It’s easy to feel powerless when you’re diagnosed with an incurable and invisible condition like Hydrocephalus. And, having to learn to navigate life with a brain injury. When life changes within the blink of an eye and your circumstances are unrecognisable. When the person staring back at you in...
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!
Brain injury changes the trajectory of your life…
That’s it for me. I’ll be closing my social media accounts and blog over the next few weeks. But, before I go, know this: Skyewaters has been a lifeline for me these past few years. Living with an invisible and incurable condition, is a challenge on SO many levels....
Brain injury requires reducing your cognitive load
My brain can literally feel like a hornets nest (most of the time). A muddled space where thoughts, memories and information, go to die (a slow death). One coping strategy, that works (for me), is to reduce my cognitive load. I’ve had to learn a few and continue to...
Phoenix rising
It’s been a while since I’ve posted anything on my website. I’ve slowed down to a crawl BUT, as long as I have words left in me, I’ll continue to speak out about the effects of Hydrocephalus and Brain injury. To bring you up to speed in a nutshell;...
Have you found your tribe?
When I was diagnosed with Hydrocephalus, 16 years ago now, I had to find my tribe: People who knew and understood what I was going through, because they shared the same diagnosis. Support groups on Facebook were great but, starting my blog, Skyewaters.com, was a step in the right...
Hydrocephalus: Isn’t it ironic?
My husband fears me having more brain surgery and would rather pretend all is well with me. When it comes to Hydrocephalus, I fear so many things too, including sharing his fears. I understand what drives it. However, I don’t have the luxury of pretending all is well, especially...
Hydrocephalus: A hard way to learn what drugs to avoid!
Disclaimer: I’m writing this post in hindsight, which is a wonderful gift and at the tail end of practically poisoning myself, unknowingly. So, apologies in advance where needed…(Also, it’s not so much Hydro-related but no doubt a piece of my Hydro puzzle). NB. This drug might work for some...
Hydrocephalus: The effect of loss…
This week has been an extremely poignant one in terms of loss for me. Isn’t it funny how one thing can have a ripple, snowball or even domino effect, sending everything cascading down? So many factors hitting home overall, life dealing cards that just seem so unfair, making me...
Hydrocephalus: Saying “I’m fine…”
When someone asks me how I am in general, but especially, after a Hydro “episode”, I often respond with these 2 little words. It’s instinctive. The truth of the matter is, I don’t know that for sure. How do I truly know that I am fine..!? Fact is, I...
Hydrocephalus: This is NO way to live…
I’ve had a few people say this to me. People at the end of their rope, dealing with pain and discomfort from living with Hydrocephalus, and some, living with more conditions/diseases on top of it all. I fully empathise and, in most cases, share their sentiment. More especially, today...