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.

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.

International Mens Day (by sarah)

It is International Mens Day today - this popped up in my memories on Facebook - Alaric curled up with kitten Lithium after her op. Alaric as he says is not shy about his emotions like most male people but he does still have extreme self reliance which causes him much misery and is part of the bundle that makes men more likely to commit suicide - my friends that have killed themselves to escape the dark places have so far all been men - here is the tribute song/poem that I made for them:

And also Al's write up of the miscarriage from the father point of view. Something which often gets over looked.

And guys - if you are in that dark place please please seek help - I know it's the hardest thing to do.

Universal Misdirection (by sarah)

This morning is the first morning alone since the miscarriage as Alaric has had to go to work in Cheltenham, I did last night with just me and Mary but mainly she went to bed and I made Christmas cards until Al and Jean came in.

This is a whole day of empty house - so I decided to make more cards - I like making cards. I made it up to my attic, rested, looked through things until I found my crate of card making things... I bought it down stairs - my stomach is now unsurprisingly hurting and cramping up again. I'm not quiet sure what I was thinking, but in my defence it wasn't a heavy crate.

Anyway - I have made lit. hundreds of cards - no idea what I am going to do with them - I want to make more as well. I think I'll just put them out as "pay what you want" at the 2 craft fairs I am doing. And of course we wont have to buy any cards...

Mainly this is a distraction - I am trying not to think too hard whilst on my own. I've finally started my NaNoWriMo and got to 1000 words last night - again I was on my own with Mary in bed and I needed to blot my own thoughts out or rather have them on the perifery where I can think about them but not always feel them.

I still have a living room full of Christmas Craft stuff I'd gotten ready to run workshops with when it all went wrong. The kids and their friends keep randomly making things out of them.

Tuesday I went for my physio/neurology appointment for treatment to do with the head injury. The universe being the universe decided to kick me or attempt to a healiness or something and my physio had chosen that day to announce she was pregnant and going off on maternity leave - not that she needed to announce it what with her little belly.

Then I had to tell her what was wrong and why I hadn't been doing my exercises and why I was having a huge flare up of concussion symptoms. I am not sure who the appointment was harder for but she handled it well and head injury stuff is on a break for a month until I recover from this.

And also it might be aneamia causing alot of the problems so I need to go to my GP and have a review with the head injury team to try and sort things out. I am mucking up numbers again - I ordered the wrong knitting needles that I needed to finish a project off and I order twice as much mega chunky huge wool/yarn to do make Jean's rug with than I need.

But I managed to go for a short walk around the block and to make some food yesterday which is a huge inprovement. This was increadibly important yesterday as they day started pretty roughly with another kick in the teeth from the universe - we have a letter from the hospital for the Dr surgery but I've needed a lot of looking after and there have been alot of things to cancel/book etc... for Alaric to sort out and the up shot is the Dr surgery didn't yet know about me loosing the baby so I get a phone call from a super chirpy midwife congratulating me.

I said. "oh... no"

And obviously they were startled by this - I then explained with my voice getting quieter and higher in pitch. The phone call had woken me up, I had not slept well due to stabbing pains shooting through me. I'd only answered because I thought it would be the person saying the combined ashes had been scattered.

I should have tried to book more bloods then like the physio had told me too but before I could the midwife said she was sorry and didn't know what to say and then said goodbye. I cried. It would have been the day we had the next scan to see if the baby was still growing or was dead so it wouldn't have been a good timing for the phone call what ever.

I'd cried once we left the physio appointment too - I just can't help but think "thank Universe" over this at the moment.

On top of that I am angry at the universe - this means I end up in internet arguments with 50 yr old men who think they know more about the second world war than me. Or that women just plan can't understand strategy etc... Thank goodness my dad doesn't think like this and as he says he's 70!

He's a star and spent an hour on the phone talking to me about military history snippets he'd picked up he thought I might not have heard yet - he is a good distraction - knitting is a good distraction - shame the project is a breast feeding shawl but it was started for this pregnancy or even for me so I think I'm ok with it.

I realise that the two books I was supposed to have out before Christmas are not going to really happen but I have started to prod them a little further towards the finishing line - they were going to be tight anyway and with everything that's happened and me not even really sure of day/week I think it's best to just let the projects complete when they complete.

My inlaws have been wonderful - phoning up from South Africa and Brighton and offering support etc... and friends too - from all the different stages and parts of our lives.

Physically I am getting there (as long as I don't try to do stuff) and emotionally - well I'm a mess but I think that is the healthy thing at this stage - only time will tell on that one.

Can I have Christmas now?

An Outing (by sarah)

Yesterday we attempted a gentle outing - I'd really really wanted to see Paddington 2 and it is one of the few films that the whole family would be happy seeing - I've been waiting for it to come out. Cinema is expensive so it is normally reserved for special occasions.

The cramps have reduced drastically so we thought we'd try it, you can park relatively close to the cinema and it is basically just sitting down and I wanted to do something fun and family.

It was a great outing but... a) I lacked the energy and clean cloths to get dressed in so was in my christmas onsie with a large jumper over the top b) just the walk to the cinema ended with me clinging on to Jean and walking so so slowly - I had to sit down whilst we got tickets and muddlied my food order.

The process of sitting down is also often still painful and I had to take it slowly, I still have a horrible cough and it hurts everything inside so goodness knows what the teen boy next to me thought.

I became light headed and dizzy during the trailers - not sure if that is due to the miscarriage or the head injury and I had to leave the film at one point due to cramps/contractiony things but...

The film was lovely and Jean and I shared pop corn and Mary did her little laugh and ended up snugged on Daddy and I only cried once but it was a happy cry.

It was physically painful and probably not something we should have done but mentally I think we as a family needed it - Mary has been asking for a kitten then getting concerned that it will die before we get it home - Jean snapped at her about this asking why she was obsessed with pets dying like that. Mary paused and said "because of the baby". Yes we haven't hidden this stuff from them - a) I don't think we could have even if we had tried b) it is their family too and this is their grief too.

They both need hugs at the moment (though this did result in both of them managing to hit my stomach and cause a lot of pain which they then both felt bad about :/).

Physically I am in that annoying place of thinking I'm fine whilst semi laying down but crumbling as soon as I try and do anything. Saturday night Alaric cried again - I heard him and came to hug him - we are in separate beds because our bed is broken and not comfy for me and I am still getting the cramps and would keep waking him up and that is not fair as he is doing everything - working, housework, the kids and looking after me and being Al he feels his responsibilities very keenly and so trekked out to the Remembrance Day stuff yesterday morning but felt guilty about leaving me.

He heard me crying yesterday morning and came in to hug me - kind of ironically (or something) I was crying because he'd been crying - I was crying because I was remembering his pain and anguish and I don't want my husband to be hurting like this.

Mainly I like seeing babies and children and though sometimes I cry at specifics I'm finding my friends life shares about baby first smiles and things more healing and happy moments than despair. I did cry at older sisters holding baby dollies sitting next to their younger sibling being held but it was still healing. But social media network bots have gotten hold of the pregnancy thing and not the miscarriage thing and so I am receiving targeted ads for baby and pregnancy stuff - this I find hard and hurtful.

Al has canceled Wednesday's scan - this was the scan to see if the baby was growing. The Early Pregnancy Unit said we can make an appointment and talk to them if needed - right now I would like to stop bleeding and having cramps. It's not heavy but there is still the occasional (small) clot which I don't like.

We've told both schools - Jean was late several times last week and being Jean just wrote down "traffic" in the book for why.

I've kind of lost over a week of time - it was suddenly Sunday and my last coherent day was the Thursday morning before the cough hit bad and the bleeding started, this was not the Thursday just gone. It's all a bit of a jumble.

I'm supposed to go to the hospital for my physio for the head injury tomorrow - I'm not sure there is a lot of point but at the same time I am also not sure really what I am supposed to be doing about all of that as I can't currently do some/most of the exercises :/

Everyone has been amazingly supportive and I know we haven't replied - just overwhelmed at the moment.

Paddington was a good film - me and the girls loved it Al said it was all right. Jean announced she is Jean Pym and likes Computer Games at the end of it 🙂