Wobbly Eyes and Ear Crystals (by sarah)

Yesterday I turned up for a physio appointment - I wasn't sure what it was for but thought it might be for my eyes which seemed weird but turned out to be right - of course reception were confused because I said physio and tried to direct me to the physio department - turns out it's under neurology and then they couldn't find my name and then found (once hyphen was sorted out) and then they asked me questions about number which I couldn't answer and felt stupid. I can say my birthday because I know the sounds but they pulled the numbers out and not the months name and I couldn't process it 🙁

To be fair I was pretty tired and struggling slightly when we arrived as I'd had to do double admin that morning. Then it was asking for house number which I also failed at though I do know my address honest! And then they asked me if I was the mobile ending in .... now I could have recited the whole number because I've worked at that and have a story that builds the numbers but I couldn't fathom weather my phone number had those numbers in at all!

So Al had to answer for me and I was already upset because it was his birthday and we were at the hospital and it was his birthday and I know I'd gotten him a card and present but I couldn't remember where they were or even exactly what they were! And he'd missed the coach for the kids school trip due to stupid traffic and so had been really upset that he'd caused the kids to miss their trip (he drove them to the first place they were supposed to be going to and met up with the school!).

But the appointment was more than fine though I seem to spend my time after appointments there leant up against walls trying not to fall down.

This was the FB update I made on my return:

And at today's hospital visit we discovered that just flicking my eyes from side to side can make me sweat and feel like I'm going to hurl! I have a pronounced eye wobble at the corners (it had a name I can't remember) so they are going with gaze instability and I have exercises to do which will make me feel sick and there is a slight possibility of a crystal dislodged in my ear - seriously - who knew we had ear crystals?

Couldn't do all the tests because oh my god dizzy-vertigo-pain! But on the plus side this is fixable! Just going to take a while. And also this is all kind of normal head bang stuff which is a relief!

The physio asked lots of questions which kind of hit the nail on the head - near misses whilst crossing the road, struggling with supermarkets, crashing into people in crowds, motion sickness in cars and whilst trying to watch films and play computer games, being uncoordinated ie the landscape is not quiet where I expect it to be.

Part of the issue is that though I can tell this is different from my chronic labrynthitis I didn't really register it as proper dizziness and feeling sick because that has been how things are a lot of the time anyway (inflamed middle ear that crops up as a side effect of the glandular fever I had in my first year at uni).

So they think it is mostly gaze instability - I assume that is to do with knocking my optics out initially in the fall? My eyes can't track thing properly and as creatures that rely on hunting this upsets our brains and mine is desperately trying to compensate which makes me really tired when I come a cross lots of information/visual stimuli. That's why reading makes me feel like I am falling, why the travelators make wobble, why railings drain my ability to walk. And worse it means you are likely not to notice things... like the damn van that all most splatted me the other day - how I could have missed it in it's enourmousness I don't know - but I did.

There is a chance of a loose crystal in my ear but they think it unlikely but we couldn't do my balance stuff because I was feeling sick (plus it hurt - I know weird! Moving your eyes shouldn't hurt).

On the grrr side it is going to take weeks/months to sort the eyes and the same then for the ears if it turns out not to all be visual. The exercises make me feel ill, they will lit take a minute a day.

On the good side - hey!!! This is fixable, treatable, sortable and no operations or drugs are involved!!! WHOOO Who!

No seriously that is amazing!

We are taking the treatment one thing at a time as I still need to be able to function as a person and if we are not careful I could end up at the hospital all the time (I HATE hospitals - really would rather not be anywhere near them - don't get me wrong I also love them for repeatedly saving my life but I do associate them with pain and loss).

Also last week I had another nurology appointment - this was the result of that (as posted on FB):

Apollogies for not letting people know how the appointment went - I was a tad tired! Basically there is a huge and positive improvement but still no end time - so still on rests etc... On the plus side most of the fatigue/brain drain appears to be part of an eye issue ie my eyes aren't focusing on things properly and there is stuff they can do about this 🙂 Physio is go a new set of treaments will begin soon, have to go back and have seizure etc... stuff looked at again even though I've not had one for a while ie since really getting to grips with the resting stuff. So tired still today that I had to be helped using the self check out, couldn't work out my money for the bus and tripped over my own feet. Also Cheltenham Costas failed at having GF savoury and I had to have cake for lunch :/

So it is all good which is why I am uber frustrated at not moving forward more quickly but I am trying to be ok with it all. Also the thing of the only things I can eat safely being cake when out is an issue as I've buggered up my sugar levels and need to sort that out too as that wont be helping ANYTHING.

Conclusion: things are improving, things have already improved pretty damn drastically but there is still a long slow path ahead and it is like picking up pieces of myself that I did not know were lost.

Villanelles Recording (by sarah)

The Gloucester Poetry Society have been recording poems at the Villanelles night and turing them into videos for their channel - I am in this one after the rude poem that begins it!

It was recorded at the Fountain Inn Gloucester and is a rather historic and listing building which is always fun!

There is also the wonderful Peter Wyton, Clive Oseman, Nick Lovell and a host of others to enjoy in the video 🙂

For those of you who know your poetry structures you will have detected that the poems performed and/or read are not villanelles. Rather the event is going to the origin of the villanelles as peasant/normal person poetry rather than the educated elite as it were. This doesn't mean you can not come along if you have an English degree - far from it, the organiser himself teaches at the college - no what it means is it is an event for everyone.

Here are a couple of photos I took:

Wonderful eco-vegan poetry sadly I can't remember her name!

Ziggy reading dildo-rama coughs - see video for NSW poetry 🙂

Peter Wyton getting ready to perform from his book Even The Beggers Have Pearls.

I loved the event and it is moving towards having a workshop at the beginning which I hope to get involved with 🙂

Info for the April one is here.

Missing Out (by sarah)

Saturday night there was a reunion etc... that I really really wanted to go to. It was full of lots of the people I'd worked with at the campsite (the one where we got married). But... when I went to check up on the details it became apparent that it was going to be a giant disco type thing and I hadn't paid on time. I wasn't too worried about the payment deadline, I know they would have let me in anyway and I could have given them cash then and there because they aren't nasty people - I just might not have had a meal as they were catering etc...

However, I was still exhausted from my nuerology appointment and just with the general business of everything - I'd also been out recording poetry and doing business networking events etc... and as much as I was desperate to see everybody I just couldn't.

I couldn't because flashing, blinking, swirling lights cause my speech to slur and my coordination to go and I don't want to fall again, I don't want to hit my head again, I don't want to be slow at functioning for at least four days afterwards - potentially two weeks and though it shouldn't be - the main fear of wetting myself publically if this happens because that seems to be a thing as well.

Now I have been to events and lurked outside a lot etc.. and these days disco lights tend to either fall into gentle changing fuzzy lights which I am fine with or all singing all dancing lazer lights swishing and flashing and looking glorious - these I can not cope with.

I probably should have asked what the set up actually was but I don't like saying "I'm awkward please alter your event and make it less pretty so I can come" it feels destructive but also there is another side to it - I fear asking because then I find out if I am worth such a change to the person/people/organisation and though most venues and events managers have been fabulous - this was a social event and I found the thought of asking parralising. I could not have coped with the rejection if it had come so I did not ask.

Fatigue is a big risk factor for the seizure things so where as I probably would have risked going and spending all my time outside - I knew I was too tired plus I would have been even more tired once I got there due to travel times etc...

Another issue was cost - if I could have taken Al without it costing a whole extra ticket then I also would have gone. It is pretty much the sort of event he finds hard but he would have taken me incase of seizure, he would have been my safety net but it was too much money for that (because I'm a skin flint because I'm an artist and without Al I would be a starving artist so I just actually did not have enough money for a second ticket!).

So I am sitting here jealous and bitter, feeling increadibly sad and isolated, looking at everyones photos of them having a fab time and feeling angry at myself and the world and causality and rocks and well everything.

CampNaNo April 2017 (by sarah)

I love writing challenges - they are a bit trickier these days with my limited time window of working brain but it is still possible. One of the things I like about them is not feeling al on my on 🙂

And so me and Alaric are signed up for one of the Nation Novel Writing Months add ons... CampNaNo. This used to be Script Frenzy and is where I'd work on my comic book/graphic novel stuff. Pretty much I still keep it as a Screnzy and work on my graphic novels and Al's role playing game. There is also a poem a day writing challenge NaPoWriMo in April so I bung things up on the WoPo site and the FB page and things to help others. I myself take it as a time to look over what I am doing with my poetry and spend a little time each day on it.

Both girls are doing their own CampNaNo - but me and Jean are having a writing race - known as The Stubby Challenge!!! This is how I did my first actual written and not voice to text stuff after the head bang (I think but to be honest it's all a little foggy back there!). It doesn't involve screens and I can write as big as I like and Jean loves it and... it works - though obviously it means that at some point there is going to have to be a lot of typing up!

The way it works is that we find funky pencils - this time it is catapaults to go with the camp them, last year I think it was dolphins and bats?

We have the ream of paper and our pencils and we write! Then when you are scratching the paper with wood you sharpen the pencil - the first to end up with a pencil stub wins! We even have a special Octarine pencil sharpener from the Discworld Emporium!

I'm slowely lurching my way through a novelisation of my first comic book script about how The Punk ends up being apparently immortal. It is slow progress but that is fine 🙂 Jean is working on her project from last year too - The FoodVerse - we typing up and editing chapter one An Apple Pavlova, now it is about about carrots.

Mary on the other hand is dictating a set of stories about a rainbow jungle and the sparkly creatures within 🙂 When the rest of us are working on our books she sits and colours in the picture she has chosen for the front cover. Interestingly they are quiet Roald Dahl in nature.

Of course I am still managing some typing so am kind of working on multiple projects - this means that I have to have check lists to keep myself on track especially as the time I can concentrate for is actually so small - I can't do hyper focus and I can't fall through the page - my brain just shuts down and I fall asleep! But I think I am getting there and producing good stuff.

So yeah CampNaNo is go and I am prodding people to write and create!

Cyber Punk London (by sarah)

Years ago (over a decade actually) Alaric tasked me with illustrating two Role Playing Games he had written. I have been steadily working on them and part of that is finding suitable visuals to construct the very specific images needed. So I often trail around cities taking images of cyber punk type stuff and the fanciful - the weekend allowed me to sneak some pics 🙂

Our cities are full of unexpected finds like this ciggy bin face - it is obviously a droid from Alpha Centuri and is fed up with people putting burning leaves into it's eye sockets!

Little micro structures hide, clinging to the larger buildings around them as if we truly are creating a jungle of a different type - covergent evolution, lies at the heart of this one 🙂

There were so many great shapes and geometries but I had limited time as we were lit. rushing from the station to meet our friends. I want to go back and spend another creative weekend in London, catching as many of the little hidden textures as I can!

As beautiful as the buildings are, there is also something menacing about some of them, they loom in and block out the light. But if you look hard enough it is still there, defiant of the giants that rise on metal frames.

Parasitic towers cling to their host buildings gloaming in reflected sunlight, the light was sunset light and was thick and golden, tinged with surrealism as the cities lights mingled with it.

The city is a labrynth, including confusing and distorting reflection. They buildings are glass coated, they shine and reflect and capture each other's images, it can be hard to tell what is a building, and what is a reflection of a building on a building or a building within a building.

The steal and glass and light created metallic rainbows and an eye rolling husband who was trying to make sure I did not walk off of steps or in front of cars as I was so captivated by the scenes.

The building vary, some are angular and sharp and others are soft and curvy and some are curvy and angular but modular and it is a landscape of geometry.

Again the shapes and angles begin to suggest something organic - in this case back bone and central nervous system - it made me think on what would happen if metal suddenly became alive - what sort of creatures would our cities spawn?

Many patterns, textures and ornamentation where present and just waiting for me to capture them, the gerkin looks like glass scales, arching off into the distance. I am also starting a photo study of texture this spring and the buildings were a surprising source of such imagery.

And of course hidden in this new glass and chrome London is an older London, and it cries out for stories and contrasts and has a kind of magic realism. These pictures scream... write us into a story, a poem, a piece on heritage and art... and that is indeed what will happen to these images, they will be appearing on my writing and art blogs in various guises as well as being used for drawing practice 🙂

But really why are there giant marshmallows in these trees? And they were not the only strange and fantastical thing we found - a steampunk macarbe sat in the pub where we met our friends just before heading for curry on Brick Lane - there were clusters of young people preaching or goading or occupying London. There was a religious zing to them and they dressed in threads that were bare for aesthetics rather than worn to unravelling. I could not hear what was being said but they had followers with glassy zeal in their eyes. A passion pulsed in the underbelly but it was a safe fire, a cold fire.

We had a great meal and catch up with friends but as always I am reminded that my London is erroding, disappearing, I can not say weather this is a good or bad thing but London is bright and over whelming, like a million pieces of brain fire. Confetti of glitz and glam that may well tarnish or burn out in the blink of an eye. The markets are gentrified and hipster zones, interesting but no longer mine. Consumerism as always drives the city forward - this has not been lost on the natives living in all the envrions of London - a city of villages and zones.