Hydrocephalus: Do you ever wish you could just go back to before you knew you had Hydro?

Hydrocephalus: Do you ever wish you could just go back to before you knew you had Hydro?

I know that there are many people who are born with Hydrocephalus so, this question doesn’t really apply in that instance. 

It’s more posed at people like me, diagnosed at age 29.  I had learnt all the basic skills I needed by then, had no difficulties of note and went about my day and life with a certain amount of freedom and care.  In hindsight, whatever stressors I had back then, they’re diminished in comparison to what I have today.  I know that’s just life and it’s probably the same for anyone really.  Similarly, what causes me stress today will fail in comparison to another 10 years’ time (Assuming I’m still around).  I know that… 

But, the kind of freedom I’m talking about, is a life where I was “free” from constant worry about my treatment option failing.  No matter how far back I push this in my mind, it has a knack of forcing its head to the surface.  It was certainly a time where ill-health didn’t take center stage and dominate most of my thoughts, like it does now.  As an example, I had freedom to drink as much alcohol as I wanted, especially when life threw a whole truck load of lemons my way.  Just a welcome escape to take the edge off without worrying about how it would affect me the next day. Not a hard-out party girl but one who certainly enjoyed a party and was known to stay on the dance floor till closing time.  Hangovers just make my Hydro headache 1000 times worse and, after one too many nasties, I decided to give it a rest and put a cork in it.  (Lord knows there are still days where I wish I could just let my hair down and not worry about the pain effect). 

Being social just puts me off now because making plans aren’t always easy.  Going from feeling in the mood to being rugby tackled by a killer headache, in no time at all, is my new norm.  At times, it doesn’t even have to be a headache, just a general ill-feeling of my body protesting and pouting like a stubborn 2-year old!

Over the last couple of weeks, I’ve been popping painkillers to help get rid of an incessant headache, a headache which used to be more of an annoyance and not something which had me fearing the worst. 

Before diagnosis, I remember a time when work deadlines were more important than looming doctors’ visits.  A time when I wasn’t so fully aware of how much I need to be like a duck on a constantdailybasis.  Where I didn’t struggle to articulate what I wanted to say (don’t let this blog fool you).  It’s as if there’s a bridge between my brain and the words leaving my mouth.  A bridge filled with so many gaps you need to watch your step, in fear of falling through, and down a never-ending gorge. 

Now, my life is filled with so many differences.  Nothing like being diagnosed with an incurable condition to put things into perspective.   

Truth.  Fact

Most days, I’m left wondering whether or not the headache which kept me up most of the night, hasn’t eased up all day and greeted me with a kiss on the forehead as I lay back down to sleep, is something I need to be taking more notice of.  Or, not really knowing how to feel about the vision disturbances of late…

What to do? 

Being annoyed by the 2am to 4am wake up sessions and feeling like the dogs breakfast the next day.  Or, becoming more and more annoyed, frustrated and sick to death of listening to the witty “jokes” my kids make about my memory issues.  (Amongst other things).  I used to laugh with them, my sense of humour rises to the occasion from time to time but, I struggle some days.  There’s a degree of pain and a tugging of the emotions when their sheer disregard for the seriousness of this condition wanes.  When they look at me with obvious skepticism while I try to explain the reason for some of my actions, as if I’m using it as an excuse…

I’m growing more aware of the way in which my responses to them have morphed from “Oh my darling…” to more of a “IDGAF!” line, with profanity a pirate would be proud of.  Just how much I’m damaging them and our relationship in the process is easy enough to gauge.   

Am I proud of it? NO! 

I’ve definitely become more anxious and, quick-tempered… 

Do I like this person who lacks self-control, is prone to depression slumps on the roller coaster of my life and, constantly feeling like I’m running on the hamster wheel, trying to keep up?   

Honestly, NO! I don’t, not one bit. 

I can’t for one minute say that I’d much rather go back and continue life without knowing because, I know realistically what that would mean.  My life expectancy would probably have been substantially diminished had it not been for that damned VP shunt I had placed initially.  And now, even though my ETV may be heading down the same path, I’m as thankful for my treatment option as I can possibly be.  Hydrocephalus treatment options CAN and DO fail…But, they certainly aren’t the only problem.  This condition is.  It’s a forced love hate relationship and one you can’t just let go of or wish away…divorce from a narcissist, would probably be easier. 

So, if only for a moment, I do sincerely wish I could just go back.  Not knowing and living my life like I used to.  Free from all this Hydro drama…a girl can still dream. 

The fork in the road… 

I have met some awesome people along the way and continue to do so.  And, I’ve been humbled by the experiences of others battling to keep their head above water (pun intended).  Our struggles are real, the effects of this condition are real.  Not everyone has an easy time living with Hydrocephalus and some are a true inspiration to me on my Hydro journey.  I guess without Hydrocephalus, I literally wouldn’t be where or who I am today. 

Herein lies my conundrum… 

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

  • Pippa

    August 6, 2019 at 5:09 pm Reply

    I was diagnosed when I was 10. Had 4 shunt revisions and a brain biopsy since then. Fortunately my last operation was in ‘05, but hydro still has an significant impact. It’s affected my education, I’m not able to work currently, it’s affected relationships and I’ve had to give up the idea of having a family- and not being heard by doctors when I ask for help, is a nightmare. Just feel as though I’m waiting for the next coma and hoping someone is there and can get me the help I need

    • Skyewaters

      August 6, 2019 at 10:52 pm Reply

      I can relate to you and know exactly what you mean in so many ways. The obstacles are real for most of us, something most don’t understand.
      Thank you for sharing💙

      • Pippa

        August 11, 2019 at 6:25 pm Reply

        Thank you for your blog! I honestly find it so helpful to know that there are others who understand how I feel- I wish we could all be well and not even know what life is like with this condition. Saying that, the people I’ve met (online, or IRL) have really helped on those darker days 🙂💜

        • Skyewaters

          August 12, 2019 at 9:51 am Reply

          I’m glad you find it helpful.
          I agree, the people I’ve met through this condition have certainly been more of a rock to me than most.
          Thanks for your comment Pippa.

  • Stephanie Jones

    August 4, 2019 at 3:09 pm Reply

    1 brain surgery turned into 3 and a 30 day hospital stay. At the age of 36 i am now doible shunted (VP and spinal). Hydro was caused by my 1st surgery. This new life I life is far less than what I ever wanted my life to be. The inabilities.. the aches and pains that create phobias of what could be going wrong. I am 4 weeks post op from these 4 surgeries that took away my independenc . Left me a hemiplegic(feeling on left side of body.. not movement)… and have created a new life I never chose. Daily headaches.. dont move too fast or pass out.. dont vomit. Just SO much.. and the only people who understand is us hydros as I call us. Thank God im alive but im learning everyday….

    • Skyewaters

      August 5, 2019 at 6:03 am Reply

      Thank you for sharing Stephanie!
      I empathise with you in every possible way…
      The challenges are certainly not easy and learning is a thing, I’ve found, we do on a constant basis with this condition.
      I wish you well with your recovery and always know, you are not alone. So, feel free to contact me, anytime💙

  • Anonymous

    August 3, 2019 at 4:18 pm Reply

    i was dignosed at 28 i also lived a normal life before it was turned upsode down ive had 7 brain surgerys dince and am now double shunted

    • Skyewaters

      August 3, 2019 at 10:56 pm Reply

      I hear you…
      Thanks for sharing💙

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