A slip of the brain

I pride myself on holding everything together mentally, but had a moment today that was hard to explain.

One important note – this is not a sympathy post. It’s more an explanation & self-record. I will talk frankly about my condition, but only because we’re geneticallly linked.

I’ve been dabbling with voice acting in audiofiction recently & have had the absolute honour of working with some proper pros (I’ve added links below, because if you haven’t discovered them oooh you’re in for a treat). Now, part of live action roleplay podcasts is that there’s no script & you have to think fast. This ticks so many of my creative boxes and I love it. It’s a world where I’ve mentioned that my body is a bit wonky, but I can generally set my stupid physical self to the side & have fun. So based on this, I mask a good 80% of what’s actually going on, and some people don’t know at all.

So what happened?

I was mid flow with my warlock telepathically interrogating a player when the brain fog descended and I asked a question with complete confidence & they just sort of looked at me…

The words I’d said bore no relation to what I meant to say.

I snapped out of where I was & managed to brush it off and said sort of what I actually meant. And on we went, albeit a bit foggy.

So what actually happened?

It’s something called Transient Aphasia and is similar to the aura stage of a migraine. One minute I’m bright as a button & the next I’m talking absolute crap and am not consciously present for a few moments. It’s a bit like being in a vivid dream where no-one can understand you. It feels like ages, but it’s usually seconds.

It’s embarrassing when you build a persona around being on the ball & intelligent.

Aphasia can be triggered by any number of weird things going on with my body.

I take a drug called gabapentin which was developed initially for epilepsy, but treats the nerve pain caused by frequent dislocations & spinal injury. It does it’s job, but does so by impacting on my brain’s ability to create new synapses. I have to work extra hard to remember things. Helpfully, in addition to jellifyig my once super sharp mind, it can also trigger Broca’s Aphasia (when you lose words but understand others).

This is why poor Mr Geek has become a mind reader of what “The Thing… The THING” might actually mean at any time. Weirdly, I can still explain an adjacency matrix for Djiksta’s shortest path algorithm, but can’t remember the word for Spoon.

Then there’s the main reason for my migraines – cranial instability. I’m still mightily pissed off that my own spine is putting pressure on my brain and causing occasional cf leaks (yes folks, that’s where pressure builds up & my brain juice leaks out of my nose or ear – who says disability isn’t sexy??). So these migraines can take 24 hours to get going & early sings are whoosy heads & Wernicke’s Aphasia (the kind where you talk crap & have no idea you’re doing it).

Treatment for spinal instability in the UK is pretty much non-existent and after long discussions, we’ve agreed that I don’t want surgery anyway. Since being diagnosed with Ehlers Danlos I got the answers I needed and frankly don’t want to be poked & prodded more for a genetic condition that has no cure.

I make a point of not dwelling on it too much, but cringy moment’s)l like this in front of people I really respect, make me so frustrated with myself.

So, on a lighter note here are the podcasts I promised (these are all podbean links & not promotions):

Advertisements

The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

image

I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

A Genetic link for EDS 3? Or a desperate doctor needing answers?

I came across this doctor’s website via a Facebook link. It’s quite clear that she is desperate for answers as a sufferer herself and as such has devoted her work to finding out why she has gone from a healthy, outgoing type albeit a bit bendy and achey, to a physically disabled introvert with enormous anxiety issues.

Whilst this was an interesting read, it must be made clear that the medical journal that this was submitted to declined to publish her research.

An interesting and rather long read.
I was interested to see how she linked mast cell activation to possible genetic markers for EDS 3 which correlate to both hormones and the ability to react to acute and chronic stressors – not mental, but triggering EDS symptoms to worsen suddenly after a particularly bad infection which is what we think triggered my descent into merry hell, or a chronic infection such as Lyme which stimulates the genetic marker.

I share her desire for answers, but admittedly, whilst i recognise some of the anxiety & perfectionist traits described, I nonetheless resent her link with mental health and stress induced physical illness. There appears to be an insinuation that Mast Cell Activation is a consequence of an inappropriate reaction to stress.

http://www.rccxandillness.com/theory-for-patients.html

TLDR;
EDS 3 may be linked to a genetic marker.

That marker is linked to mast cell activation (MCAS).

This allows other issues to be activated at the same time (POTS, CRPS, CFS, MS).

The activation is caused by a stressor such as an acute or chronic infection.

Links to how progesterone are used to combat stressors explain why women are affected more often and symptoms worsten before menstruation.

Specific personality types are identifiers for those who may later develop chronic illness through EDS. ( :/ )

The marker identified also has links with specific mental illnesses.