Monday 27 December 2010

Time with Family. (mini essay!)

For those that don't know I have two families (Mums and Dads) who I visit when on holidays from uni etc. I split my time between them both and have done for years!! 

I was living with my dad for the summer when I started having the episodes of "finding myself on the floor" and absences. But it wasn't until I'd been back at university for a couple of months that I was diagnosed with Epilepsy. And other than when I went to stay with my mum for a few days when I went to see the neurologist, I haven't spent any time with any family since being diagnosed. Until now. At the moment I'm staying at my mums for a week for Christmas. I must say it's strange. On the surface it's like nothing has changed but theres just a feeling that it's just not the same. It's a hard one to explain unless your in the situation yourself... but I suppose its like they are always sort of watching/waiting for me to have a seizure much like myself really so it's not really normal and 100% relaxed if that makes any sense.. but hey it's very nice to be back for a while though. :D

But unfortunatly I have noticed something thats put a little bit of downer on things. I thought I was beginning to get over the extreme tiredness that came along as a side affect of the Keppra because I had a couple of weeks where I didn't seem to feel so tired during the day and sometimes even not tired at all!! (AMAZING for me!) But I've started to get very tired very easily again, over last week I have just been feeling exhausted! I don't think I've done anything in particular to make myself so energyless. I mean ok so it is a farm so theres plenty of tasks to do like mucking out etc but it's not like im trying to do the lot myself! It is bothering me because trying to keep up with my family is near on impossible at the moment so I feel kind of rubbish when I have to go and 'do nothin' for a while. BUT I'll get over it :)

Anyway it has been a great to see my family and we've had a good christmas!! Albeit an eventful one... we have had no heating in up to -20 temperatures since I've been here, no electricity for a lot of the time although by some miracle it stayed on for all of Christmas day.. come Boxing day it was gone again though and then in the early  hours of this morning I was woken by my family running around the house in the pitch black trying to remember where the stopcock was to turn the water mains off as the main pipe burst resulting in a somewhat soaked house!

I will be going to stay at my dads tomorrow for a week for New Year. Like I said I haven't seen my dad and that side of my family in person since starting back at uni back at the beginning of October before being diagnosed in November. So we havent really had the chance to talk about it all properly... could be interesting...

Theres already been one problem... how to get me and my luggage from my mums who lives in the middle of nowhere to my dads who also lives in the middle of nowhere. No public transport is available (trust me I'd get a train if it was at all possible/worth it I hate the idea of putting other people  out to do things for me). So obvious answer is by car. Then there's the questions would my mum take me to my dads? or would dad come and pick me up from mums? or would they meet half way. But then my mum had to also take my sister back to where she lives and me back to uni at some point so it would be fairer for  my dad to come and pick me up and blah blah blahhhhh basically its all confusing and rubbish and my parents havent been face to face with each other for years which proves a little dilemma in itself!

I can't help but feel bad and if im totally honest like a little child. I gripped hold of any independence as soon as I was old enough and the chance arrived. and I stayed holding tight to it up until when I found out I had epilepsy. If anything this one little dilemma just highlights how much independence has just vanished over night. It's made me feel somewhat uncomfortable with the future.

 Anyway despite the glumness I am really looking forward to staying at my dads from tomorrow as I'll get to see the other family members and old friends :D woooooooooo AND party for New Year (I can't even begin to say how much I need a good session with friends!!!)

XX

Saturday 25 December 2010

Merry Christmas!!

Merry Christmas everyone :D

I hope you've all enjoyed yourselves, spent time with those you love, eaten far to much, Santa was good to you and you've generally had an brilliant day...

All the best my lovelies :)

Jade XX

Monday 20 December 2010

NSE Awareness :)

http://www.epilepsysociety.org.uk/Homepage 



 Just spreading a bit of awareness of this organisation :) They have been a big help to me and to plenty of others I am very sure!!







XX

Thursday 16 December 2010

The most amazing nap :)

Ok so I just read over my last couple of posts and they sound a bit, I dont know, "strong"? 
So on a lighter note time for a photograph of my little cutie:


And I would like to announce that I just had the most epic nap ever. I've woken up feeling not in the least bit tired. WHICH IS AMAZING!!! I feel like I could go for a run or something! 

I sleep a lot lately. A lot for me is a whole nights sleep maybe up to 10 hours sometimes more without waking up. This I can't remember doing for a long long time. Since I was about 12 I always had trouble with sleeping through a whole night.  But despite getting a good amount of sleep I still need to nap during the day and sometimes just one lecture at uni wipes me completely out. I think its the Keppra. I'm up to my full dose  for now (1000mg per day) I have been for a while but I suppose its just a case of getting used to it :)

Anyway this makes the nap I've just woken up from so good!! Well I say nap... I said to myself that I would just lie down for 20 mins to try and refresh my brain a bit ready to read later. Yeahhhh 20 minutes turned into 3 hours... But wow did it do its job. I can safely say I am not tired!!

I know it doesn't exactly sound that amazing I mean its just a nap... but it's the little things that count :D

OOOO I feel some photography coming on so I'd better get cracking!!

 XX

Monday 13 December 2010

Time.

I had a doctors appointment today. Not because I'm ill but because I had a whole list of questions! 

The main one being: Whats causing my memory and concentration to go so haywire... the medicine or the seizures? 
He said it's more likely to be the medicine because inbetween seizures you should pretty much return to your normal state, but it could well be something completely unrelated... only time will tell.  Thats all fine and I fully understand that with something like this time is a major part in getting the correct dosage etc and to begin to regain complete control of every aspect.  
But the problem is I don't really have that much time when it comes to university work. I can't even begin to explain how much it affects my studying. Maybe  a good way to put it is, I feel like I have to re-learn how to study effectively. Just little things like read in a way that allows me to actually absorb information which atm seems like a distinct impossibility! And when it comes to explaining things like project ideas to people its like everything just flies out the window even when I know, I know what to say... if that makes any sense.. I find it VERY difficult to re-call the simplest bits of information. You can say something to me and ask me to repeat it just moments later and wooosh its gone!! 
Now this is the dreaded question that I have been asked in various different ways by various different people in uni: Have I thought about deferring this academic year and restarting in September?
Its just keeps flying through my brain again and again and the truth is I never have a good answer to give because I simply dont know!! Again and incredibly frustratingly it goes back to the "only time will tell" thing... great..

Anywaaaaay after that little rant...
The doctor was epically cheery :D especially for early on a Monday morning!! He seemed perfectly happy to answer my million questions :) (It felt a bit wierd going to the doctors just to ask questions though..but hey who else am I supposed to ask?)
It's funny how a few words of wisdom along with a big smile can make everything seem so much better.

So big smiles for the rest of the day :D

And to carry the positivity on...

I recieved a little bit more freedom today :) Yep my railcard finally arrived. Woooop!

It's a strange feeling the first thing I thought was "well at least I'm saving money on fuel".

That is something I never thought I'd say!!







Anyway to end that  post which I didn't really intend to be so long... 
I'm due to see another neurologist in the New Year... scary but good news!

XX

Sunday 12 December 2010

My Other Self.

Aside from my project work from I've also been working on some photography about my experience of Epilepsy itself. For now I'm going to use the title My Other Self. If anything its to say that this is something that I cannot control and one of the ways that a tutor and I talked about was how it's like I'm taken over by something. That something takes control of my entire body and tells it to act a certain way, for a certain amount of time, without my actual self knowing until its to late. It steals moments of my life. These moments can be from seconds to minutes to hours. For those moments I am not myself. 
Theres this bit in my house where the stairs go to nowhere. Its just a strange little space that I thought might be interesting to play with. It's a mostly hidden condition so its easy to hide a lot of the struggles it makes. Its a contant struggle and in a way like a weight hanging over you at all times. It gives a feeling of intense urgency and threat. It can strike whenever and disrupt whatever you might be doing. I suppose I feel so drawn to this space because of its sense of displacement. It had a purpose once, the stairs went to somewhere. Now they are rendered almost pointless and somewhat confused in their aim.
So I thought it would be a good place to start trying out ways to capture a 'feeling' if you will.



  
So out came the camera and Istarted trying to find a way to explain how I sometimes feel. I'm overwhelmed by something that I cannot quiet understand. This mass of incomprehensible confusion. I'm not sure why I have chosen to keep my legs in focus though. It was just something I instinctively did. Perhaps Its because no matter how  much this condition has turned my life upside down, I'm still living and as much as my life has changed I still have certain things I can focus on and aim towards. It has taken over control of my life no matter how much I wish it hadn't. But not everything. There are certain things I still have control of for the majority of the time. And above all else I know that it could be so much worse.

Anywho I thought I'd share the outcome of my little experiment. There are plenty more ideas flowing through my mind that I want to make visual. And hopefully I will. Strangely it makes me feel better to be able to visualise something that has been floating around in my brain. Its like I get a sense of relief to be able to transfer my thoughts on to paper (or into a photograph in this case ..well I do study photography after all!!)

I have no idea if these ideas will become a part of my university work...I'll count it towards my research at least! :D 

XX

Saturday 11 December 2010

The Before and After.

This is just a bit a experimenting I've been doing for project work for university. The project is still a bit of a hard one for me to explain. I've been looking into altered states of consciousness as it's basis. The space between consciousness and sleep. The seemingly empty, dark and overwhelming nothingness. I suppose trying to find a way to photograph what is effectively invisible. If I were to use myself and my seizures as an example, I would say I was trying to recreate the lost moments of a seizure. I will be doing something in my everyday for and example making a cup of tea and the next thing I know I'm on the floor. I have no idea they are going to happen and remember absolutely nothing from the event. Its literally one second I'm standing and the next im not. I lose all sense of time and memory inbetween the two. I'm looking to find a way to regain these moments.
So one of my little experimenting sessions has been to photograph the very last thing I remember and the first thing I remember when I start to regain consciousness. 
 
 


*Gap I have been trying to fill*



Here I have not yet filled this gap or "missing moment" as I tend to call them. I have simply began the process of experimenting and have at provided a place for the answer to fill in perhaps the simplist of ways.

At the moment this project is not personal. It is not about me. I am just using my experiences as an aid to research. I hope that the overall outcome will be a general look at altered states of consciousness and a way to visualise the invisible.

Anywho this is just one of things I've been looking at and trying out. I've got quite a few of these before and after shots now with the seizures and all and its turning into a sort of diary..  Like I said it's still hard for me to explain exactly what I'm doing which is one of the main reasons for trying out different approaches to the subject :)

XX

Thursday 9 December 2010

Wednesday 8 December 2010

Every girl loves a new piece of jewellery!!

It just so happens that this particular piece of jewellery could mean all the difference should I have a seizure when I'm out on my own.
Yep thats right my Medic Aware bracelet arrived woooooooooo!!!

I can't even explain how a tiny little bracelet can mean so much. Its my answer to freedom... to do what I want, when I want. It's that little bit of pressure off my back when I need to do the simplest things like pop to the shop for milk etc.
:D

















I love it and it fits perfectly :D
 
If anyone else would like one of these or knows someone who might, I bought it from:

http://stores.ebay.com/Medical-Bracelet-Medical-Jewelry

It cost about £20 ish including the engraving, some wallet cards to write more info on and postage from the USA  (which is a whole lot cheaper than anywhere I found in the UK!!) Plus this is the nicest design I could find to suit me :D and its a nice colour hehe!

XX

Monday 6 December 2010

Ok so last night was not a good night. To many things just sort of went ARGHHHHHHHHHHHHH all at once. But after a good nights sleep things seem alright again. :)

All the more reason for my other blog
http://jade-smileoftheday.blogspot.com/
 (I have not got a clue if you can link that into one of the ones you just click on.. but there we are!)

Nothing like a bit of positivity during the day :)

XX

Sunday 5 December 2010

I would give ANYTHING to be back here right now.


Gone are the days where, given that I dont have to be in uni until Thursday, I would have probably got in my car and driven the 200 odd miles just to be there by morning.
But oh no I can't. I'll just stay here then. Joy.

Somebody went to the library!!

 How about this for a pile of books! Despite not exactly being able to concentrate 100% I am determined to make the best of the Christmas break from uni and study study study!
This book may well be THE most helpful book for my disseratation and quite possibly my project too! (at least thats what I'm hoping anyway)
                                                                            
                                                                            
                                                                            
                                                                           






I suppose I should write a post about what my work is actually about but I can't really do that until its all sorted in my own mind... which could be a while at this rate..... Meh I'll get there I hope! (I don't really have a choice..) This is one of the reasons (along with time FLYING by) that I decided to try and focus a bit (easier said than done at the moment..) and just sit in the library and find some books to try and gain some prespective when it comes to my uni work. Which in turn gives me something to focus on :D BONUS!

And with that said I'd better get cracking!!

Have a lovely Sunday :)
XX

Friday 3 December 2010

How is it nearly Christmas already!?!

With everything else happening in life at the moment and time flying by I seem to have forgotten that Christmas is very very soon.... 

So in a bid to try and get myself to realise that Christmas is in fact just around the corner... some of today was spent wrapping presents and making snowflakes!! 



 






I was feeling creative and turned into a six year old for a while it would seem :D







That is all :) XX

Thursday 2 December 2010

Positive Post :D

 So last night was the opening to the EmptyShopProject, Newport Photography Student Show.





Well done to everyone who entered work into the exhibition :D The images were so varied, interesting and beautiful :) I think everyone should be very proud!

The turn out for the opening was awesome too!

And of course a massive thanks to those who spent their own valuable time to install it. *Thank You*

LOVES       :D!!
X

Wednesday 1 December 2010

Epic long post for an Epic trip to hospital.

Soooo the whole “wooo I haven’t had a seizure for a whole week” didn’t last very long. I went for a whole 9 days without a seizure only for an epic one to come along on Sunday evening.

So there I was just toodling along with my day trying to persuade myself to get some dissertation work done not long after finally settling down to actually get on with it then BOOM! I specifically remember getting up to leave my room and then the next thing I know I’m on the floor with a sickening headache and somewhat throbbing head. Great.
I’m getting used to how I feel after a seizure now. Usually there’s the overwhelming tiredness, dull headache, very achy muscles from where I have been tensing and convulsing and confusion for a short while. I devised a little routine that I talk myself through to try and regain awareness and send off the confusion.
Where am I?
What time is it?
What time was it?
What’s the last thing I can remember?
Have I hurt anything?

One of the first things I noticed is that it took an unusually long time for me to figure exactly what was going on. And that the headache wasn’t the usual dull fog, it was truly PAINFUL, sharp and focused. I also immediately felt a subtle sicky feeling. My medicine still makes me feel nauseous but never so late into the day. Oh and one of the deciding factors of “this isn’t normal” was the distinct swelling building on the side of my head where I now figure I’d hit my desk on the way down..
Trying to string a sentence together was fun...
So obviously as much I didn’t want to go... A+E it was. Thinking of the old “better to be safe than sorry” routine. This time I had the far less embarrassing journey via taxi rather than ambulance :) by the time I got there I felt more than just a little nauseous but I think I just thought “meh its probably just the way the taxi was driven”. So into Minors I went making sure I told them I was specifically there because I had hit my head NOT because I had had a seizure. I was seen surprisingly sharpish and here was me thinking ooo awesome they’ll check me over, tell me the usual “if anything gets worse come straight back” speech, then I can just go home get a good night’s sleep. WRONG. They did the usual ‘obs’ and found that my blood pressure was high and I was “tacky” which I later found out meant tachycardic. Which I suppose I’ve since learnt isn’t so good when you’ve just smacked your head... and I was sent straight into majors. 

By this time I could not stop shaking, my head felt like it was going to explode and I really did feel very sick. URGH. I think the best way to explain it is to say it felt very similar to a really bad hangover. You know the kind where you will do anything not to move in fear of keeling over...
Anyway yes so I had YET ANOTHER ecg, various neurological tests including trying balance on one leg with my eyes closed and my arms out... that must have looked HILARIOUS especially with the distinct lack of balance I have anyway and the fact I couldn’t stop shaking. And yeah all sorts of other tests for neuro stuff and general observation.  (BP, temperature, Pulse rate etc) 

OH and then there was the blood test...
Now to say the least one might say I am very used to these lovely tests.. .and most of the time they can run the test without any particular effort despite me having notoriously hidden veins... Needle in = Blood out. But oh no not on this occasion. My veins were nonexistent to say the least the poor doctor had one hell of a job trying to get any blood from me. Its safe to say I now look like a pin cushion! Seriously she tried the usual place (inner elbow) found a vein stuck the needle in and NOTHING as she said “It’s like they see the needle and shy away”. Urgh so out the needle came and then she tried to find a vein on the back of my left hand again eventually  after slapping my hand, rubbing my hand and arm, turning my hand blue and forming a fist out popped a vein and once again she stuck the needle in (oh em gee painful) and again NOTHING. No matter how much encouragement my veins did not want to cooperate. The final attempt was made on the back of my right hand again very painful :/ EVENTUALLY she managed to get the blood to trickle into the needle slowly and awfully painfully! My doctor definitely deserves a medal for her effort!!  It’s funny though I have no idea why they even needed to do blood tests for a head injury... maybe it was something to do with my obs... or maybe not... I’m no doctor so I guess I’ll never know. 

Medicine and painkillers a go go!! 

So yes needless to say Monday and most of Tuesday(until I could bare it no more) was spent lying down trying to sum up the courage to stand up for more than a couple of minutes without falling over, not helped by having the room spinning every time I raised my head.. I CANT STAND DOING NOTHING!!!!! Honestly its one of my worst habits I get bored SO easily it’s quite ridiculous.  Spending time ‘taking it easy’ is one of my worst nightmares!!  
I think it’s safe to say I’m getting more and more used to hospitals... well I say used to but I suppose I mean realising just how much I really don’t like them!(Obvisouly I'm truly greatful for them helping me to get better)
It’s now Wednesday and after finally getting out and about for uni ‘events’ today (soooo very needed) I still have a headache but the beautiful thing known as Paracetamol can now control it WOOOOOOOO! Hopefully it will disappear completely in a couple of days along with my lovely bruises which Thank God aren’t anywhere near as noticeable as last time (Thanks to my hair..) :) 
Anyway end of that incredibly long rant :D
 Time to start counting the days of “no TC seizures” up again let hope for longer this time :D!

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.