Hospital – The Bad and The Good – med update (by sarah)

After 3 yrs I am being discharged from the Head Injury Unit for Self-Care i.e. my quality of life is good and I am showing a positive trend in improvement and just need to keep on keeping on at my own pace - I am not back to 100% functionality but still have a good chance of reaching it! Neurology stuff for the seizure thingies needs to continue for now but this is still epic news - I was discharged from the physio a while back which ironically makes my time and fatigue management a lot easier as the hospital trips are the biggest drain!

Seizure stuff is a bit of a pain in the backside still - I haven't had anything major since the miscarriage but.... still getting muscle spasms, head pain/rushing noise - it's kind of both and I have no idea how to describe it but when it's happening my muscles are twitching worse than when the tens machine used to accidentally get switched up high! I also get colour drain in one eye and wet myself etc... I don't remember them but managed to have one when Al was laying next to me - it was mild but enough to observe the symptoms properly. My jaw also clamps down and I often bit the inside of my mouth or tongue.

Supermarkets... I still struggle with these damn shops - it's like they are designed to be maximum overload or something - but I can manage a half hour or so trip now with no problems - mainly I avoid peak times and being with the kids when shopping.

I am still having to have quiet breaks in order to get through the day - I can now skip rests but not for more than two days at a time and even then that is pushing it... but my speech is so much improved when I first went to the clinic it was still pretty slurry all the time and then it would get progressively worse the tireder I got - yesterday on 2 hrs sleep I managed an entire session being articulate and even laughing at the on going issues with face blindness (made a few booboos at the poetry festival with recognising or rather not recognising people!).

Mobility is in a little dip at the moment but that is not unusual - and is due to having had a little fall/slip whilst away on holiday and then walking all the ruins and castles and follies we could find regardless. The walking stick comes and goes and also is worse when I've had a seizure thingy - because it is something I have to use for pelvic pain, fatigue and sometimes just general managing to stand upright and not just tip straight over! Most of the time I don't have to use it at all! The last factor is the only one that the head injury has added the other two pre-date it!

The NHS have been fab with this but... getting head injuries picked up and dealt with is really hard, most people end up fending for themselves and here's the thing - if I hadn't had my family around to take care of me I am not sure what would have happened too me - I see some of our local homeless people and think about what I was like and... I still struggle with money and finding my way home - it would have been very easy for me and people like me to have ended up on the streets, in a very vulnerable position - but I have my family and they have made sure I was as safe as could be - I'm pretty sure others have not been so lucky, and I don't think there are the provisions in place to help them. I was being regularly mistaken for being drunk or drugged up and that kind of makes you invisible even within the A&E departments - something which I fear will get worse as funding cuts bite.

And back to that whole truma thing - hospitals.... I find them incredibly hard places to go into - they have saved my life - they have saved my babies and allowed them to be born, there has been care and compassion - there have also been sharp needles and knives, and pain and death and blood.. lots and lots of blood - most of the time my own but not always. Hospitals are places were I have been detained, places I couldn't leave (though I assume if I'd insisted I could have left), places where I have been strapped to beds or held down so that pipes and tubes could lit be rammed into me - emergency stuff is like this and for me I have sometimes been way more aware but unable to act on things. The idea that I might go in and not come out and that this will be surrounded by pain.... is always there - hovering with the smell of cleaning fluids, over cooked food and sickness that pervades.

Little side note here - the art works that are scattered around the hospitals became incredibly important to me at such times - sometimes they are the only things I truly remember from a hospital stay.

I had two hours sleep before the appointment because I had forgotten about it and then checked my calendar and there was the appointment large and bold and... in the block where I lost the baby and every time I tried to sleep all the stuff from before rushed back, for 18 months after I had Jean I had a reoccurring dream about being held down and crucified to keep her alive - I described it too Al and he was like, "that's a memory of them taking your deep arterial blood when you went into A&E" I don't really remember that happening, I do remember blood squirting up the cubical curtains and that it was my blood and I was pregnant but I can't recall which A&E trip it was but I know there was an old man screaming. Even things like my blood transfusion at 4 yrs old decides to come and haunt me on such nights.

If I know about the appointment I can prepare myself and sort my thoughts and write or draw the stuff away so I can sleep but if that doesn't happen we get what I had this time - dreams of machines where you feel like you are buried alive.

I gave up on sleep at 1:30 am and wondered down stairs to watch documentaries about Japan - there I marvelled about little old ladies that catch venomous water snakes that are 10x worse than rattle snakes - with their bare hands, wading into dark water caves in their flip flops - they reminded me of my nans - they way they chatted and got on with things etc... though obv. my nans only had adders and badgers to contend with but I do recall how they would chatter to each other! I watched deer being bowed too and bowing back at a temple and I rode my exercise bike with it's special seat to help when my pelvis is bad and managed to get myself physically exhausted enough to sleep from 4:30 until the 6 am school run start.

One of the dangers about feeling like this is that I don't want to go to the hospitals and clinics and drs so I avoid them as much as I can and sometimes my eagerness to be discharged is not because I am better but purely because it means I won't have to go to the hospital again so soon. Like wise I tend to put off going to the drs until something is really wrong.

So yeah - there we go - good thing head injury stuff is getting there and I know how to manage various things including the truma but things.... NHS is struggling and I am incredibly lucky to have physical stuff and not a mental health issue where the waiting lists and emergency provisions have all but crumbled.

The Quest for Aethelflaed Hots Up!!! (by sarah)

This year is the 1100 yr anniversary of Aethelflaed, the Lady of Mercia and Warrior Queen's death - living in the city she was buried in means that of course I have become involved with the celebrations to mark the occasion!

Here. is a little summary - though it does not yet mention everything that is happening 🙂

There is so much AWESOME going on for this event - I'm taking Cuddly Science's Histories to the event and have been researching and amassing much stuff for workshops including metallurgy, textiles, music, a new puppet, mud squishing, art history, wood work and more!

I have been privileged to work with the people at the Museum of Gloucester and have been pestering historians everywhere - I might also have high jacked the family holiday and various story telling gigs to slip in some extra research. I've reached the stage of trying to track down copies of various Chronicles (in translation) and have revived my interest in Viking/Saxon et al poetry.

Last year I decided it was time to move Cuddly Science onto phase 2 - Cuddly Histories and so found myself at the Archaeology Festival and even at some digs <3 Being a geologist by training this reminded me of my love for archaeology and history - I went on to take part in the History festival with a talk on Cave Art and so on...

I'd already decided to make the Aethelflaed puppet for this year when the chance of being involved in the festival came up and so my Quest for Aethelflaed and Search for All Things Anglo-Saxon started - I have taken photos of rocks and statues and medallions and fallen down rabbit holes of Norse language roots, I am using my science, technology, art, and craft skills, I am researching and learning and this makes me very happy - I am also meeting lots of interesting people on the way.

I am also learning so much about the city I live in - things I just didn't know.

With only about a month or so to go before the festival it's time to turn the heat up on my Quest - can you work out what I am up to with this little piece of kit?

Don’t fund your online business with advertising (It’ll only make everyone hate you) (by alaric)

I first got online in 1994 or so, and the Internet was a very different place to how it is now. It was like a busy marketplace - thousands of FTP servers, things you could telnet to, email addresses, Usenet groups, IRC channels, gophers, MUDs and, increasingly, Web sites. Directories like DMOZ and Yahoo!, as well as FAQs for relevant newsgroups and mailing lists, were how I found things. It was cheap to set up servers and run services on them, so lots of people did. Companies and universities got leased lines to provide Internet access to their folks, and ran servers to provide their presence to the Internet; while individuals got dialup Internet access, and basic email/Web hosting capability from their ISPs; or for the nerdier amongst us, wrangled or paid for "colocation", getting somebody with a leased line to let you put your computer on a shelf somewhere, hooked up to their power and network.

It was pretty chaotic, but it worked. Internet usage exploded in that period, but the rate of technological advancement wasn't that fast (relatively speaking). All the technologies we used - TCP/IP itself, DNS, Email, Usenet, IRC, the Web - were built around some documents describing how the system worked (usually in the form of RFCs). Most of these technologies were implemented in two parts: the client that somebody ran on their computer to interact with it, and the server that somebody ran on a big permanently-Internet-connected computer with a fixed IP address and a nice hostname. For instance, with the Web, the client is your Web browser, and the servers are the computers that actually hold all the web pages; your web browser talks over the Internet to the server responsible for the page you want, gets it, and then shows it to you. Because the client and the server talk to each other using the protocol defined in the documents, there would often be several clients and several servers available, written by different people and aimed at various different kinds of users - and they would largely work together. Read more »

Creative Industries and Science Barriers for Dyslexics (by sarah)

This is the twitter thread I wrote this morning - I realised that I should probably blog about this as well.

As a #dyslexic creative & especially writer I use editors & proof readers for print/publications etc... but when it comes to form filling for projects I often do not find out about them with enough time to organise that & so have to send with only me editing - this looses me work.

A couple of times recently I've been turned down because of this only for them to see my work elsewhere and come back to me and say they do want me after all. Also if they've heard of me word of mouth there is no prob along with informal email convos #dyslexia

If I have informal email convos with people I tend to get the work - it is only when I am presented with great big long forms & not much time that an issue arises - sadly a lot of the work I do has this as the accepted route in even though it's not relevant to the work #Dyslexia

Of course I probably shouldn't be complaining as I do actually have a load of jobs lined up but not sure if I would have ever been able to establish myself in this world of from filling if social media hadn't made me visible in an informal way in the first place #dyslexia

So that was the thread - and it is something I have feared for a long time - it had not escaped my notice that I tended to get jobs I didn't have to fill forms in to initially get (I might have to fill forms in later on for pay and insurance etc but that was kind of after I 'd already got the job). Applications for funding, projects and events where I have to fill in forms... never got acceptances. Ah you say but you know that's wrong because I have presented at things where I needed to apply that way... yes but I had someone else either fill the form in whilst I told them my ideas or there was plenty of time and I filled it in and then sent it off to various people to be corrected.

It could be argued that this is the case for everyone filling these forms in ie Arts Council Funding is notorious for being hard to chase and the amount of form filling needed, but... for me form filling is not just a nuisance or a bit of hard work - it is exhausting and humiliating as I know I can't get it right - it doesn't matter how many times I spell check - something is going to leak through. So what am I to do if I come across a really cool thing I want to be involved in and there is like half a day before the dead line - really what am I supposed to do? There is not time to get it edited, it's going to take me all that time to write the damn thing. This leaves me with a scenario of I try anyway and will get rejected because of spelling or mucked up sentences in which case I've wasted half a day/whole day that I could have been using to do other things - other work/creative things... or I don't try.

I'm not very good at giving up or not trying - I am a little bit stubborn.

I had been trying to convince myself that everyone gets rejections all the time from this process - it is after all a filter to try and reduce the numbers of people they have to actually look at. But.... both the arts and science worlds are looking for creative innovative people and both areas rely heavily on this form filling malarky.... meaning they are effectively screening out the dyslexics and all the associated creativity and innovation that comes with them.

Next question - how do I know it's the dyslexia and not just shoddy ideas? Well a) if I have conversations, people see my work or its and informal email chain I get the work... if I have to fill forms in then I don't. b) If someone else fills the forms in for me - I get the work. and c) I've been told by several people I need to think about how I do the form filling thing in - I appreciate their honesty.

Which leads me back to the thing of what do I do? Art and Science Communication are not the most stable or well paid of industries and you need to be juggling a bazillion different jobs, possible job threads on various communication platforms including social media, emails/letters, meetings, events, the dreaded networking and still having time to design/make/deliver workshops, oh and don't forget to invoice and do your taxes - so there has been a lot of job chasing. If you stop then you end up with dead periods of time and they can play havoc with your cash flow and if you are not careful you can end up with the overworked under paid thing which always sucks. (See the book Success ...and How to Avoid it )

I personally have gone with the idea that I will fill the forms in anyway because I just need to keep trying and... quiet often what happens is people will then see me doing something else and they remember my application (probably because the spelling was so dire and they couldn't believe someone thought that was an ok thing to submit or that they were genially impressed with my ideas or a combination) and they call me into the project later on or when someone calls in sick, fails to deliver.... I am BACK UP girl - this is nice and it isn't exactly like I am currently short on work... but you have to keep juggling it all or it crashes down around you.

I am the reliable safe option and probably count as nice to steal Neil Gaiman idea form Make Good Art . To be honest I am also a bit sick of being the back up person because it makes me feel like I am not valued for the actual talents or work I do but purely because I will turn up when I say I will and also because it means I am often not in the event programme or they forget my name for the end credits or people just assume I can pull them out of tangled situation they have gotten themselves in when I might already be busy. Of course I am at the stage of being able to be grumpy about such things and to even CHOOSE what work I do.

But... this is kind of because I am already established - I am established because I happened to be on social media and blogging and able to afford a camera at the right time - that I bypassed the first phase of form filling and went straight to the being seen and asked to do stuff. That is currently a lot harder to do... and I have been in positions where I haven't been able to or have access to the resources that would allow this type of success and it sucks and I can't help thinking that if I was starting out now I would be some what screwed and join the ranks upon ranks of others who can't make due to the stupid barriers that are put in your way that don't even have any relevance to the job you are going to be doing!

Incidentally the reason I have not pursued my dream of PhD is similar - just too many accessibility issues surrounding multiple issues and being a parent.

Rain and Ruins and Reigning (by sarah)

Found Poems of the Concrete - The Priory

The city landscape is multifaceted and layered, within this city, the one I chose as home - there is industrial wealth rotting from the victorian glory and areas of decay a few decades in the making - fixed with memories and longings and a hope that transcends it all making it ripe for a rebirth - Tudor houses stand in grandeur around 1920's colour and glaze - we choose which story to tell - there are new glass and glitz buildings calling to the business minds and all of it is beautiful overlapped and intwined.

There are the very rocks beneath - housing stories far older than this city - than this kingdom - than this land itself - within the rocks - stories telling of different landscapes. And then there is the religious blanket that settles on this region and gave it life and industry in the middle England of old. There is the Priory and the tales that it's remains have to tell.

St Oswald's.

Golden stone arches whispering of times long forgotten and a majesty of realms, calling for exploration but first there is the semi silhouette of something more modern and yet still older than many countries can claim - a building that stands sentinel as if guarding the religiocity of the region - though weather it practices the same as the foundations as they would suggest it was something else. An evolution of Faith? A changing and growing with the times and peoples and rotation of the Earth around the Sun. It is none the less a church and is full of the patience of ages with a name of mother and of guardianship St Mary's.

The sky is a leadened dead weight that sucks the colour and definition from this built and ancient landscape, ice waters threaten but there is no storm in the roll and twist of those clouds - though there is a strange glare of light that hurts the eyes if focus is attempted. The clouds seem to phase out through the stone windows as if this world and that observed world are not quiet in alinement reminding you of tricks for meditation of doors to December and cats eating themselves and strange impossibilities that contort the mind until they do indeed become possible and you think of travel between such worlds and laugh at the riduclious idea and move on.

Or rather back, stepping further and further away from the stones and the window so that more of the decaying structure is visible as for a moment it was as if the halls had become whole once more and the collapse of centuries had fallen away. The wind whispers songs that bounce of the stones and get lost in the cracks and weathering. Little ideas are hiding in the chinks - maybe one day they will be found and listened too but not this day because you are too caught up in the stone work itself, and how it forms around the windows, and how the windows are indeed more of an absence of a thing than the thing itself.

And they mark that this was once a room, once a living breathing space, where people where and thought and become nothing but bones and memories and shadows and shades that may still lurk in the cracks and dips of this ruin. Little fragments of the before can be found when you look hard enough - and up close to these old old stones that sing of the multifarious lives that they have lived, hallowed halls of Warrior Queens and monks sending the hopes of a people to the sky god and always the gentle hum of the city around you to remind you of the place in time that these relics now inhabit. Not everything is stone, more perishable things hide in plan sight.

Time seemingly flows around this place, condensing and stretching at odd intervals and you stand in the middle observing yet another window and imagining the glory of the ground it would have stared out upon and the tapestries and drapes and trappings of various ages seem to drift across your sight, a reminder of harsh climates and cold stone walls - churning memories of the places you have lived before of brick and stone and wood and block and how each of these domiciles felt. Of those that leached heat and those that retained it. Even the canvas you slept under in the garden as a child, a surplus of the second world war so heavy and thick, or thin metal that shifts and quakes in the driving rain so loud it becomes the mind. People have been living their lives for a long time in many ways and at many levels of comfort, but these halls would unlikely have allowed you to become old. The thought is a shudder of sensation as if ice has been packed into your bones and is still expanding pushing out the marrow and splitting the core of you.

And though you can feel the tragedies of the human condition piling up through the fabric of histories you feel the tug and the pull to investigate further - to fall down the rabbit whole of archaic intrigue and to explore these words that are at once the same as our own and so completely alien that they burn the minds eye if left unfiltered. Blood or no blood, and the mer slight possibility of holy relics - of a person fragmented and normally falsified - can do little to damp your curiosity and besides someone told you it was built wrong to house such things - there is an elegance here that draws you ever onward into it.

A storm churns reminding you of legends older than the building though not older than the cut blocks that make it up and certainly not older than the stone that was quarried from dead seas that hide in Cotswold Hills. But still the cycle of stories push at you, as if trying to summon thick mists like dragons breath to hide the roads and red bricked buildings that surround.