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.
Thu 5th Jan 2017 10:12 am 
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