Hydrocephalus: A muddled state of affairs!

Hydrocephalus: A muddled state of affairs!

How quickly, or often, does your brain go into a muddled state?

I find that having an idea is one thing, especially a good one but, when it comes to delivering the pitch, conveying it to someone else…I totally end up like a cat caught up in a ball of yarn! It’s crazy sometimes and, very frustrating. Some might be surprised by this, but do you know how many times I have to proofread my posts before I click publish? Most times frustration trumps and I hit the button regardless…

The perfectionist in me doesn’t help either…

Having an idea and plotting out its path, from start to end, is something I used to be able to do, effortlessly. Now, I have to draw it out on a whiteboard, trace the steps and rework it, till it fits. Like a painter, I step back and take in the canvas, searching for the gaps that need to be closed. I go over it, filling in any blanks and in the end, I get it close enough to “perfect”.

Procrastination and indecision have become my curse!

Like doing one of those air balloons puzzles – size small! I know what the end result is meant to look like but getting there is a whole other story. Don’t even talk about coming back to it the next day, with my short-term memory challenges, sometimes it’s as if the slate has been wiped clean…

Unless I’ve made notes to guide me through, I’d be lost and right back to square one.

However, determined as I am, get there…I will! So, if you find yourself faced with this kind of challenge, find a way that works for you. We all have different learning styles. Maybe the one you’re used to no longer works as well as it did before. Maybe it’s because of all the surgeries you’ve had or the effects of Hydrocephalus.

Whatever the reason, remember, brain surgery equates brain injury.

All this means (not minimising it), is that you need to find a new way of doing things. Visual learning works best for me now, whereas before, I could sit and read a book and actually commit it to memory. Post diagnosis at age 29 and surgery, my memory sucks, so I don’t stress myself out unnecessarily, by forcing my brain to remember stuff (no matter how big or small). It took quite a long time to get to this point…

I still have the same fight today with certain members of my own family as I did a few years back, something they will just NEVER understand. Their problem, NOT mine.

And, when I go on the defensive, I know exactly how off putting and “rude” I sound. That’s thanks to the equation of: their ignorance x their bliss = my reaction. I refuse to let someone make me feel like I need to do better or apologise for something over which I have zero control. Being accused of faking, even if only implied, or asked: “Why do you remember some things so well but others not?“, is an unfair question and one that deserves no answer or substantiating.

It still causes me pain despite the little reminders and self-talk I have…sigh!

A muddled brain is no fun, I wish it didn’t feel so debilitating and there was an easy way around it. The trick, I’ve found, is to find what works for you then stick to it. Unfortunately (or not – see example), this is just another invisible side effect bringing with it some “challenges” …for lack of a better word.

As an example: I used the “invisibility” of my challenge a few weeks back, to my own advantage, with someone whose name I couldn’t remember. I had spoken to him before and even greeted him with a smile on more than one occasion, he introduced himself a long time ago, so his name was in there…somewhereor not! We were having a chat about something work-related and I needed his technical help. He asked me to send him some information via our internal chat so, because I couldn’t remember, I said very cool and calmly (while having an internal, Oh crap moment!), “Would you mind showing me how you do blah, for interest sake?”. He agreed, only too happy to show and tell, as I followed him to his desk. His name was just above his screen (Something I knew and the reason why I asked, sneaky, I know 😊) but…crisis and embarrassment averted! Craziest part of it all, he has the same name as my brother-in-law so how that didn’t stick, I honestly don’t know.

Does it get any easier?

Personally, I don’t think it does. I think you develop coping strategies and find what works for you. Biologically we age and with that comes the generic signs of ageing, which just masks and heightens the effects of this condition, and treatment. Thisright here…makes it all impossible to deal with. Slotting right alongside the old, “Oh, everyone’s memory is bad” or “I get bad headaches too” responses people, who don’t have Hydrocephalus, give you sometimes! There are some who mean well and probably don’t know what else to say. However, it feels like they’re minimising the seriousness of the condition and the challenges you have to live with and overcome – intentionally or not, who knows.

Personally, it feels like my brain is in a constant muddled state and the times when it’s not, it doesn’t take me very long to go there. Feeling like a tangled mess is my norm!


  • Merri

    December 20, 2019 at 2:24 pm Reply

    I am 3 years post cerebral aneurysm rupture and subsequent vp shunt for correcting the problems of hydrocephalus following the aneurysm rupture/subarachnoid hemorrhage. I feel incredibly thankful for my shunt, otherwise I would probably be in a long term care facility because I was totally incontinent, could not sit or stand on my own, and was a cognitively confused mess. Post shunt all of that was returned to functional! Now, at age 64, working part time, I hear my shunt clicking away periodically throughout the day as cerebral spinal fluid drains. I appreciate the posts on this site… my grown family tells me that I am someone different now, too picky about being tidy or controlling chaos (such as loud music from teenagers). It breaks my heart because I function very well at work, with friends, in volunteer roles. Everything is great except when my grown children, and my teenage grandchildren blatantly tell me I am not the same person as before. Do others experience this kind of attitude from your family members?

    • Skyewaters

      December 20, 2019 at 10:12 pm Reply

      I think we all experience change of some sort with conditions and illnesses like ours. It’s not easy and we tend to do the best we can despite what others perceive.
      I can’t speak for others but personally, I’ve changed too and find that certain things bug me more than others. I’m also different around certain people but I think that probably has a lot to do with how others treat you. Maybe that has something to do with it?
      I love my family yet they are probably too close to see what’s really going on with me or appreciate how it affects my daily life.
      Thank you for sharing 💙

  • Kerry

    December 17, 2019 at 2:20 am Reply

    Hi. Thanks for your post! Sometimes I try to pretend like I’m normal again. I’ve made a lot of improvement post shunt but am still not totally the same so it’s good to remind myself. I was just wondering if you are post shunt or on diamox or were born with hydro. Thanks.

    • Skyewaters

      December 17, 2019 at 2:28 am Reply

      You’re welcome 💙
      Give yourself time and try to take it easy. My shunt was removed 10 years ago and replaced with an ETV. I was diagnosed at age 29 after 2 episodes of viral meningitis, which caused aqueductal stenosis. Also, I’m not on any medication.

  • Anonymous

    December 16, 2019 at 3:14 pm Reply

    Must admit I continue to improve 10 months post op (shunt). In fact, a knitting project I gave up on 10 years ago I have resumed. I wonder how long I’ve been suffering from hydro?

    • Skyewaters

      December 16, 2019 at 10:34 pm Reply

      I’m glad to hear you’re improving, that’s always a bonus. And, projects are good to keep the mind busy so, we’ll done on picking it up again💙

      As for your question, were you diagnosis as an infant or later?

  • Ron Patrick Kelleher

    December 16, 2019 at 2:47 pm Reply

    I can relate to this which made me laugh. I will post things on Facebook & the next day when I see them again Well I think you have the idea. I have sometimes even go over it several times (with a bad head) & still surprised by my message the following day or when I receive comments about it :P. Ron(Hydropioneer)

    • Skyewaters

      December 16, 2019 at 10:31 pm Reply

      Hopefully you don’t say anything you’re not supposed to in your posts!
      But, I get what you mean. Thanks for commenting Ron💙

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