Race For Life 2011 - Completed!

Today on this very sunny Sunday we completed the Race For Life in aid of Cancer Research UK! It was so so good, thousands of people attended the race in Cwmbran making a a vast sea of pink :D We could not have asked for nicer weather either! So we slapped on the sun cream and off we went...

Cancer Research UK Website 

Brilliant day for a brilliant cause! Definitely up for it again next year... and the year after that!

UWN Graduation Show Opening

University of Wales, Newport photography graduation show opening 2011

Ok so this is a bit delayed as this actually took place on last Friday the 17th. 

The opening night was so lovely and everyone had a proud smile on their face :) There was an incredible atmosphere and brilliant buzz about the place. The standard of work and vast variety of subject matter is incredible and very much worth a view :) Everyone should be very proud and I wish them all the very best for the future!

 

 

EEG Investigation + Giggles

What's an unusual way to start a Wednesday?

Mine today was attached to a computer via electrodes allowing my brain waves to be read. Yep I had an EEG this morning. Here's a link for more info :)... electroencephalogram 

I'll explain how it took place...

I was taken to a little side room in the hospital and sat up on the bed. The nurse measured my head, marked certain areas with a pen and attached what I think she said was 26 electrode pads to my scalp. They do this using abrasive gel. It was kind of like a really thick hair gel. After this the bed is adjusted so you can lie back further and given a pillow. The machines are checked to make sure all electrodes are placed correctly and conducting well. The lights are then switched off, you lay back relaxed keeping still with your eyes closed and the test begins.  Your eyes are closed during the most of the test with the nurse telling you whether to open or close them at various intervals. This particular EEG was to last for 30 minutes and was videoed. During this time the nurse instructs you to do various things. Including opening and shutting you eyes, deep breathing and also be shown a flashing light at various strobing speeds. Once the session is over the nurse will detach all the electrodes and wipe away as much of the gel as possible. The results are then sent off to the neurologist to be examined. The whole appointment takes about an hour. Done.

OK so serious part aside... despite being rather nervous about the whole thing it was surprisingly funny.  I mean come on check out the photo...The nurse was really lovely and chatty which was nice plus I was able to take a friend in with me as well which of course made the whole thing a little less stressful. 

Now I don't know what it is but when I get nervous I just cannot stop giggling... which made for a very funny laughing session between the three of us. It was so hard to try and control it and lie there doing as I was told that's for sure! Better to have smiles than tears though :)

There were a few things I had to do during the test including 3 minutes of deep breathing. This was a very strange thing to do while your lying on the bed in front of your friend and a nurse... and as a a result was beyond funny! My lips where tingling by the end of it which I'm assuming was due to the lack of oxygen. OHHH and then there was the strobe light. I didn't like this bit AT ALL. Now being into photography I'm used to flashes and I've been blinded a fair few times in the studios but this was just horrible. It was so bright and very close to my eyes... by the time the flashing was over my eyes were aching and trying to see straight was a bit of an issue... I can't remember how long this bit of the test lasted but its seemed to go on forever :/ but hey no seizures that I'm aware of during that so woo!

And the whole thing was being recorded on camera...nice!

So as much as lying in a strange room on a bed in front of two people watching you, with your brain attached to machines TRYING not to laugh was very surreal, all in all there really wasn't that much to be nervous about. And apart from leaving with a headache and hair like I hadn't brushed or washed it for weeks it was one of the least painful tests to be had :)

Now I've just got to wait to hear from my neurologist (yay..) I'm due an appointment very soon anyhow so hopefully it won't be too much of a wait.

Monday's Crash.

I well and truly crashed on Monday. Energy wise rather than seizure wise thankfully. All though I think it was pretty close.

The day did start fine. I got up nice and early to a lovely sunny day. Went for a walk down the road to the shop to pick up a few bits of food. After spending the morning on the phone to various people for a few different things for my job and trying to organise my stuff in my own life. I started feeling really tired and fuzzy. By this time I was upstairs in my room. I'd eaten a couple of hours before so thought maybe I just needed a quick snack and a cup of tea. But as I stood up my balance was completely off. There was no one in so I thought it best to not try and get down stairs and just lie down instead. And that was that. 3/4 hours later I woke up on my bed still feeling very very tired and with a little headache. The rest of the day I had very little energy so just bumbled around my room fixing little things or just lying on my bed staring at the ceiling. Plus watching some cheesey TV... not the most exciting way to spend most of a day.

I'm going to put it down to over doing it over the past week or so. I know I need as much sleep as I can get or at least rest but I well and truly abused that fact. Although to be fair most of it was with good reason... I've also had a weird throat/chesty thing going on along with a cough. I haven't been feeling 'ill' with it as such just every time I go to lie down to sleep at night I start coughing and my throat gets sore and in turn I can't fall asleep easily and even once I do it's very disturbed because I end up waking myself up coughing. Now it carries on into the day as well. I'm hoping it will just go away soon. Definitely giving my chest and stomach muscles a good work out.

The weather did cloud over and rain for the rest of the day though which strangely made me feel better... No reason to be jealous of people enjoying the sun that way! Typical British summer for you though :/ More sleep is in order now though :) 

On a side note... I have an EEG investigation on Wednesday. I'm a little nervous but strangely more intrigued. I doubt I'll be saying the same thing just before I go in...

Home again

I've been staying in Cardiff for a week (apart from one night) this was for many a reason. From hospital stuff, to training courses to having a good bit of fun! It was hectic but good to be out and about. Today I'm back at home this was my day to catch up on the usual things like tidying, sorting through photo's, emails, oh and SLEEP. Trust me after all this running around the word tired doesn't even come close to my current state... I succeeded in crossing off almost everything that needed to be done today though woop. My house mate's parents were up for her graduation show this weekend and with it being Father's Day today we had a rather delicious roast dinner for the occasion. Yum!

Here's a few of the mini adventures that took place...

How beautiful is this lake? It's in Roath park in Cardiff. The sun came out so we went and hired an rowing boat out to have a nice trip out on the lake. It was such a nice way to spend some of the afternoon :)

 This is a photo I took when we went along to what I'm told is the University of Cardiff's MedSoc raft race which has become and annual tradition :D How awesome is that?? The people I was staying with all took part in there rubber rings :) There were some pretty amazing and colourful rafts... funny stuff. It must have been freezing. I opted for the "I'll stay on the bank, take photo's and well and truly stay dry" option! Brilliant to watch though...

Ohh we also went to see the Hangover 2 at the cinema... it was HILARIOUS! A very silly film well worth a watch if you fancy a giggle :)

Friday and Saturday were the Wheelchair Sports Spectacular I was volunteering as a photographer at. Amazing event! 

It was a good week and after my day off from life today tomorrow it all kicks off again starting with finalising all the details of my new job woop! Plus I now have another list of things to get through tomorrow from people to ring, emails to send more life things to sort and a busy calender for the rest of the week including more hospital stuff.... No rest for the wicked eh? X

Long awaited MRI

Yesterday after waiting since the beginning of November having been lost in the system again I FINALLY travelled up to hospital for my MRI scan. 

I knew what to expect in that I've had one on my wrists a few years ago. But it was still nerve wrecking plus this time it was on my brain which somewhat ups the anxiety levels... I new it was going to be loud and uncomfortable. These scanners can't half make a racket. BANG - BANG - CLUNK - BANG - BUZZZZZ. Then there's the vibrations that make your whole body shake while your lying there. They lay your head back into this hard plastic brace type thing, attach a metal casing thing over your face and head so you look like your someone out of a cyber movie and then send you off down a close fitting donut shaped tube. Very surreal. I was gutted to find that I had forgotten to pack the CD I wanted to listen too whilst the scan was taking place :( so had to put up with some cheesey old songs that I could barely hear anyway over all the noise the scanner makes! It was kind of like standing outside a night club where you can hear the booming bass coming from inside. OH but there was a plus point... I got to wear my own clothes this time woop! Last time I had to wear scrubs (which ok I found awesome..) but the other option is usually the dreaded hospital gown :/ I don't know what it is with those things but I can NEVER do them up properly. Fact. We even tried to get them to let my friend who just so happens to be a medical student in to watch and learn, but it wasn't to be :(

I was being escorted down the corridor to the little room I remember mumbling half to myself and half the nurse what happens if I have a seizure... she told me not to worry. Easier said than done.. I was about to have my head strapped down with metal and placed in a huge yet rather snug fit metal tube. Would have made for some colourful bruises if I'd have had a seizure. Fortunately I didn't :) Still it's a thought that never leaves my mind.  

It never ceases to amaze me that as soon as your not allowed to move an inch your body seems to conjur up any excuse for you to need to move. From itches to coughing and just general twitching. Yet as soon as your allowed to move freely again they dissapear... Unbelievable!

Anyway I can't decide if I feel relieved or not. I mean of course I'm finally glad to have it over with. But of course now there's always the... well... what next...? I'm not sure when I will get my results. Thankfully I don't know of any particular reason to suspect that there may be something particularly awful lurking inside my skull. But no matter how hard I try I seem to end up thinking "but.. there might..." I suppose all I can do now is wait. I'm back into hospital again next week for an EEG test, and then due to see my neurologist so I guess I will find out then. Luckily I've got so much going on in life at the minute so I have plenty of distractions :)

Well it's over and done with for now. If you or you know anyone who needs to have one done for any reason I can tell you it doesn't hurt, though it is scary because I doubt even the hardest of us wouldn't at least be a little nervous at the prospect of a brain scan but at the end of the day you will wonder why you were so nervous in the first place. :) And it's VERY loud and an intense situation to find yourself in so DO NOT forget your favourite choice of music to let you zone out to somewhere else!! 

And with that said I'm off to distract myself some more.

UWN May Ball 2011

It's taken me a long time to actually post about this but life's been busy!!

Friday the 27th of May was the night of my universities May Ball. It was AMAZING. It was so nice to dress up and go and party the night away with friends :) We had live music from The Hoosiers, Tinchy Stryder, Funeral for a Friend and the mighty Chase and Status!! I LOVE Chase and Status so that was particularly epic for me! It's been along time since I've been somewhere I can forget everything going on and just loose myself in the bass. Good times!

 

Now I'm not usually one for posing but I love the style of this dress so I couldn't help it hehe. Now my mission is to find another reason to wear it :D

Disability Inclusion Training - Cardiff

I'm currently part way through a 4/5 stay in Cardiff. I have to go into hospital which is closer to Cardiff than it is to where I live so thought it would be better to just stay in Cardiff with a friend *Thank You!!!* Yesterday I spent the day taking part in a Disability Inclusion Training course. I was offered the opportunity to take part in this course as a compliment to offering my time to be a photographer for an event called Wheelchair Sports Spectacular with Disability Sport Wales taking place on Friday and Saturday I can't wait for this!! Anyway back to the course.. it was so good! I'm so glad I took up the opportunity :) I've learnt so much from legislation to helping to tackle physical obstacles that may be faced by someone who has a disability. Very fascinating and enlightening indeed! The morning consisted of all theory based learning which involved a lot of teamwork and scenario based roles and how to overcome social attitudes etc. The afternoon was three hours of practical. We did everything from learning how to adapt various sports and activities. Incredibly interesting and fun! We all had a go at trying out various sports whilst we were at it including volleyball on our knees, wheelchair basketball and rounders :) I used to love playing volleyball in school brought back some memories! 

It was so good to be in an environment where everyone just got with on another not matter who we were and played game after game whilst learning at the same time. What could be better!?! 

I would recommend the course to anyone DIT course (Wales) this is the one I took but there are plenty of different ones around the world :)

Any who today the friend I am staying with is away studying at hospital so I'm just being lazy and hanging around her house catching up on life emails phone calls etc fun fun and maybe the odd nap... but I am also playing around with her guitar teaching myself some chords :D! I love it! I do have a guitar myself but I haven't plucked away at the strings or AGES I've never learnt it was just something I could teach myself whenever I got bored. It's sat gathering dust but I'm seriously considering getting it re strung and slowly teaching myself again. It's very therapeutic :) 

Monitoring

This morning I had a doctor's appointment requested by my doctor himself. We discussed the results of the blood tests I had a week ago. Pretty much everything is at relatively reasonable levels which is awesome. My kidneys however, aren't performing as well as they should. I now have to be monitored regularly in terms of blood tests and regular appointments with the doctor. But that's ok :) better than them saying "this is what's wrong with you and there's not much we can do" or "you need some more time in hospital". I just have to keep drinking a ton of water and absolutely no alcohol. I hardly ever drink anyway but I did have a wee bit of party session the other night... a sort of celebratory night for a couple of different reasons :) Although I did have a fair few I didn't drink THAT much but it totally knocked me off my feet! I forget how much the medicine can affect someone.Thank goodness my friend was with me I honestly thought I was about to drop to the floor in the middle of the club. Which was an awful feeling as I don't usually know I'm going to have a seizure. I remember sitting down at the side of this club and everything going blurry and speeding up and incredibly claustrophobic which is something that never usually bothers me. Needless to say we got out of there pretty quick. I really honestly think I would have 'gone' if I'd stayed in there much longer.  Non the less it was a really really good and well needed night out with friends :) 

I've also lost more weight (without trying to) over a stone in about 5 weeks. This is another thing I now have to have monitored regularly just to make sure it doesn't dip too low but there's a long way before that yet! It is bothering my slightly how much it seems to just be falling off me all of a sudden :s but again my bloods don't suggest anything too dramatic so it's good for now :) Never did I think I would  be someone that has to eat more to keep weight on. Ever.

My MRI is less than a week away now... DEEP BREATHS!! 

Keep smiling everyone and stay healthy!! 

X

Music from the heart

Forgive my non existent musical terminology but wouldn't it be amazing to be part of an orchestra?!

I've just been rifling through my music collection. I have everything on there from drum and bass to chillout and from rock to jazz. If I leave my media player on random some of the most random music can be heard! This it what I just did whilst pottering around my room. And the absolutely stunning sounds of the film Inception's soundtrack started playing. It's funny what some things do for people but I just stopped, sat down and listened to the sounds. The power that orchestra's can give out is fascinating. So now here I am having left what I was doing to sit and go through all the more classical side of music I have hidden within my collection, and it's got me thinking... along with bringing back some memories..

There was one time in my life that I was part of a concert that was truly inspiring. It was in my second to final year at secondary school in 2004. The year a devastating tsunami hit Thailand. The music department of my school decided to hold a tribute to all those affected. My music teacher decided on Gabriel Faure's Requiem. I was part of the school choir (it most definitely is not a well known fact I can sing soprano... Shhhh it's reserved for very special occasions :p) and we joined the school's orchestra to perform all seven movements of the piece. To be part of something like that was incredible.

I also used to learn classical piano. I LOVED it I really, really did. I was relatively young at the time and unfortunately there came a time when my family couldn't afford my lessons anymore and ended up selling our piano. I can still play the odd piece and when I just happen to be walking past a piano in someones house or something I always have an overwhelming urge to sit down and play with the keys. My youngest sibling who is 10 years my junior now learns which is nice to see/hear. I always thought it would be lovely to start learning again. Apart from scales and sight reading, skills that have been engraved on my brain from a very young age, I've pretty much forgotten everything else I learnt. 

I would have to choose a particularly expensive instrument to love... Maybe a string instrument would be interesting to try... OHHHH the Cello... that would be fantastic, Yo-Yo Ma <3 siiiigh may be one day :) Need to work on my short term memory first I think!!

You see on TV people playing with such passion that it's as if they're in their own worlds. Totally absorbed. How that must feel I would love to know. I don't suppose it's something you can truly explain though :)  There is something quite incredible about music that can induce emotions from deep inside and literally take your breath away :)

Here's an incredible example of perhaps the most recognisable movement of Faure's Requiem - Pie Jesu :)

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