Hydrocephalus: Help me to help you…

Hydrocephalus: Help me to help you…

This post is for all those living with and, supporting someone, diagnosed with Hydrocephalus.

First off, I would like to acknowledge: The fact that you’re in this alongside your Hydro warrior is admirable.  Not everyone is made to withstand the challenges life throws our way especially an Invisible illness like this.  There are no warning signs, there are no handbooks and most of all, it takes a lot of understanding, patience and empathy.  It’s not an easy road but it is one that many are on, and find themselves feeling a bit helpless.

From my own personal experiences, I can share this much with you in the hope that it will give you a better understanding and maybe even enough conviction to “carry on”.  It’s easy to feel like giving up and walking out is the best possible solution for all but, that’s not always the case.  Sometimes…it just takes a bit of knowledge, understanding and a willingness to try…at the very least.

Something which won’t necessarily be true for others, but is for me personally, are the challenges associated with being diagnosed later in life and dealing with the new me vs the old me – it feels like I’ve lost something.  It’s required me to really dig deep and fight my inner demons while coming to terms with the challenges and changes my life has had to take on.

There’s no easy way to tell when a Hydro-headache will hit.  I normally only realise when it’s unfortunately too late, initially suspecting it to be just a headache or a migraine.  When I’ve started biting off everyone’s heads and literally feel like a monster, I know it’s more than that.  I also know, that I become moody as hell, kind of like when you go through your menstrual cycle (the ladies will understand better), just worse.  I literally don’t want to be around myself but…obviously, that’s not possible.

Noise irritates me and just about everything else around me.  I feel helpless to the pain and what’s going on inside my head and body.  I pray for someone to help make it all go away and feel extremely helpless and vulnerable when that’s not forthcoming.  It’s a scary situation and one I’d much rather not go through at all (but, it’s a wave we have to ride out because there’s no other choice).  For me personally, my husband just holding me feels SO good.  Admittedly, he too is unsure of exactly what to do at the time and generally leaves me in a dark room to fight it out on my own.  (Something which leaves me feeling lonely and abandoned).

I often wonder what he goes through at this point…

I know he can’t do anything for me but I desperately wish he could know the extent of my pain and suffering at the time.  (It’s a no win situation).

Also, it would probably depend on your Hydro warriors personality.  If they don’t like to be “made a fuss of” then don’t.  If they like it then do.  In all honesty, it’s a fine line because it could come across as you not caring…just follow their cue.  (Most of all, remember what they’re going through at that point in time, and how they react/handle it has nothing to do with you personally).

Patronising them and making light of what they’re going through, leaves the risk of them reacting badly – this is obviously normal for anyone going through something bad.

I guess my advice to you would be, just be genuine in your reaction.  For example, if my husband says “I don’t know what to do for you” and he has before (with sincerity), I accepted it.  But, that would require work and understanding from your Hydro warrior, which you can’t control. 

It may be worth having a talk with them on a good day to find out what they think would help, assuming you haven’t already done so.  (They may not necessarily know either but that’s fine because by you asking, you’ve planted the seed in their mind that you care.  And, they may even end up giving it some more thought going forward).

Also, there’s nothing wrong with being positive, though if I had to be honest, my husband does so all the time and, it irritates me (especially) during an “episode”.  I think this is more the case because I know the reality of this condition and how it affects me.  If I had to analyse the reason for my feelings, it would be because I “feel like he minimises the situation and doesn’t quite understand that this is a lifetime condition for which there is no cure”.  This doesn’t necessarily mean that it’s true. 

There is no room for rationale when you’re in the grips of a Hydro episode…just thinking straight is hard work.

However, he surprises me when he confides in friends and family by opening up about how helpless he feels.  Having been told this a few times in the past, it helped me get rid of the idea that “he doesn’t care and I’m in this alone”.   I understand that it’s his personality type and, even though I don’t like it, I accept it.

It would mean more to me if he told me all this himself but maybe it’s a male pride thing, which I get.  All this is just me looking at it from all angles and trying to understand the next persons’ reasons for being the way they are, which I generally do.  Not everyone does this…

I will even go so far as to share with you, on a good day, when I tell my children to be quiet because I need to think, they know exactly what this means.  I’ve explained to them why I need quiet and said it so many times before, that they don’t physically need to understand why they just respect it and do.  Most days though it’s after I’ve started losing my cool and find myself screaming to be heard (I suppose there’s a pitch in my voice which tells them this is different).  Or, if they don’t listen (as children do), I physically remove myself from the room that they’re in – just to get away.

I’ve even gone as far as locking myself in the car when they follow me from room to room and carry on with their bickering (My kids are 17, 14 and 8)

Peace and quiet is something that I find myself needing more than before I was diagnosed.  Noise affects my brain and ultimately dictates my body’s reaction.

We have many challenges, as everyone does, but this condition has not been kind to our brains.  A fact I don’t like but know I cannot change.  I sometimes feel that I have to put in more than the usual persons 100%.  And, I accept it because I know there’s nothing anyone can do about it. 

Every person on earth has their challenges, even the ones who seem like they don’t.

If you’re feeling a bit lost in terms of what to do, I truly empathise with you and pray that your situation will improve.  Don’t give up, just do the best you can.  I hope this helps but feel free to keep in touch, even if it’s just to vent.

 

*Post inspired by Anna, wife of a Hydro brother

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!

8 Comments

  • Jenny Lee Miller

    September 24, 2018 at 2:57 am Reply

    I loved your story. I am the coordinator of The Wyoming Hydrocephalus Support Group in Casper, Wyoming.
    I was diagnosed with hydrocephalus in 2006 with a programmable vp shunt implanted. I have since had 4 revisions on my shunt.
    I just found out I have breast cancer and as soon as I can this taken care of I need to have a new shunt implanted. I have a lot of faith in God and I know this will all be okay. My headaches and migraines also drive me crazy I have been prescribed Migranal spray which gets rid of my headaches in 15 minutes.

    • Skyewaters

      September 24, 2018 at 5:01 am Reply

      Hi Jenny. Thank you for your comment and for sharing that with me. I admire your faith and belief😊
      I pray that God will lay His hands on you and provide the healing you need. Also, praying that the new shunt serves you better than the others. 🙏🏾💙

  • Terri

    September 23, 2018 at 5:14 pm Reply

    Thank you, Skye. I have shared your post with my husband and son, and believe that they understand hydrocephalus a bit more. It helps to know that you’re out here, giving a voice to the issues that we all, as hydro warriors, endure. ❤️

    • Skyewaters

      September 23, 2018 at 9:05 pm Reply

      Thanks for sharing Terri. I’m happy to do this for all of us😊💙

  • grizz1ybearDuncan

    September 23, 2018 at 9:35 am Reply

    Hey Skye;
    Another Great article, I hope it helps at least one person.

    • Anonymous

      September 23, 2018 at 5:12 pm Reply

      Thank you for this article Skye!! 💗🧠💗

      • Skyewaters

        September 23, 2018 at 9:04 pm Reply

        You’re most welcome💙

    • Skyewaters

      September 23, 2018 at 9:04 pm Reply

      Hi there
      Thanks…I hope so too😊💙

Post a Reply to Jenny Lee Miller Cancel Reply

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