One day of serious ups and downs.

I've been pretty shattered today and somewhat lacking in energy but given the day I had yesterday I can't say I'm surprised. Bit of an emotional roller coaster shall we say.

It started with a relatively early start of 7am with a trip to the job centre for 9 urgh. I've never been before and it was strange having to apply for some benefits to help me while I try to find a job. I've had a job from the second I left school and not having an income is an incredibly uncomfortable feeling. But trying to find a job that has to fit around sleep patterns, getting 'ill' at a moments notice and the possibility of ending up on the floor at ANY given time while on the job amongst looking like I'm ignoring people I might be dealing with if I were to have an absence seizure is no easy task. Even though I specifically told them that I had uncontrolled epilepsy over the phone they still gave me an appointment with a regular advisor who was not informed I had epilepsy so had no idea what I was talking about when I started discussing factors I had to place a job around like sleep patterns (how embarrassing..) So now I have to wait to see another advisor who specialises in disability and employment. It's another little set back but only a little one so for now I'll just keep looking for jobs until I see them in about 2 weeks.

Anywho in preparation for my job centre appointment I had to show my bank statements now I hadn't checked these in a while to be honest and was very shocked to find that I had some money in there that I really wasn't expecting to see. It was some bursary money from the university that had been paid in at the beginning of May.Two months after I'd left university... So obviously the money isn't mine (as much as I appreciate the gesture!!) so as soon as I got back from town I went straight up to university to see the people in finance to tell them that they'd given me some money that wasn't for me because I was currently on interruption of studies. But when she checked the system it said I was still studying full time and told me to go and see Data Services to see why it wasn't showing up on the system. So I did and guess what... there was NOTHING on the system to say that I had left. I can't even put into words the plain anger that just shot straight through me. Now I have this lump of money that isn't mine sitting in my bank account being counted against me in terms of financial support I might be able to get from else where PLUS my student loan application for next year is going to buggered up entirely because the loan company don't have confirmation from the university that I'm not attending anymore. I won't go to far into details as to be honest I can feel myself getting angry again just thinking about it. As my mum (who I well and truly vented to over the phone while storming off campus) quite rightly pointed out this is the problem with large systems. No one ever seems to take into consideration the effects it has one the person the whole thing centres around. I was far from impressed and I'll leave it at that.

Luckily I'd had the chance to calm down a little before the gas service people turned up to check the house. So as the gas men pottered around with the boiler in my room watched over by the land lady, my housemate and I, the conversation turned to hamsters... as you do.. and it was with this conversation that I discovered you can bath hamsters!!! HOW I didn't know this I don't know but I am definitely going to see if she likes it.. hehe she'll either love it or hate it! Apologies in advance Sesame.. :) This made me feel happier again I love when random chats bring up things like that make way for a little smiling. 

But just when I was feeling a bit better I had a call from the hospital regarding the  running incident I encountered a couple of weeks ago. On top of that I've had other weird symptoms that are worrying me slightly. Any who after speaking with her for a while she advised that I go and see my doctor ASAP. As what I described is very unlikely to be anything to do with the 2000mg per day of Keppra I'm currently on. I really don't need something else to be wrong :( I haven't been for a run since. To be honest I'm to scared too! But given that I'm running the race for life at the end of June I will back into it VERY soon and just hope that I don't end up getting ill again. So now I have a doctors appointment for wait for it... the 26th of may!!!! How long of a wait is that!?

Later in the evening I went over to Cardiff to an art auction and print sale being held by the third year students of photographic art. It was a lovely event in a awesome venue and from what I saw I think a good success in raising funds for their graduating publication. It was weird though being amongst the hustle and bustle of an event that I was supposed to be a part of as a student. Watching the people I've spent the past few years studying with busy preparing for their finishing university knowing I was supposed to be with them was surprisingly hard to deal with. Of course though it was good to see them cracking on with everything amongst the stress of imminent final assessments and graduation show and I wish them all the very best :) It was nice to see everyone and chat but a very bitter sweet feeling. One of tutors came over to have a chat with me though which was nice :) It was nice to talk about starting university again in a postitive manner. As far and she and I are concerned it's happening. I will get some more control over siezures and their effects and it will happen. :D

Then last night I had a rubbish nights sleep. Nightmare after nightmare. A response to such rapid changes in mood. :( Ahh well better look on the bright side nightmares are far better than seizures!

I commend anyone for reading all of that ramble!

X

Wobbly start to an arty day.

Today I started some volunteering as an invigilator with Open Empty Spaces on an art project called Kiosk. Created by artists Jeff Pigott and Julia Warin.

You can find out more information on the project, the work and the artists by following these links:

Open Empty Spaces

www.artspark.net

Kiosk

I had a lovely day chatting to and meeting various people, nosing around the art piece itself (there is a lot to take in!) and just generally people watching... a busy market place is a really good place for that!  There were a good amount of people interested in the work too which was brilliant to see and it was great to sit and listen to the Co-curator giving an interview with a BBC journalist! Exciting!

BBC images

www.bbc.co.uk/news - Article on work 

Cue a cheesy photo of one happy me :

I'm just lending a hand on a few days until the end of the month. But it is so nice to be back in touch with some arty happenings :) since stopping university earlier this year it's been a bit of a struggle to keep up with all things arty. Obviously I have more time on my hands so any opportunity to help out with and visit various exhibitions and projects is a awesome way to keep my head in the game and absorb all the goodness that comes with it. 

Although to be honest I didn't think I was going to get there... I woke up perfectly fine at 7:25 to my alarm but once I stood up out of bed I straight away felt really wobbly. As in my balance was all over the place. It's a horrible fuzzy feeling kind of like a hangover with absolutely no energy. I showered hoping I wouldn't fall over.. and had to prop myself up while sorting my hair. Bad times. But after some breakfast and a nice cup of green tea by the time I'd walked to the bus stop I felt much better :) Doesn't stop the constant nagging thoughts of what if? what if? WHAT IF!? Especially as I new I was going to be spending a lot of the day alone in a place I'm not particularly familiar with. But my day is almost complete with out any major hitches :D

Right time for an early night with an attempt at some reading :) I'll leave you with this quote that I found within the work.

Busy days and sneaking into lectures.

It's been a pretty hectic few days... 

All of a sudden it seems that I have a million an one things to do/sort out. I have a pile of forms half filled out, letters to send, collections of paperwork that need organising for various appointments I've got coming  up all amongst having places to be and people to see. 

NOT that I'm complaining it's nice to have things to do albeit very tiring!

I'm glad I have the most of it done. I don't like it when things get to hectic and disorganised. I NEED things to be as simple and organised as can be nowadays to help keep away to much confusion and stress. Calm environment makes for a calm mind. :)

My diary is now completely up to date thank goodness although there seems to be something new to add to it everyday! Which is good I suppose it's good to keep busy sometimes just not ALL the time!

I start some volunteer work with a art project tomorrow which lasts for a month woop! I'm a little nervous as I'm basically being trusted to open up the exhibition talk with visitors and close down at the end of each of my shifts. ON MY OWN!!! All  I can think is "but what if I have a seizure?!?!" A friend of mine is coming along with me for a couple of hours tomorrow though which will be nice :) eases my nerves a little!

Anywho I also snuck into a pretty interesting lecture on performing photography by Dr Paul Jeff. It was incredibly interesting and the intellectual standard was incredibly high!  Which I have to be honest and say that the most of it went straight over the top of my head. We did watch a very thought provoking piece of his work motion piece in that it was a series of images in a particular order shown on the screen along with a stunning and somewhat intense soundtrack.

"Devised and performed by Maria Sanchez Portillo, Paul Jeff, and Emanuela Contini. Made as a response to the continuing abduction and murder of young women in N.Mexico"

I Watched Her until She Disappeared

I will definitely be researching this work in the future and the idea of performed photography as there was something through the whole of what was said that kept me gripped. I feel maybe this is trying to grasp at an area of research through my own work. It will take some serious mind power though so all in good time...

X 

Pretty Purchases :)

Soooo I'll call it retail therapy to make me feel better... I went shopping accidentally (on purpose..) and ended up buying quite a few pretty little things...

 

To be fair nothing cost full price which I thought was a minor miracle in itself! The dress was needed for a wedding I have coming up, I always need a notebook hanging around and this one was just so pretty I couldn't just leave it sitting there.. and how could I possibly resist the cushion?? It's gorgeous, a friend I was snooping around the shops with pointed it out briefly and bam that was that I couldn't leave it alone and after a brief moment deciding it left with me :D

 Plus I've also got a 'single use' camera on it's way in the post. I've got a massive urge for some experimenting with a simple point and shoot camera. So thought I'd buy the cheapest one I could find to see how it turns out. I can't wait for it to arrive so I can get snapping. I'll post some results good or bad in good time!

I think it's time for me to leave my purse alone for a while... :D X

MRI booked

Things really do seem to be rolling finally in terms of hospital appointments.  After my appointment for my long awaited EEG came through a few days ago a letter came through the post yesterday informing me I have an appointment for an MRI on the 14th of June. I had my first full on Tonic-Clonic seizure waaaay back in August and far to many to even think about since then so it's been a fair old nerve wrecking wait!

I'm not going to lie this makes me nervous. So I'm not going to write to long a post on it. I'm having a "time to sort my life out a bit" weekend and I don't want to distract myself to much with wondering and worrying. 

It is strange to finally have a date set for my head to be passed through a massive, scary looking, loud banging, scanning machine... Ahhh the joys. I've had one before for my wrists and that was scary enough I dread to think what it's going to be like having one of my brain! I also learnt from last time to take MY OWN music!! At least then I can lie back and try my hardest to imagine myself somewhere else with my own choice of music rather than actually finding it more satisfying listening to the awful sounds of the MRI thingy like last time. Sorry Dido but you really don't do it for me!

Enough said, time to carry on sorting through waaaay to much paperwork for one person...
Cheerio!

Listening to the rain

It's warm here tonight or 'close' as some might say. I think there might be storm brewing actually. It's raining too. I'm very tired after a long but nice couple of days but if I go to sleep now I'll wake up at some rediculous early hour in the morning and screw up my sleep pattern. So I'm currently lying on my bed, with the hamster running around the room occasionally climbing over me, a book which I will have a little read of shortly by my side, my laptop propped up on my other side and the window right next to my bed open so I can listen to the rain as it falls. There is something so theraputic about listening to rainpour. I suppose it's the sound of cleansing and fresh smell that seems to follow shortly behind. I like the little things like that. They seem to make everything feel a little more relaxed. Simple almost. I'm hoping the temperature stays reasonably warm for the night and I'll keep my window open so I can carry on listening as I fall asleep and let the cool breeze flow around. Maybe I'll sleep a little deeper tonight. I hope so :) 

It's nearly 9pm now, It's going to be a struggle to stay awake much longer. You know when your eyes feel so heavy you feel there is nothing you can do will keep them open? The relief when you finally let them shut though is lovely! 

I'll try to read a little more then sleep for what I feel like could be days. 

Goodnight :)

A run in with the floor.

Basically I had a full blown Tonic-Clonic during the night, last night. All I know is that I woke up on the floor at some point in the night while it was pitch black outside, having fallen out of bed, with a thumping headache, a bump on the side of my head and a sore tongue where I'd bitten it. That and my muscles ache A LOT today. Boooo! I've never bit my tongue during a seizure before so that's a new experience..fun fun! I do tend to chew the insides of my cheeks during absence seizures though I have scars to prove it... NICE! 

But something very painful and rather bizarre happened earlier in the evening. I had quite a lot of energy compared to usual so thought it would be a good idea to go for a quick run. Nothing to strenuous just to the next village and back. But on the way back I suddenly had really sharp pains in my abdomen. It literally felt like I had been stabbed straight through my lower back into the front. HORRIBLE. I had to walk back to the house which turned out to be the most painful walk ever. Eventually I got back grabbed a glass of water and practically crawled into my housemates room. By this time I could barely stand and the pain felt so awful I couldn't sit, stand, lie or anything without these (what I assume were) cramps constantly shooting through me. To be honest it was really hard not to just cry! It was all just so strange I was red hot, sweating and shaking like a leaf! But after maybe 25 mins with the time it took me to walk home the pain started to ease off. Until I was just left with a minor stomach ache. If the pain had lasted much longer I think a trip to the hospital would have been in order! Never felt pain like that before. I had the shakes for a good couple of hours afterwards and my stomach still aches a little today if I twist my body but other than that I feel perfectly fine... question is WHAT HAPPENED?? I also decided to have a mini asthma attack. I've not had one of those for a long long time. Although when I told a friend later who also happens to be a medical student, they suggested it might have been from panic. Who knows. Inhaler did it's job though so no complaints there.

I think maybe my seizure may have been a reaction to what ever happened during the evening. Maybe. 

Anyway seizure wise today I didn't feel as rubbish as I normally do after a seizure apart from a little headache, achy muscles and a bit sleepy so as I had things to do went about my day. Went to arrange to see someone about this mountain of student loan forms I have on my desk, popped to the pharmacy to hand back medicine that I had left over from increasing doses, and even braved buying a novel and took a nice long lie down of course!

I will definitely be getting a good long nights sleep tonight! :)