It's not you, it's me

I was at the Neurological Day Stay Unit (NDSU) the other day for a check-up. It was my first “real” check-up since I had my seizure nine months ago. It’s been really frustrating not being able to speak to a medical professional who specialises in epilepsy as my GP really just isn’t across this diagnosis enough to answer my questions. Plus, the people’s names on my prescriptions and hospital discharge papers are impossible to contact.

After rereading my previous post on my temporal lobe epilepsy diagnosis I can see I have conflicting information. For instance, in the post I say that I am “relatively typical, age-appropriate” for this diagnosis, where the Doctor at NDSU said it’s “unusual to present with these symptoms" at my age. So which is it?

And this is a big part of what I find frustrating - the not knowing. I don’t know; they don’t know how or why this is happening to me now.

At the hospital in June 2016 it was suggested that it was tied to dropping oestrogen levels; at NDSU I was told there was no connection between oestrogen and seizures but there was with progestogen but not in my case. 

I pressed again (again, again) as to why; why? Genetics? I haven’t had head trauma. Why? 

The doctor said they’d done some research in epilepsy related to antibodies in the brain, and I’d been tested for the known antibodies and returned a negative result but, he said, I might have anti-bodies they didn’t know about yet as it was such new science. 

Public Service Announcement: don’t Google “epilepsy” and “antibodies” if you don’t want to read about “autoimmune disease”. Just let that particular sleeping dog slumber.

In the end he must’ve got annoyed because he said “it doesn’t matter why; you have it now, let’s deal with it.” Which is doubly annoying because that’s exactly what I’d say to myself if I were him.

Blah. I still want to know how and why.

Yesterday I was in bed watching One Direction videos as my usual weekend morning computer-time these days. The temporal lobe wants what the temporal lobe wants.

The auto play feature dialled up the next video and rather than the expected 1D, it played The Graveyard Train singing a song called Rosalie. It’s a song I’ve had trouble finding video of them playing in the past, but I know I have my own copy from a time I recorded them played in Melbourne. So I went to my YouTube channel and scrolled through my own videos to find it.

I have made quite a few videos over the years and one caught my eye. I posted it yesterday if you’d like to see: it’s a video and story about how we bought the Mini when I lived in Australia. I played the video. It was completely new to me.

Not only did I not know the story; I did not have a memory of making the video. If you see the video you’ll note that it’s edited from footage mostlyfrom a GoPro suckered to the car - and I don’t remember that. Did I own a GoPro? Was that Iain’s GoPro? I don’t remember ever going to Willo’s folks place but there’s Rick trying to fix the Mini’s failing trim. I recorded and edited and voiced over that video, but I have no recollection of any of it.

I decided to share this with Fox and fired up HootSuite to Tweet her a link - as usual, I couldn’t remember her Twitter handle - so I opened her website, clicked on the About menu item and BOOM, there’s a photo of Fox marrying James. FOX IS MARRIED TO JAMES! I did not know that! Sure I know there were together but I didn’t know they were married! Greg came in because I was pretty much yelling this out loud to myself. “Sure you did; you knew that!” he said. 

<big sigh>No, no I didn’t. It’s another memory that I have discovered that is gone. 

I don’t know which memories have gone until someone mentions them or I find photos: Allania’s graduation; every Webstock before this last one; trips to USA, Australia, Europe; restaurants; movies; concerts; going to Frazer’s house for BBQs (multiple times, apparently); six months of work (minimum); how to use an international airport.

Blah this is the worst thing about my seizures. And the thing that scares me most about having another one.

Having those videos helps. I watched quite a few of them yesterday and they hold many of the memories the seizure wiped. Same with reading my own blog. With hindsight I have to say thank goodness I filmed so much; thank goodness I stored so many memories here. With that in mind I’m going to shift my idea of why I have this blog. Sorry, Dear Reader, I’m going to change the audience for this blog from all-you (you didn’t even know that, did you?) to a little-bit-more-me. If my stupid etch-a-sketch temporal lobe decides to shake itself clean again, I’m going to need a reference to get me started anew.

Another thing that I realised at the NDSU was that I don’t know my medical history well enough to repeat it each time I have a new doctor. And to be honest, I only know what my family has told me. I was unconscious every time so how am I supposed to remember all the seizures and when they happened and what type they were etc. Doctors really do expect a flipping lot of us. Imagine asking a person with memory problems to remember to take medication? or even to let them know when we forget! How the heck am I supposed to know if I’ve forgotten something like that?

So indulge me while I turn to video more from now on. It’s easier to re-absorb the information for me later when I need to dial up a memory, and easier to find if they’re here.