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...
Articles with the Tag Empathy
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,...
Hydrocephalus: Vision loss is scary and Migraines suck!
My central vision blacked out on Christmas Eve, while working, sending me into a bit of a panic. People’s faces were reduced to half an image and text was darn near impossible to read! I smiled at the receptionist on my way out of the office, whilst freaking out...
Hydrocephalus: Do you have a Hydro buddy?
I often think back on what I’ve been through and how far I’ve come since I was first diagnosed a few years ago. What life was like before, escapes me a bit though, simply because there are parts I just don’t remember. I do, however, remember how it felt...
Hydrocephalus: An idea is brewing…
There’s something which tugs my heart strings even more than the fact that so many people with Hydrocephalus endure endless brain surgeries. Children, babies to be more specific, the most vulnerable of all who go through this. As a mother, I’d be lying if I said it doesn’t stir...
Hydrocephalus: Some conversations aren’t worth having…
Is it really worth having a conversation with someone who doesn’t understand what Hydrocephalus is all about? (I’m not talking about Awareness or education because that will always be worth it). Someone who doesn’t get that this is a serious condition, requiring immediate action, in some cases? Someone who...