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...
Articles with the Tag Incurable condition
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...
Celebrate the milestones, it’ll help you face the next one!
A year ago today, I had a VP shunt placed. That was just less than a year after my repeat ETV (Endoscopic Third Ventriculostomy). A surgery which sealed my fate with a brain bleed (A post for another day). Statistically, shunts fail within the first year of placement. That...
Ever feel like you’re losing your mind..?
Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those...
Don’t go out without a fight..!
Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need...
You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.
I wrote this a few weeks ago, it was meant to be my way of motivating anyone who needed it. But, I never actually got around to finishing it. Now, lying in a hospital bed (yet again), I find it more suited to my own situation. Current state: I...
Do you ever just feel like a waste of space?
In one of my previous posts: “How I cope is much the same as being like a duck”, I talk about the best advice I was given by my ex-manager Ian, after my diagnosis and first brain surgery. I struggled at work, to get back to a version of...
Hydrocephalus and the art of war…
She stood her ground and so did he. They are warriors of a different kind. In the days of war (I can only imagine), facing an unknown opponent, you have no idea what their strengths or weaknesses are. Nor, do you know, what tactical moves they will use to...
Does the world turn its back on you, once you’re diagnosed with an incurable condition..?
I know not everyone will agree with this post, and I’m OK with that. But, I’d like to believe that some of what I have to say, will resonate with people who have actually experienced it. For those who have, I hope this gives you a voice… My humble...