Do the people in your life, those closest to you, know what to do if you need help? How knowledgeable are they when it comes to Hydrocephalus and you? Honestly, I have the utmost respect for parents who fight fiercely for their children with Hydrocephalus and are so in...
Articles with the Tag Invisible illness
Hydrocephalus: Shame on you…
When I wrote We are not faking, I meant what I said. What I didn’t know at the time was how much of a lifeline these words would become. A lifeline not that someone else throws your way but one that you need to remind yourself of, more than...
Complex, complicated and sitting on the fence
Complex and complicated, two words that have been used, my entire life it seems, to describe any medical condition I’ve had over the years. My parents have told me that the reason for sending me to live with my grandparents at a very young age was because I was...
Hydrocephalus: The validation effect…
After my last post, I withdrew from the world for a while. My way of coping I guess. In fact, I wasn’t too sure what my next post, if any at all, would be. I truly felt like the wind had been taken out of my sails and I...
Hydrocephalus: Loneliness, a feeling which consumes you when you have an invisible condition. But, have a look at this!
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...
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: What does an angry brain look like..?
Being bounced around the system, regardless of where in the world it is, is no fun at all. I sometimes think that people assume if you look fine, you must be fine. Having Hydrocephalus has certainly made me feel this way, on one too many occasions, regardless of who the other...
Hydrocephalus : Do you limit yourself when it comes to learning?
Fear…a driver for most (negative) things in life. It’s certainly blocked me from doing a few things. In fact, had it not been for fear, I now know that nothing (physically) would have happened to me. But, I stopped myself before I could reach that point. When I started...
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: 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...