That’s it for me. I’ll be closing my social media accounts and blog over the next few weeks. But, before I go, know this: Skyewaters has been a lifeline for me these past few years. Living with an invisible and incurable condition, is a challenge on SO many levels....
Articles with the Tag Invisible illness
Brain injury requires reducing your cognitive load
My brain can literally feel like a hornets nest (most of the time). A muddled space where thoughts, memories and information, go to die (a slow death). One coping strategy, that works (for me), is to reduce my cognitive load. I’ve had to learn a few and continue to...
Losing yourself…
I have been feeling this way, more and more, each day. I have good moments and others less so. It’s a scary situation where you feel like you’re losing yourself. Like you’ve lost control. Helpless to your core and all you want, is out of the jail cell, which...
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...
You can get angry, you can get sad but, no matter the emotion; You HAVE to keep going.
I wrote this a few weeks ago, it was meant to be my way of motivating anyone who needed it. But, I never actually got around to finishing it. Now, lying in a hospital bed (yet again), I find it more suited to my own situation. Current state: I...
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...
Hydrocephalus and the art of war…
She stood her ground and so did he. They are warriors of a different kind. In the days of war (I can only imagine), facing an unknown opponent, you have no idea what their strengths or weaknesses are. Nor, do you know, what tactical moves they will use to...
Let your body be your guide!
This condition has taught me to be, not only resilient, but also resourceful. The things I’ve had to do and endure, over these last few years, cause me to feel both anger and admiration (amongst other things). As a result, it forces you to figure things out for yourself!...
Brain surgery cost is ridiculous. This is why.
This post is more about the total cost involved with care, treatment, surgery and overall recovery. I would go so far as to say; aside from the financial cost, there’s an impact on ones mental, physical and emotional state as well. And, under the right circumstances, can have the...
When there’s a “kink” in the armour….
Shunts, a bone of contention for many people diagnosed with Hydrocephalus. I would almost go so far as to say there’s a divide on the feeling towards this “lifesaving” device. Not everyone feels the love when it comes to them, but we all know that without them, things would...