What do you do when you HAVE to be the strong one despite having Hydrocephalus?

What do you do when you HAVE to be the strong one despite having Hydrocephalus?

Diagnosed at age 29, in full-time employment and a mother of 2 (now 3), I had no other choice but to be strong.  The thing about being diagnosed with an invisible illness and going through 4 brain surgeries is that not even your own family gets it.  They look at you through the same eyes they always have, pre-diagnosis and pre-surgery.  Despite that time being probably one of the most trying times for them, they seem to forget and expect you to function as you did before it all began.  At least, this is the case in my family.  Sure, they know all that I’ve been through and they hear my rants and complaints when I’m unwell.  Yet, the minute I “look fine” to them, it all becomes a distant memory.

I’ve always been a very independent person and don’t believe in asking for help or relying on others for much.  This was heightened when I realised I had some challenges that came along with my Hydrocephalus diagnosis and subsequent brain operations.  It’s almost at a point where I feel like I need to prove myself to those around me.  There’s a fair amount of weight that I’ve added on personally as well as by those around me, which makes the burden heavier than it should be.  I have days where I just feel like screaming because I don’t want to do it anymore.  I don’t want to be the go-to person, the Mum who has all the answers, the adult in the relationship, the strong, responsible one, the one in charge of the finances, the one who makes sure the kids school notices are attended to and actioned regardless of my memory issues (not to mention having to keep track of 3!) or even muster up physical energy to do chores around the house despite feeling sick…the list is endless.

One of the hardest things I have to do is making sure my job stays protected, meaning I put all in.  I know that for my family to survive financially, I need to cling to it for dear life.  There’s no out for me on this one, I simply have to do it for as long as my body will physically allow me – hopefully, that’ll be at retirement age or death (whichever happens first).  At this point in time, I’m learning about IT Security, something which I could almost say I’m doomed to fail at simply because I know it takes me longer to commit things to memory and it’s unknown territory but, I’m giving it a try to place myself in a better financial position.  (Whether I’ll succeed, remains to be seen – I’m still at it 2 months later).  This is why I’m so hard on myself and make sure I do all that I can to keep my brain active, paddle like a duck and try not to get drowned by the whirlpool of my cognitive challenges.  It’s hard… and extremely tiring.

It’s not hard for me to imagine why I’m stressed out most days or why I feel like I’m running out of steam.  Thankfully (if I have to find the silver lining), being diagnosed with Hyperthyroidism (overactive Thyroid – heaps of physical energy) instead of Hypothyroidism (underactive Thyroid – zero to no physical energy) which is the opposite, is almost a blessing in disguise.  (And, as of today Graves Disease).  It’s like I’ve been given the extra push I need without having the physical strength.  It’s still tiring and requires me to rest my body more than my family care to allow me but, that’s their problem to deal with.

I wish I had an outlet if I have to be entirely honest, just a way to release all the pent-up anger, anxiety, depression and hostility.  Often times, I find myself in the shower, having a good cry just to get it out of my system.  (I know I’m not the only one who does this).  Sure, it doesn’t fix the situation but at least I get to do this on my own and be “weak” without anyone else telling me to “be strong and to “just keep on fighting or to live each day fullybullshit.  I get to be me even if it’s just for a few minutes…

There are so many times where I’ve wondered if I’m good enough…to be a mother, wife, daughter, sister or friend.  I feel inadequate and drained because I just don’t want to do it anymore…Most days I just wish I could take a break from everything and everyone.  The problem with this, as I told a close friend a few days ago, I might not want to come back.  I second guess myself on just about everything and having the challenges that come with these conditions, sure doesn’t make it any easier. If anything, it makes it 10 times worse.  I don’t have the answers for myself but I do know that I’m putting one foot in front of the next to get through each day as best I can.  If anyone takes that for granted, well…that’s their loss.

I give myself permission to feel “weak“, to have my moments alone, to sleep and give my body the chance it deserves to recover but most of all…I give myself permission to just breathe.  Life certainly isn’t ideal, sugarcoating it won’t get anyone anywhere either.  I never was one to lie especially not to myself.

So…I’m strong not because YOU want me to be but because I want ME to be.

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!

3 Comments

  • minionmayhem514

    November 22, 2017 at 4:12 pm Reply

    I can relate to the “forgetting” about the hydro. My daughter had another shunt revision several weeks ago and people have asked me how she’s doing. I tell them she’s doing great and they ask if the surgery “fixed” the problem. It’s so hard to not unload on them that it’s not something that can be cured. She looks fine and acts fine…until she’s NOT FINE and then she needs brain surgery. I don’t think people can get it until they’ve been there.

    • Skyewaters

      November 24, 2017 at 9:16 am Reply

      I feel for you as a mother AND knowing what it’s like to have the condition myself. You are right though, people only get it when they go through it themselves. You do, right now, on behalf of your daughter. That’s where the difference comes in for her. You will walk the journey with her until she goes off on her own but, I know that you will always be there for her because of this time…right now – you “get it”.
      I pray her recovery is going smoothly and that she doesn’t need further surgery for a good while. Stay strong and keep in touch if you need to vent {hugs}?

  • Duncan

    November 20, 2017 at 2:30 pm Reply

    Skye you inspire me! Being able to do everything you do. Keep fighting for all of us with Hydrocephalus.
    Thanks again

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