Category: Other

Angry with the Universe (by )

My life in general is awesome - I have plenty of work, my kids (bar trying to get Mary to brush her teeth or do her homework) are fab, and we have a lovely kitchen and bathroom about to be finished off. We are not struggling for food or cloths or shelter and I have lots of books and music and films and games....

But there are several things that are killing the joy and which have apparently closed off any emotion in me other than rage.

One is mental health attitudes and and cuts to the nhs which I now believe is costing lives and not just random lives that I can only extrapolate about. But people we know and those shining stars so full of grace and wonder and pain are now gone. They leave the world a dirtier mucker place, and they are multiple and they're suffering was extreme and yes there is anger there as well.

Another is general politics and how I see it already impinging on the world around me in direct and tangible ways - the increase in the homeless and the need for food banks, the street litter and piles of stinking rubbish that build up as the infrastructure is failing due to under funding. Again lives will be lost with both these things and that angers me, they are needlessly thrown away.

Tolerance and understanding are being kicked in the teeth and all that human and equal rights stuff. Once I thought I was being talked down too because I was young, then I thought it was because I was fat and using a walking stick or wheelchair, now I realise it's because I am a woman because it hasn't bloody well gone away regardless of size or fitness or age.

But mostly at the moment my heart is broken and doesn't seem to be at all interested in even trying to heal - because I have just spent weeks in a lot of pain and bleeding and loosing smelly gunk, not knowing if the baby was dead, dying or now rotten within or what order it would decide to do those things in. I was petrified that it would go the same way as before and that I would find myself fighting for my life in A&E.

Friday we got the definitive answer and there was no longer a viable pregnancy - in fact there was no longer a pregnancy at all. At least I didn't have to deliver a placenta the size of a small baby this time and haven't ended up incapacitated. But it does leave me with a worse mental shift - last time I was so ill and it was so sudden and we had been so excited and hopeful that it seemed natural to be devastated and upset and weak and wobbly - I don't know how to react to this one.

It was a lot earlier and I knew I was in the danger zone still and I couldn't bare to hope, and when they did the emergency scan I knew that it was over then - but I still had weeks of trying not to hope of trying not to think of weather it was alive or dead or rotting.

Weeks of it being treated as a viable pregnancy with no options given to call it quits - I will go through high water and hell for a maybe baby but I need to be given the choice because then I am a warrior and not a slave.

I had to call in some friends to help look after me as Alaric was away with Jean that first weekend, they were the only people outside my parents and brother who knew - I couldn't bare to say what was wrong. And some who helped out didn't even know as I just labelled it as medical problems.

My friends all went above and beyond in their help and support - once again I was struck by how truly lucky I am.

I've been assured that I'm not too old and that there is still a good chance to have a baby - due to the ectopic I had before I can now self refer to the hospital without having to faff via the GP about pregnancy but I need blood tests just to check things like my B12/folate levels and blood clotting - both things that have been issues for me in the past. But the policy is that you have to have had 3 miscarriages in a row but I don't want to do it like that if I am loosing them because I just need some B12 injections I just want the blooming B12 injections.

I fear it is my stupid blood group and I'm not sure what they can do about that - I was allergic to Jean but Mary is the same blood group as me.

The baby had implanted very low down. I didn't bleed out like before and I am hoping to avoid another op - the scan suggest that I should be fine.

In fact the scans show that my left ovary and tube etc... look fine - this was news to me as they were mullard but appear to have repaired themselves. That is good news.

I am clinging to such things and my work and my kids - I am a She Wolf defending her cubs at the moment - regardless of the fact that one of them is bigger than me - I am also sure I am hen pecking and trying to look after them too much. I am being snappish and curt with people and yes I am angry - very very angry and it is pretty much the only emotion I can feel at the moment.

Sorrows appear to piling up on my friends and family and so I haven't made this as public as I was going to to highlight issues around miscarriage because I didn't want to pour more sorrow onto them.

I haven't yet cried over this - that is not a good thing - I now it's not a good things but I can't feel it. Bizarrely when I am out and about I appear cheerful and happy - but I am not - I feel like there is a dark whole inside sucking everything in.

I barraged the medical professionals with questions on what could I do differently and there is nothing. I'm looking to see if I can pay to have the bloods done and that makes me angry too because if this had been us when we were having Jean that would not have been an option and it means poorer people are already risking life and womb.

Health, Weight and Emotions (by )

At the weekend I went to put on my pirate outfit - I was going to be a purple steam punk pirate because lets face what other sort of pirate am I likely to be?

But the skirt didn't fit - the skirt DID NOT fit and not by a little bit. I am aware that I am putting on weight again, I am very aware of it. I'm also not really sure what to do about it. It has been constant since the miscarriage which was in November - I am still spotty, and my hair is going grey - as if it switched something in me. To be fair I had grey hair before when I was struggling to get pregnant with Mary - when I had the suspected ectopic. That grey hair went away - but this lot I'm not sure will - I am creeping towards the big 40 for a start and I am growing a beard - again this is something that has been happening since I had Mary when they put me on the hormone stuff to try and stop the bleeding but now it's got a little ridiculous.

And I have crow lines - again these have come and gone in the past but I am feeling shit - my hair is broken - not only is there grey but it is not curly - not properly curly - it isn't bouncing back like it always does. People keep saying it's still curly but it is more what I'd call wavey. And on top of all that I am having to use the stupid damn walking stick far too much - I just can't seem to ditch it due to the slice and ache of pelvic pain.

But though it feels rubbish I've also been here before - I am pretty sure I can pull myself back together more than I am and hey! My periods are really light now! And the head injury stuff is being managed well. I need to do something about the diet again I think but the lady that dealt with all that had her position axed from the nhs so is not there for me to check in with. I haven't even dared get on the scales. (Do not suggest Slimming World or Weight Watchers to me -- they work for some people but for me they are hell in a handcart and I spend all my time brimming with intense hatred for the entire human race when in such groups).

I kind of have a plan.... I am about to break the 3000 km barrier on my exercise bike - it took me two years to breach the first 1000 km, 1 year for the second 1000 km and this will have been about 6 months for the third lot of 1000 km - I reckon that even though I am over weight that means my general fitness has still been improving. When I started I was doing 20 mins max and it hurt - now I easily do two hours without noticing. So I will actively aim to halve that time again and the gamification of walking worked really well for me last time but now the pedometer is broken and my phone is old and knackered - so I need a new phone and I plan to finally be able to play Pokemon Go which has never worked on any of our tech.

Also the thing about the walking stick... it is there so that I can walk and that is what I do and I want to do more of that and I am a little bored with walking into town but I've worked out a route to Robinswood Hill which is a similar distance and I am doing lot of poetry walks which I tweet - I used to do this straight from my phone before the head injury but again old phone is a broken phone :/

I am still experiencing horrendous muscle cramps which I think is the anaemia - I probably need to go back to the doctor but find that a really depressing thought. But I basically can't do my pull ups or weights whilst the muscles are being like this and have had to stop my bike stuff in order to deal with my foot testing up. I have seriously had nothing like this except during Jean's pregnancy when I had to drink bloody tonic water.

Of course it would probably just be easier to go on the 1000 cal a day thing again but we've only just got our kitchen back (yay no more take aways) and Alaric is enthusiastically cooking EVERYTHING so though I will do that if things don't improve I don't think that is going to be doable in the next few weeks - of course having lived six weeks off of take aways and restaurant meals probably hasn't helped the weight situation even if I was trying to be good about no desserts event when they come with the meal etc...

If anyone else has any good ideas of where to walk and of games to get you walking then please share 🙂

Hats For Headway (by )

So this is a thing, I didn't know it was a thing - I probably did but then forgot :/ But get your fancy head gear out!

knitted brain hat

Today is #HatsforHeadway to raise awareness and cash for an absolutely brilliant charity who have helped so much with people like me who have sustained head injuries. This is the hat I knitted for the Science Showoff on Neurology and brainy things special that they did. It was a wonderful evening with Dr Carina Fearnley a fellow head injury sufferer and friend from my Geology undergraduate days. She has made a fantastic video about her experience:

The event was at the Star of Kings in London but I believe was raising money for the Bristol Headway and I made a paper mache brain and got gummy brain sweets. The hat has since appeared at various British Science Week Events, Cheltenham Science Festival and BBC Country File Live show/festival. It was an amazing night were I learnt about all sorts of things including the medical skeletons etc... lurking beneath London and what their skulls can tell us!

What I didn't say at the time was that I was struggling with knitting due to the damage to my left hand side so this whole thing was create out of loom knitting (French knitting or knitting nancy/spool knitting are all mini looms). Also for me to actually make it to the gig my dad had to come and meet me at the station - which in your 30's is pretty embarrassing, but I have only recently been able to attempt travel on my own on that sort of scale and I was still unable to cook anything other than a microwave meal safely on my own (I've set fire to pans and tried to pick up boiling pots with my bare hands...).

There is currently an Art Exhibit and series of talks etc... at Kings College about head injury including a pice on Identity after the fact. I myself had to basically learn to draw again - I always drew with both hands but now... the pictures come out distorted - I have a blind spot in my left eye, and hand coordination was hard. Add in the crisis of everyone else knowing more about me than I myself did and I ended up producing Love: A Stranger Dream. It started as distinct pictures which people asked for as colouring sheets so I put them up for free download here. Then I realised there was a kind of non-linear narrative or themes running through the works and it became a book of visual poetry. I took refuge in art - something that is quiet important in developing coping mechanisms and reducing the amount of depression that head injury victims feel - it is like having everything that is you stripped away.

I even made audio.

And video of it.

Art that started as a way to just express myself when speech and writing where hard graft ended up as something that has helped friends, it explores lots of different aspects of identity and so has ended up at GLBT+ events, dis/different-ability events, music and art installations, two different events for International Women's Day, comic book conventions, poetry events, story telling and maze festivals. I've even made a dress from the art work 0.o - ok yeah I got carried away!

(can't find the photo - if I came across it I'll add it later! but it got compared to the stuff worn by the Welsh Eisteddfod singer/bardic peeps)

As I've probably bored everyone with - I have not long been discharged from the head injury unit including physio at Gloucester Royal - still under neurology but the main chunk of it is done. Charities like Headway - the brain injury association are an absolute life line and they have local branches but head injury sufferers often struggle to get the help that's needed especially as most of the time they still look "normal". I was being mistaken for being drunk and struggling with lots of things. So yeah - hats for headway 🙂

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

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 )

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.

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