I too, went to Neurosurgeon begging for relief /surgery, as I have not felt well since April. I am complimented for my “courage” for going through so much, but realistically did I, and do I have a choice? NO. I just want to feel better and live life. Your writing is very good and I could hear my own voice in your words. I hope and pray for good health for all of us “hydro warriors”!

    • Skyewaters

      June 13, 2019 at 1:30 am Reply

      Thank you Cindy.
      I’m sorry to hear you’re having trouble. Is ETV an option for you?
      I will keep you in my prayers🙏🏼💙

  • Gloria

    May 29, 2019 at 7:57 pm Reply

    Thank you so much for this article. At age 56, my husband was diagnosed with NPH just last year. Our family is still trying to understand what the diagnosis means. It’s good for us to be reminded that my husband is not “cured”. Our adult children have made some of the same comments that you mentioned here. I have shared this article with them in hopes it will help them better understand what their dad is going through.

    • Skyewaters

      May 29, 2019 at 9:35 pm Reply

      You are most welcome Gloria.
      It’s a continuous learning curve with this condition. Just when you think you understand all that there is to it, you learn something new. Hopefully your children get a better understanding and, your husband the empathy he needs.
      All the best to both of you💙

  • Emily

    May 29, 2019 at 1:08 am Reply

    I could not even get through this without crying because of how much I can relate. I am so amazed how you put feelings I’ve had so often into words!

    • Skyewaters

      May 29, 2019 at 5:11 am Reply

      Hugs to you Emily💙

  • Philip Mastromonico

    May 28, 2019 at 3:51 pm Reply

    Skye, you’ve done it again, a brilliant summation of our lives!

    • Skyewaters

      May 28, 2019 at 8:21 pm Reply

      Thank you Philip💙

  • Ron Patrick Kelleher (Hydropioneer)

    May 28, 2019 at 11:57 am Reply

    You couldn’t have written the truth any better Celeste. I can recall incidents at home where I was battling with my head & my dad walked by my room seeing me on the bed & whispered something under his breath which I knew it was something about being lazy. Another time I walked out of my room the same time my father walked out of his & I startled me which he saw me jump & he made this laugh which wasn’t a friendly.one. I couldn’t control myself & call him on it. These are just a few of many that will forever etched in my mind or for how long I can remember them. I have come to terms with this condition as if I have a choice I wish “family” could! Sorry I just had to get this out.

    • Skyewaters

      May 28, 2019 at 8:21 pm Reply

      The people around us just don’t get it, they never will unless they truly want to.
      Getting it out is sometimes the best thing for us Ron. Why do you think I have this blog?😉

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