Merry Christmas

I know it's actually Christmas Eve at the moment (well it is here...) but I'm not likely to be on tomorrow so...

MERRY CHRISTMAS!!!! 

Have a happy, healthy, wonderful day :)
X 

Christmas is coming..

Today is the first day of the christmas break from university. I have so much work to do its scary, I have actually managed to get some work done though which is brilliant. Any little thing helps and makes everything seem a little less daunting :)

I'm off down to mums on either Wednesday or Thursday for christmas then up to my dads for New Year if all goes to plan. Apparently there's bad weather on the way though and Britains transport system grinds to halt very quickly when it comes to anything to do with snow.

Unfortunately christmas is far from my favourite time of the year. In fact I am a little like the Gringe but it's only because it's supposed to be where all the family get together and celebrate and eat an unimaginable amount of food. But it just reminds me how little I see my family and how far away they all are and of course my original family haven't spent christmas together since I was 5 years old so I don't remember spending it with both of my parents. I just listen to other peoples stories and wonder what it would have been like. I didn't realise how much it bothers me, but it does. 

But ANYWAY lets not focus on the bad stuff. I am seeing one of my sisters who I only get to see once or twice a year if I'm lucky, and I really cannot wait!!! We used to be hell together when we were growing up and cause mayhem but since we have been living apart for about four years, when we see each other again it is so much fun!!! 

This is us when my mum first moved to the farm and we were introduced to the incredibly friendly sheep earlier this year. :) 

Looking forward to it :)

X

The very idea..

It sounds silly but the one thing that is really causing me stress at the minute is the very idea of travelling on the trains over the christmas period. Hot, over crowded, foul smelling trains means long periods standing wedged up against other miserable and stressed out people whilst clinging onto luggage for hours on end. (This luggage being extremely heavy and bulky... I'm only little!!) And that's before the very idea of travelling alone and having the constant threat of a seizure (or twelve) hanging over.

Having to spend huge amounts of money paying for tickets for some of the most unpleasant journeys I've ever taken just annoys me SO much I can't even put into words. 

Even before I take into account little excursions I might make while I'm visiting family over the christmas holiday I will be travelling on EIGHT of these trains across hundreds of miles and two countries just to travel between people and place. There's never a time when I wish more than anything I could still drive.

DREADING IT.

Another week..

another bump on the head.

This week has flown by! It started with a nice big seizure and resulting in a rather hard bang on the forehead :( It hurt a lot, the headache lasted for ages and the bump and bruise wasn't the best look ever... but slowly the bruise is fading. 

We had quite a lot of time in uni this week with some very long days. Plenty of uni work and long days means plenty of tiredness creeping in. Unfortunately it's not going to get any less either I'm quietly freaking out about it all actually but I'll talk about that some other time. 

The weather is getting really wintery now which is nice :) except for how COLD this house is!!! It really is a typical student house when it comes to the heating. A drafty house and student budgets basically means all three of us having to wear everything we own all at once just to get warm... and that's before the weather gets really cold! 

With that said I'm off to curl up into a ball with every blanket available and try to read through another essay. 

Fun fun!

Little Inspirations

This morning greeted me with an early wakening and a beautiful winter morning. The first one we've had as the weather has been very mild for this time of year here. Blue skies, sunshine and frost covered roofs.

A couple of course mates and I went along to an artist talk to Ffotogallery last night. The talk was a walking tour given but the curator on their current exhibition believing is seeing it was really rather interesting and there was on particular image of a Korean monk that has got to be one of the most beautiful photographs I have ever had the pleasure of viewing. Plus there were also soooo many artists books on sale many of which had a massive discount, and on top of that I 'liked' the gallery on Facebook ages ago and was given a free book last night for that one simple gesture. LOVE! It's so good to be within that arty atmosphere I really should make more of a habit of it especially when I feel a little healthy! It definitely allows for a good, rich source of creative juices to flow.

This is a new addition to my room :) It's seems silly that simple things make such a huge difference... but they do and there's no bad in that! So, it's exactly what it looks like, a super handy pin board and dry wipe board. On it at the moment is a day to day time plan of what I need to try and achieve to keep on top of things to do with university work. a couple of prints that printed wrong but I still like them so put them up in a hope they conjure up some more ideas... My favourite bit though is the dry-wipe board on which I write everything I need to get done so I don't forget anything!! My life is ruled by lists and post-it notes because of poor memory so anything along these lines can help is always a massive help!

The image of a clock is something that grabbed my attention on a stand at the gallery last night. I like it a lot yet can't particularly say why. So its now on show, actually I quite like how it sits in-between everything I have to get done, It somehow makes me realise that I really don't have much time. Times ticking away and all that. That and it's an advert for an upcoming exhibition on memory that I really want to see. Have to wait until January for that though. 

I have three days now with nothing planned but to catch up on some uni work and in particular get some reading done in my many creative magazines and books :D 

Lets hope the brain power stays at a reasonable level and I actually manage to get some work done... fingers crossed! 

Coastal walks and log fires

I got back from some time in Devon on Monday. I've been a bit ill, tired and just plain busy since then though so now I've got a spare five minutes I thought I'd pop up a few photo's :) 

It was so good to walk along the beautiful coastline in the sunshine chatting away to my mum about anything and everything during the morning then sitting trying to get some university work done in front of the log fire with the cats during the evening.

My favourite part though was walking down to one of my mums friends little farm LITERALLY right next to the sea one morning. The weather was incredible and the tide was out so my mum gave her friend a riding lesson on the sand. It was just perfect. 

Emergency "rescue" meds

I have been prescribed Clobazam tablets as a rescue medicine.  

This morning at about 4.30AM was the first time I've had to use the medicine though thankfully... and get this... IT WORKED!!! 

I woke myself up this morning with a large Complex Partial seizure much like one I had about a week ago. All I remember is 'coming out of it' and sitting in bed completely disorientated and confused, it's sounds silly now but I couldn't figure out why I was in bed. Anyway I calmed down and tried to sleep again but kept feeling dizzy and getting strange sensations in my fingers and head then wind up finding myself sitting in bed wondering what had happened again. I managed to take the Clobazam tablet (which was ready  waiting for a moment like this in my bedside draw) and well, I can't say how much time it took but I don't remember waking up again until my alarm went off. I did have to sleep an extra hour to avoid being a complete zombie for the day but surprisingly when my alarm went off the second time an hour later I was pretty refreshed. I had a study tutorial later in the morning and I was quite cognitively slow. It's nearly eight in the evening now and I am about ready for bed tiredness wise but all in all a pretty good experience. I have to take it again tomorrow night and the following to help stop any falling back into 'seizure mode' I call it, then i can come back off it again and done. 

Let me explain why I needed it in the first place...

There are days when I have numerous partial seizures. I have plenty a day as it is but there are certain times where I get stuck in this continual chain of seizures. They are singular seizures, sometimes they may have an hour between and some may have only seconds before going into another one. These days are awful. Sometimes I notice I am having lots through simple things like missing bits of a program I am watching etc. One of the biggest give away's though is the massive need for sleep and even walking down the stairs wipes me out and my balance becomes pretty much non existent so I end up having to lie in bed again. Annoying.

So now if I have a day where I experience lots of seizures within a few hours I can take these meds in an attempt to bring the seizures to a halt. They in effect slow the 'excitable' sparks and connections within the brain down to prevent seizures. There is a downside of course... they literally slow the brain down and when my brain slows down, I slow down. But that's a million times better than seizure after seizure believe me!!!

I really can't complain :)

Unexpected smile :)

Some not so positive posts recently which is a bit rubbish but what can you do. 

I was feeling a little sorry for myself this morning, it's pouring with rain outside and I have a ton of work to do with absolutely no motivation to do it. Above all I'm really missing people at the moment. *Sigh*

Anyway while I was busy moping around my room I came across this cute little face that my housemate made. I love how the tiniest of things can lift your mood :) (Please excuse the fact I REALLY need to get some dusting done...)

X

Cryptogenic Localisation Related Epilepsy

I received my clinic letter from the hospital through the post. As far as I was aware I had been diagnosed with idiopathic generalised epilepsy. Which meant I had epilepsy with generalised seizures which involved various areas of my brain at the same time but there was no known cause. To my surprise they now have my diagnosis down as likely cryptogenic localisation related epilepsy. Which I'm pretty sure means that they think there is a cause for my seizures but they don't know what that cause is.

I'm not really sure what to make of it to be honest. It would be nice to talk to someone face to face about it who can answer all the questions buzzing around in my head. Especially now they seem to think there might be a cause... what made them decide that?? They've seen videos, listened to witness accounts and had my trying to explain what it's like, so I guess they found something within all that.

My main worry though - if there is a cause and they don't know what it is, how are they supposed to treat it? I guess it's just a matter of luck in finding the right combination of medicines.

Ahh well best carry on carrying on.

Seizure activity.

Ok so my previous post was my trying to explain what I had experienced whilst thinking I'd had a nightmare. Well my housemate that witnessed the majority of my behaviour during that 'episode' mentioned it to her friend back home who was a nurse and it turns out it may well have been a seizure. Apparently that kind of behaviour is common for someone suffering with Complex Partials. 

I've had smaller ones where I get confused and it is VERY frustrating not being able to figure the simplest of things out there and then especially when you think you're talking sense to someone but they're looking at you with a "I really don't understand what you're saying..." look. But I've never had one so big before (that I know of)... Maybe that would explain the whole massive headache and pins & needles sensations in my fingers all that evening. 

Another something to mention to the neuro with said friend and housemate in tow! 

Trick of the mind?

I had what I think was a nightmare last night... I remember going to bed early (even for me) as I'd had a banging headache and some strange sensations going on since I'd got back from uni at 5..ish including pins and needles in my fingers now THAT was unnerving! I assume I was 'dreaming' for most of it but can remember what happened... very strange. I'll try and explain. (probably best to mention we do actually have rats in the walls at the moment... Ew.)

So I know I was asleep, and can only assume I was dreaming about whatever, then I either dreamt I heard the rats in the ceiling of my bedroom OR I did actually hear the rats in the ceiling which caused me to include them in my dream and subconsciously assume they had suddenly got through the wall and into my wardrobe and could find their way out into my room. So I jumped out of bed (literally) but was still asleep and tried to get to my wardrobe to close the door. I then tripped over some books piled on the floor at the end of my bed.

Then I heard my housemate say "Jade?" from outside my room which I think must have half snapped me out of it... then she came in (assuming I was having a seizure with all the crashing and banging) and I woke up some more. Then when I was highly confused as to why I was standing in the middle my room she asked what was wrong. I REALLY couldn't get my words out I remember really struggling to explain something about having to close my wardrobe in case rats got into my room or something along those lines... all while simultaneously trying to work out was going on and pointing as if my life depended on it, at my wardrobe...  Just the look one Eira's face of unbelievable confusion was amazing!

Yeah weird one... strange being able to remember the most of it even though I was asleep most of the time?... Ah well made for some giggles! 

Slept perfectly well after that, which is always nice. 

Catch up + Rats!

Long time no post.

Life's been busy, especially university things... and more sleeping. I finally managed to kick a headache I had for the best part of a week the other day. The RELIEF! That really got me down for a while in a sluggish and just generally rubbish way. But now I feel good and surprisingly well for a change :D I even feel like going for a night out sometime soon. (That's near enough a miracle for me nowadays...) 

Oh and here's a way to know you're living in a student house. Rats... Yep we have rats. It's horrible, you can hear them at all time of the day and especially at night when the house is quiet skittering around in the walls. I've seen one to in the back porch. Not the most pleasant of things to be putting a bin out and be confronted with a rat. But then it's not like I've never seen one before. Growing up in the country and spending a lot of time on working farms kind of makes you used to those kind of things. Today the council came around to visit all the houses in the area to check them all out, and out of all the houses, typically, it was our drainage pipes that were the problem. One of them has a hole in and that's how they've gotten in. Next step get the landlord to fix them! So I'm currently sitting in my room in a house wreaking of smoke due to the smoke bomb they've put down one of the drains, listening to the critters running around in the wall space above my bedroom. Lovely.

There's family stresses too, but for now they've eased a little and I can focus more on university work of the time being :)

x 

Package

Today I received a package in the post and it contained one of the my most favourite things, a brand new arty book :)

Nigel Shafran is fast becoming on of my favourite photographers. There is something within his work that speaks volumes to me and makes me want to photograph and experiment myself. That 'something' is what I want to explore within my dissertation along with other artists :) Just flicking through this book allows motivations to seep through asking me to document the simplicity of domestic space. 

Beautiful photography. 

Sleepy times.

I've just noticed that all my recent posts have absolutely no pictures in them. I have to fix this. 

Just not at the moment. For the moment all I seem to be doing is sleeping, snoozing and napping. I have so much university to work to crack on with and I'm really excited to do so. It just requires energy, even walking up to the university for the odd tutorial is hard work. Take the last couple of days for example... Tuesday night I had an early night and slept for about 11 hours but despite that fell asleep again during the afternoon only to go back to bed last night at 8.30PM and slept another 11.5 hours!!! That's a lot of sleep. Even today after sleeping all that time I'm still seriously tired and have been fighting falling asleep in case I missed the tutorial I had this afternoon.  Saying that it's not exactly been a quiet week, or as if I haven't managed to get anything done it's just other things have been getting in the way. Life stuff you know? The kind of stuff that means travelling here, there and everywhere and STRESS. 

Oh and there is this damn HEADACHE that will not leave me alone!!! It's like this thick cloud has got stuck in my head.. probably one of the reasons I'm so tired. I'm just hoping it's not a big seizure brewing. 

Anyway instead of whinging and writing this I really should be writing some artist case studies for my dissertation research... again interesting stuff but it involves reading in depth not something I'm particularly good at at the moment. 

Yawn. 

One date I will never forget.

04.11.2010 

Exactly one year yesterday I was diagnosed with Epilepsy. I can't believe how much my life has changed. I often think back to that appointment, I remember it like it was yesterday. But the thing I think about the most is the way I reacted, or maybe I should say, the way I didn't react. I honestly knew nothing about Epilepsy or seizures. If I knew back then what I know now I would have reacted completely differently.

The tests, the hospital trips, the numerous appointments, the agonising waits for test results, the tears, the laughs, the bonds, the arguments, the relationships, the exhaustion, the travels, the friendships, and the most important hugs in the world are just the tip of the iceberg that has been this past year. But perhaps most critically it is the emotions that I and anyone close to me have had to go through since that day. I am extremely thankful and incredibly lucky to have these people in my life. I literally do not know where I would be now if it weren't for them. 

I wish I could line them all up and thank everyone personally right this moment and give them each the tightest of hugs. But unfortunately I can't, but I'm hoping that they know who they are and know just how much I appreciate and love them :) 

X 

Neurology Appointment

I had a neurology appointment yesterday :)

Both my nurse and my consultant were there and my housemate came long with me for some much needed support and to help explain what been going on seizure wise. Obviously she sees a lot more than I do of what happens as most of the time I'm completely unaware or unconscious during. We talk about it all the time (kind of a hard thing to ignore...) and it real helps just talking about it freely. What surprised me though was how many questions she came out with during the appointment and it was strange to sit and listen to her talking with my doctor and nurse about it all so seriously. Strange I think, because at home we talk about it in a mostly light mood, not in a way that makes light of a very serious situation but more because having a sense of humour about the whole thing is my way of dealing with it. To hear her go into such detail and highlighting certain concerns was both touching and nerve wrecking at the same time I can't help but feel guilty that I have to inflict this whole thing on other people is a horrible feeling. 

We all talked about how stress brings on more seizures which I am more than sure is a trigger for many people. I seizure diary really highlights stress and anxiety triggering a big increase in seizures especially absences. I was told, yes TOLD by all three of them that I NEED to stop trying to help with other peoples problems so much and focus on my own problems more. That's definitely easier said than done though. I don't really know what to make of that. No one can help what crops up in life. It was definitely a surprise to hear Eira say it to me in front of the doctor and nurse deadly seriously. 

Interestingly though I asked about why I was getting so many nightmares. Apparently they're not a side effect of any of the medicine I am on... my neurologist then went on to say that she had been observing me throughout the appointment and can sense that I was very anxious. I'm not going to deny that I was, I mean we were discussing extremely vulnerable aspects of my life... and recent life stuff hasn't helped with the whole stress/anxiety thing. It shocked me though for someone to tell me that even after only sitting in front of her for about 10 minutes that I come across as anxious. I thought I hid it pretty well. The nightmares are almost certainly a result of subconscious anxiety :( 

They also discussed my weight with me. I have lost A LOT especially since starting on the Vimpat. I'm not  underweight nor am I complaining.. it's just very unusual for me to loose weight especially without changing my diet or lifestyle. Nothing really came about from it she just asked if I was eating... which of course I do? and believe me I can eat a lot! Just have to keep an eye on it for now :)

So all in all it was a good appointment a lot was discussed and having a friend there that could really tell them in detail what happens on a day to day basis was incredibly helpful :) and much appreciated from me! I go back for another appointment in 3 months time :) hopefully things both life and seizure wise will have calmed down by then! 

Bad news from home.

I haven't been on here in a little while. Life went crazy last/this week. While I was away at my dad's I received some devastating news from my mum. I won't go into it on here, but I can say that it has truly up heaved their life completely. My mother is an particularly strong person and speaking with her over the phone one of the most awful things was to hear her sounding utterly lost and defeated. 

Life is going to be screwed up for a while. I'm taking a little bit of leave from university for a while to go and stay with them and help out in whatever way I can. I have a meeting with my main tutor on Thursday to inform him as to what is going on and tell them that I'm not disappearing of the face of the earth and I will carry on with my uni work as much as I can. But some things are just more important at times as I'm sure they will understand :)

I leave on Friday, I would have gone down a lot earlier but I have so many things going on here as well. For example, Neurology appointment, doctors appointment (both of which take forever to get so I can't not attend them), study support tutorial, dissertation tutorial, project tutorial (again all very important as I will be missing university stuff) and that's not to mention trying to sort out my many medicine prescriptions I need to take in and collect on various days. So living life as usual as I can until then... including blogging.. it's a brilliant way to vent!

Basically life could be a lot kinder at the moment but as much as it's really hard to agree sometimes... it can always be worse!

Change of plan.

Well it turns out my prescription was late and so didn't arrive until the day I was leaving for my little trip to see family. The pharmacy where I live can't get hold of the medicine I need for a least a five days each time I ask for it as they don't stock it, therefore have to send away for the meds to be delivered. It's strange given that I live in a busy and populated part of the country but I guess Vimpat just isn't that widely dispensed around here. It's the Vimpat that I am supposed to me increasing while the Keppra stays the same. So of course this means that my increase is delayed until I get back in just under a week. Any delay in anything is annoying to some extent but I'm taking this as a good thing as it means I can really enjoy my time here. My sister and I have already been baking (surprisingly successfully!) helping out with horse stuff, trying to befriend a stray and incredibly timid kitten that has turned up on the farm and just generally catching up for lost time with each other :) It's been nice and given that my Nan and cousin are coming to stay for the rest of the week tomorrow morning things can only get better :D 

I've had a couple of smaller seizures that I've noticed by missing little snippets of TV and a couple of balance ones but nothing too major (wooo) fingers crossed the tonic-clonic's stay away for a while and I don't have too many smaller seizures either because we have lots planned! 

I'm disappearing off..

..into a bubble for a while. This evening I'm hopping on a train up to North Wales to stay with my dad and family for a week. I can't wait to see my family especially as there are two more members coming over to stay for most of that week aswell.  I've had this little trip planned for a while. I suppose it's good timing in some repect to be changing some doses medicine wise. I usually get pretty sick when I change my medicine in any way and it just won't be fair to stay down here with my housemates I'm sure they wouldn't mind but they need to study hard and I won't be helping them any by seizing, mood swinging and sleeping all over the house! It's not fair on my family either of course, but I feel that little bit more comfortable, I hope they don't mind. It sucks to know though I won't exactly be myself while I'm there, but I will try my best :)

This little diary will be closed to my ramblings for a week or so. 

X

Project Image

Tonight I have been experimenting with some quick idea's for my uni work. I asked my housemate to show me what one of her most precious objects in life was. Something that she is barely ever without. No matter where she ends up in life this item would go with her. Something she can see herself keeping for the foreseeable future.  

Eira chose her Prayer Beads. 

I like to think everyone has something so dear to them they can't even possibly think about it not being in their lives. No matter how small. 

If I were to ask you..

"Ideally, what is your idea of a stable life?"

How would you reply?

I thought it was a relatively simple question if I'm honest, I was very wrong. As part of my initial research for my proposed final year university work I asked a varied selection of people from a range of different backgrounds and upbringings to message me their response to this very question. The replies I have had so far are fascinating, heartwarming, heartbreaking, truthful, surprising... you name it. The main thing I have come to realise so far is despite how different we all may be there are common links between the general response.

I am still needing to answer this question for myself. It's incredibly hard. I've started thinking hard about it though. Time for me to get that thinking cap on some more! 

Priorities?

It's all work work work (and lots of napping) here at the moment. My prescription for an increase in my medicine arrives very soon. But I have a very very important seminar this Friday in which I have to present my ideas, research and work already created to the new group of students I've joined. I've chosen to hold off the increase until after this simply because I get nervous enough as it is when it comes to trying to put across ideas etc especially to a group of people I barely know! From past experience I can tell you that any change in my medicine sends me into another world physically and mentally and I absolutely cannot have that on top of my already growing nerves.

I keep thinking to myself, surely my health is a little more important than my education!?!

But given that I wont be able to get much in the way of university work done for probably well over a week I think just this once I'm going to have to put my uni stuff first... just for a couple of days.

I've been working hard to prepare myself for this seminar, when I can, I can't let it all go to waste. It's very annoying knowing that I won't be able to work to my full potential for a while though. Urgh. But that gives me all the more motivation to get as much as I can done before Friday. So for the rest of this week it's notes, research, notes, photography, more notes, experimenting, notes, reading, notes, trying to take in as much information as I can and yet more notes!

Upping the meds. Again.

I had a phone call with neurology today. Big sigh, I have another medicine increase coming up :(

It's good in the long run, of course it is, I mean it will hopefully mean that I gain some more control over seizures if not full control. But I know that it means a fair while not being myself. The way I term it to other people is it's as if I turn into a zombie for a until my body gets used to the new dose. I get tired, any motivation towards anything goes straight out the window and my mind wants to get up and go places but my body just out right refuses amongst other things. People say I turn into a completely different person. That upsets me the most. I hate not being me. I loose control. This delightful phone call came just after I'd had a chat with my tutor, a confidence boosting chat about life and the course and how much more positive everything seems this time around. In fact he said I seem like a different person in a positive way compared to this time last year and can tell I'm learning to live with it all. I needed someone to tell me that. 

I shouldn't really complain about what will hopefully only be a short term affect. But it's just the timing is terrible I've just started back at uni, things are getting serious in terms of being able to graduate this year already, I'm seeing some of my family I barely ever get to see in about a week and so on. I guess I just have to accept that I am going to be on these mind altering/slowing/clouding medicines for the foreseeable future. I'd much rather have that than the seizures themselves. I need to focus on the long term positives as they say. Sometimes it's just harder than it first seems.

I really hope this is the last time I have to increase any dosages. 

Ok venting over.

In good news however I was given a free hot chocolate today before a lecture at uni. It's like someone new I wasn't feeling so great. Oh I had a cheque in the post yesterday saying that I have money owed to me from the tax man. So to cheer myself up, I'm off to spend some of it on a pair of shoes. Fact.

Oh Comely

On a lovely trip to Chapter arts centre gallery in Cardiff the other day I was browsing around their amazing little arty shop. I spent forever trying to decide which of the vast variety of books, journals, and magazines to buy and add to my little collection at home. 

I found Oh Comely Magazine. It's so so lovely. A nice laid back afternoon read. Full of anything and everything creative from art and photography projects to tasty recipes :) 

There nothing like a good dose of creativity in the day especially an otherwise dull one. I'll definitely be reading this from now on!

 

X

Head meets doorframe..

AGAIN. Yesterday morning/afternoon was just plain rubbish.

My balance was completely off from the moment I sat up in bed. That fuzzy, clouded brain was throwing a number of little seizures at me. But unfortunately they are impossible to dodge so all you can do it sit there and let them do what they want to do. I couldn't read, write or watch TV even trying to string sentences together was difficult just sleep on and off. Anyway at some point during the morning trying to get back to my bed from the bathroom I completely lost my balance all together and caught a lock on a door frame on the way down ending up with a nice cut on my cheek frighteningly close to my eye to go along with a rather sore hip. So yet again I'll have to walk around with a nice injury to my face. I shouldn't complain really as it's not as bad as some of the black eyes, cuts and bruises etc I've had to walk around with that are in plain sight to everyone. It's then that I can just feel people wondering what I've done and coming up with their own conclusion that I never get to hear. I actually prefer when people just ask, I have no problem with telling them. It's just those moments when you have to walk down a crowded corridor or something with people staring, sometimes I just want to stop and shout "I had a seizure alright? Deal with it!" but I am far to shy to do that! I suppose even more luckily it could have been a massive black eye and given that I have a lecture with my class tomorrow who have no idea I have Epilepsy... that would have been beyond awkward.

Ok rant over. My housemates and I are off to Cardiff today for a few hours to visit a brilliant art gallery and as I'm feeling pretty good today surprisingly,  although a good nights sleep was a brilliant help, I can't wait. :)

Sleep patterns

I seem to have fallen into a new sleep pattern. In bed by 10pm and asleep by 11pm and wake up between 7 and 8 in the morning. Now to some people of course these times would be completely normal but not for me. I usually sleep for about 11, 12 if not more hours a night! And of course I still steal a nap when I can/need, but that goes without saying.

I'm loving it though to be honest it means I get up earlier than my lovely housemates which gives for lesser fun things, chatting etc to be taking place which without fail will distract me :). I mean what would you rather... sitting at a desk for hours writing up notes OR someone announcing they want to hop in the car and visit the pet store and see the animals?... I mean don't get me wrong I LOVE university and pretty much everything that comes along with it, but I know which of the choices I'd choose. (Hint - fluffy bunnies and funky looking fish!)

My mind is freshest during the morning usually anyway so this way I get more 'fresh mind' time to get the important stuff out of the way i.e bills and work.The only bad thing is getting more energy lows during the day. Whether that's the smaller amounts of sleep or something else I don't know. I don't think I ever feel completely awake anymore actually but then I guess that comes with the seizures be them brilliantly obvious of extremely subtle believe me the bleed any energy sources dry. Oh and of course there in the medicine on top of that. Fun stuff!

Any who I don't know how long it will last as I don't get much choice in when I need to sleep. In facgt I've just used writing this as a distraction from work so I had better crack on! x

What a glorious weekend.

I did my usual disappearing act for about 5 days over the weekend. It was nice, really nice actually :) And as most people living in Britain will agree the weather was AMAZING!!!! It was the hottest October weekend since 1895. Crazy! Definitely chose a good weekend to bugger off from the real world that's for sure. 

Here are some quick snapshots of my little adventure from a lovely countryside farm set on the South Devon coastline <3...

 

Good relaxation time was had and again I cannot believe how summery and hot the weather was! Despite the sunshine I did gain a lovely little cold to bring back to the house with me. My housemate is sniffling as I type :( Woops. Guess I have some apologising to do...

This weekend will be very different as I have a ton of university work to get done before Tuesday. Fun fun! X

One Day

'That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it and think how different its course would have been. Pause, you who read this, and think for a long moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on that memorable day.'

Charles Dickens, Great Expectations

Change of focus.

I 'pitched' an idea to my tutor today as to what I propose on researching and producing photographic art as a response to, over the next uni year. In really narrowed down terms I'm looking at the craving of stability and control in life. Something that I myself have had trouble with for along time. Now, when I say pitched what I actually mean is, as soon as I sat down at the desk I tripped over just about every sentence and word I had to say ending up in babbling stuff nervously to him in a pretty confusing way. Amazingly though he understood what I was trying to say and was very very helpful in helping me try to get to grips with what I'm looking to research as best he could.

Last year my project was focusing on the seizures of Epilepsy and looking at the truly unique experience that a person goes through when they experience a seizure and how close you can get to sharing this experience with someone who has never experienced anything like it. Revealing and visualising a moment that is invisible. Gosh it's hard to explain. Here is my Artist Statement from the project which may throw a little more light on what I was aiming towards if it interests you. Anyway it was all very personal which I am completely fine with I mean lets face it seizures aren't exactly something that can easily be hidden. But given that the whole Epilepsy diagnosis thing was so very fresh and such a steep and life altering learning curve at that time (it still is...) it was very hard to not have ANY escape from the fact with it being part of life and part of study. 

This year I am still looking at the effects of Epilepsy but not in such a predominant way. It will be part of a slightly broader project. I want to look into the idea of people craving stability and control in their lives. Using myself and my personal earlier life events and aspects to highlight and gain ideas from. Epilepsy is unavoidably the bass line to my new work focus. It's such a huge part of my life now it would be silly to try and ignore it when I'm working on looking into the idea of people craving stability and control in life. After today I have realised that without it's constant presence in my life recently I would not have began to really think about earlier events in my life which have now become something I want to investigate further and use to create work from. This summer being a real eye opener into my current life's state. I barely stayed in one place for more than a week. Even when I did manage to ground myself in one place for about two weeks... seizures landed me in hospital. Shows how little control I do have. I won't go to far into these 'events' right now but it very basically involves being bounced in between people and place from a very young age. How it led to my becoming so used to surroundings constantly shifting and changing that I now get almost uncomfortable when I stay somewhere for too long. Resulting in me actively organising my life so I am almost constantly on the move. 

I am aware that I'm rambling on a bit. I need to get my idea's straight before I can make any real sense. It was a really good tutorial though and I feel like I'm already in a strong position in terms of immediately carrying out research and beginning to create work.

So with what said I'm going to carry on my tradition of shifting myself to another place for a while and hop on a train to Devon in the morning. Better get some sleep.

Uni take 2 - Day One

Today was my first day at university this year. I don't think it's sank in yet. Needless to say I am shattered!!! It was a full day though of no stop talks and discussion. In a good way though :)

I was so nervous. I can't put my finger on exactly why I was just SO nervous I mean don't get me wrong I was excited too but more nervous. I think maybe I was scared that I would be meeting all these new people I'm about to spend the rest of the year with and I just kept imagining I would meet them say hello and BAM I would have a seizure. In fact I dreamt about it. It's all silly really. Plus I really shouldn't be stressing about it because that's more likely to bring on a seizure!! I know I had a couple of smaller ones because as I was sitting there I noticed I has missed what the tutors were saying a couple of times nothing major though thankfully :)

So the day is over, it was ok :) It's going to take me a while to get used to being in a new year with new people though. Plus I already have a to do list that is just ridiculously long. Plenty for me to do in the next couple of days.I just hope I can get it all done, I don't fancy starting the year on a downer... Luckily I'm feeling pretty motivated when it comes to getting things done just hoping the energy levels stay up :) 

Officially re-enrolled :)

Thursday was just brilliant. :D I had a good lie in and actually woke up feeling relatively refreshed for once! I popped up to uni for a study support session for an hour where my tutor and I went through the dreaded Harvard Referencing Guide urgh that thing is truly horrendous and near impossible to understand. But saying that after going through it all with her bit by bit with her pretty much translating it into a more basic language I'm happy to say I left the session feeling pretty confident.

I got back home, did pretty much nothing for a while, then my friend arrived and moved in to the house :D so we're all settled in and ready to get back to studying. I then finally went back up to the university to re-enrol to re-sit my final year... yes that’s right it's official, I am now re-enrolled on my university course!! It feels weird... like it’s not quite real yet. I have my first meeting and introduction to the year on Tuesday. This will be the first time I will meet the class I'm going to be joining. I'm nervous... it'll be like starting at a new school and I've done that a good few times in the past, but I'm excited too to meet new people :) Fingers crossed this year will go a bit better health wise... that would be much appreciated dear brain...!

The evening was spent chatting with friends over a drink in the students union. It was nice, really nice actually :) and very much needed.

Anyway I'm knackered after walking around town a lot today so a cup of tea and an early night is needed. X

Take Epilepsy Action Campaign

There is a brilliant campaign hitting Britain over the next few weeks. Take Epilepsy Action. Headed of course by the charity Epilepsy Action.

Campaign Website

This is the video used within the campaign :)

Remember ACTION for tonic-clonic seizures:

	Assess Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury
	Cushion Cushion their head (with a jumper, for example) to protect them from head injury
	Time Check the time – if the seizure lasts longer than five minutes you should call an ambulance
	Identity Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
	Over Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
	Never Never restrain the person, put something in their mouth or try to give them food or drink				For more information: www.epilepsy.org.uk/campaigns

Mentally catching up!

I seem to be on a bit of a role mentally which is awesome. I'll explain... despite having a ton of what I now think are Complex Partial Seizures the other day (that I managed to catch on video by leaving my webcam on - very strange to see) I recovered relatively quickly :) The past couple of days I have been feeling pretty motivated to crack on with some university work! Big plus since I enrol on Thursday woooo! Every night and morning I have something new to add to my notes I haven't decided on one specific idea yet but then as I'm sure many artists will agree ideas change and evolve all the time anyway. For our first tutorial we are supposed to have a whole host of things to inform our tutors about in relation to a relatively specific idea. Things that we should have thought about and acquired during the summer months but well let's face it I've had other things on my mind :/ not that I want to use that as an excuse in anyway! Any who I'm getting there slowly :) and I'm surprised how much my brain power seems to be letting me do so. My body however is thinking the opposite, I'm very tired physically but hey as long as I remember to keep it slow and not over do things hopefully I can keep going for longer. I'm not particularly happy about the whole not much energy thing though as it's freshers week and there is soooo much on offer to do and people to meet but I can't let myself do to much. I can't help but feel jealous when it comes to things like that. 

Anyway in other good news one of friends moved in last night :D no more living alone and soo good to have them bumbling around the house. Another friend moves in on Thursday I can't wait for then either it's going to be lovely living with them I can feel it already :)

I'd better crack on with work while my brain allows it. X

A chat with the nurse.

I spoke to my nurse over the phone on the other day. We talked about the nightmares and hallucinations. It felt really strange talking to someone I don't know very well about them. Hearing myself explain what happens during them out loud was actually quite unnerving and dare I say it I felt like it was crazy talk. Slightly worryingly she really wasn't sure what to make of it all and said how unusual it was. She also said it is very unlikely it was a side effect of the Keppra and Vimpat I am currently taking. To be honest this worries me... I was really expecting her to say something along the lines of "ahh yes it's just a side effect don't worry about it, it should pass." Now I don't know what to think. 

I also mentioned that while the Vimpat does seem to have reduced the number of smaller seizures I'm having (wooooo!) I do still get days where I have seizure after seizure for hours on end. I assume they are whats classed as a cluster of seizures as opposed to status epilepticus which was mentioned when I told someone else about them. I assume it's not status as after a few hours the seizures go from one straight after another to them becoming further and further apart until I eventually stop seizing and just sleep for a VERY long time. In other words I come out of this by myself with no need for any other meds.

So the outcome of this little conversation is that she will be talking to my neurologist next week about "the matters" and will ring me back with what the neuro thinks in good time. In the mean time I will sit and wait. At least I have time to reflect on the fact there is now "patient has reported seeing spiders spill out of plug holes" written somewhere in my notes... Yaaaay! Oh but the conversation did end with "don't worry Jade I don't think you're going mad..." Which I suppose is a good point?...

Waking nightmares..

A while ago I mentioned that I had been having nightmares. In the last few weeks they have been getting more and more frequent. Strangely on a couple of occasions I seem to have experienced very weird experiences similar to nightmares but while I have been awake... Hallucinations maybe? 

They are all so vivid and so very real at the time, but they are all so different. I'll give an example of one of the 'awake' ones... This is a rather cliche one... I was in the shower and suddenly looked at my feet and saw countless amounts of spiders spilling out of the plug hole and rushing around my feet and up the sides of the bath. I don't know whether I screamed or not but I wanted to. And my heart felt like it needed to burst out of my chest, like when you almost trip down the stairs. Shortly after (I don't know how long) I looked down again and they were all gone. Everything was back to the way it was.  It doesn't sound much written down but I just can't explain the way it feels so intense and real at the time. It literally leaves me shaken. 

Anyway they are weird and the ones while I'm sleeping are really starting to get on my nerves. Sometimes it's seems like I have them all night... I wake up from one fall back to sleep and bam another one arrives! Very annoying. Of course then I get less sleep and end up knackered the next day which in turn can lead the likelihood of more seizures. NOT GOOD. I'm not sure if it's 'me' or maybe a side effect of the medicine. I'll do a little research and see I suppose. 

The graduation...

That should have been...

Yesterday was the day of my former classes graduation. I attended the event to see off everyone I had gotten to know over the last three years :) It was a brilliant occasion.  It was really lovely to watch them all walk across that stage dossing their mortar boards in their fancy robes... but I'm not going to hide the fact it was hard. I'm not quite talking in the ready to burst into tears sense, it's just I should have been one of those students. That should have been my graduation as well, so needless to say I was and still am a little envious. But if I push my feelings aside it was a really, really lovely day and so nice to see everyone was so happy :)

Congratulations to the class of 2011!! You all deserve all that you have achieved. I wish you all the very best for the future :)

X

Camera Wish!

I've had my eye on this camera for a while now. The Canon EOS 600D 

The current love of my life camera wise is my Canon EOS 450D

I can almost hear people thinking "well if you've already got on decent camera WHY would you want to spend money on another??"

Well here's my reasoning (more to keep telling myself than anyone else..)

Photography is something I will always at practise and with any luck will have make a full on career out of it. Ideally I would need at least two digital SLR's as I've come to realise with with photographing more and more events. There's only so much one lens can achieve so I constantly find myself having to change lenses to suit the situation and of course with most events it'd almost impossible to determine what is about to occur. Anything from the change in pace to a difference in lighting. It's in those moments spent changing over lenses or whilst you've got on particular lens on that you miss a fabulous shot. So to help with this carrying at least two camera's on you each with a different lenses makes it all the more likely you will be prepared for all situations and subjects.

I am a little over protective with my camera's which you have to be it's not like they're cheap and I pretty much think my life would be ruined if I we're to damage one of them. How I would cope without a camera I have no idea. It would not be good though... And seeing as now I've taken to throwing myself on the floor without notice whenever my brain feels like it again means I'm more likely than the average person to damage valuables such as my beautiful camera's! *Touch wood* though I haven't managed to land on it or throw it on the floor yet and hopefully never will.

Plus this new Canon 600D had a whole host of features that I keep reading about over and over again and I really really want to experiment with them. One of the main ones being HD motion film. Of course there are plenty of other camera's available out there but given that I already have a canon EOS digital SLR with a range of lenses if I were to purchase the 600D I will still have the choice to use the lenses and other kit I already have :D BONUS!

My current digital SLR has been by my side for a number of years and I absolutely LOVE IT. In fact I don't know where I would be without it. If I we're to pluck up the courage to splash out on the 600D my current 450D will carry on being just as treasured that's for sure :)

I'm hoping to be able to afford it soon(ish) It's quite a good price actually one that I can see myself being able to afford if I save for a little while but I definitely can't at the moment. Something nice to aim towards :)