Photographic T-Shirt!!

My lovely coursemates from BA (hons) Photographic Art - University of Wales, Newport class of 2011 are fundraising for their graduating publication.

This is one part of the fundraising mission... an awesome looking T-shirt!! 

It looks amazing and is a pretty damn good price!

Click here to take a closer look/purchase :)

Thanks for looking!

All the best :D! 

The epic sleep.

So my 'bit of a wobble' turned into whole days and nights in bed. Usually I do not sleep more then 10 hours a night end of. I rarely sleep in past 9 in the morning and the times I do it'll be because I've not been able to sleep the previous night. I cannot just lie in bed, even if I'm tired.. I get bored very quickly and end up getting up. 

Anyway I went to bed the other night, fell straight to sleep, slept the entire night through which in itself is minor miracle.. then woke up at 9ish in the morning with a banging headache. I heard my housemate moving around getting ready for their lecture so I thought I'd pop down stairs to say hello. I stood up out of bed and thought I was just going to fall straight over! Not good... but I was really thirsty so thought I'd make my way down stairs anyway. How I didn't fall my way down the stairs I have no idea my balance was all over the place! I made some tea clung on to the kitchen side and had a little chat. Barely managing to drink even half the cup I dragging myself back up stairs and getting straight back into bed. This is another thing that I NEVER do. Go back to bed.. once I'm up, I'm up. I then proceeded to fall straight back to sleep until I heard said housemate return from uni 4 hours later! We had a chat again (I like to catch up on all the gossip seen as I'm not at uni anymore..) I watched tv for a little while then fell back to sleep again for the afternoon. Crazy. I wasn't hungry either which worried me a  little as I can safely say I'm almost always hungry! Everytime I even tried to sit up in bed the world around me was all over the place. It's hard to explain really but I suppose a hangover is a similiar feeling.. everything is muffled and sort of 'fuzzy' and lying down is the only way to ease the horrid feelings. Anyway I then managed to make myself eat something in the evening which in itself was effort but I know that not eating will only make things worse especially when it comes to blood sugar (trust me I know this from past experience!) Unbelievably I then slept the entire night and didn't wake up until 12 today! Bad in terms of me not taking my medicine at 9 like usual but good in that I woke up feeling perfectly fine!

I figure I must have been fighting some illness off or something... I've had many days where my balance is completely screwed and lying down is the best option since I started having seizures, but never have I slept for that amount of time. I get very tired a lot anyway what with the medicine and Epilepsy and all.. but for me to actually sleep for so long is unbelievable!!

So this is the view I had when I wasn't sleeping.... fascinating isn't it??

But putting that aside today has been so good. Simply because I woke up feeling far more alive today. I got up with no problems at all, took my pills, showered, tidied the house a bit, checked emails etc, popped to the library, to a couple of shops, and to the medical centre to pick up my medicine presciption and re-stock my 'drug drawer' as I like to call it. Once home again I spoke with my mum over the phone and decided that I will be catching a train tomorrow night down to hers for a few days... I CANNOT WAIT!!! It's a little farm in South Devon :) they only moved there a month or so ago so I haven't seen it yet plus it's right by the sea!

How I can go from feeling so rubbish to alright again in such a short space of time is beyond me but hey now I can just be excited for my trip home to see my mum, Chris and all the animals! I haven't seen them since Christmas so it's definitely a much needed visit :D

X

A bit of a "wobble".

Last night I completely lost my balance again. :( I was just leaving the kitchen with a full mug of hot chocolate and the next thing I know I was flinging it all over the kitchen floor mug included. 

It's funny the first thing I thought was how lucky I was that it happened in the kitchen rather than two seconds later in the living room... (It would have made for an interesting session explaining what happened to cause a stained carpet to my landlord..) 

The question always crosses my mind "is this the beginning to a full blown seizure?" But after literally gathering my senses I mopped up the mess, re-made my drink and made my way up stairs albeit in a rather wobbly fashion. Apart from being a little shaky and needing two hands to hold my mug instead of one, a cracking headache and a early night to bed... all was fine :)

I suppose it's just another 'episode' to add to my seizure diary.

Oh my mug survived though :D much to my relief... it's my favourite one! 

Happy Purple Day!!

Today is Purple Day – The Global Day of Epilepsy Awareness

www.purpleday.org 

"Educating people about epilepsy is so important because people need to know what to do if they see someone having a seizure and they need to know that there are different types of seizures and that they don’t have to be afraid of epilepsy or the people who have it. Education also helps people with epilepsy know they aren’t alone." 

It's such a good cause and all started by one young girl :) Inspiration to the max!! 

I'm not actually off out anywhere today to spread any awareness.. BUT I am wearing purple :D Actually the more I look around my room the more I find I might just be a little obsessed with the colour... right from my diary to my bed linen... even my medical bracelet's SOS emblem is engraved in purple!! 

If you can wear something purple today in support :)

XX 

Two weeks on. :)

It's been two(ish) weeks since I increased my dose of Keppra from 1000mg to 1500mg per day. Today has been the first day I haven't felt completely exhausted which as a result means I'm in an awesome mood :D. I get headaches most days some are only minor aches but some I really honestly could cry from. The increase of medicine only added to this. Most days by the time afternoon/early evening roles around I find myself having to lie down. Even walking up the stairs seems like a huge effort. I really dislike lying around not doing anything but I can't find the energy to do much else. My mind races though, and I put the TV on just to try and focus my mind on something other than life stuff but it doesn't usually work. I just end up staring at it wishing I could just get up and go for a run or something. I try to make light of it and joke around and most of the time I can deal with it (even if it does mean having to cut short some much needed sunbathing time in the first bit of decent sunshine we've had this year just to go home and lie down/nap...) but sometimes even smiling seems such an effort and that scares me more than anything.

But hey today felt good :) The sun was out, the temperature was warm and the general mood was lovely.  With Spring most defintely in the air a friend who I live with and I decided that our garden needs a re-vamp. So out we went to look around to see what we can do (with out spending any money) to spruce the place up a bit. We ended up weeding and re-building a little rockery :D! The plan for the weekend is to carry on with the little make over ready for the warm weather. 

Tomorrow I have a plenty planned for the day. Hop on the bus in the morning and pop to the hospital to scout out where my neurology appointment is in a couple of weeks time. My local hospital as with every other hospital I've ended up in over the years is a complete maze and REALLY confusing... hence finding where said appointment will be in advance JUST in case I couldn't find it on the day. That would not be good! Then hopefully the weather stays nice so we can visit a park which just so happens to be next door to the hospital with our camera's of course! Then go back into the main area of town and pick up some gardening gloves along with a trowel ready for the weekend. I can't wait. 

Hopefully I'll still feel good tomorrow and don't get struck down by anything Epilepsy related. Fingers crossed! 

Here's a lovely song to match my mood :)

Diet changes as a result of Epilepsy.

In an attempt to gain some control over seizures I have made some changes to my diet to compliment the  lifestyle changes I've also made such as strictly regulating sleep patterns. 

They're just some simple changes really but hopefully it'll help... 

NO:

• COFFEE - I LOVE coffee so this is one of the worst things I have to completely give up!! (Although I do drink a little decaffeinated coffee just for the taste!)

• CARBONATED DRINKS

• ENERGY DRINKS

• Large amounts of anything with high levels of sugar 

VERY LITTLE:

• ALCOHOL - For me to drink alcohol with this condition and especially with taking 1500mg of Keppra is VERY VERY risky. It significantly increases the likelihood of seizures so personally (apart from on very rare occasions) drinking alcohol is not worth the risk.

• BREAD - More of a personal diet choice I try not to eat any but if there's nothing else available I'll eat a small amount. Feeling extremely tired a lot of the time due to the effects of the medicine is hard enough to live with and eating bread only adds to the feeling so cutting it almost completely out is definitely the best option. 
 

I drink a lot of water, I always have, but now I find that it helps refresh the sluggish effects of my medicine a little but that could be more psychological than anything else. Who knows but if it helps, it helps :) 

Basically my main aim is to cut out anything that may cause disturbance with the brain whether it be through caffeine intake, blood sugar levels or exhaustion etc. I've been living with these changes a while but only time will tell if they will help reduce the frequency of seizures alongside the 1500mg per day of Keppra I'm currently taking.

We shall see. 

There's no place like home.

I've lived in many places over the years but this valley near the tiny village of Carrog in North Wales is the place I will always consider my 'home'. I grew up here and have some really truly beautiful memories that were formed in my time here. One of my families still live here in the very same house I grew up in :) I love to visit even if it just for a couple of days, and that's exactly what I have just done for the weekend. 

There's something really therapeutic about going home and spending  a little time with family and friends and the simple things that are truly familiar. 

This is the stunning view I wake up to every time I stay here :D it's so lovely it makes me smile just to imagine it! Miles and miles of green fields, trees and it's various animal inhabitants really does wonders for a stressed mind.

Of course there is also nothing quite like some homemade cooking :)

I mean obviously I cook for myself where I live but not really anything particularly special... (I really should make more effort with that..)

Ahh something Wales is famous for... SHEEP! These are the first lambs I've seen this year. Again another huge change in recent years..lambing season is one of my favourite times of the year. A friend of mine's parents used to take part in the lambing season on their neighbouring farm. I remember year after year being fascinated with watching it all happen and of course feeding the 'pet' lambs bottles of formula. Nothing like seeing a flock of lambs running so fast their legs looks like there going to come off.

This is Charlie, THE most cuddliest, cutest, attention seeking cat I think I have ever met. A hug from him (and I mean hug.. he hugs like a human would :/ ...) is enough to make anyone feel better!!

 

It was nice to go back just for the few days. I was very tired most of the time though which was a bit of a shame but then I'm still getting used to the increase in my medicine so to be able to do anything with any enthusiasm is something to be grateful for! It's strange not being able to see my any of my family or talk to them face to face for months at a time when I'm going through this testing change in my life. I'm not going to lie it does make it a little awkward when I do see them.. I think it's because so much has changed in such a short amount of time. My not being able to explain things very well when I do get to talk to them in person doesn't really help either.. but hey all is good anyway and it was really really good to visit :)

Upping the dose.

A week ago I increased my dose of Keppra from 1000mg per day to 1500mg per day. This increase was due to a phone conversation with a specialist that, after describing some newer 'symptoms', resulted in them wanting me to increase the dose as they think it's highly likely they are other forms of seizure. It shocked me how quick they got the medicine to me though. I had a phone call  from the hospital one evening and the  following morning recieved a call telling me my medicine was waiting for me at the pharmacy.

So one week on I'm still getting used to it. It makes me feel sick from the moment I wake up until well into the day about 2/3 in the afternoon some days are worse than others. I also get VERY tired.

I try to sleep between 8 and 10 hours a night. But that's far easier said than done. Take last night for example I was in bed and asleep by just gone 11pm but managed to wake up almost on the hour EVERY hour all night... until I got so fed up and got up at 8. (I blame that I read a magazine article on Insomnia just before falling asleep...) As much as I think the remarkable ability to wake up in a distinct pattern with no alarms could  be considered a skill in itself it really isn't good for general functionality the next day!!

So it's back to good old afternoon naps. Well I say naps they're more like mini sleeps usually 1-2 hours sometimes up to four hours or more. Needless to say it eats out of my day a huge amount. But if I don't try to sleep during the afternoon I simply don't function normally from mid afternoon until I finally go to bed. I'm hoping that in a few weeks I won't have the need to sleep as much though :)

Hopefully this increase will help with my already existing seizures and these newer ones. Guess I'll find out over the next few weeks leading up to my neurology appointment. It makes me nervous just thinking about what they will have to say and what it will spell for my immediate future. But I figure I can't change anything so I'll just ride it out and focus on the good things in life :) 

An interesting read.

Yesterday I found myself at a loose end when I had what felt like forever to wait for a bus. Luckily though it was lovely and dare I say it warm(ish) weather so I thought I'd take advantage of it and sit down with a newspaper. I'd seen this newspaper advertised and thought I'd pick one up to read. It's a prefect read for someone like me. All the  relevant, highly informative and interesting round up of news on that particular date but not over complicated for my little brain :) I will definitely be reading it more often!

Link to i newspaper's website.

This is an article I came across yesterday, its basically an article on the appearance of images of violence and of an upsetting/disturbing nature in the media on a public scale. Posing the question - should such images be shown when some people may find certain images to be of an offensive and overly upsetting nature?

The case for offending the public - Dominic Lawson " Shocking images upset many people. But sometimes they have to be seen."

Just an interesting subject that I thought should be shared. It was a particularly interesting read for me as I wrote an essay on the subject for university last year. I find the case of what photography should shown and in what context crops up a lot on this course.

If you have a spare five minutes it's worth a read. 

Helpful Website.

The other day I was introduced to this website youthhealthtalk 


It's really REALLY helpful :) They cover a whole range of medical conditions and life issues, providing REAL LIFE stories thoughts and feelings along with the medical side of things.

There's also a forum where you can chat with others and share experiences.

If you think you or anyone you might know could benefit from this site then you should definitely take a look!

Share the wealth people :D

XX

A list of Positives :)

Right I've decided that no matter how much life has turned completely upside down in the last week there no point moping around to much about it. I can't sort anything out until I speak to a few more people and that won't happen until after the weekend.

So I've taken some advice that a couple of people have given me and I'm TRYING to relax for the weekend... I really can't stand doing nothing for to long though!

I've decided to make myself a list of positives that my time off from uni can give me:

• Time to photograph whatever I want whenever I want!!
• Find a part time job and meet some new people 
• Time for some well needed rest and non-stress 
• Visit lots of exhibitions and galleries
• Hopefully gain some volunteering experience at galleries
• Visit my family both in North Wales and South Devon :)
•  Help my course mates where I can with their graduation exhibition and everything related
• Time to get used to this gruelling medicine!
• Be better rested so when I see friends I don't come across as a zombie!! 
• Enjoy life again and genuinely smile :D

For the mean time though I'm going to sit back with a mug of tea and look through the books I have out of the library at the moment. I thought I'd raid the universities library while I still have the chance :D Their collection of photography related books in particular is AMAZING.






X

It always comes down to money.

Never did I expect that so much can rest on a chat with my landlord. 

With leaving university for these 6-12 months (depending on when the university decides if I can resit the whole year of just the second semester) comes some serious money matters. My student loans stop as soon as I tell the university I am definitely 'suspending my studies' and I've even been told by the company that I will have to pay some back straight away. WHERE I'm supposed to get money from I have no idea. 

I went to the Citizens Advice Bureau today to find out some more of my options when it comes to benefits etc.  To find a balance between a part time job and a little bit of help financially where needed. The thing is nothing can be sorted etc until I find out where I will be living in the immediate future and into next year. Simply because different entitlements depend on the type of living arrangements you have. ITS SO COMPLICATED. My landlord has said he'll pop round sometime early next week for a chat which I both can't wait for and nervous about in terms of it pretty much deciding what happens next life wise. I know I can stay living here until the end of June. I'm hoping though I will be able to live here for the next uni year as well and possibly through the summer. Instincts are telling me its not going to happen like that though... in which case I have some huge decisions to make in where to live! One huge stress I really could do without for the moment.

Hopefully I will be able to get a part time job that covers my rent and I'll just live off my savings for the other areas of life like eating.. I'm actually excited about having a job again :) I love working strangely and having a income is such a good feeling plus for me I know it will prove I can have some of my independence back. :D 

However I simply do not have the energy for a full time job at the moment. The entire reason I've made the horrible decision to stop university for now is mainly because I'm not in a state to keep up with the work load from the lack of decent health along with a massive need to slow down and rest and try to stabilise my condition. If I were to get a full time job then the pressure would just build up again and the point of leaving university to escape the pressures would be pointless.

Fingers crossed for now though :) I have the weekend to sit back and try not to worry to much about things for a little while. Easier said than done though I can tell you that now!!

A Turn for the Worse.

To say it in the tamest way possible... in the space of a week my entire little world has come crashing down around me. (As in life world not me literally crashing down... just to get that clear!)

It all went down hill from 4 o'clock on Thursday. I was in my feedback session discussing the work I had produced and was pleasantly surprised with the grade I got :) but it just took everything I had to get to that point and deep down I always new I could do so much better. I can't remember exactly what was said but something just panged inside me and I realised that this just wasn't going to work. So I left the session with a million more questions and worries than when I went in. For the few hours following I just thought and thought about the option of just stopping everything altogether just toying with the idea more than anything. Then,  that evening completely out of the blue came a phone call from my local neurology and specialist epilepsy department. It was the first contact I've had with anyone down in South Wales to do with my diagnoses other than my GP. (I was diagnosed after seeing a neurologist up in North Wales but asked to have everything transferred down to South Wales where I'm studying). So I ended up having a over-phone consultation type thing in which we discussed the medicine I'm taking, my seizure diary and the newer 'symptoms' I've been experiencing. For now it would seem my Tonic-Clonic seizures have become far less frequent (about one every six weeks now :D!) Unfortunately after explaining these newer symptoms I found out that as much as I hoped they were side affects of the Keppra they told me that they are extremely likely to in fact be other forms of seizure. And was told that these would be investigated further when I see my new neurologist in April. 

However it was decided there and then that I would up my dosage of Keppra immediately. Judging by how awful it made me feel when I've upped the dose in the past I know that this is going to horrid. There are the short term effects which include waking up feeling sick and it not easing until 2/3 in the afternoon and the lovely exhaustion but also the long term effects. My memory, concentration and pretty much anything needed to study effectively have already been hugely impacted by this brain taming drug and this is only going to add to it. 

Basically the phone call confirmed what I  had deep down known for a while. It is just too much for me to cope with for now. So taking everything into account I have made the decision to suspend my study and re-start either in September this year or March next year. It is one of the biggest decisions I have ever had to make. I'm just so exhausted with trying to keep up. At the end of the day I KNOW I can do so much better with more time. I'm not talking grades as such but also how I feel towards the work I create and my general learning experience. I just need some time to slow down and clear my brain of the stress that's only been adding to the fog of Epilepsy.

It amazes me how much can change in such a short amount of time. This time last week I was at uni waiting to here how I'd got on in my assessment and planned to carry on with everything how it was and graduate this summer. I don't in any way mean to sound dramatic or anything but I don't know anything else at the moment. Uni was the only thing I had to cling onto for now. I've lost my job, so much of my freedom  I don't even want to think how much and now the only thing I could really focus on is gone as well.

I don't know what happens next which scares me more than anything. I like my control and to have a least a basis of a plan for the immediate future but I suppose I'll just have to see how it goes.

I still have more meetings and options to sift through before I officially hand over my forms.

Some good luck is most definitely needed!

Does it Offend You, Yeah?

Wednesday night was the first "night-out" I'd had in what felt like forever!! It was to a gig in Cardiff to see Does it Offend You, Yeah?

It was the typical loud, hot, crowded awesome atmosphere that comes along with any gig. And I am ultra pleased to say it didn't affect me one bit! I was so so worried it would. (Well apart from feeling very very short... but that occurs on a daily basis..) So more nights out to come I think :D well.. within reason of course.

This has got to be my favourite:

Deep Breath.

Stressful morning.

A lot happened yesterday that could mean a MASSIVE change in everything I'm doing in life at the moment.  

Do I stop uni for this year or not?

One huge question that I have been dreading asking myself and that seemed to come out of nowhere. It didn't. It's been playing on my mind for a while but stuff happened so quickly yesterday its like everythings just come to a stop and I can't carry on until I make this decision. I'm waiting to hear my options. I have so many questions. As I type I'm literally sat in limbo waiting for a email that might give me some answers. Writing this is an excuse for me to pass the time and focus my brain for five minutes. I've decided that this afternoon if I don't hear anything before, I'll go up to uni and find someone to talk to. I can't leave it for the weekend and I'll stress myself to much!!

If I'm going to leave university for this year it needs to happen ASAP as it's not just me that it affects and I'm fed up of people having to spend their time on my problems. I won't make any decisions until I have all my options laid out in front of me. Until I've spoken with the people who need to know and I have all the "pro's and con's" clearly stated. Another reason I need to speak to someone today. So the weekend becomes time to be able to think everything through and make an informed decision. Not sit waiting and wondering and stressing myself out.

Deep breath!!

Apricot - Short Film

There's a filmmakers network I've stumbled across fairly recently called Future Shorts. A lot of the short films they feature are available for viewing on their You Tube Channel
Basically it's amazing. Some of the films are incredible!

This is one particular video I found today that I think is so simple but really beautiful :) Enjoy!