If life has taught me anything, and more specifically Hydrocephalus, it’s that you simply cannot give up. You can get tired of the fight, yes (repeatedly!). You can take a break, for however long you choose. Ok, realistically…for as long as Hydrocephalus gives you a pass…but I think you...
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!
Life without Hydrocephalus
Many of us who have this condition have been born with it and therefore don’t have any idea what it’s like to live without it. Also, you can’t miss something you never knew. I posted this on Valentine’s Day and have had a few people ask: “What’s it like...
What would you do?
O for “Oh no!”, “Onward and upward”, “Over it!”? Whatever it is, that’s where I’m at. Moving on should get easier, especially after consulting with so many specialists but… It’s as trying now as it was when I first started out! 3 countries later and I appear to either...
Human pincushion
I hate needles just as much as the next person. Always have, always will. A few nights ago I had an abdominal MRI to figure out what’s causing the pain I’ve been having for the past couple of years. For now, we suspect either scar tissue from my VP...
Forget you have it…
Realistically, on a scale of 1 to 10, how easy would it be to forget you have an incurable condition? More specifically, Hydrocephalus. I’ll admit, there are days where my memory issues come in handy in this regard. To carry on with life, as if nothing is wrong, is...
There’s bound to be casualties…
A diagnosis of an incurable condition will undoubtedly leave some casualties along the way. In this instance, I don’t mean anyone dying but rather loss of relationships. Some of us are born with Hydrocephalus, some of us are diagnosed somewhere in-between and others, towards our last stretch of the...
The bittersweet journey continues…
For once, I have good news to share! Since my last past on losing my vision, my Neuro Ophthalmologist appointment was fast-tracked from 1 June to yesterday. Long story short, there are NO concerns about my vision! Thank God for small mercies…(Though losing your eyesight would definitely not be...
The devil is in the detail
Have you ever had a consult with a specialist for Hydrocephalus and walked away feeling like they simply didn’t listen? Or, maybe you read their report after your consult, and think: “Thats not what I said!”, feeling deflated by the same token. If you have, you are not alone!...
What would you tell your younger self?
We all walk a different path despite being diagnosed with the same condition. Some, or all of these emotions, may play a part in your story (in no particular order and, sometimes, it may even be a case of repeating itself). Looking back at my own life with Hydrocephalus,...
Looking after your mental health
Mental health challenges, are nothing to scoff at. I do believe that most people experience something (or even a few) that adversely them, at one point or another. I’m not ashamed to say I have my fair share of ups and downs. It’s never easy to deal with and,...