Hydrocephalus: Figuring out the next move…

Hydrocephalus: Figuring out the next move…

In my last post, I mentioned that I had something to be grateful for and realised since then, there’s actually quite a few things, given my current situation. Firstly, I’m still breathing. That in itself is reason enough to be grateful. My job has kept my mind occupied and is a welcome distraction from all this Hydro drama. Then, the one thing I probably took away from that waste of time trip to the Emergency Department – I have medical insurance.

After what happened, I slipped into a deep depressive state. I honestly thought there was no coming out of it.  This time was really bad, unlike all the other times before…

Brain injury is not an easy thing to deal with and, depression is part of the slippery slope we fall prone to.  This state of mind is nothing new for people living with Hydrocephalus. If you don’t experience it, be extremely thankful.  For those of us who do, I feel your pain and understand fully your struggle.  I think this is probably one of the biggest reasons why I refuse to take antidepressants.  They have the opposite effect on me plus, I really don’t need the extra psychological persuasion.  It works for some but for me personally, it’s a hard NO!

Clearly, I do not wish to harm myself but in those moments, it’s extremely hard to resist.  Convincing yourself that all of this (whatever you’re going through), is just not worth it. That this world would be a better place without you or that you would be better off without this world, is the easiest, quickest and most difficult conclusion you’ll ever reach. It’s an inward struggle, numbing every part of your body physically, mentally and emotionally, something over which you feel – you have no control…

Every little piece of darkness, which has ever touched my life, seemed to attach itself to the coattails of the cloak that enfolded me.  It grew in size and I felt very strongly that I would lose this battle.  But, here I am, fighting to find my way back! I’m taking it day-by-day because that’s all I literally can do.

Like some things in life drive some people to drink, there are things in my life which drive me into a depressive state.  I’m not ashamed to say it nor do I think it makes me weak.  I’m not proud of it either but I know there’s not much else I can do to change it.  (Believe me, I’ve tried – therapy, prayer, anger, humbling myself even antidepressants – yet, I’m still haunted by it all).  Sure, it’s not nice to admit nor is it pleasant to talk about but, I believe in being my true self.  I try to make peace with it as best I can and treat each downward spiral like a crashing wave, to be endured, until the tide subsides. Accept it or not, it’s your choice…

As a society, I believe we need to acknowledge the seriousness of depression – too many people are hurting AND their pain is real.  Just because you’ve never experienced it, doesn’t mean you should think less of the person who endures it.  Depression is more common than you know but seeing beyond the smiling facade of someone going through this hell, is a trick not known by many. 

It got me thinking though.  Not many are fortunate enough to have private medical cover to fall back on.  Too many are left at the mercy of the public system and endure exactly the same as I keep writing about.  How many of those people have given up the fight and suffered the consequences of these events?

I count myself fortunate to be in a position to have taken a step back, long enough, to view this as a glimmer of hope.  The avalanche of thoughts consuming my brain, scurrying around, desperate for a way out is just plain overwhelming.  At the very least, it’s an option worth exploring (regardless of having been here too before).

I went back to my GP to do some blood tests just in case it’s something else causing the dizziness and nausea.  I left his room saying, “If Dr xxx doesn’t take these symptoms seriously and nothing comes of it, I honestly don’t know what I’ll do”.

Despite being in a very dark and negative space since that Friday, I’m clinging to the hope of her very apparent, “Outside the box” thinking.  Her saying to me that, “an ETV can appear to be wide open but there may be a degree of closure or a web-like obstruction unseen on any MRI or the ETV may not be enough to cope with the amount of CSF my body produces – leaves me wondering.

So this, combined with knowing I have medical insurance to cover my needs, leaves me seeing a bit of light at the top of the spiral staircase.  At the very least, it gives me a lifeline to some form of sanity. A state of mind I desperately need and one I most certainly grant unto myself!

All I need to do now is, decide what my next move will be and how I move forward.

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!

6 Comments

  • Don Clough

    September 6, 2019 at 11:19 am Reply

    Hi. Thanks for your article. Everything that you write on hydrocephalus seems to help me out exactly when I need to see it. Since late June, I’ve also been dealing with Cholesteatoma, a non cancerous tumor that can destroy your hearing. Unlike hydrocephalus, it can spread to other parts of the body. Like hydrocephalus, it can only be treated, not cured, through surgery. And, it can come back. That surgery was on the same side as my shunt. So now, when the right side of my head hurts, I don’t know if the pain is from hydrocephalus, or Cholesteatoma.

    • Skyewaters

      September 7, 2019 at 9:55 am Reply

      I’m sorry to hear that Don. I can’t imagine that it’s easy for you to deal with that on top of having Hydro.
      You are in my thoughts and prayers. I’m glad you found this post helpful. All the best to you💙

  • Bethany Bacon

    September 4, 2019 at 3:00 pm Reply

    Thank you once again for sharing from your heart! I completely understand what you said in this post. I, too, struggle with depression from my situation with Hydrocephalus. You are NOT alone! I am grateful to have a good support group of friends and family, but they don’t understand since they don’t have Hydrocephalus. Please, keep posting! I am encouraged by your posts; knowing that I’m not alone in my own frustrations. Thank you!! Appreciate your posts!!!

    • Skyewaters

      September 5, 2019 at 2:48 am Reply

      When I have my down days, I question what I’m doing with this site. I’ve come close to shutting it down because of negative self-talk.
      So, Thank you Bethany, that’s encouraging to hear! 💙

  • Fire Captain Little

    September 4, 2019 at 2:25 pm Reply

    Bravo Sky! Like you, I deal with depression on a daily basis and, just recently, have been diagnosed with PTSD as a result of not one, but several traumatic experiences that have occurred over the past 55 years. Just remember, I am here if you ever want / need to talk. 🙂

    • Skyewaters

      September 5, 2019 at 2:45 am Reply

      Thank you for sharing and for your offer, appreciate it💙

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