Neurology Appointment

My clinic letter arrived in the post yesterday and it reminded me that I hadn't written about my last appointment with my neurologist. It feels like it was ages ago but actually it was only at the end of March.

It was pretty standard really. Go in, explain whats been going on, show some evidence, leave.

My friend came with me to help explain what happens during my seizures which is a massive help. Having someone else's point of view is very valuable in determining exactly what happens. The best I can explain myself is the random patches that I remember which is next to nothing apart from odd sensations in my head and hands and the pain, aches and fuzzy confusion after. Said friend has also been with me when I've ended up in hospital and I had seizures while we were there. Listening to her talking with my neurologist was quite uncomfortable. It is still very strange to hear someone talk about the things I do without me remembering a single thing. For example during some smaller seizures I would look awake and like the seizure had finished and she would try and get me to talk but I was lying there completely unresponsive.

I also showed a video that another friend had captured of me when I was stuck in what I call "partial- seizure mode". The write-up of the video in the letter just basically explains what I do like eyes massively deviating to the right yet my left hand and arm does some strange jerking and twitching all whilst completely out of it. The neuro does point out how it was rather a long time to be in that state. There's not really much more I can say on that matter...

After talking for a while my doctor she said that she was going to book another EEG as the last one I had was about a year ago and thinks have changed a lot since. I am also to be booked in for a few days of video telemetry in hospital. Hopefully they will throw up some clues as to where to go next. Thankfully I'm not having to change any of medicine at the moment because she wants my tests done whilst I'm on my current meds (Keppra 2000mgs and Lacosamide 300mgs). Good news as my degree is coming to a close with some very important stuff going on to not be swapping or changing doses will mean less stress and sickness.

So now all I have to do is sit and wait for the appointments for my standard EEG and video EEG and hope that they don't fall on any of my deadlines!

A message from my sister.

How cute is this... my sister wrote is for a project in school called "my special person"...

"My sister Jade has had a big impact on my life. We share a lot of hobbies like photography, which she is now studying at Newport uni and is in her final year. As we've grown up we've always been together exploring with her friends the river and in the fields. My sister is 22 and nearly 23 and she is smaller than me, every time I see her she is always complaining or moaning because I'm taller than her.
Two summers ago she fell down some steps at home in Wales (she has three homes) while she was alone at home and knocked herself out. When she finally came around she didn't know what had happened. she had dried blood down her face and was carrying her car keys with her. Luckily she had her phone on her and was able to ring me an my mum and tell us what had happened. When we arrived home she had dragged herself into the house and out dad was there. Me and my mum got in to find her inn the sofa with blood still over her. At that time we didn't know she had Epilepsy and after many visits to the hospital she was finally diagnosed with Epilepsy. She's been in and out of hospital ever since and had to drop out of her last year in uni, but after going against out advice she re-sat her last year and is back on track with help from her uni.
Since that summer our bond has become stronger and and every holiday I'm with her and I'm grateful of it! 
I love her sooo much!"

Her teacher was very pleased with her response the project and commented that it was lovely to know we have such a close bond. :D

It's little things like this that make life sooo amazing isn't it? I cannot wait to see her next time I travel up there!!

X 

Mail.

The post man has just delivered the mail and lying on the floor was a letter addressed to me from the university. My heart stopped for a moment when I saw it. I opened it though (holding my breath) and it couldn't have been a more welcomed letter to see at the moment. My dissertation had been sent to the student affairs panel and it has been agreed that the late submission penalty will be lifted. 

Thank goodness. I got pretty poorly and hospitalised a couple of weeks before the original deadline for the dissertation submission and due to that was not able to finish in time for the hand-in date. They slash your mark down for handing in late so for this not to happen is a BIG relief. Given that my writing standards aren't exactly brilliant anyway anything towards a half decent mark is very much needed.

I actually didn't realise how much it had been playing on my mind... needless to say I can't stop smiling! 

Plus along with the letter was this months copy of the British Journal of Photography (yaaaay) another distraction from uni work... but a relevant one so you know... I'll just have to give that a read :) 

Simply inspirational :)

Heard about this the other day. A women who chose to run the London marathon to raise money for Epilepsy and ended up suffering 20 seizures during the run yet COMPLETED the marathon. Kudos to here amazing friend who ran alongside her and caught her each time she suffered a seizure and fell to the ground!

Given that a single seizure can feel like you've been run over, or climbed a mountain the previous day... this achievement is truly incredible :)

X

I'm back!...sort of..

I vanished for a fair while there and for good reason I've been visiting various places including both my parents' places. Staying with my dad was nice as I got to spend time with some of my family and friends from up there. Plenty of time was spent outside helping my dad with various things like building walls etc as you do... I did have a few seizures whilst there especially during the night which wasn't so fun... but all in all it was a really nice bit of time away :) Then I went to my mums to do various photo shoots and help out with farm stuff including welcoming baby lambs into the world!!! SO CUTE! 

Life has been so hectic and I have been trying my best to get everything done. The main bulk of events are to do with my university work which involves travelling here, there and everywhere to work through photo-shoots. 

So this has been one of my main area's I've been haunting and will be for a while. It's not so bad though when you have to spend hour after hour printing and editing along as you have either people with you or decent music to listen to. (Plus they have those spinny chairs with wheels on... I love scooting around the place hehe! But Shhhhh we're supposed to be all serious and hard working...) 

The weather has been really rather dull and miserable here too with this being the view for much of the time... and when your photographs need to be taken for a certain deadline and rely on bright sunny days it can get VERY frustrating! Although I do like lying in bed with the window open listening to the rain when I can't sleep or wake up in the night. Relaxing. 

OH I also had my hair chopped off! My hair was shoulder length and seriously struggling to survive alongside my medication... and sadly it just kept getting thinner and falling out almost constantly so after talking with my step mum we decided that I should just go for it and have it cut into a pixie crop. So I did... and I REALLY like it!!! It makes me look a lot healthier than I did (although I still look sickly but I can't work miracles unfortunately) so it's now the "try to look healthier even if I don't feel it" approach, definitely a keeper :) 

Well I still have an absolute ton to get through so I'd best get on... but I'm going to have a nice long nights sleep first as I'm trying my best to stay up right and not have to many of those nasty seizures. Deadlines will not wait for any of that business!!! 

Brilliant news!

I'm moving to Cardiff!!!!!

I got the news a couple of days ago... I've been worrying for a while about where I will end up after my rent runs out at my current house where I'm living while I complete my degree. Some people choose to move back in with their parents. To be honest I wouldn't have a problem with that but given that both sets of parents live on farms in the middle of nowhere it just wouldn't be feasible. I can't drive anymore so getting a job or even getting out seeing friends is really very hard. 

Anyway so there I was silently stressing about what would happen next in my life, when I popped over to Cardiff to visit one of closest friends house for the night. While I was there the subject came up and it was mentioned that the house she lives in has three bedrooms becoming available for the next year and would I like to move in. At first I just thought "yeah that would be lovely..." not taking it to seriously... but then over the next couple of days I began thinking that actually, as well as really wanting to move in I had to find someway of making it happen. So I told them that I was actually very seriously thinking about moving in and after thinking long and hard and ringing various people for advice about money and circumstances it turns out that I CAN make it happen and that's exactly what I'm going to do! :D  

So come summer I will be moving into a house with a lovely bunch of med-school students and one of my oldest and dearest friends BRILLIANT!!! Cardiff is a beautiful city and hopefully I will be able to find a job and carry on my life after uni :) 

:D 

Life is busy!

Be back soon :) X