This week is National Epilepsy Awareness Week. I was hoping to take advantage of this and post quite a lot, however, as Sod's Law of course dictates, I instead spent the first half of this week recovering from a nasty cluster of seizures!
At 9.50AM on Tuesday I finally had my appointment with a neurosurgeon to discuss the possibility of Vagnus Nerve Stimulation (VNS). Although hospital appointments are probably one my most familiar situations, in which I normally feel worryingly comfortable, for the past week or so this specific meeting has been making me excessively anxious. One thing … Continue reading VNS Update!
My life is definitely moving forward but at an embarrassingly slow pace. It's a bit like when you stand still on a travelator, only I just don't have the motivation to start walking and consequently speed things up. I know roughly where I want to go but it seems I don't want to get there. … Continue reading Morbid Metaphors
The past few months have been excessively tough. I've held back from writing because part of me still doesn't want to admit just how bad things have got. Over the 17th and 18th of February I had 30 seizures in just as many hours. It hit me hard (as you'd imagine) both physically and mentally. … Continue reading Things have to get worse before they get better
The world is caving in on me Enclosing like the shell of an inedible oyster. Each sound and movement makes the tunnel tighter, The spark of light thinner And the air harder to breath. I envy those who move freely, Part of the hustle and bustle not even stopping to think. It is suggested that … Continue reading 10,000 Steps
No matter how many personal demons I've beaten this year there's one monster I simply cannot slay! That monster is called PIP. This isn't a case of mind over matter. I've literally not been given the opportunity to start my fight. Or rather we lost the first round and six months later are still waiting … Continue reading The One Monster I Can’t Slay
This past week both ASD and epilepsy have been in the news a lot. It’s a strange feeling as for years I've wanted to see both of my conditions nationally discussed but being part of the discussion hasn't had the positive effect I thought it would. With the announcement of the AIMS-2-Trials I've spent the … Continue reading Discussing the AIMS-2-Trials
It's been exactly six weeks since I last uploaded a blog. Even now I'm not sure what to write I just know I need to write something. I've got through all the hard times and now that the road is slightly smoother (a bit like the local pavements) I'm struggling. As ironic as it sounds … Continue reading Tired Babble
My relationship with sleep has never been good. According to my parents, baby me didn't even know what sleep was. In hindsight this was probably due to undiagnosed epilepsy. After all recent-ish EEGs have shown that my sleep is constantly being disturbed by irregular electrical activity. As a kid I found it extremely difficult to … Continue reading My Relationship with Sleep
My relationship with Doctor Who is the only relationship I've ever had which has maintained a positive balance throughout its entirety. Intrigued by an excited 'woo-oo' sung by my uncle during Seder night of 2005, I was hooked from the first episode of Nu-Who. As I believe I've said before, it created an escape route … Continue reading My Relationship with Doctor Who