Finally after first seeing a neurologist back at the beginning of November a letter arrived in the post today telling me I have an appointment for an EEG. Although I have to wait until the 22nd of June to have it, it's here in my hand, written in front of me.

It's been a long long wait. 

I am nervous though... of course... I mean they will actively be trying to induce a seizure to see if anything can be seen from my reactions to various stimulation tests through my brain waves. It's not very likely anything will be found though because I've been taking anti-epileptic medication since November. But we shall see. 

Just another hospital adventure to look forward too. Fun Fun!!

The problem with a wish to travel.

I had an energy less day yesterday so felt a bit icky :( how rubbish ! But it did leave me with a lot of time to think and today after going for a little stroll around the village earlier I feel I need to write it down. So came a little surprisingly long ramble on after some rather deep contemplation in regards to that ever niggling need to travel... :)

I don't know whether its the lovely weather we've had here in the last few weeks or me having a little more time on my hands but recently my need for a change of scene and to travel somewhere has become a massive urge!!! I constantly catch myself day dreaming about disappearing off somewhere. While I was visiting my mum's a couple of weeks ago I stumbled across all my 'travel gear' in a pile in a storage shed. The first thing I did was pick up one of my huge rucksack's and hugged it... not the most 'normal' of behaviours... :) I do have my reasons though! Seeing my stuff brings back some incredible memories from not so long ago and it makes my heart ache with a wish to go back to those times of less worry and plenty of adventure.

I have been extremely lucky to have travelled to some truly inspiring places including Egypt, The Gambia  and the awe inspiring French Alps amongst others with my family. When I finished college after just turning 18 myself and two friends decided to travel Europe for a month. It was one of the most amazing things I have ever done. We each bought an 28 day 'interrail' ticket (which is basically one train ticket for the whole of Europe!!!), booked a flight over to Berlin packed our back packs, bought a Europe travel book and map and went. No specific plans or anything just new we where flying to Berlin and had booked a hostel for a few nights. Where we went after that was completely up in the air until the specific date we where flying back from Prague a month later.  During our stay in each place we visited we'd gather around the map pick a country and figure out when and what train we needed to catch to get there,book a hostel for that particular place and off we'd go. Spontaneity at its best <3 In the end we visited many different countries and fascinating cities. Including Poland, my mum is Polish so to visit somewhere that is well and truly in my blood was amazing. All in all our trip was just incredible. 

One place I'm thinking of visiting for a few days is Paris. I've read quite a few blog posts recently of peoples travels to Paris *Big Sigh* I visited there back in November for the first time since I was a little girl. Paris Post . Needless to say I LOVED IT. It was a university trip we took as a course to visit various arty events that were taking place at the time including Paris Photo! I was pretty poorly at the time so as much as had a really brilliant time my energy levels we're pretty shocking and there was a lot of things I could have done to make the trip even more better but unfortunately couldn't. Now the sun is shining I can just imagine wondering around the beautiful streets and cultured bustling markets.I am extremely lucky that living in Britain means Paris is literally a couple of train journeys or a short flight away. :D Paris is just one place I would LOVE to visit but there are plenty of cities that I have never visited before that intrigue me just as much maybe Rome? I imagine that would be fantastic. 

I also now seem to have a little more control over my Tonic-Clonic seizures which are the ones that obviously cause me the most problems but nowhere near full control so the idea of travelling does ring slight alarm bells... but it can definitely be done!

Of course there are slight issues to deal with... the main one being travel insurance. With this whole Uncontrolled Epilepsy thing hanging over at all times trying to find some that I can actually afford and covers me should the worst happen is a huge task. (That and I need to find some money from somewhere...) Another is that I can't go by myself. I'm not there yet. I can't imagine waking up after a seizure in an unknown city on some foreign country... it's frightening enough in my own  home! Plus I have always been someone to believe that it's always better to travel with someone so they are always there with you to recall memories from that place. It doesn't matter how much you try to explain somewhere or something to someone. If they were not there to experience it they'll never truly understand how that moment felt. So someone to share these experiences with is very valuable to me :)

Anywhooo I don't really mind where somewhere else is I just really need to go! Preferably overseas though... :D I'll carry on day dreaming for now though :)

Race For Life!

Yep so this asthmatic, dosed up on brain taming medicine epileptic with a dodgy hip has just signed up to run the Race for Life in aid of Cancer Research UK..

That's right on the 26th of June I will be running the race taking place in Cwmbran, South Wales, UK 

It's going to be AMAZING!!!!

If you are able I would be forever greatful for any donations and words of support :) Sponsor Link 

Time to dust off those running shoes!! 






Have a brilliant day :)!

A colourful pick me up

Now I'm not a complete girly girl by any means but I do love a bit of colourful nail varnish!! It's definitely serves as an brilliant pick me up when I'm feeling under the weather for any reason and painting my nails is a good thing for me to focus on when I'm laid up in bed recovering from seizures etc.

I honestly have quite a ridiculous amount of colours... but shhh it makes me happy! :D

Bright colours for me bring about a lovely mood in the same way as walking out and about in a summery dress in the glorious sunshine :D

                                    

Update on revised diet

I just got back from a mini health food shopping session so now seems to be a good time to update my little  revised diet thing...

So a while ago I posted on some dietary changes I've gradually made since being diagnosed in November. The main aim I suppose is to balance my blood sugars, significantly lower caffeine intake and just generally eat a little healthier. In turn I'm hoping that these adjustments will have an affect on my seizures in making them less freuquent etc. I don't have any cause for my Epilepsy as of yet, although I have tests coming up I'm not likely to ever find a cause. Anything from caffiene to un-stable blood sugars may affect the brain and in turn seizures. So eliminating anything that could be aiding seizures is all I have to work on :) Plus feeling healthier is a brilliant pick-me-up when your feeling a little low and dosed up with powerful medicine!

PLENTY OF:

• Fresh vegetables
• Fresh fruit
• Fish
• Milk
• Yoghurt
• White meat
• Water
• Green Tea/ Tea in general (literally have to have tea in my life...!)
• Seeds/Nuts

NO:

• Bread
• Sweets (chocolates' more my thing anyway :p) 
• Caffeinated coffee
• Energy drinks
• Carbonated drinks
• Extra sugar on/in anything
• Alcohol (except on very rare occasions)

IN MODERATION:

• GF/WF pasta
• Red meat
• Potatoes
• GF/ WF Cereal
• Fresh fruit juice (although it is naturally high in sugar so not brilliant for sugar levels)
• Dark Chocolate (If I could not eat it all together I would, but I'm not a miracle worker...!)
• Sweet snacks (like cake and biscuits GF if possible)

 These GF/WF coconut macaroons have got to be my favourite sweet treat at the moment.. yum!

I say Gluten Free (GF) and Wheat Free (WF) because there is something in food like bread, pasta, cake that causes me extreme pain in my stomach which is horrible plus that sort of food makes me very very tired and sluggish something I really don't need on top of taking energy sapping medicine.

Now I'm not saying I'll stick to this with military precision... after all I am a student living off not much money, there is partying to do and as much as I'm horrified to say it healthy food is expensive... !! But every little helps and putting myself on a very strict diet will just be setting myself up for failure! Small changes are definitely the way to go :D!

An appointment with Neurology.

I have a little bit more energy today and finally have a bit of mind power to write down how my neurology appointment that took place last Tuesday went. Although I can't remember everything... kind of comes with the territory...

This was the day I FINALLY got to see a neurologist again for the first time since being diagnosed back at the beginning of November.

My new neurologist is really lovely and she spoke with me like the adult that I am stating the facts with medical terminology and taking care that I fully understood everything that was said. Rather than the slightly patronising "you're not a doctor therefore you don't know anything and I'll tell you how your supposed to feel" dribble I've put up with in the past. I have been waiting a very long time for this appointment after being 'lost in the system'.  She was clearly appalled by the wait. After explaining that she hadn't received any referral letters or letters of any sort about my case until the end of February (when my worried mother got in touch with my local health board.. go her!) which was nearly four months after being diagnosed. She was pretty shocked I hadn't had any tests and apologised even though it clearly wasn't her fault.

We discussed everything from the effects of Keppra during pregnancy, to everyday life and the problems I could face with a diagnosis of Epilepsy and of course the seizures themselves. As Keppra is a relatively new anti-epileptic medication there hasn't been a great deal of research done into the drug into things like long term effects. But she explained some of the more scientific sides to the drug for example how they test the suitability for humans on animals when it comes to maximum dosage levels etc. Being a young women she of  course thought it necessary to bring up future prospects of starting a family. Now I'm not planning on having children any time soon but it's very good to know for the future. She told me that to date over 500 babies  have been born healthy to woman taking Keppra. There are issues around contraception and breast feeding etc though but there are ways around that. It's little bits of information like this that make all the difference. Having this condition is something I cannot escape, probably for the rest of my life, which includes taking my medicine for the foreseeable future.

Anywho after a lengthy discussion into all things Epilepsy I was sent there and then for a full blood count including testing for gluten intolerance amongst a million other things. It will be interesting to see if it shows anything up.
I know now that I am soon to have and EEG (link for more info) which is a test that records the electrical activity in your brain via little electrodes that are stuck to your scalp in specific areas. My neuro explained to me that it may be a little uncomfortable as they make you stress your body in certain ways for example breathing really deeply for a few minutes and having lights flashed into your eyes. Basically they are forcing you to experience situations that may bring on a seizure and the results are then recorded in wave form onto paper to be read by a specialist.

I'm also being sent for scans. What scans I'm not really sure I assume CT or MRI? Either way I don't particularly like the sound of this.. I've had MRI's a few years ago when I screwed my wrists up with to much kayaking and martial arts... it wasn't fun. Quite scary actually... very loud banging and being placed in a small tube/ring thing. But like I said I'm not really sure exactly what she meant by "we'll send you for some scans" so I'll have to wait and see on that one. 

My dose of Keppra was also increased there and then from 1500mg per day to 2000mg per day. Which has me pretty damn hard this time... which I briefly wrote about here. Fingers crossed it'll be worth it and will help a little more :)

Plus as a side note... A month or so ago I had a phone call completely out of the blue from my local hospital and it turned out to be a Epilepsy specialist nurse (who had been contacted via my council after they found out I had been "lost in the system" AGAIN!) After our initial phone call we spoke a couple of other times over the phone discussing various things. It was so good to finally have some form of contact with someone who had some answers to the million questions I had building up in my head but with no one to ask. In fact I can't tell you how relieving that was. Anyway I was waiting to go into my appointment in the waiting room when a nurse came over to me and introduced herself as the nurse I had been speaking with on the phone. She was ultra friendly and said she just really wanted to put a face to voice as it were. It was just such a nice thing for her to do especially as I wasn't supposed to have be seeing her at all during the appointment. It's lovely when people make that extra bit of effort and I immediately felt much less nervous. :)

So now is the hopefully much less of a wait for the tests and I am set to see the neurologist again in 3 months time. 

:)

A love of reading

Over the past few days one way or another (usually involving sitting in the garden in glorious weather) the subject of reading as come up. I love to read. I used to read constantly when I was younger. I was one of those children that would rather go and sit somewhere quiet and read than run around outside. 

Now I have more time on my hands trying to do this 'resting and stabalizing' thing I wish I could just pick up a good book and read. But no, reading a novel at the moment is a complete impossibility. Sure I can try to but I just end up having to read one sentence or page over and over again just to get the little bits on information into my head. When I was studying this was a HUGE problem. Even short peices of text would take me forever to read and even then sometimes I would miss most of the relevant info. Also if I have absence seizures while reading I can read on for ages and not even notice that I'm not actually reading.. strange I know.. but it happens! It like my eyes know what to do but they just aren't connected to my mind. And when it comes to actually holding any storylines or anything that may be relevant in my mind ready for when I next pick up the book  to carry on reading... well thats just incredibly frustrating!

I usually stick to magazines or short articles nowadays just so I have that little bit more of a chance to absorb what I am reading or for it not to be such a daunting task to re-read parts. Plus they usually have images along side them... I'm an extremely visual person so as much as 'picture books' may seem more of a childish read.. they are my saviour!! 

Anyway yes I just needed to get that of the mind!! 

:)

Art Auction and Print Sale

 

Please excuse the poor quality of the image I got a bit over excited when I saw this and copied it as a reaaallllyyyy small file.. 

Anywho BE THERE IF YOU CAN!!!! Just look at those names!! This event is created by the beautiful people in their final year of BA (Hons) Photographic Art at the University of Wales, Newport to help raise funds for their graduating publication :) 

For more information please visit: photoartauction.wordpress.com 

X

A little bit of energy goes a long way.

Here's a nice little positive post :)

It's been a pretty low few days but today I woke up with plenty of energy :D something I haven't done in a fair while! So we went for a walk around some local coast line. It was BEAUTIFUL.

It was so lovely to be out in the sunshine with brilliant company and what better way to end a perfect day than to be able to dip your aching feet in the sea!

So to go with the lovely day here's some other good news :)...

A few days ago I recieved some of the best news I've heard in what seems like forever. It was the news that my application for 'Interruption of Studies' has been fully approved and I can re-start my final year at university in September.

Also from the 30th of April until the 28th of May I will be volunteering as an invigulator for a art project: Open Empty Spaces I can't wait to take part it feels really good to be able to help out with something productive and arty :D! I feel a bit detached from the art world since suspending my studies in March. So this will be good for the mind. 

Plus I'm a volunteer photographer for the Wheelchair Sports Spectacular - Cardiff on the 17th and 18 June! Disability Sport Wales I cannot wait for this!!! 

I've also applied for a casual waitressing job with my local council. I've worked since the moment I finished school and with my diagnosis of Epilepsy I lost my job. Not having and income really makes me feel uncomfortable and now I've not got university to keep me occupied I'm really finding my self at a loose end. Obviously the reason I've taken time off my course is because I don't have the energy to keep up with everything so a casual job means I should be able to work if and when I can. Plus I can meet some new people and maybe feel a bit useful in some way again :) Hopefully I will at least get an interview..

All in all there's a lot of positive thinking to be done :D A little time to relax can do wonders!!

P.S the sheep say hi :)
X

Yet another increase.

Following a appointment with my new neurologist the other day, my dose of Keppra has been increased from 1500mg to 2000mg per day. I'm only a couple of days in but already the difference in my mood and energy levels last week have altered drastically. For the worse. I'm back visiting my mum in South Devon for a few days and my family keep picking up on my lowered mood and lack of motivation and energy to help out on the farm compared with last week. I really can't help it though. My head is fuzzy, my entire body feels heavy and I feel like I could sleep for days on end. Any motivation I had last week has dropped down to zero.

But I know it's to help slow seizures down and eventually *fingers crossed* stop them all together :) and I usually get used to the side effect within a few weeks... this one has hit me hard though and I can already tell it's going to be a long drag.

Despite feeling rather miserable, little things like walking to sit by the sea for a few hours (despite it taking a tonne of energy) seems all the more worth it. I suppose a few days hanging out with the cats and all the other animals in sea air will do me good despite feeling awful I can't do as much helping out compared with last week. I don't like winging about it or telling people there and then how awful I feel so I just hope they understand. I know it could be SO much worse and thank my lucky stars that my seizures do seem to be  becoming less frequent particularly the full blown Tonic-Clonic. I am VERY thankful for that!

And with that said it's back to sleep for me! 

An empty train.

Recently I've been to visit my mum a couple of times. The longest it takes on the actual train is  between 2.5 and 3 hours. (minus the travels either end of  the train part..) In the grand scheme of things that not that long at all. But when you have the threat of seizures constantly hanging over you it makes it seem like forever. It worries me either more when I pretty much have the entire carriage to myself...

In one train journey alone I had two witnessed seizures. One was an absence I had when I was asked for my ticket which resulted in me being told I looked like I was "in a world of my own for a while there" Of course I just handed over my ticket and nervously laughed it off.. There's not really much else you can do! The second one happened as I was waiting for my connecting train. I was just standing on the platform that was typically buzzing with people when I lost my balance knocking into a woman. When I tried to apologise I just couldn't get the right words out and felt like I was steaming drunk. She told me that for about a minute I was making no sense at all as I was trying to talk to her. Once I'd regained my awareness fully (usually only takes a minute or so with these ones) I apologised properly and explained that it was a seizure. It's still funny hearing myself telling someone that especially if they are a complete stranger but it's better than leaving them wondering what on earth had just happened especially when they've been nice about it :)

I travel a lot on my own and have been very lucky not to have had a full blown Tonic-Clonic whilst out on my own. And of course the "what ifs" forever play around in my mind whenever I'm out and about but I try to just think well if it's going to happen there really is nothing I can do about it so best not dwell to much or I'd never get anything done! Easier said than done though.

It's good to be out of the house bumbling around though :D!

X

Nightmare.

Last night I had yet another nightmare so now seems a good time to write about them..

Over the past 4 or so months I've been getting some pretty horrid dreams and full blown nightmares. Some of them are me not being able to escape from somewhere or I'll be running away and end up trapped. Not nice. Most though are of car or train crashes some of which I am in and some of which take place in front of me. I watch from an observation point of view as the collision occurs. Watching in slow motion as the metal bends and the glass smashes into a million tiny pieces. Sometimes they happen in real-time and sometimes in gut wrenching slow motion but each and every time I have absolutely no power to stop or alter what is taking place.

When I wake my eyes ache and my mind races. I've slept but not peacefully and it takes a while to re-adjust to my surroundings. Very similar to seizures. These dreams though I can replay over and over in the finest detail whereas in everyday life sometimes I can barely recall five minutes previous. I think maybe they are playing out the worries I have of not being able to control my Epilepsy and everything that is has and continues to change in my life. 

They're not every night though thank goodness or I'd never get any sleep!

Gluten Free?

A little while ago I posted about diet changes I've made since my diagnosis of Epilepsy. One of the things I have taken out of my diet almost 100% is bread. This was more of a personal option  (rather than a medically advised one) because of the effects it has on the way I feel health wise. Painful stomach, bloating and extreme tiredness being the most obvious.

Out of habit I just don't buy bread anymore from the supermarket so it's never at home for me to eat. I'm not really strict about not eating it so during my week's stay at my mum's I ate bread without really thinking anything into it. Simply because that's what everyone else was having and it was readily available. Sure enough the pains returned in full force. I can't really explain how it feels... Maybe like I've swallowed a ball whole and it's squeezing through my stomach stretching it to bursting point? Gross thought but that's the way it is.. It even hurts to hold my stomach in and straighten my back!

Anyway I REALLY don't want to go to my doctor about it as I'm fed up with the place as it is let alone going for something that might not really be necessary. So I googled whether it would be in anyway harmful to eat a fully gluten free diet without certain medical reasoning. And funnily enough a neurological condition forum popped up and low and behold seizures where a MASSIVE subject. After reading through a few different subjects and posts on this forum the gist I got was that there are many people who really think that eating a gluten free diet has significantly decreased the amount of seizures they or someone they know experience. This being experimented with being on the same dosage of medicine on both a 'normal' diet and gluten free. 

I'm going to mention it in my neurology appointment on Tuesday just to see if they have any further advice on the matter :) I'm not going to go fully gluten free until then. But afterwards I think I will  try it out and see what effect it has as long as they don't strongly advise me not to.. we shall see.

There are other foods that I think I naturally don't eat very often because I subconsciously know that they make me feel horrible. These being pasta, cake etc. Although not to the same extent, the more I think about my diet in the past the more I realise that they to make me feel awful. Hmmm... 

I suppose it's just some food for thought (Haaa get it!!... apologies it's been a long day..)

X

Few days until Neuro app.

Yep just a few more days until my neurology appointment. It will be the second one I've had since being diagnosed in my first one back in November. I'm getting more and more nervous. I have been waiting for what seems like years for this one. During my first appointment I was told I would have a follow up one, one month from then which means I should have had an appointment at the beginning of December. 

I'm scared to be honest. I don't know what to expect and have soooo many questions. But on the otherhand I'm strangely looking forward to it. Maybe it's the prospect of some answers.. maybe a little progress? Everything has taken so long and for now I just feel like I was told I had Epilepsy given some drugs and left to it. No further tests. Nothing. Despite being told I would have tests, seizures getting worse rather then better and ending up in hospital on various occasions! To actually speak to someone in the medical profession face to face would be quite a relief I should think. I do know the neurologist I will be seeing actually specialises in Epilepsy though which is good to know!

I'm supposed to be back home now and about to sneak into a university lecture (despite me suspending my studies...)  but I was so tired last night and that coupled with my worrying about this appointment plus with a little encouragement from my mum I decided to stay here for a couple more days :) So pottering around on the farm helping out with the animals in the sunshine is my plan for the next couple of days. It's already doing the world of good! 

X

One stunning drive.

Yesterday my mum had gone away to collect some sheep... as you do. I was really tired from a busy couple of days but really didn't to want to waste the day lying on the sofa so Chris suggested we go for a drive so he could show me all these local beautiful places without me tiring myself even more. 

Here are some of photo's of where we went :)

(Photo's in order) - We ended up visiting Dartmouth, Blackpool Sands, Salcombe from across the bay, and the tidal road running through South Pool.

It was lovely!! :)

An 'absence', a sea view and explorations.

I'm currently sat in a beautiful farmhouse on a small farm on the coast in South Devon. I can't even begin to say how perfect this place is for my mum and my step-dad Chris. Without going into any detail they've not had the best of times in the past five or so years and now they can finally settle down and start to fully enjoy life again. This makes me so unbelievably happy :).

The farm animals or lets be honest 'pets' now consist of:

2 Cats, 3 Ferretts, 4 Hens + 3 Cockerals,7 Horses, 2 Piglets and 14 Sheep

and thats not to mention the other animals that have already taken up residence on the farm including 2 Ferrel Cats, Geese, a Heron, Fish and more. I.LOVE.IT. 

I arrived on Friday after a hellish journey on the train. I did attempt to get down here on the Thursday but after leaving my house catching a bus down into Newport I arrived at the train station to find all the travel boards we're covered in 'DELAYED' and 'CANCELLED' trains. Mine being cancelled. Typical. I did hop on another train heading towards Bristol but after sitting on there without it actually going anywhere for a stupid amount of time I found out from someone sitting near by that that train in particular had already been sat stationary for over an hour... Then the driver made an announcement that the Severn Tunnel was being shut for an insepection of the rail tracks and that this would take an unknown amount of time and obviously if anything is found wrong then there would be no furthur trains that evening. So luckily a friend took me in for the night and I caught a train in the morning :) Although 3 hours on a train with no one you know when you can have a seizure at ANY given moment is no easy task. Infact I think I might have had a absence when I was asked for my ticket. What the collector began to say didn't match up with what I heard him finish with... plus he was giving me a strange look like he'd been waiting a while for me to actually hand my ticket over despite me holding it before he even arrived. Hmm.

It's been a busy few days exploring my new home from home. After finally getting down here my mum took me around the farm showing me all the ins and outs of everything. I love exploring new places so this was so so good and she seemed so happy with everything which made it all the better. Later we went on a walk right from the doorstep to the coast and walked along in the glorious sunshine for miles :) I have to say though after not a massive amount of sleep and a relatively long train journey dragging my luggage it was hard work climbing back up the coast to get home... But look how worth it it was!

On top of that I've been helping out with all sorts of things around the place. It's hard work, everything is far away from everything else, most things are heavy lifting and awkward which of course you'd expect on a farm... but I'm not exactly the biggest. strongest person ever so it's pretty damn exhausting and that's on top of feeling constantly energyless from my medicine!! But I love getting my hands dirty and helping out with all things rural so I do the best I can and my parents know and respect that. I know there's always a spot of my mothers cooking and good nights sleep following it so it's all good!!