Time with Family. (mini essay!)

For those that don't know I have two families (Mums and Dads) who I visit when on holidays from uni etc. I split my time between them both and have done for years!! 

I was living with my dad for the summer when I started having the episodes of "finding myself on the floor" and absences. But it wasn't until I'd been back at university for a couple of months that I was diagnosed with Epilepsy. And other than when I went to stay with my mum for a few days when I went to see the neurologist, I haven't spent any time with any family since being diagnosed. Until now. At the moment I'm staying at my mums for a week for Christmas. I must say it's strange. On the surface it's like nothing has changed but theres just a feeling that it's just not the same. It's a hard one to explain unless your in the situation yourself... but I suppose its like they are always sort of watching/waiting for me to have a seizure much like myself really so it's not really normal and 100% relaxed if that makes any sense.. but hey it's very nice to be back for a while though. :D

But unfortunatly I have noticed something thats put a little bit of downer on things. I thought I was beginning to get over the extreme tiredness that came along as a side affect of the Keppra because I had a couple of weeks where I didn't seem to feel so tired during the day and sometimes even not tired at all!! (AMAZING for me!) But I've started to get very tired very easily again, over last week I have just been feeling exhausted! I don't think I've done anything in particular to make myself so energyless. I mean ok so it is a farm so theres plenty of tasks to do like mucking out etc but it's not like im trying to do the lot myself! It is bothering me because trying to keep up with my family is near on impossible at the moment so I feel kind of rubbish when I have to go and 'do nothin' for a while. BUT I'll get over it :)

Anyway it has been a great to see my family and we've had a good christmas!! Albeit an eventful one... we have had no heating in up to -20 temperatures since I've been here, no electricity for a lot of the time although by some miracle it stayed on for all of Christmas day.. come Boxing day it was gone again though and then in the early  hours of this morning I was woken by my family running around the house in the pitch black trying to remember where the stopcock was to turn the water mains off as the main pipe burst resulting in a somewhat soaked house!

I will be going to stay at my dads tomorrow for a week for New Year. Like I said I haven't seen my dad and that side of my family in person since starting back at uni back at the beginning of October before being diagnosed in November. So we havent really had the chance to talk about it all properly... could be interesting...

Theres already been one problem... how to get me and my luggage from my mums who lives in the middle of nowhere to my dads who also lives in the middle of nowhere. No public transport is available (trust me I'd get a train if it was at all possible/worth it I hate the idea of putting other people  out to do things for me). So obvious answer is by car. Then there's the questions would my mum take me to my dads? or would dad come and pick me up from mums? or would they meet half way. But then my mum had to also take my sister back to where she lives and me back to uni at some point so it would be fairer for  my dad to come and pick me up and blah blah blahhhhh basically its all confusing and rubbish and my parents havent been face to face with each other for years which proves a little dilemma in itself!

I can't help but feel bad and if im totally honest like a little child. I gripped hold of any independence as soon as I was old enough and the chance arrived. and I stayed holding tight to it up until when I found out I had epilepsy. If anything this one little dilemma just highlights how much independence has just vanished over night. It's made me feel somewhat uncomfortable with the future.

 Anyway despite the glumness I am really looking forward to staying at my dads from tomorrow as I'll get to see the other family members and old friends :D woooooooooo AND party for New Year (I can't even begin to say how much I need a good session with friends!!!)

XX

Merry Christmas!!

Merry Christmas everyone :D

I hope you've all enjoyed yourselves, spent time with those you love, eaten far to much, Santa was good to you and you've generally had an brilliant day...

All the best my lovelies :)

Jade XX

NSE Awareness :)

http://www.epilepsysociety.org.uk/Homepage 

 Just spreading a bit of awareness of this organisation :) They have been a big help to me and to plenty of others I am very sure!!







XX

The most amazing nap :)

Ok so I just read over my last couple of posts and they sound a bit, I dont know, "strong"? 

So on a lighter note time for a photograph of my little cutie:

 

And I would like to announce that I just had the most epic nap ever. I've woken up feeling not in the least bit tired. WHICH IS AMAZING!!! I feel like I could go for a run or something! 

I sleep a lot lately. A lot for me is a whole nights sleep maybe up to 10 hours sometimes more without waking up. This I can't remember doing for a long long time. Since I was about 12 I always had trouble with sleeping through a whole night.  But despite getting a good amount of sleep I still need to nap during the day and sometimes just one lecture at uni wipes me completely out. I think its the Keppra. I'm up to my full dose  for now (1000mg per day) I have been for a while but I suppose its just a case of getting used to it :)

Anyway this makes the nap I've just woken up from so good!! Well I say nap... I said to myself that I would just lie down for 20 mins to try and refresh my brain a bit ready to read later. Yeahhhh 20 minutes turned into 3 hours... But wow did it do its job. I can safely say I am not tired!!

I know it doesn't exactly sound that amazing I mean its just a nap... but it's the little things that count :D

OOOO I feel some photography coming on so I'd better get cracking!!

 XX

Time.

I had a doctors appointment today. Not because I'm ill but because I had a whole list of questions! 

The main one being: Whats causing my memory and concentration to go so haywire... the medicine or the seizures? 

He said it's more likely to be the medicine because inbetween seizures you should pretty much return to your normal state, but it could well be something completely unrelated... only time will tell.  Thats all fine and I fully understand that with something like this time is a major part in getting the correct dosage etc and to begin to regain complete control of every aspect.  

But the problem is I don't really have that much time when it comes to university work. I can't even begin to explain how much it affects my studying. Maybe  a good way to put it is, I feel like I have to re-learn how to study effectively. Just little things like read in a way that allows me to actually absorb information which atm seems like a distinct impossibility! And when it comes to explaining things like project ideas to people its like everything just flies out the window even when I know, I know what to say... if that makes any sense.. I find it VERY difficult to re-call the simplest bits of information. You can say something to me and ask me to repeat it just moments later and wooosh its gone!! 

Now this is the dreaded question that I have been asked in various different ways by various different people in uni: Have I thought about deferring this academic year and restarting in September?

Its just keeps flying through my brain again and again and the truth is I never have a good answer to give because I simply dont know!! Again and incredibly frustratingly it goes back to the "only time will tell" thing... great..

Anywaaaaay after that little rant...

The doctor was epically cheery :D especially for early on a Monday morning!! He seemed perfectly happy to answer my million questions :) (It felt a bit wierd going to the doctors just to ask questions though..but hey who else am I supposed to ask?)

It's funny how a few words of wisdom along with a big smile can make everything seem so much better.

So big smiles for the rest of the day :D

And to carry the positivity on...

I recieved a little bit more freedom today :) Yep my railcard finally arrived. Woooop!

It's a strange feeling the first thing I thought was "well at least I'm saving money on fuel".

That is something I never thought I'd say!!

Anyway to end that  post which I didn't really intend to be so long... 

I'm due to see another neurologist in the New Year... scary but good news!

XX

My Other Self.

Aside from my project work from I've also been working on some photography about my experience of Epilepsy itself. For now I'm going to use the title My Other Self. If anything its to say that this is something that I cannot control and one of the ways that a tutor and I talked about was how it's like I'm taken over by something. That something takes control of my entire body and tells it to act a certain way, for a certain amount of time, without my actual self knowing until its to late. It steals moments of my life. These moments can be from seconds to minutes to hours. For those moments I am not myself. 

Theres this bit in my house where the stairs go to nowhere. Its just a strange little space that I thought might be interesting to play with. It's a mostly hidden condition so its easy to hide a lot of the struggles it makes. Its a contant struggle and in a way like a weight hanging over you at all times. It gives a feeling of intense urgency and threat. It can strike whenever and disrupt whatever you might be doing. I suppose I feel so drawn to this space because of its sense of displacement. It had a purpose once, the stairs went to somewhere. Now they are rendered almost pointless and somewhat confused in their aim.

So I thought it would be a good place to start trying out ways to capture a 'feeling' if you will.

 

  

So out came the camera and Istarted trying to find a way to explain how I sometimes feel. I'm overwhelmed by something that I cannot quiet understand. This mass of incomprehensible confusion. I'm not sure why I have chosen to keep my legs in focus though. It was just something I instinctively did. Perhaps Its because no matter how  much this condition has turned my life upside down, I'm still living and as much as my life has changed I still have certain things I can focus on and aim towards. It has taken over control of my life no matter how much I wish it hadn't. But not everything. There are certain things I still have control of for the majority of the time. And above all else I know that it could be so much worse.

Anywho I thought I'd share the outcome of my little experiment. There are plenty more ideas flowing through my mind that I want to make visual. And hopefully I will. Strangely it makes me feel better to be able to visualise something that has been floating around in my brain. Its like I get a sense of relief to be able to transfer my thoughts on to paper (or into a photograph in this case ..well I do study photography after all!!)

I have no idea if these ideas will become a part of my university work...I'll count it towards my research at least! :D 

XX

The Before and After.

This is just a bit a experimenting I've been doing for project work for university. The project is still a bit of a hard one for me to explain. I've been looking into altered states of consciousness as it's basis. The space between consciousness and sleep. The seemingly empty, dark and overwhelming nothingness. I suppose trying to find a way to photograph what is effectively invisible. If I were to use myself and my seizures as an example, I would say I was trying to recreate the lost moments of a seizure. I will be doing something in my everyday for and example making a cup of tea and the next thing I know I'm on the floor. I have no idea they are going to happen and remember absolutely nothing from the event. Its literally one second I'm standing and the next im not. I lose all sense of time and memory inbetween the two. I'm looking to find a way to regain these moments.

So one of my little experimenting sessions has been to photograph the very last thing I remember and the first thing I remember when I start to regain consciousness. 

 

 

*Gap I have been trying to fill*

Here I have not yet filled this gap or "missing moment" as I tend to call them. I have simply began the process of experimenting and have at provided a place for the answer to fill in perhaps the simplist of ways.

At the moment this project is not personal. It is not about me. I am just using my experiences as an aid to research. I hope that the overall outcome will be a general look at altered states of consciousness and a way to visualise the invisible.

Anywho this is just one of things I've been looking at and trying out. I've got quite a few of these before and after shots now with the seizures and all and its turning into a sort of diary..  Like I said it's still hard for me to explain exactly what I'm doing which is one of the main reasons for trying out different approaches to the subject :)

XX

These shoes WILL be mine... :D

Navy court shoes - Heels - Shoes & Boots - Dorothy Perkins

 

 Hmmmm maybe it's time for a treat... or an early christmas present to myself... :D

Every girl loves a new piece of jewellery!!

It just so happens that this particular piece of jewellery could mean all the difference should I have a seizure when I'm out on my own.
Yep thats right my Medic Aware bracelet arrived woooooooooo!!!

I can't even explain how a tiny little bracelet can mean so much. Its my answer to freedom... to do what I want, when I want. It's that little bit of pressure off my back when I need to do the simplest things like pop to the shop for milk etc.
:D

I love it and it fits perfectly :D
 
If anyone else would like one of these or knows someone who might, I bought it from:

http://stores.ebay.com/Medical-Bracelet-Medical-Jewelry

It cost about £20 ish including the engraving, some wallet cards to write more info on and postage from the USA  (which is a whole lot cheaper than anywhere I found in the UK!!) Plus this is the nicest design I could find to suit me :D and its a nice colour hehe!

XX

Ok so last night was not a good night. To many things just sort of went ARGHHHHHHHHHHHHH all at once. But after a good nights sleep things seem alright again. :)

All the more reason for my other blog
http://jade-smileoftheday.blogspot.com/
 (I have not got a clue if you can link that into one of the ones you just click on.. but there we are!)

Nothing like a bit of positivity during the day :)

XX

I would give ANYTHING to be back here right now.

Gone are the days where, given that I dont have to be in uni until Thursday, I would have probably got in my car and driven the 200 odd miles just to be there by morning.
But oh no I can't. I'll just stay here then. Joy.

Somebody went to the library!!

 How about this for a pile of books! Despite not exactly being able to concentrate 100% I am determined to make the best of the Christmas break from uni and study study study!

This book may well be THE most helpful book for my disseratation and quite possibly my project too! (at least thats what I'm hoping anyway)
                                                                            
                                                                            
                                                                            
                                                                           






I suppose I should write a post about what my work is actually about but I can't really do that until its all sorted in my own mind... which could be a while at this rate..... Meh I'll get there I hope! (I don't really have a choice..) This is one of the reasons (along with time FLYING by) that I decided to try and focus a bit (easier said than done at the moment..) and just sit in the library and find some books to try and gain some prespective when it comes to my uni work. Which in turn gives me something to focus on :D BONUS!

And with that said I'd better get cracking!!

Have a lovely Sunday :)
XX

How is it nearly Christmas already!?!

With everything else happening in life at the moment and time flying by I seem to have forgotten that Christmas is very very soon.... 

So in a bid to try and get myself to realise that Christmas is in fact just around the corner... some of today was spent wrapping presents and making snowflakes!! 

   

 

I was feeling creative and turned into a six year old for a while it would seem :D







That is all :) XX

Positive Post :D

 So last night was the opening to the EmptyShopProject, Newport Photography Student Show.

Well done to everyone who entered work into the exhibition :D The images were so varied, interesting and beautiful :) I think everyone should be very proud!

The turn out for the opening was awesome too!

And of course a massive thanks to those who spent their own valuable time to install it. *Thank You*

LOVES       :D!!
X

Epic long post for an Epic trip to hospital.

Soooo the whole “wooo I haven’t had a seizure for a whole week” didn’t last very long. I went for a whole 9 days without a seizure only for an epic one to come along on Sunday evening.

So there I was just toodling along with my day trying to persuade myself to get some dissertation work done not long after finally settling down to actually get on with it then BOOM! I specifically remember getting up to leave my room and then the next thing I know I’m on the floor with a sickening headache and somewhat throbbing head. Great.

I’m getting used to how I feel after a seizure now. Usually there’s the overwhelming tiredness, dull headache, very achy muscles from where I have been tensing and convulsing and confusion for a short while. I devised a little routine that I talk myself through to try and regain awareness and send off the confusion.

Where am I?

What time is it?

What time was it?

What’s the last thing I can remember?

Have I hurt anything?

One of the first things I noticed is that it took an unusually long time for me to figure exactly what was going on. And that the headache wasn’t the usual dull fog, it was truly PAINFUL, sharp and focused. I also immediately felt a subtle sicky feeling. My medicine still makes me feel nauseous but never so late into the day. Oh and one of the deciding factors of “this isn’t normal” was the distinct swelling building on the side of my head where I now figure I’d hit my desk on the way down..

Trying to string a sentence together was fun...

So obviously as much I didn’t want to go... A+E it was. Thinking of the old “better to be safe than sorry” routine. This time I had the far less embarrassing journey via taxi rather than ambulance :) by the time I got there I felt more than just a little nauseous but I think I just thought “meh its probably just the way the taxi was driven”. So into Minors I went making sure I told them I was specifically there because I had hit my head NOT because I had had a seizure. I was seen surprisingly sharpish and here was me thinking ooo awesome they’ll check me over, tell me the usual “if anything gets worse come straight back” speech, then I can just go home get a good night’s sleep. WRONG. They did the usual ‘obs’ and found that my blood pressure was high and I was “tacky” which I later found out meant tachycardic. Which I suppose I’ve since learnt isn’t so good when you’ve just smacked your head... and I was sent straight into majors. 

By this time I could not stop shaking, my head felt like it was going to explode and I really did feel very sick. URGH. I think the best way to explain it is to say it felt very similar to a really bad hangover. You know the kind where you will do anything not to move in fear of keeling over...

Anyway yes so I had YET ANOTHER ecg, various neurological tests including trying balance on one leg with my eyes closed and my arms out... that must have looked HILARIOUS especially with the distinct lack of balance I have anyway and the fact I couldn’t stop shaking. And yeah all sorts of other tests for neuro stuff and general observation.  (BP, temperature, Pulse rate etc) 

OH and then there was the blood test...

Now to say the least one might say I am very used to these lovely tests.. .and most of the time they can run the test without any particular effort despite me having notoriously hidden veins... Needle in = Blood out. But oh no not on this occasion. My veins were nonexistent to say the least the poor doctor had one hell of a job trying to get any blood from me. Its safe to say I now look like a pin cushion! Seriously she tried the usual place (inner elbow) found a vein stuck the needle in and NOTHING as she said “It’s like they see the needle and shy away”. Urgh so out the needle came and then she tried to find a vein on the back of my left hand again eventually  after slapping my hand, rubbing my hand and arm, turning my hand blue and forming a fist out popped a vein and once again she stuck the needle in (oh em gee painful) and again NOTHING. No matter how much encouragement my veins did not want to cooperate. The final attempt was made on the back of my right hand again very painful :/ EVENTUALLY she managed to get the blood to trickle into the needle slowly and awfully painfully! My doctor definitely deserves a medal for her effort!!  It’s funny though I have no idea why they even needed to do blood tests for a head injury... maybe it was something to do with my obs... or maybe not... I’m no doctor so I guess I’ll never know. 

Medicine and painkillers a go go!! 

So yes needless to say Monday and most of Tuesday(until I could bare it no more) was spent lying down trying to sum up the courage to stand up for more than a couple of minutes without falling over, not helped by having the room spinning every time I raised my head.. I CANT STAND DOING NOTHING!!!!! Honestly its one of my worst habits I get bored SO easily it’s quite ridiculous.  Spending time ‘taking it easy’ is one of my worst nightmares!!  

I think it’s safe to say I’m getting more and more used to hospitals... well I say used to but I suppose I mean realising just how much I really don’t like them!(Obvisouly I'm truly greatful for them helping me to get better)

It’s now Wednesday and after finally getting out and about for uni ‘events’ today (soooo very needed) I still have a headache but the beautiful thing known as Paracetamol can now control it WOOOOOOOO! Hopefully it will disappear completely in a couple of days along with my lovely bruises which Thank God aren’t anywhere near as noticeable as last time (Thanks to my hair..) :) 

Anyway end of that incredibly long rant :D

 Time to start counting the days of “no TC seizures” up again let hope for longer this time :D!