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...
Hydrocephalus
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,...
Hydrocephalus: Nothing about this condition is easy…
Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain. After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My...
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: Isn’t it ironic?
My husband fears me having more brain surgery and would rather pretend all is well with me. When it comes to Hydrocephalus, I fear so many things too, including sharing his fears. I understand what drives it. However, I don’t have the luxury of pretending all is well, especially...
Hydrocephalus: Life interrupted…
Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant… Day 1 – VP shunt revision of a Medtronic Programmable Day 2 – VP shunt replacement...
Hydrocephalus: The heavy burden of being the main breadwinner despite living with an incurable condition…
A condition like Hydrocephalus casts some of its own burdensome moments on the person diagnosed with it, amongst other things. It’s unpredictable nature, leaves nothing to be desired. The burden wears heavy and so too does the responsibility of it all, like: Having to support your entire family –...