Hydrocephalus: When you realise you simply can’t “fix” it!

Hydrocephalus: When you realise you simply can’t “fix” it!

Disclaimer: This is not a post to influence anyone else, nor should it be used as medical advice or guidance.

I have an inherent nature to try and fix things. It doesn’t matter what it is; my situation, someone else’s problems or just the world in general (I know, overly ambitious!). I’ve had a while to try and figure things out for myself, advocating about Hydrocephalus and the role it plays in my life, as well as so many others I have met because of it. After my last post, I took some time to think about and consider the “why”.

It gets to you eventually… 

I looked back at my journey thus far since my diagnosis (14 years), and one question kept nagging at me; “Why do I keep going back to these doctors?” i.e. “What am I looking for?”. It dawned on me, neither these doctors nor I, can “fix” this condition. They can perform repeat surgeries to implant a different type of shunt or lead it into a different body part to drain the CSF (Cerebrospinal Fluid) or redo my ETV (Endoscopic Third Ventriculostomy), if need be. Inevitably, these surgeries prolong your life (to a degree) and for some, this is good enough. However, none of these surgeries will “fix” anything. I think for the longest time, I viewed my condition as something that can be fixed and, somehow, it just never truly clicked for me, until recently. I think my visit to a Thyroid surgeon a few weeks back was just the cherry on the cake and the tipping point I needed, to change my view and perspective. It was the culmination of my health issues but, especially, when she said; “It’s not an exact science…sometimes, we get it wrong…” that rang true for me and changed the direction of the course I’m on.

Like finally seeing something, for the first time, which has been in front of you all the time! 

I’ve fought against medical professionals and the systems which govern their actions for so long, and even traveled between 3 different countries in the hope of finding “better” care… 

When it comes to Hydrocephalus, I know it’s an incurable condition. This does not escape me in all of its entirety. 

I’m not a morbid person, though I can see why some might think that. Meh! If anything, I consider myself a realist who admittedly overthinks and empathises with everything and everyone around her. I was raised to not fear death.  In fact, the thought of it brings me peace and calm. And, for as long as I can remember, nothing made more sense to me, as I longed to one day return “home”. Despite feeling many times like this (earth), is not where I’m meant to be, I would never truly go through with it to end my own life.

I have a good level of faith (not by anyone else’s standards but my own), even this has been tested beyond recognition. Not comparing myself to anyone else, and careful not to diminish my life experiences, I have certainly been through enough to drag me down to the depths of depression tenfold. But…I’d like to think that I still have enough of it in me, to get through. The thing about faith is, it never really leaves you, despite the worldly attempts to taint any sign of it. I also know that not everyone has the same level of faith, or much less, any at all – That’s your choice…no judgement here.

As of a few weeks ago, I’ve accepted the fact that I cannot “fix” the incurable condition I have, nor the effects it has on my body, physically. I’m done trialing medication, done seeking help and done feeling the overwhelming need to make it all better! The best part of it all for me, since reaching this point, I feel so much peace and almost a sense of being set free. I know some might say it’s stupid or reckless and question what I would do in the moments where I do become symptomatic. I guess my response would be; “I’ll cross that bridge when I get there!”. 

I understand fully the extent of the pain and agony it causes…

While doing my awareness posts in September, this made me sit up and take note; “It’s important to be aware that medication with a side effect of drowsiness can mimic or mask signs of shunt malfunction or ETV closure and should be used with caution in those with Hydrocephalus”. What if the array of medication I’ve been prescribed on a “trial” basis over the years, somehow affected me to the point where I believed I was symptomatic? Some of those times, very well may have been actual episodes but I guess I’ll never know. A few months ago, I discovered I’m allergic to Codeine and Morphine (The number one drug given to me at the Emergency room when I lived in New Zealand). Even after (What I now know to have been) an allergic reaction at one point, I kept being given this drug for pain relief. It’s no-one’s fault…just unfortunately an unknown, overlooked one too many times and a missed opportunity of connecting all the dots. 

No one ever took the time to explain any of this to me and I was none the wiser. When you don’t know, you just don’t know to ask…Hindsight, it’s a wonderful thing! And, sometimes you have to experience something yourself, before you can fully understand… 

Coincidentally, I received an appointment letter a few days ago, for a follow-up MRI with CSF Flow study in 2 weeks’ time. I mulled over whether or not I should even bother, as I know it won’t show anything significant.

I guess that’s the difference for me right now, between actively trying to “fix” this, and finally accepting that I can’t. 

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!

2 Comments

  • grizz1ybear

    October 18, 2020 at 11:00 am Reply

    Oh Skye, before I read this at 4:30am I was googling what to do when the pain becomes to much? Everyday I wake up in pain from my Hydrocephalus, I know I’m not alone , yet at this time of day I definitely am. I throw back a few Tylenol pour myself some coffee and try to get past the pain. After about an hour I can crawl back to bed again for maybe another hour? I’m 61 diagnosed at 47 so no I have not had to endure this pain all my life but it controls who I have become. Yes I have a great family wife children and grandchildren. Along with my two dogs which are my lifeline. Without my pups I’m not sure I would be here, they tend to know when I’m really bad, one is on my lap as I try to type this. No there is no cure, there is no safe pain medication for us either everytime we are put on a new drug the side effects are worse. I don’t have a answer, only more questions like you?

    Stay Strong Hydro Warrior please Stay Strong

    Duncan

    • Skyewaters

      October 19, 2020 at 2:09 am Reply

      I appreciate you sharing Duncan. Onwards and upwards as they say. Stay strong and I hope the pain eases up 💙

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