As someone diagnosed with Hydrocephalus and living with a brain injury, this is a sore point, obviously. People don’t necessarily have to say they don’t believe your symptoms; their actions (or even inaction) speak loudly and clear enough. Seeing beyond an invisible illness or injury, is a difficult one,...
Articles with the Tag Invisible illness
Brain Injury: The invisible disability.
Hydrocephalus and brain injury won’t define my outcome, I reserve that right!
Cognitive impairment is NOT the same as intellectual disability
It seems common for people to (incorrectly) assume that brain injury, causing cognitive impairment, is the same as intellectual disability. The extent of the injury will be dependent on the location of injury. In saying this, I do not presume to speak for the next person with a brain...
Brain injury wreaks havoc on relationships so protect your heart
Finding the balance, living life with hydrocephalus and brain injury, is tricky. Relationships take strain and fall apart. The loss of some relationships has been sad for me. But I’m realizing that this is inevitable unless the required effort is made by all parties. Truthfully, some have been easier...
Hydrocephalus Awareness: What you need to know
What is it? Hydrocephalus is an incurable neurological condition that affects millions of people across the world. It does not discriminate. To date, the only treatment option available requires a person to undergo brain surgery (repeatedly), which is NOT a cure. The treatment options available CAN and DO fail,...
Reclaim your power
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...
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...
Losing yourself…
I have been feeling this way, more and more, each day. I have good moments and others less so. It’s a scary situation where you feel like you’re losing yourself. Like you’ve lost control. Helpless to your core and all you want, is out of the jail cell, which...
Living with a VP Shunt is not new to me but, this time, it’s different.
For a start, I can hear my shunt draining CSF when I change positions or tilt my head a certain way. This is something I did not experience with my Medtronic programmable shunt. There are even times where I can hear the little ball inside the valve, rolling around...