Failed attempt at 'escaping it all'

Gosh it's been over a week since I last posted apart from the little one last night and SO much has happened. I finally have a couple of days with nothing planned other than to stop, refocus and gather up everything that has gone on. Two days to just generally re-organise my life and get to grips with everything again.

Ironically the past week was supposed to be a break from it all but everything decided to happen during it. I had been planning on a trip to my mum's farm down on the south coast of Devon for some much needed tlc and rest. I didn't actually realise how much I needed it! It started on Friday the 27th, a day where everything seemed to pile up all at once. Including an array of appointments from the job centre to hospital ones, mounting up for June, meaning I had to pretty much rearrange a good couple of weeks of life all while trying to volunteer at the art project I was helping with. It was a pretty crazy day. With the May Ball that evening as well, needless to say I was pretty tired. So with everything having changed for the following weeks I took the chance of having 5 days with nothing important planned I hopped on a train on Saturday morning down to my mum's. Best decision ever. It's lucky I because after this week I don't know when I would have been able to get back down there again!

Amongst spending some time with the family I finally got to meet Pirouetta the new foal :) She's a shy little thing that likes to dance around in little circles hence the name..
My time away started with me being volunteered by my mum to help out with the raffle at the local village fayre. It was surprisingly good! The atmosphere was amazing, here was this little village that on the average day looks pretty much deserted which isn't surprising as it's situated in the middle of nowhere right on the South Devon coastline, but the day of the fayre it was absolutely buzzing. People came from all around to take part in the festivities even though the weather had other idea's.... there was a thick sea fog totally concealing the party from the rest of the world which in turn lent itself to aiding the incredible, if a little surreal, atmosphere.

 During my time away I've sent off my application to become a volunteer for Epilepsy Wales application the other day too. I hope I can help out in some way! If it all gets approved who knows what I might end up helping with... EXCITING! The support for people Epilepsy is far stronger in North Wales than down here in the South I have found. I was diagnosed up in the North and the support was evident right from the start but as soon as I was transferred down to south Wales (as I was living here for university) the support seemed to absolutely vanish. Maybe something can be done to change this a little. I hope so.

I've also had a spot of trouble with uni and on Wednesday I received a pretty damn patronising email which made me VERY angry. THANKFULLY my mum stopped me from replying there and then as I would have just ended up rambling on about how much trouble they've caused and the feeble excuses that they've given some of which I know for a fact aren't true. I'm so glad it's not anything to do with the course I am actually studying or there is no way on earth I would be going back there. ANYWAY... I'm just leaving that for a while because I still don't think I've quite calmed down enough to respond in a mature way. It's a game a need to play right.

I had a Tonic-Clonic seizure during the night that night which I assume was due to the fact I was about ready to explode with anger and stress... Luckily though apart from a few bruises on my head, arms and legs I felt surprisingly OK the following day (although I did feel like I'd been the gym for a full on work out...) so I don't think it was a particularly violent or prolonged one, which is always a plus point. Although the following day I did seem to get really angry and opinionated at stupid little things that really shouldn't have irritated me that much. I think my mood provided my mum with a little amusement though... I mean I have my opinions anyway but thinking back I was just being ridiculous that day... it was the first time my mum has had to put up with me the day after a seizure. We did get lost on the way to an appointment in Torquay somewhere neither of us had ever been before. I got some serious road rage and the hump because the map wasn't clear enough or something along those lines. My mum just laughed. Something I'm glad for! I try my best not to get wound up about silly little things but sometimes I can't help myself. I am going to put it down to after affects of having had a seizure coupled with my medicine which is well known for it's mood altering capabilities! I take Keppra and the going word these mood changes is Kepprage. Which I think is brilliant!

There's probably a million more things that I've forgotten to ramble on about...

OH and I got a job!!

Anyway despite it not being the completely restful experience I was hoping for I still had a nice week hiding in deepest rural Devon with our many pets!One day I will figure out how to get the massive stack of photo's off my phone and onto my laptop... but for now here are a couple of the animals that share our life :)

Blood tests and Exhibitions.

I had some blood tests today as a result of a doctors appointment I had a week ago. I officially look like a pin-cushion but then again there's no change there. It's pretty rare for medics to be able to get blood from me on the first attempt. I'm either in some sort of melt down from seizing and the shock that follows or my veins just seem to shy away from needles. In any case it makes for a very painful event every time I need them done. Today they had to make three attempts. One on each of my inner elbows both of which needed that jiggling thing they do when they move the needle under the skin to try and induce blood flow (this always requires a certain amount of wincing and generally trying not to cry...) the nurse whilst doing this even said "look, it's in the vein your blood just isn't flowing"... great... and what am I supposed to do about that? She was lovely though and tried her best not to hurt me too much. Eventually on the third attempt on the back of my hand the little viles started filling up. I was expecting this to be the most painful attempt of all, as last time they had to use the back of my hand was in Emergency major's in hospital. THAT was AWFUL thinking back to then everything seems a bit of blur now (not surprising..) but I can remember clear as day that particular blood work session. Yuck!

Anywho they got what they needed today and before I'd even sat down with the nurse she told me my doctor has requested to see me again next week. I have no idea what for though... usually they only see you for anything to do with the bloods if there is something abnormal in the results. But it would seem he wants to see me anyway. Fabulous, yet another appointment to look forward to. 

Putting that lovely morning to one side I have just got back from a Photographic Art exhibition opening put on by the current second years on the Photographic Art course I'm currently on leave from. Fingers crossed it's this group of students that I will be joining in September to resit my final year when they start it :) It was nice to wonder around looking at their work. It brought back memories of when we did the same thing last summer. It's been a lovely summery evening here today as well which added to the nice atmosphere with people milling around looking at the variety of work and chatting away with one another. :) If I have a little more energy tomorrow I might pop back down there to look around again and take a few snaps. 

I have to sigh though because I had been planning on going into town with them afterwards for the after party but I was just to tired and really couldn't cope with drunk people while I'm busy trying to stay upright completely sober! So decided to come home instead and drink tea. (Which I secretly don't mind at all... hehe)

And with that said I'm off to turn my brain off for a while :) X

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!