A New Doctor

This morning I had an appointment with my new GP. For some reason I just never felt comfortable with my previous doctor which of course is by no means his fault I just don't get on with some people and unfortunately he was one such person. When you have to spend so much time with doctors it's best to find one you can interact fully with so decided to see another doctor this time. And I'm glad I did. This one even smiles!!! Seriously he's the first person I've actually seen smile in this surgery... 

Any who the main reason for this particular appointment wasn't particularly epilepsy related (for once...)! After speaking to my E. nurse a couple of weeks ago about the pain I had whilst running and feeling so sleepy a lot of the time rather than just tired she told me that it wasn't very likely to be related to the 2000mg's of Keppra I'm currently taking and to run it past my GP. 

During the appointment in true epilepsy fashion I completely forgot what I was even there for which meant it took quite a while for me to actually explain what was going on. Thankfully I had written it all down on a bit of paper this morning... another habit I have had to get into. It's works though! When I was asked to stand on the scales I also had an absence seizure. Haaa best place I suppose. I still shocks me though when I realise that they've happened. I was sitting down at his desk with him sat opposite me then the next thing I know he's saying my name at me from the other side of the room stood next to the scales that he was wanting me to stand on... very strange. I'm going to put it down to being nervous. Anyway worryingly I found out I've lost pretty much a stone since my neurology appointment in April. Now usually most women would be pleased... but I'm not exactly over the moon about it. I've always been a bit overweight and for years and years have tried a million ways to lose a little weight but it just never happened. For as long as I can remember I've been pretty active with anything from Taekwondo, kayaking, scaling mountains and just walking as much as I can along with eating a reasonably healthy diet in all ways. So I new I was healthy, got over the weight issues and decided I was "happy the way I was". But back to the present and it seems to be falling off me and strangely if anything I'm doing less because I have to sleep so much. And well it goes without saying really that seizures kind of put a dampener on active energy needing parts of life! I have to admit I am a little bit uneasy about it.

I've now been sent for a fasting blood test next week. Fabulous yet more needle stabbing. Now I'm just hoping they're all OK :) He didn't seem particularly concerned so I'm going to take that as a very good thing! 

I also had some basic neuro tests done again. The usual thing where they get that little hammer thing out and tap it on your joint to tests your reflex's. I always find this embarrassing as I CANNOT STAND things to do with knees. I don't know why it's just one of those things.. so inevitably I turn into a cringing child when it comes to testing knee reflexes. How embarrassing :/ Then the pen light thing came out and got flashed in my eyes. Although when he was busy blinding me he suddenly asked when my MRI was... to which I replied in a couple of weeks. OK good was his response... now I'm not going to get over stressy about this but WHY did he ask that??.. Hmmm. I'll try to forget about that for now though.

Ahhh so that's yet another test to look forward too aswell as an MRI and EEG. Fab..!

Well given that my dress for the May Ball which is taking place tomorrow night (EXCITED!!!) is now too big for me I'm off to see if I can swap it for a smaller size if not then I shall be pinning myself into it haha. Eeee I can't wait to dress up hehe! 

Have a lovely day :)

Decorating the kitchen with tea again..

So I've just woken up from a rather long nap. After I decided once again to loose my balance and chuck tea all over the kitchen.

I'll just explain (vent)...

I didn't lie down until half three in the afternoon (I don't usually nap so late). It's strange because I didn't really feel all that bad today. Woke up like normal, ate, showered, read for a bit, caught up on all my emails etc, watched a little tv, then given that it's a beautiful day thought it would be nice to go for a walk around the village. I did notice though that my balance was a bit funny... but by that time I was already up at the uni as I needed to pop to the shop there for something. As I was walking down a corridor and stopped to talk to someone.. we just talked about uni and how life was etc then mid-conversation she announced I looked absolutely terrible. To be honest I was a bit stumped because I didn't feel particularly bad compared with usual. Anywho after carrying on to the shop, I then left uni and decided to take a detour around the village instead of straight home to soak up some sunshine. It was lovely :) Although when my house as in sight I did suddenly feel pretty tired and it just seemed so far away. My walking seemed a little off aswell. Kind of like a tipsy feeling, not quite 100% in control. But I got home fine, dumped my stuff and flicked the kettle on. Just after I'd picked up my nice mug of green tea though I then went on to loose my balance to the extent that my lovely freshly made tea was now all over the kitchen sides and floor. GUTTED. And with that I decided to put myself to bed for a while. No fun. I did sneak a glance in my mirror though and my goodness I really did look terrible. Barely any colour in my face other than my red ringed eyes, and dark circles nicely complimenting them :/

Meh so that's just another afternoon wasted in bed because of a distinct lack of energy. :( But I do feel a little better now though :) but no where near refreshed. And as for the "wobble"... I've had them before particularly in the last few months. I put them down to the increases in doses of Keppra I'm on but my neurologist isn't sure what to make of them yet. I have a couple of tests coming up very soon though so maybe I'll get some answers.

Hopefully I won't need to sleep so much come the end of the week as it's well and truly party time this Friday as it's the university's May Ball woop!

 X

A Failed Promise and Big Achievement

Last night I told myself that I will have to get back into running again if I'm going to manage running the Race For Life at the end of next month. The thing is since the strange occurence the last time I went running a couple of weeks ago I've been scared to go again for worrying that I'll have to go through that - weird completely out of the blue - pain again. (I'm seeing a GP on Thursday to try and find out what on earth caused it.) I went to sleep promising myself that today I would just get it over with and go for a quick run to the next village and back. But this morning I didn't wake up until 11:30 in the morning!! That's nearly 12 hours straight asleep and not once do I remember waking up which is just unthinkable for me! I never sleep anywhere near that long or without waking up a least a few times a night. I must have needed it. With that amount of rest you'd think I would have had plenty of energy stored to go for a run. But no, I'm shattered! My body feels heavy as lead. All I've managed today is a bit of tidying, a walk down the road to pick up some milk and a whole load of lying down.

BUT there is a MASSIVE plus side to this. It's my body that's tired, not my mind so in the hours I've spent lying down over the past couple of days I've actually managed to do some reading. OK so this would mean absolutely nothing to most people but I can't tell you how happy this makes me feel! It's like I've suddenly re-discovered an old passion. But it's not one that I gave up on purpose... I had no choice.  Since developing Epilepsy and in particular absence seizures my memory and ability to absorb and store information has been absolutely terrible. This being one of the main reasons I had to stop studying at university for the time being. I can't believe it, for far to long the idea of me reading even the most simplest of texts was almost laughable and I can't believe that just a short time ago it was pretty much impossible! Being able to just lie and read chapter and chapter without falling asleep and actually remember the stories the words are telling is fabulous and in turn a brilliant stress relief. Now I'm just hoping that it stays with me. Thank You medicine!

Hopefully I get those running shoes on tomorrow... *fingers crossed*

Hope the weekend has been lovely for you :)

First birthday with Epilepsy.

Yep it was my birthday yesterday. I am now 22 years old... Crazy!! I'm constantly baffled at how time seems to  fly by... I'll admit that is a little cliched to say but so unbelievably true. Plus it was my first since being diagnosed with Epilepsy. Luckily though and much to my appreciation it didn't rear it's ugly head in any way (as far as I'm aware anyway..) woo!

It was a lovely day :) I had another day volunteering on an art project during the day and a couple of friends came down to keep me company which was nice.

Then in the evening a few friends and I went for a nice quiet meal in a local slightly posh pub. Given we went out for the night a few days ago for my housemates birthday I thought a traditional Caerleon birthday celebration would be nice :) Caerleon being the village I live in which as it goes, pretty much has as many pubs as it does houses! It was lovely and we all stuffed ourselves silly on good old pub grub and gorgeous desserts! Yum!

Now my plan for the rest of the weekend is to try and do a whole load of nothing. All current stresses are being thrown out of the window for now and I shall just sleep and generally be a bit lazy :D No complaints from me there! 

X

A lovely stress free night!

Gosh what a stressful week! Came completely out of nowhere as well. It's worries me when that happens. One moment everything seems to have settled into a flow and then suddenly everything gets turned upside down. Although to be fair I should be well and truly used to it by now. Still doesn't make it any easier! I now have a rather large disagreement with my university on my hands which is a huge amount of stress and pressure at the moment. Grrr.

But on a plus side we did have a nights free of stressing last night though when a few friends and I went out for my friends 21st Birthday. It was soooo good to have a night out and I'm pretty safe in the knowledge my friend had a pretty good night of celebrations. :) 

A nice, happy, smiley night dancing some stress and worries away was had by all!

I did get trodden on though... But while I have a nice bruise developing on my aching ankle I have to laugh because it just adds to being walked all over by the uni with the slight issue we're caught up in at the moment. Why not allow myself to be literally walked on while I'm at it! Just another thing you have to get used to when your slightly lacking in the height department and want to boogie away on a busy dance floor :D Worth every second though!

One day of serious ups and downs.

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

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

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

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

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

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

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

I commend anyone for reading all of that ramble!

X

Wobbly start to an arty day.

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

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

Open Empty Spaces

www.artspark.net

Kiosk

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

BBC images

www.bbc.co.uk/news - Article on work 

Cue a cheesy photo of one happy me :

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

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

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

Busy days and sneaking into lectures.

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

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

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

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

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

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

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

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

I Watched Her until She Disappeared

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

X 

Pretty Purchases :)

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

 

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

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

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

MRI booked

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

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

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

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

Listening to the rain

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

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

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

Goodnight :)

A run in with the floor.

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

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

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

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

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