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!! 

:)