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 Empathy
Brain Injury: The invisible disability.
Hydrocephalus and brain injury won’t define my outcome, I reserve that right!
The hard reality of living with a brain injury…
***TRIGGER WARNING: This post touches on suicidal thoughts and death*** When you sustain a brain injury, in the prime of your life, things change in an instant. It hits harder still if you’re a high functioning person, independent and always doing everything for everyone else. Nothing can prepare you...
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...
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...
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...
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...
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...
Hydrocephalus sucks! Validating your feelings.
So often I’ve felt a need just for some understanding when it comes to this condition. I’ve reached a point where I know and commit to memory that this condition is invisible and, as such, others around me will unfortunately treat it the same way. They’re simply oblivious to...
Gert Tollesson, “saved my life and…my sanity!”
Gert Tollesson, aka Dr “O”, is the 15th specialist I’ve consulted with regarding my Hydrocephalus. Most of you, who follow my blog, will know the uphill battle I’ve had to climb to finally get to him! And, thank God I have!!! Words I would use to describe him: Kind,...