Thursday 25 November 2010

WOOOOO

I haven't had a TC seizure for a whole week.... enough said!!!

Wednesday 24 November 2010

How much paperwork?!?

After a recent tutorial for my uni project I have been busy collecting every single thing that I can relate to my 'medical journey' which has led to the diagnosis of epilepsy. This ranges from hospital bands to pill packets to letters. 

I cant believe how much stuff I already have... it is CRAZY. And the amount of paperwork I have like letters is unbelievable!! I say that as I'm literally waiting for more appointment letters to arrive... the pile just keeps on growing.

Anywho I've been collecting all this stuff ready for my seminar on Friday. The first seminar in which I will have to explain my project to a group of people and the subject its on... me... scary! I'll show this box of 'stuff ' along with some photographic experimenting I have already done and other research. I can't help but wonder how it will come across and what people will think.
Ironically I missed my first seminar as I was busy actually being diagnosed with epilepsy in a neurology appointment...

Hopefully all will go well and I'll leave wanting to get straight into more work!!  Fingers crossed! :D

X

Sunday 21 November 2010

Photographic Art Trip to Paris

Eiffel Tower from a far wooo!

Paris.

What a beautiful and incredibly interesting city.
Rich with culture and everywhere you seem to look there is something amazing to see! 

I can't possibly write everything that happened and every experience that came around but here are some tiny snippets of our adventure. :)



 Ahhhh Paris Photo. With is HUGE queue which of course we got to skip :D. Paris Photo was one of the main reasons I wanted to take part in the trip so much. I found it AMAZING. I know not everyone who came along agreed but opinions are opinions and each to their own. It was a little bit information overload at times and maybe a tad pretentious in places but wow was it amazing to see some truly fabulous pieces of work from artists who were actually willing to talk about it with you there and then!! Needless to say I felt it was well worth the journey from Newport alone.

Without meaning to sound awful I felt drawn to taking a photograph of this padlock (one of MANY locked to the side of a bridge) Maybe I felt in someway a relation to it.

Hmmmm anyway....

So this was looking down from the top of the Pompidou Centre. It was oddly inspiring to just watch people going somewhere, to do something, each with their own little stories.

The Pomidou is a place you must visit if you are at all into the 'arts' and happen to be visiting Paris. Although it definitely takes a looooong time to get around everything and a lot of energy which unfortunately I was not blessed with either...  


This was taken in the Pompidou Centre I can't really put my finger on exactly why, but this was one of the most eye catching pieces of art I saw the whole trip. So I just thought I'd include a snapshop of it.


 Now here is a particularly frustrating bit. I'm not some alcoholic or in anyway rely on alcohol to 'have a good time' but a social drink with friends is just something I do. Especially being a student! So without really thinking to much into it, on the first night while we were eating in an gorgeously cute Parisian restaurant I decided to try out what France is truly famous for...its WINE! Dun dun dunnnn yep I had a whole two (and maybe a bit more) glasses of wine. (and my goodness was it lovely). I'm not quite stupid enough to have gone on a complete binge drinking session as I normally would have done as I know that really would have meant putting myself at risk of ending up in hospital. Two glasses of wine was something I thought I would be able to handle.

BUT... I ended up having a seizure during the night. Now whether this be because of the really long days travelling we had had that day, the fact I hadn't drank any alcohol at all for about 5 weeks, that it was my first time mixing alcohol with my Medicine (Keppra 500mg per day at that point) or all this combined, was to blame is something I suppose I'll never really find out. Or of course it could have just been a coincidence. Either way it scared me a little. Needless to say I only 'tasted' any wine after that rather than gulp it down :( bad times!!!


Said 'Gorgeously cute Parisian restaurant' called Mouff' tot mouff' tard. I have got to say it was THE most amazing food I have ever tasted. Tucked away up a typical French market street. BLISS. Plus it was FULL of French diners which is always a good sign!!






Ok so its a big city and to travel around by foot to various destinations as we did, requires a great deal of energy. I'm not going to lie it was definitely exhausting. It didn't help that my medicine still makes me feel nauseous well into the afternoon and incredibly tired a lot of the time. I can 'hide' it from most people but one or two including my tutor seem to able to see right through that and offer some encouragement to "Go and take a nap woman!!" I am learning that it doesn't matter what people think. If I need to take it easy then I should its just something I need to get used to. Perfectly highlighted on the final night where everyone went out into the city late at night to quite frankly get pissed. I chose to go back to the hostel and sleep. Which was very very VERY  rubbish but the best thing to do at the time. And I don't regret it.

I'm pretty sure most people had a brilliant time and I am very much one of those people. I am so so glad that I decided to fight the universities decision to not let me attend the trip. It was definitely worth the stress!!
Needless to say I will most definitely be going back again... and again.. 

X

Tuesday 16 November 2010

Paris Tomorrow :)

Sooo with barely any sleep and plenty of stress it has been agreed that I can travel to Paris as originally planned tomorrow. WOOOOOOOOO!!!!

Given that I was given less than ONE DAYS NOTICE to appeal its been a rediculously busy and stressful 24 hours in which I had to literally gather all evidence and fight my case against the universities decision to not let me attend the trip.

Its just silly how something so small escalated into something so big when it really didnt need to. Sometimes it just doesn't matter what job title some people have or the status they may think they gain from it, them being able to accept a few home truths can do a world of wonders. I fully understand and respect that they had to cover themselves against any claims that might have arrisen but what right does that give them to dictate what someone can and cannot do in their lives. Especially without them knowing the full facts and details. I'm not stupid. I know my limits and I know my condition. I would not put my self at any uneeded risk (and quite frankly embarrasment) if I didn't need to. I know that all it takes is a little bit extra preparation for example extra medicine and a french first aid card. Done. No big deal.

If someone had at least attempted to speak with ME in person about MY epilepsy and MY feelings on the situation then there simply would not have been such a massive deal. <--- Case proved.

Anyway whats done is done with some careful arguements and with some brilliant friends and members of staff behind me offering their invaluable support, all has been resolved.

I think its safe to say that lessons will have been learnt and this will hopefully be reflected on decisions made in regard to students with similiar circumstances in the future. :)

What more could I ask for.

YAAAAAAY PARIS!!!!! :D

Monday 15 November 2010

Waiting for the verdict

Today came one of my first real slaps to the face from Epilepsy.
 
I might not be able to go to Paris with my course.

When I say Paris I mean a course trip that I have been looking forward to for a LONG time. Its a brilliant opportunity to see the sights of a beautiful city with some of my closest friends. And a chance to go to Paris Photo 2010 an experience I imagine to be AMAZING.

As I type I'm sat literally waiting for the verdict. Yes I can go OR no I can't. Obviously with all my heart i'm hoping for a yes.

See the problem is... where I would have normally been covered by the universities travel insurance now I have this epilepsy thing hanging over me things have changed. The university are trying to decide whether I can be covered under the policy and join my fellow course mates. There have been 'meetings', 'conversations' 'phone calls' etc etc etc about the whole situation. But strangely and INCREDIBLY frustratingly I have barely been told anything. I understand its all VERY last minute but its not exactly something I could have planned!!! Just to be at least informed as to what has been said so far in these 'meetings' would mean the world right now. I wont go into to many details on such an 'official' subject but WOW is it stressful. I mean we are supposed to be going this WEDNESDAY morning... its now Monday night and I still havent heard a peep!!!

PLEASE JUST TELL ME YES OR NO!!!!

A simple trip to Cardiff..


Who knew a trip to Cardiff could be so tense. Ok so it didn’t dawn on me until I was about to step outside the front door to the house... I was about to catch a bus and train to Cardiff. ALONE.
It would usually have only about an hour of travelling but that hour turns into a VERY long time to be travelling alone when you’ve not had a seizure for a few days...! 

The arrival of a friend meeting me in Cardiff turned out to be a God send. It surprised me actually how relieved I felt. All my worrying went straight to the back of my mind (trust me you can’t just forget about it completely) and the SHOPPING could commence :D!! 

All is well though as nothing happened waaaaay! Well I say nothing happened... I did ‘accidently’ buy some very pretty things spending a little bit too much money...
OH and the fact I did actually forget to take my medicine this morning only realising on the train back to Newport.. giving myself a mini heart attack and resulting in a quick dash to the buffet carriage and spending a million pounds on a bottle of water :/ 

So other than that slight mishap I conclude that this whole retail therapy thing is BRILLIANT!! :D

Saturday 13 November 2010

One thing I REALLY do miss!!

DRIVING!!!!
 Urgh I can't even begin to say how much I miss driving. Anyone who really knows me will tell you I might be a little bit obsessed with driving and cars... It's a massive part of my life!!!


This is my baby!! Honestly I LOVE IT. My Golf. I have ALWAYS wanted one ever since I began learning about cars... (and with being brought up by my dad who just so happened to be a mechanic) that was a pretty early age.


My not so faithful first car was a Fiat Punto mk1 ohhh yeahhh thats right it was a thing of beauty :/ ... Anyway after driving it around for four years patching it up as it fell apart (THANK YOU dad for the amount of hours you spent fixing it you deserve a medal!!!)  it finally gave up the ghost by deciding to literally disintegrate in the fast lane on a busy M6 on a VERY hot summers day... half way through a 200 mile journey NOT. COOL. (Fair does though what I would have done without it is beyond me RIP old friend!)

So after years of working my ass off saving the pennies and putting up with the Punto this summer I FINALLY bought a Golf. I of course turned into a complete child for a few days and got stupidly excited (I mean after all it is only a car..) My little dream had come true... HA lame!! (But true.. :D) 

So here I am driving around, living my life as normal (mainly working... to pay for the fuel...) and then BOOM. I start to have what I thought were just 'black outs' WRONG! So yep it goes with out saying really, for the foreseeable future (12 months after the last seizure) I am no longer allowed to drive.

I AM BEYOND GUTTED!!!!! Yes BIG SIGH as my beautiful car now has to sit on my mums farm looking all lonely and sad wishing it could be driven... *tear*

BUUUUUT its not all bad because.... wait for it...... I GET A FREE BUS PASS!!!! GET.IN.

Ha so yes that little rant came about after getting a text from a friend who I wish I could go and fetch from the train station because, by the sounds of it, she is currently enduring a nightmare of a train journey.. which unfortunately will have to be followed by either a bus journey (which involves walking halfway across Newport with a load of luggage on a Saturday night..) or an uber expensive taxi fare. You know I would if I could lovely!!!

The end :) X

How my epilepsy showed it face!


Excuse the essay...

 Just over a week ago I was diagnosed with epilepsy. It started when at the end of August I found myself out in the garden at the bottom of some steps freezing cold with cuts and scrapes all down me finished off with a big knock to the head. (Trust me it was BEAUTIFUL...!) Looking back I probably should have got myself to hospital but I didn’t. 

Then in the following weeks as I just carried on working my ass off allllll summer a few different people on different occasions told me that I had just stopped talking or paying attention mid conversation as if I’d just got bored with was being said then carried on talking a moment later. I didn’t really think anything of it until it happened when I was talking with my boss (someone I really didn’t want to annoy). So after bringing it up with a close friend only for her to say that she too had noticed that I wasn’t acting quite like my normal self off I went to see a GP. Obviously freaking out that I’d damaged my brain or something!!! I explained my story and that I had fallen a few weeks previous and knocked my head. I had immediate blood tests and an ECG. Only to be told a few days later that they were clear and I had been referred to a neurologist. It was a very long wait to say the least and in the seven weeks it took to see the neurologist I “found myself on the floor” a further seven times increasing with frequency. Two of those times I ended up in A+E at the request of my GP and a university nurse because I had hit my head. More tests were carried out while I was in hospital including more ECG’s bloods, urine (lovely) and a chest X-ray... not too sure why on the X-ray but hey..! Again all clear.  And just for future reference there is a surprising amount of fun to be had in A+E depending on the staff that are looking after you *THANK YOU* and once your conscious of course...(this helps) 

 Anyway frustratingly none of these ‘episodes’ have been witnessed! I seem to have impeccable timing when it comes to them happening when I’m alone. Well accept from the absences. But then the only way I know that has happened is when I suddenly realised the person I’m talking to IS looking at me like I’ve just turned into an alien... 

Anywho I went to see a neurologist and after her taking a history and having an exam was told I had epilepsy. I am now waiting for an EEG and MRI to try to figure what’s causing it and rule out anything that may be lurking. They have put me on some lovely medicine called Keppra and I am currently on 500 mg per day for the next week and upping the dose as the weeks go on. It messes with you.

Sooo that’s just how it is for now... it’s all VERY VERY strange for the moment, and the ‘seizures’ (still wierd saying that) just keep on coming. Delightful.