The Rush

This week mainly involves running around the city photographing installations and completing mini projects for a huge photography festival that opens tomorrow here in Cardiff called Diffusion. It's going to be amazing, one venue in particular that I visited yesterday to take some installation shots is incredible and suits the work inside down to the ground. I'm enjoying the rush of it all in both the energising artiness way and the meeting of tight deadlines for the festival at work. 

I'm finding it hard to keep up a little with it all though and I seem to be constantly having to ask questions which is annoying me and I'm just hoping it's not annoying the guy I'm working on a project for one particular artist Structures of Feeling - Geoff Charles with too much..  Even little things like copying captions written in Welsh from one piece of paper onto a document on my laptop for one of the installations seems so difficult. I don't think that's entirely my brain though but a mixture of rapid deadlines, not being entirely sure what the end product will look like and tiredness. 

I love being a part of all the buzz though even if it is beyond tiring. The hours I have been and will be working this week are long... which of course means a huge risk of increase in seizures. BUT must stay positive and take in all the happy proactive arty vibes that are all around! Looking forward to getting all the work done and attending the opening.

An early night tonight is definitely needed first though!

A New Seizure Type?

So work yesterday was interesting...

The afternoon was spent with me in sick bay being watched over by one of the nurses. I really need to learn to listen to my body and trust my instincts. I'd been feeling ok during the morning but told my housemate before I left for work that I kept getting a quick but intense tingling feeling in my forehead. To be honest I didn't think that much of it because it wasn't the usual feeling I get as the warning that rarely comes before a seizure. I went to work anyway felt fine on the journey there and for a little while while I was searching the library for some documents but when I took said documents up to my office I began to get the same feelings back again more frequently than during the morning. No one else was around at the time so I figured it would be a good idea to go and visit the nurse and ask her to sit with me for five minutes to see if I was actually doing anything when this intense feeling hit. It turns out I was. She was sat next to me on the bed and as I felt the feeling hit me I told her and bam next thing I know she's holding me up so I didn't fall forward onto her. It was very quick and as if I lost all the strength to hold myself up for about a second or two. It's a good job it didn't hit any time I was standing as I reckon I would been on the floor! 

I don't no where this has come from or why but I think if it happens again I need to try and catch it on video for future reference. These "events: carried on for about half an hour after taking my rescue medicine Clobazam. I lay down and snoozed on and off in the medical centre for a couple of hours with the nurse checking in on me. There was no way that I could get home as usual on the bus so I had to call and ask a friend to come all the way over to my workplace to pick me up and give me a lift home. Thank  goodness I have amazing people in my life! The usual constant tingely numb feeling crept in after a while and I automatically feel really agitated and edgy when this happens because I'm waiting for a big seizure to take place so another dose of Clobazam was in order I can take a maximum of two doses in one day if needed. This did the trick thankfully and knocked the fuzziness out of my system and sent any other seizures packing. Phew!

I'm hoping this is a one off because I really don't think I can cope with another seizure type. These ones are hard enough to control. I'll just have to see if it happens again!

Positive catch-up

I took a day off work yesterday to try and catch up on some rest it was definitely needed as I've slept most of the day. It's been a very hectic few weeks and one of my beautiful housemates left home for good on Tuesday night :( very sad times so I thought I'd write a positive post about all the good things that have been happening recently with a few piccies here and there. This house has been transformed over and over again into whatever party was coming up next. In one weekend it was decorated for a 10th birthday party one night followed by a Henna party the next night, make up and wardrobe for lots of people the next day followed by another day very similar the next. With friends and family staying and accommodating both along with videographers, photographers and make-up artists!

A few weekends ago one of my closest friends got married. I still can't quite believe it I mean she's my age it's seems so surreal and another true sign that we are all growing up and supposed to be adults!! Saturday was a beautiful traditional quiet white wedding in the registry office of City Hall that was followed with an Asian reception with hundreds of people, colours and shining jewels on the Sunday also in City Hall although this time in a HUGE room. People from all over Britain came to join in the celebrations including close friends and family which was lovely.

Her Mehndi was the weekend before which involved a big party in a community hall here that we all decorated out which lots of colourful fabrics, hand decorated jars and a stunning stage was set up to greet the bride to be. It was a fun night with lots of dancing and delicious food to be had.

This last weekend has been just as exciting too. It was a housemates birthday last Thursday so we gathered friends and went out for a nice meal Friday night to celebrate. It was also her last weekend in the house so we tried to fit as many "traditional" house activities that have become the norm for us as usual. From eating in regular haunts to playing sharads and singing and dancing along like crazy fools to old school classics in the evenings (but shush not many people know about that...) Saturday the sun was shining so we went on a little adventure to a local place to here known as... Barry Island!! It was such a lovely day spent walking along the beach, lazing around on the sea cliffs in the sun, stuffing ourselves with chips and ice cream followed by an epic round of crazy golf and hitting the 2p slot machines on the sea edge. I also got a sweeping glance at the world of driving again with a go in the bumper cars at the fair!

Sunday... I woke up to find a note on my door explaining that Sunday was to be renamed as my "fake birthday" day. Basically, nearly all of my housemates will have left by the time my birthday rolls around next month so they had decided to throw me a day of celebrations a month early so we could all be together for it! How CUTE is that?!?! It really was a lovely day :) we went to see the film Oblivion at the cinema followed by a huge burger at Gourmet Burger Kitchen (NOM.) then went bowling which I haven't done in YEARS and was so much fun!

I received some really lovely gifts too from a gorgeous bag (which is know officially my favourite handbag) some beautiful vases that quickly became useful for the fresh flowers I was given (that I absolutely adore at all times!) along with cosy socks and slippers and lots of cute little presents like candles and pretty notebooks. I even have my very own pair of theatre scrubs... can you tell I've been living with doctors for a year?! LOVE.

I'm REALLY going to miss this lot!


x

Those terrifying words.

Brain damage.  Two words I'd never wanted to hear. 

They were said to me by my consultant on Monday while I was sitting in his room. The problems I have with my vision have been caused by damage from seizures or one of the many knocks to the head I have received as a result of a seizure.

It's taken me a while to get my head around it to be honest. Usually I'm quite good at taking on board rubbish news and for a while I took this on ok. My youngest sister and my closest friend were visiting for the weekend and came with me to my appointment so we just discussed it for a while afterwards. I thought I was ok with it and after leaving the hospital we went for a calorific meal to take my mind off it (typical me) then just hung out during the afternoon chatting and trying to get over our hectic weekend. Then they went back home on the train and pretty soon after they had gone it all hit me like a punch in the face. Thankfully it's not degenerative, it will only get worse if a knock on the head irritates it or continuing seizures damage the area more. Another waiting game, I don't use the word often but I hate the waiting. I'd rather just know any facts outright be they positive or negative.  

I'm seeing my consultant again in June after I have a driving field test to see if I can ever drive again. Oddly this scares me more than anything at the moment, but that might just be because I'm actively refusing to think to deep into matters at the moment. I don't think I can face reality just yet so I'm distracting myself with work, watching crappy TV, tidying... ANYTHING. 

I've been referred for another MRI as well but who knows when that will happen. I guess it's to see if any seizures between know and then are causing further visible damage. 

Anyway I'll switch my smile back on and keep trudging through what feels like treacle in an effort to carry on as usual. Bare with me if I'm a little slow on blogging, I have so many positive things to write about but feel a little deflated at the moment. But hey, I might find it another useful distraction! 

Epilepsy, the media and I

It amazing how powerful the media is. Being involved in campaigns like the "everyone knows someone" campaign with Young Epilepsy etc in aid of awareness for Epilepsy via the media is an amazing experience to go through! In one day alone I appeared on the national TV (here's a clip from my interview on ITV's Daybreak) and talked on BBC radio, I still can't quite believe it. I wrote a post on the experience. 

Since then various other articles have come up with little interviews and stories along with my face pictured with it, and in all honestly I love it! I like to think that I'm doing that little something to help spread the word about Epilepsy to the outside world... every little helps right?

One day over Facebook a friend of mine messaged me saying she'd just seen another article  on CLIC's website which included me also. It's funny not knowing about these things, finding out looking it up and seeing my photo staring back at me! 

The University of Wales, Newport where I studied and now work also picked up on the news (thanks to an old tutor of mine who was there through Epilepsy's unexpected and truly unwelcome entry into my life) and wrote up a story about my experience. They sent out a bulletin article to all staff... how exciting!!! I'm surprised how many people I happen to have to talk to in my job and they bring it up along with a story of how they are some how related to the topic of Epilepsy. The other day I found out it has also been printed in their printed graduate magazine they send out to Alumni, friends of the university and anyone else who is interested.

One last one that I found out about yesterday by someone in a Facebook groups seeing a post of mine and commenting to see if I was the Jade they had seen in another article... turns out it was.. I had no idea! All Together Now Magazine

x 

Representing purple power!

There's an absolute ton going on here at the moment. I can't wait to get it all down but it's trying to find the time, right level of concentration and feeling awake enough all at once to try that's proving a problem! 

Here's a little photo as proof of hectic going on from a Mehndi I helped organise and attend last night for one of my closest friends who is getting married this weekend coming!  I'm with Rasha one of my super amazing housemates! 

Notice the purple power representation?! The colour of Epilepsy being purple I simply had to choose that colour for my outfit :D

Right must dash to bed, chow! x

Recent Hospital Appointments.

I had a neurology appointment last week. It was the first one on the NHS with my new neurologist after seeing him privately in desperation back in December. This appointment was brought forward because after increasing my Vimpat I reacted to it badly by coming out with a rash and feeling very poorly causing alarm. Photo's taken of the rash were printed out and put into my notes for future reference. I can't change my medicines at the moment because my system has become sensitive and it might prove dangerous to change anything without  further details. Scary thought. I've been placed on the waiting list for a further 5 days in hospital to have a Video Telemetry observation done. Yay. He asked me to make sure that the Ophthalmology department send over any information they find with my missing vision areas to him as soon as they have it for him to review also.  I can finally come off Gabapentin (that I was using as a painkiller) gradually in case the dreaded constant headache comes back. (SO GLAD!!!) I can't really remember much more of what was said after him saying he wanted me back in again to be honest so I'll have to wait for the report to come through.

Yesterday I had an orthoptic appointment at the hospital because of a problem with my peripheral vision in the top left area. This was picked up in August when I spent 10 days in hospital with a crippling head pain and seizure after seizure. Nothing really got resolved apart from my seizure levels returning to normal and being doped up to the eyeballs on the painkiller and ex-AED Gabapentin. In an attempt to find the cause to my headache myself I went to to an Opticians to see if it was anything to do with my eyesight  again they picked something up and sent me to my GP with the results. Nothing was done AGAIN. I then had a private neurology appointment out of desperation in December in which he again picked up the problem with basic neuro function tests he performed and wrote to my GP to request a refferal be made again. He wasn't overly impressed that I still hadn't seen anyone before our meeting last week but I told him that I had my appointment this week.

During the appointment I had the standard visual field tests done where you put your head in a box machine type thing and click a button every time you see a dot of light flashed onto the screen in front of you. Pretty much the same as in a an opticians only longer. After that I then had a "driving" test where both eyes are uncovered. I know for a fact I missed a couple because my eyes where getting fuzzy and I was distracted by that and didn't react quickly enough to press the button. I told them though. When I was leaving I asked the rather glum nurse if there was anything on the results that she could see... the response... you can expect a letter from one of our consultants. That was that, so I'll just sit and wait some more. It's all a bit bizarre as I've always had perfect vision in fact I distinctly remember my very first neurology appointment the neuro saying she'd never seen such clear eyes got all excited and even got the student who was there to take a look. :D 

I'm worried, with photography as my passion and living my vision is EVERYTHING to me. I'm not going to freak out just yet, not until I see a consultant and have everything explained to me in more detail. I did a little research and asked some people if they have had any problems with vision in relation to seizure damage and/or medication side effects and some have said they have been caused permanent vision issues while others have said any problems they had have resolved since changing meds. So I'll have to see how it pans out for me.

The world keeps spinning so I'd better carry on :)