Confessions and Sadness (by sarah)

I have a confession, last year was mainly spent pretending that I was ok and everything was fine. But they weren't.

In the summer of 2015 I hit my head, it was a daft stupid accident that was very me, I was dancing and having a good time with Jean as we awaited a band I had stayed late at a festival to see. I work at festivals but due to the physical illnesses I've had I have rarely stayed at them late we have either gone home or slunk back to our camping.

Something happened, not sure what, weather I went dizzy or slipped or passed out etc... but I remember feeling weird and falling. I feel off of the grass and hit the back of my head on the concrete path. My head rang and I thought my eyes where closed.

Jean says they were open, she thought I was dead. I was a pool of pain but remember thinking a) I'd killed myself and thinking "oh know" and b) when I started seeing people standing around me that I needed to get up other wise there was going to be a palava. I then discovered I could not get up...

Several hours later after x-rays and what not I could move again and due to scary people in A&E threatening to kill us all, and police and nurses having to reassure us it was all fine, we just wanted to go home. I could move again by this point so they let us go.

They gave us a leaflet on concussion saying it would last a couple of days and what to do if various things happened. Now my memory is that we met up with Al's parents the next day but apparently it wasn't and I'd just slept for a day which for me doesn't exist.

We went for a meal with Al's parents, I was glazed but coherant, like I was when they were questioning me, I knew who Jean and Al where I just couldn't recall their names, and struggled with my own initially, but I knew why I'd been at the festival. It of corse did not help that medical personal did not believe I wasn't drunk, this has actually left me with a resentment though the medical treatment was great there was definately dismissiveness due to the assumption that you can't be having a good time without intoxication.

So the few days passed and I woke up and things suddenly got worse my speech slurred and I got slow. I posted on FB in dispair about how long was concussion supposed to last, and got a phone call from a friend who heard my speech and spoke to Alaric. The up shot being we called on the medical insurance he had and they were horrified I'd just been left and sent me to A&E with a list of scans and things I needed.

Interestingly going to A&E on a weekday morning meant no one thought I was drunk, I got the scan and there were no major bleeds but I had bruised my brain and it had taken a couple of days for the swelling to act up. It was not bad though and there is basically nothing they could do.

They also found I had growths in my sinuses, they are none cancerous polyps and would be expected in people with food allergies etc... as the allergies being acted up makes them grown (or this is what I've understood).

So basically it was a waiting game, the polyps/sinuses could have made me dizzy, my migraine medication could have lowered my blood pressure, I could have slipped... the festival was fantastic at looking after me when it happened as where Churros Bros.

There were oppointments and things, I don't really remember about 3 months, I know I did stuff, I know I posted to FB and twitter etc... I know I was mainly using speech to txt to do so. I thought I suddenly got brilliant at sudoku but I hadn't I was just filling the grids in randomly and my writing was garbled.

Al says unless we were out I slept, I had lucid realistic dreams that seemed like reality. I was stuck in a mash up of Mad Max films and Water World when I was lucky, at other times it was old sitcoms like Friends and soaps such as Eastenders, Neighbours etc... Alaric run my workshops for me whilst I mainly sat and coloured in but by September I was drastically improving, my speech was mainly normal though I still kept just nodding off and having periods of slurred speech.

I started doing stuff again, I think there was a Science Show Off, a few poetry events and my first acting job which Al was very nervous about and used his lunch break to check I was where I should be etc...

Then Christmas hit - from about mid november I started struggling again. Slurred speech, random times in Bristol where I was taking part in an art initative pop up shop and exhibition, my parents had taken me in for the set up and day shifts and that was fine but I thought I was well enough so I went in by myself on the train, it got dark whilst I was traveling, I was supposed to meet my friends for the launch and my shift. I ended up in the completely the wrong bit of Bristol on the pavement, a worried lady thought I was drunk or something and helped me find my friends and then right bit of bristol.

It slowely became apparent that I was having over load of some sort with all the lights in contrast to the dark nights, the more the contrast and the more flashy the worse it got. Just sitting in the carvery with my parents with multiple sets of christmas lights made my speech slur.

Damn concussion.

Then I went to see the star wars film - this was last year so it was the Rey film. We had free cinema tickets at the time. I didn't remember the last half of the film, so of course I went to see it again with my dad... there are flashy fight scenes. My dad was so worried about me, he said if he hadn't known about the concussion he would have thought I was having a stoke, my speech slurred, I was falling and stumbling as we left the cinema, crashing into people.

Now my dad is a skin flint with money, so I knew something was very wrong when I became aware that I was sitting in the posh coffee place in the Docks with posh coffee. It was the nearest place and he thought I needed to sit and rest.

Flash photography also, including at the comic book festivals cosplay, I have huge guilt over this event. My family where all in the crowd watching I'd managed to find someone to cover my stall so headed up to watch but could not get to them. I stood watching planning to take some photos but... but I started to feel weird and dizzy and realised I was getting over loaded so went to walk away. Coordinating walking was hard, my arms were pins and needles. I saw a young man/boy collapse into a fit and being first aid trained I instinctively went to help except I could not coordinate and kind of just collided with someone who asked me what the matter was, I tried to say the boy had collapsed but found even slurred speech was not happening I think I made some sort of noise.

They looked where I was looking and rushed over, there was lots of help now and I knew I was useless so I got to the hand rails and waited for the vertigo to pass. I then had to have a sneaky nap/eye close at my stall. I still feel so bad I didn't help.

Through out the year there have been other incidences including lasers light, airports and other parents thinking I was drunk at kids parties.

My left hand side doesn't work properly - Alaric says you can't see it until they do the cognative tests and then it becomes obvious I am putting so much extra effort into controlling my left side.

It mucked up my drawings prespective went out the window faces where distorted, drawing took an age.

Sustained concentration made my speech slur. But hey I wasn't sleeping all the time anymore.

Now obviously I've still managed to do stuff and physically I am as fit if not fitter than I have ever been. But numbers... I can't always do numbers and if I am not expecting to see people I don't recognise them, I even lost my friend in a cafe because she put her coat on so she didn't look the same as when we'd met up.

This is a scary position to be in as it means if someone realises this they could pretend to know me. I can't even find my own way to our allotment though I did manage to find the Drs so I should try finding the allotment again!

I'm on a new rest regime as basically my brain is still healing and can't cope with large sustained load, there are no information filters. So lights etc... are a tsumani which floods me.

The seizures are more likely to happen when I am tired and take 3 days to 2 weeks to get over though I'm sort of normal as soon as I've rested I'm just abit clumsy and mentally slow afterwards.

Sustained writing and reading are hard it's like all the coping mechanisms for the dyslexia and ADHD have vanished, the nurologist says this is because they take up more brain power and I just don't have the capacity for that at the moment. I still have voice to text but my god it's an editing mess!

As you can tell by the spat of long blog posts I am finding things alot easier with the rests in place but they do eat the day and any day that I go out is a struggle. The acting in the autumn was fine but lit. it was all I did those days and when I go and perform I have to ask for no flash photography and arties can't seem to help but take flash photography often because they are now drunk and can't remember what I said about it all :/

Also it means I am a pain as I have to ask the events organisers and venues to change the room lighting, I think this is going to plummet the amount of people who want to book me :'(

On the other hand I can now get up and down flights of stairs so all those little venues that where out with the pelvis issues are now accessible to me (if it's not one thing it's another - sigh).

It was this fear of ruining everything I'd built up which lead me to try and hide how hard things where being that and people kept saying things like "concussion only lasts a few days" and "use it or loose it" over brain function.

But I need to be honest because these are the new restraints I am working within and if I am to achieve all I can I need to be working with people who understand and want me still. The summers festivals were more than doable - yes I can't really stay once the light starts to fade so that is the same as when I had the fatigue and pelvic issues it just a different type of fatigue and issue.

And the fatigues are different which is bizar but they are.

Basically I can now get 2 hours of high brain function stuff done a day, this has to be broken up and is still not high high stuff like my maths SOBS. And I spark out into sleep which I awake from and then can do physical house and kid looking after stuff. What I had before was muscle fatigue and inability to sleep due to pain. It is a weird contrast especially as both are called fatigue.

On the plus side - this is all probably transient, in that as my brain rests it heals, the little connections re-grow and retrain and the over loads will hopefully stop and I can have my sparkly flashing lights back.

However there is a sad sad price I have had to pay for this. We were trying to adopt, know when Al attempted to contact the adoption people to explain the head bang when not long after it happened he found that we had dropped off their list and it was going to take ages and I was getting better and a good rate so we spoke to them and started the process again.

And had been moving forward with that and I was improving drastically through the summer, my time lines are a little muddled in that for me 2015 and 2016 are kind of the same year due to memory holes where I just seem to not have put any new memories down :/

So it all seemed fine but then the clocks changed and then nights got dark and the sun got low and flashy through the trees and... well I'm kind of count as a vulnerable adult and it's going to take a while to go away and we made a clanging error in judgement resulting in me having a kind of mini pre-seizure thing whilst out with Mary trying to get her to her Christmas play and the thought of if I'd had a little one with me too was not good. So we decided we'd need to put it all on hold after the last head injuries clinic. Plus it turned out they wanted us to start the process AGAIN!!! Including sending out the stupidly long ref. forms which one of our refs had already filled out twice. I am so sad if the origonal time line had happened I probably wouldn't have been late at the festival as there would have been a small person to look after obv. I might have slipped somewhere else and you know even if my parents had been baby siting them then it would just have been one of those things as they would have already been part of the family. When we thought it was all just going to take a couple of months to get better it was the right thing to continue but we have no idea of time scales at the moment and adopted kids tend to have settling in issues etc... and it just wouldn't be fair. So I am kind of angry at the adoption stuff for being ineffiencent and wasting their chance of finding a home for kids with us. But I also feel guilty because there have been house visits and training courses (we've done twice already as the process keeps changing to make it quicker :/) so I feel we've wasted time and money when all we wanted to do was help.

This is heart breaking for us, we wanted more kids, if/when I am better we can try again but I kind of fear they will be annoyed with us for dropping it this time 🙁 But in all seriousness it scared me going into the seizure stuff whilst out with Mary on my own, I was in the village so like we were bumping into lots of people we know but what if it had been elsewhere?

So yeah I hope we can still adopt or foster in future and I hope that the festivals and events still want to work with me and that I get my shiny lights back. If I don't then I plan to just make winter my creative time and hide in the house as I mostly did this year however that eats into pretty much one of my busiest work periods so is really really not ideal.

Also train travel etc... has been hard as I have to rely on the station staff telling me what train to get on and of course I look normal so sometimes they just fob me off. I was bad enough with trains before due to the dyslexia so if you've wondered why I've not been to see you this is one of the reasons and I am sorry I am not making all the parties and shows and things.

Yeah and shows and cinema, I still enjoy going but do have to spend time looking away and shielding my eyes and I know this is combined with then trying to wine and dine me with my stupid dietry requirements is not brilliant, so I understand if that is not what people want in an outing.

Which is why I am completely failing to organise anything for my birthday.

Pony’s and Paper (by sarah)

Today was quiet, everyone but me went away, I sent my eldest off into the icy morn without her tie because though we thought we had sorted everything days ago the tie had slipped our notice, the same as we forgot to go shoe shopping in the sales. She got to borrow one from student services and is not yet in trouble - we still can't find the tie!

Youngest had her first day at after school club and came back more hyper than ever, she arrived home after her sister which was weird!

She was a little tearful mainly I think because she will not sleep and of course school during the day means no naps, she was still a pickle when it came to bed time tonight. She is being good to the cats as her new years resolution - she got licked and not scratched today - this has cheered her up.

After chickens had been fed and watered Jean did homework and Mary played with her set up of play mat, palaces and my little pony, moshi monsters and disney princesses.

Dinner was still Christmas food - we are still in Christmas here and will be until the 6th. Jean announced that when ever she starts looking at religions and studying them all she can see is plot holes.

They then played minecraft together, Mary went to bed and we watched Steins:gate just the first episode with Alaric so he can start sorting his cosplay for the Comic Book Festival. Now I am awaiting the chest nuts he is toasting and yes I did not make it to the first Drink and Draw of the year - I'm not really sure the evening ones are going to be that doable for me anymore 🙁 but fortunately they do now have weekend ones as well 😀

So what did I do all day whilst my family where away?

Well I actually got to do all the rests that I am supposed to do, and inbetween them I managed to have an amazing almost the old me day... I wrote 1000 words of fiction, I sorted out cross posting and other blogging issues. I processed a few photos. I can get max 2 hrs of high concentration done and that is split up and broken.

With great effort I have stuck to calories (1600 until the end of the week and yes that includes the chestnuts), my arthritis is being a little act uppy at the moment which sucks but I'm good.

This means I have not done much physical exercise today but have done some.

I had the most lovely amazon delivery lady 🙂 Really churpy and happy, she delivered sparkly my little pony stuff for Mary's birthday which I will probably actually do the party for in February as I need more space to plan and do things than I used to - it the shift from being physically unable but mentally capable to the other way around - physically I am the best I've been as an adult but brain is a big fat raspberry (ie I just wrote the same paragraph in slightly differing forms three times because I had already forgotten I'd written it!).

Also there was origami paper - lovely lovely multiple sizes paper - but sadly the books I've ordered at various points with money and vouchers have still not arrived so I am stuck with the 70's falling to pieces project and what ever vids I can find!

Still I have started improvising and making up my own projects and to my utter amazement - today I came up with new ideas for workshops - I've been working on ideas I had already planned before the head injury and fortunately there had been alot of them - but this... this was brand new ideas with brand new skills and there was not one but two of them!!! With variants 😀

Yeah so origami featured in my day whilst "watching" the Hogfather - I was lonely so put it on in the back ground - again this is something I have not been able to really do since the head injury - I managed to focus on a project with background noise. I wanted the sounds because I was lonely - so happy about managing this 🙂

Happy New Year 2017 (by sarah)

The new day dawned on the new year and we were all still snoozing in our nests of clean bedding. We'd changed the lining so we would have clean sheets for the new year - symbolic.

We had a lovely night last night with wish stars and fire and The Rats of Nim, and there are photos which I hope to get around to sharing.

Today we got up at 12, lunch time. And made our resolution and goal setting jar. We burnt our wishes last night so that they could fly free (plus I can never shake the idea that burnt things go to heaven - this idea got lodged in my head at 7 yrs of age when my nan died and was cremated I would make her things and cut them up and burn them so they could go up to heaven for her - I got very distressed when I realised a lot of rubbish got burnt!).

We each picked a colour and then cut A4 paper in that colour into 8 (some of us used more than one sheet some of us less), we wrote the resolutions and how we are planning to carry them out, we wrote goals and little action plans, Mary mostly drew hers. We then rolled them up, popped a loom band round and dropped them in the jar. Some of them we shared and some we didn't, for ones that are secret "Don't Read" was placed as a label on the rolled up scroll.

There are extra sheets in the four different colours plus a little bag containing pencils and loom bands in the top of the jar. The jar is huge and once contained stuffed olives - it still smells vaguely of garlic but that is being seen as a feature. We plan to keep the jar highly visable so as not to forget and to help keep the pace up and also we aim to review the contence at the equinoxes and solstices and any other time we think it appropriate. Again this is to keep momentum up.

Mary saw me knock a leek down that was waiting for composting as we ended up with ALOT of leeks this year. This lead to a humourous half hour of word play about me leaking on the floor and at one point calling Jean down from upstairs to help clean up Mary's leeks as she'd leaked all over the downstairs of the house 🙂

Jean rolled her eyes and then giggled and then proceeded the Leek Summoning or nest building as the demi-deamond Mookie Moo (Mary) called the leek construction. I pointed out to Alaric that they had gotten lots of things for Christmas and what was it they were playing with? Shrivelled up leeks. There were arguments over how many sides there should be, Jean said 5 Mary said 6 we pointed out that traditionally it is 7 or on the discworld 8. Like all good kids they ignored us and continued with their game which was actually two separate games but hey they were playing co-opratively with each other - something both of them had put down as a resolution.

Then we went off to the cinema to watch Newt Scaramanga unleash havoc on New York - Mary cried when we said we were going to the cinema to watch a Harry Potter movie, she wanted to watch Frozen there if we had to go and why couldn't we watch it at home? She cheered up once she found it was not one of the films we had at home even though we had explained that multiple times on route!

Me and Jean are of the opinion that Newt looks like Matt Smith if he'd been turned into a shop manikin and then back into a human - weirdly melted.

I have no idea what happened in the fight scenes as I had to hide from them but yeah no slurred speech just slightly tingly arms and a bit of virtigo! 🙂

There were tears today - mine as I feel short changed by the universe and also like I have no right to feel like that... I was ill and stuff as a kid with blood transfusions and walking aids and hearing and speech issues etc... but I thought I'd grown out of it, I thought I'd grow up big and strong and then I was grown up and I tried to do the stuff you need to be big and strong to do.... I failed. Alaric asked me what I'd invisioned myself doing as a grown up and so I told him... climbing mountians, deep sea diving, exploring... maybe even going to space.

I find it hard to let go of dreams. I wanted to find new things and explore. He says you can do this without physically going and picking up rocks, I say I know I tried that but the physical location of labs in some institutions meant I couldn't get into them or it was exhusting to do so and it was still the consolation prize and I still failed at it. He reckons there is new stuff everywhere to find, I'm having trouble seeing that - I said the closest I get these days in writing my novels, notice the mary-sues or janes or what ever they are called of sick people designing exo-skeletons or waldos or other to get around physical issues???

And having said all this I am probably the fittest and healthiest I have ever been bar my brain not working properly... oh the irony it's always something...

And I am lucky, I am alive, I have explored things, this summer I got to go to South Africa, I got to see whales, I've always wanted to see whales!!! I got to read the landscape and talk to people who helped end apartied, I got to see the southern hemi-sphere for the second time in my life. That is amazing, that is more than most of the earths population, I have a big house and kids in amazing schools, I have a hubby who doesn't hate me for keep getting ill or sick or injuried. Who is my best friend.

I have friends, friends who have not abandoned me when my brilliance of mind was dulled, friends who did not run away though none of us can be there always because we all have lives and that is a two way street, a cyclic thing, they helped when they could, and we have done the same, we've stopped each other from drowning.

So I am a ball of confused emotions, the more better I get from the head injury the more frustrating I am finding the issues it has left me with but I am also amazed at what I have.

Maybe next year my Christmas can be filled with sparkling lights again - I miss them but if I can't have them then I can do what we've done this year and just ask people to visit us and have events here.

After a year of multiple redundencies Alaric has a good job and we are even looking at getting a car!

Life is good, our plans are solid, we are almost where we thought we'd be 10 yrs ago 🙂

The coming year will be full of creating and making and videos of much of it as they are easier than big junks of writing at the moment and serve almost the same purpose!

Also Salaric Craft and How To blogs have just had their tenth Christmas so you will be seeing a lot of stuff to do with that, and the Wiggly Pets blog was set up in the summer of 2007 so prepare for more zines and photo stories and the like!

I like acting - I know I've come to this conclusion late in the day but I did an advert and the Fright House stuff, in 2015 I did a music vid and docu-drama. I'm not sure how to get more of this sort of stuff but I will be looking!

Alaric needs to get time to work on his projects - he has stuff that humanity needs... most of his time "off" ie redundent got taken up with infrastructure stuff in the house/server migration.

2017 here we come!

Apparently there will be stargazing and photography 🙂

Failing (by sarah)

I've failed at morning - there is pink tooth paste on our bed and Mary only half dressed in the car for school 🙁 Still I think that is the first proper melt down we have had so far this term with getting ready in the mornings so... getting there - of course Jean has taken the bright turquoise coat to school so I am sure we will be getting a letter or she'll be getting a detention or something about that as she's only allowed black ones :/ To be fair her black one is at the school drying out from yesterday still but she was supposed to take my coat!

My chest is still bad and I've failed to finish decorating the girls rooms. I've now been ill since the 2nd of November and am BORED. Hoping it will sort itself asap.

Yesterday was a System of A Down and Cradle of Filth et al kind of day, Jean came home sans coat and bag as they were too wet and she'd been lent other things in their sted. Which was a relief as I thought she'd gone out in the torrential rain without anything!

Today I wonder if she's remembered her jujitsu bag as she's going straight from school with her friend and I forgot to remind her - I can see the bag from here but that does not mean she hasn't got the trousers and t-shirt with her - the jacket is just too bulky for her to carry in with all her school things.

Maybe I'm letting her down by not sorting it all out, by not driving etc - I hope she is just becoming independent. She's actually pretty epic at organising herself considering she is organising herself and she is mine and Al's daughter and she is only 11.

Rain like this always makes me worry - in 2007 before Gloucester but in Gloucestershire we were flooded and ended up being out of our home for about a year. Rains since have caused issues with the new houses roof etc... and though I know that means it's now a good roof... the fear is there tangled in my brain, if it rains heavy I feel I should go and just check that things aren't flooding - because you know I'd be able to do something about it if it where :/

I'm all mouth ulcery - and run down... thinking it's the aneamia, thinking it's still on running issues of having gotten low levels of gluten etc... over the summer etc... but I don't know.

There are happy things to write about just feeling a little deflated so thought I'd share what was going on. Alaric's new job is great - he's loving it but due to traffic in Cheltenham he is not getting home until gone 7 at night and because he does school run in the mornings he's gone for like 12 hours to do do his 9 hr job. This is the first time I've been on my own on my own in the house everyday since having kids... there has always been a kid about and/or a husband. It's weird because instead of the relief of them having their 2 days in nursery it's like... the house is EMPTY.

I think I'm getting less done but I also think I'm getting more done as I am doing the new rest regime from the doctor to try and get the head bang healing properly.

Tomorrow there is coffee with a friend and at some point I need to go and pick up some bits from another... I have stalls to organise for Salaric Craft and The WigglyPet Press for December and I need to decide weather to shut down my Patreon account due to the fact I think I'm going to end up triple taxed on income that otherwise would be taxed once max.

It's a shame I like the platform... :/

Anyway I will now go and up load pics so I can get back to cutsie blogging and political rants.

Colouring Book Poll (by sarah)

Obviously I have only just launched A Stranger Dream: Love a non-linear visual poem as a colouring book but... well people have been asking about other books - now I have a long list of other potentials but thought I'd see what people want 🙂

Trying to decide what type of ink style colouring in book to draw next - so here's a poll! tweet me "other" too 🙂

— Sarah Snell-Pym (@Saffy) May 6, 2016

Yes it's on twitter - I'm not quiet sure how this works but if you can't click the options on there then just comment 🙂 Also I am happy to consider other suggestions 🙂

Thanks muchly 🙂