The very word “invisible”, speaks volumes if you care to notice it. To look at a person with Hydrocephalus, you wouldn’t know they had it, unless they’ve told you, or the signs are unavoidably visible. Also, many of us, live our lives feeling very isolated and most of the...
Articles with the Tag Facing the Unknown
Hydrocephalus : Patience while you wait…
It feels like waiting is one of the things you do a lot of with a condition like Hydrocephalus. Being a person with little to zero patience (I do try though), it can become quite “painful” at times. In saying that, the comparison cannot be drawn between just your...
Hydrocephalus: Same shit, different country…
There seems to be a universal law when it comes to the way we are treated as Hydrocephalus patients. (Or, I’m just being overly sensitive – you be the judge of that). I know for a fact that, what I’ve experienced below and so many times before, is not...
Hydrocephalus: Eye trouble and the stress of not knowing…
When you go from care (practically non-existent) to doctors using words like: “You are high risk”, “This is serious”, “This is important to get checked out, sooner rather than later”, it leaves you feeling unsettled. The only way I can think to best describe it is, being abused –...
Hydrocephalus: Some food for thought…
I can be angry that life dealt me the Hydro card. I can curse everything under, around or above the sun…but, it won’t make a difference. 29 years old and living a reasonably sheltered life (as far as this condition goes), that’s the reality I faced before I read...
Hydrocephalus: The noisy upstairs neighbour…
A few years ago, my family and I made the mistake of moving into a two storey house with another family. (I don’t recommend this to anyone unless you have what it takes. It’s the kind of situation that can make enemies out of friends and split families apart...
Hydrocephalus: ICP Monitoring results leave me feeling “conflicted”
I’ve waited more than two weeks to hear about my ICP Monitoring results and eventually assumed that “No news, is good news”. And, as it turns out it is indeed the case. I should be relieved and happy, to say the least. But…I have mixed emotions… I requested a...
Hydrocephalus: When you hear but don’t listen…
2 weeks ago, I had ICP Monitoring done (only my 5th Hydrocephalus-related surgery since being diagnosed just over 11 years ago). There were 2 things of note, amongst others, I took away from that experience: A nurse who looked at me surprisedly when I told her I have Hydrocephalus...
Hydrocephalus: The pressure test
ICP (Intracranial Pressure) Monitoring, something I’ve heard about before, seen other Hydro warriors go through but, hadn’t experienced for myself until last week. I went through the normal motions and feelings before surgery. Knowing that a piece of fibre optic transducer sensor would be going through my brain and...
Hydrocephalus: What is the right frame of mind?
This question pertains just as much to someone who has recently been diagnosed with Hydrocephalus as it does to someone facing brain surgery, which is never easy. For me personally, it doesn’t matter that people say one procedure is “not as bad” as the next, it doesn’t stop me...