Hydrocephalus: When your family relies on you for…(just about) everything

Hydrocephalus: When your family relies on you for…(just about) everything

I have no doubt there are many of us, who are relied upon by our families, to be the one who holds it all together.  I especially know this is highly likely if you weren’t born with Hydrocephalus (though not limited to) but, diagnosed later in life, like me.  In my own family unit (myself, my husband and kids), we all have a different view of the person I am now vs pre-diagnosis and brain surgery.  Aside from me, none of them are fully aware of the differences.  The challenges I face with processing information, retaining it or just how badly I want to not have to do all that I do.  Truth be told, it causes me unnecessary anxiety and makes me yearn for a break!

Some days it gets so bad, I literally want to run away.

Or, when I feel myself pushing too hard, I literally wait to physically fall down from exhaustion and, not get up.

But…I’m still standing.

I’ve always been a strong and independent person, something which hasn’t changed despite some other “obvious” (to me) changes.  I find it very hard to rely on anyone other than myself…for anything.  Something, which I don’t see changing any time soon.

The problem with it all is, without them realising (I assume), I feel an incredible burden to always be as high functioning as I’ve always been.  I’m not…I’ve just learnt how to cope

As an example, I need to be the main breadwinner right now, the one who has it all together, knows what’s happening all the time with every little detail of each member of our family and finances.  Keeping track of the new life we’re building with regards to new accounts, usernames, passwords, new schools and all the logistics that goes with starting over.  And, not to mention being their go-to person for…just about everything (as mothers do).

All while trying to find my feet, having started a new job!

Where’s the exit please?  Keep the refund…

It’s not that they are as much to blame as I am for allowing it in the first place.  I could argue that discussing it with them should help but I know it won’t, simply because, I’ve tried.  However, I’m not playing the blame game because that never gets anyone anywhere.  It just causes unwanted arguments and more frustration than anything else…I just don’t have enough energy for that!

Just so I’m clear, I do get help from my husband and kids but, there are things I’ve always done and am better at, than they are.  Unfortunately this is where being diagnosed later in life, once you’ve established yourself, brings a whole other challenge.  I have all the info locked up in this head of mine for what it’s worth, believe it or not, it still works!  If it’s not in there, I have it stashed away safely where only I can find it…Lord help them the day I can’t.

It’s stressful to say the least.  I feel like I keep hitting my head against a brick wall and just can’t seem to move forward, no matter how much water I tread.

I don’t like playing the Hydro card because somehow, it goes against who I am.  However, the fact remains, I have this condition, which does bring with it some very real challenges (some which I can’t simply wish away or get past).  It’s natural for others to advise “just don’t do it anymore” but, that’s easier said than done.

Hydrocephalus is an invisible illness that just keeps on giving, regardless of whether you’re in physical pain or not.  The effects of this condition, goes much deeper than just that.  Sometimes I do think it would have been easier if I had a physical view of the havoc thrust my way.  A limp, a crutch…anything as an outward sign of my inner challenges, just so that those around me can get it.

If I don’t get to say it anywhere else, I’d like to be able to say it here:

I don’t want to do it anymore…I need a permanent break!  Change in “job” description would be nice please…

Life handed me some lemons along the way, which I accept as part of it because, life itself isn’t easy for any of us.  But, it added some grapefruit too, the day it added the word Hydrocephalus to my vocabulary.  Sometimes I just wish there was enough sugar to sprinkle on, to disguise the taste to a bearable point…

Ever feel this way?


  • Skyewaters

    August 10, 2019 at 5:12 am Reply

    I’m sorry things have ended up like that for you all Patricia. Hopefully Philip will give you the answers you need, some day.
    God bless you too…

  • Anonymous

    March 7, 2019 at 10:31 pm Reply

    You sound just like my daughter. Please take my experiences with her and learn to share your struggles with your family. My daughter is a beautiful person. So very giving and strong and when she has extra pressure like having a new baby or what ever she is going through at the moment she pushes me away. Where I could help if she only shared her problem. I understand all of her strength is being used to function and keep her family together and safe. I wish she would learn that using that little bit of energy to ask for help rather than getting exhausted by trying to keep everyone else on track she may find it easier. But she is made to be a very strong woman and portrays someone in control. I do see the exhaustion she has internally and often aggression and intolerant that comes out on these occasions. I can’t help I know and trying to help only adds more stress for her. Your family knows but may be like me and don’t know what to do to help???

  • Anna

    January 27, 2019 at 3:39 am Reply

    As a main branch of my hydo-warrior’s support system, I can relate to a lot of what you’ve said here. I feel like there is a heavy weight of burden to continue being the same person he always was; strong physically and mentally, fiercely independent, an information seeking problem solving manly man! And he’s still all of those things, but the hydro symptoms and stress of those unpredictably predictable symptoms are like a veil between who he eas, and who he is, who he can be for us, the friends and family who love him dearly.
    I wish responsibility was a more tangible load to ask for assistance with, I’d certainly appreciate being asked to help – or being allowed to help with an understanding of gratitude being stronger than the dismay of not being able to do it all himself.
    Stay strong, Skye, but remember, God didn’t create us to walk alone. Not only is He within us, but He has placed assistance strategically for us to use as needed. Reach out, and then rest, that way youll be recharged for when you’re up to the task(s) again!

    • Skyewaters

      January 27, 2019 at 9:51 pm Reply

      Thank you Anna. Not everyone understands…you sound like you do. He is fortunate to have you with that understanding. ?

  • Philip Mastromonico

    January 27, 2019 at 3:26 am Reply

    Skye, you’ve written volumes. No doubt I’m quite a bit older at 58 but I had many of the same concerns which my parents ameliorated with the birth of my healthy and very resourceful sister. I had a spate of 9 shunt surgeries from September to January, 2 years ago which removed me from the workforce. My sister is my lifeline now!

    • Skyewaters

      January 27, 2019 at 9:47 pm Reply

      The effects of brain surgery and Hydrocephalus go so much further, doesn’t it? The concerns are always in the back of my mind…
      Thank you for sharing Philip?

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