Double Force Neurology Appointment

Wednesday morning I went along to my neurology appointment and I have to say it was the most productive and informative appointment I have ever had.

It's always an anxious time sitting in the waiting room. I think its because once you are through those doors you really do have no idea whats is about to be said and how it will effect your life from then on. 

I was waiting to see my doctor when another lady called me into her office instead. I had never met her before but I quickly found she was lovely and seriously meant some business when it comes to trying to sort these seizures of mine out. She told me she had read through my notes herself and asked me how I was feeling about everything and what life is like at the moment. About five minutes into my appointment there was a knock at the door and my regular and wonderful neurologist walked in. They were both shocked at the injury I gained from my seizure at the weekend and were intrigued into exactly how it had happened. After explaining Sundays and Mondays events we all sat there going through my recent notes and hospital stays. My hospital admittance during the summer for 10 days (which I still haven't blogged about because it really was a scary time) threw up some problems which still need to be addressed. We discussed everything though in order to figure what the next immediate step would be.  

The outcome from the appointment is that they are now starting me on a new medicine. There was a choice of two... but the doctors were discussing which one would be better and to be honest I can't remember which one they went with in the end, so I will have to wait until the letter gets to me and my GP before I can find out. I was also asked to send them a copy of all the videos taken over the years of my seizures so they can sit down with the whole team and go through them and all my notes to decide what happens next with my case. They are going to review me in two months time to see how everything is going. During this time I am to let my neurologist know immediately if anything out of the ordinary or of particular note happens.

Taking three different anti-seizures medications is going to be hard going, being on just the two is a hard enough task. So lets see how life with seizures plans out until then. 

Live on BBC Radio Wales

This morning I had the pleasure of being able to help in the mission to raise vital awareness of Epilepsy by being interviewed live by Jason Mohammad on BBC Radio Wales. The wonderful charity Young Epilepsy also took part in the interview. 

Despite being ultra nervous I think it went very well! If you would like to listen to the discussion visit here.

I would like to thank BBC Radio Wales for giving Young Epilepsy and myself the time to discuss such an important topic. 

Face + Desk = Fracture

Another day, another trip to A+E.

This time the verdict was concussion and a fractured cheek bone.

As much as I love to sit at my desk surrounded by my lovely arty supplies and inspirational books I DO NOT like it when the edges get a little to close to my face! I took a rather violent seizure, went down like a ton of bricks and landed the front of my head right on the edge of my desk. It not even a particularly sharp edge as I've got a thin colourful mat on top of it that runs over the corners to blunt them off a bit. This was on Sunday, I was fine apart from a horrid headache during the evening and went to stay at a friend of mine so she could keep an eye out for anything wrong. I tried my best to avoid going to the hospital but when I got sick early on Monday morning it was quite clear that I did indeed need to go in to be checked out. I was examined and sent for x-rays and scans to be told that I'd fractured one of the bones and had concussion luckily nothing was displaced though. I was kept there for observation then allowed home under the supervision of friends. 

Well for now my face is still swollen and the bruises are coming out slowly but surely, I'm telling you it's a beautiful look that I'll have to live with for a while but it will heal and it could be A LOT worse! 

My plan for today is to sleep a lot and just try not to do anything much because as of tomorrow it all takes off again with a trip to see my neurologist and then some radio interviews!

Creativity Lately

Lately I've seem to have gotten my creative vibe back thanks to a lovely friend of mine. I cracked out my old craft supplies and picked up a few new ones and seem to be getting back into the making of things.

One motive my friend and I have is to create simple little doodles most days and sending each other a photograph of what we have produced in the evenings. It works a treat :) 

I'm loving it, I've just taken a break from making one of my sisters birthday cards. What I'm doing takes a steady hand that given my tremors takes a big amount of effort requiring concentration which is another thing I'm not particularly good at! 

It's nice to have something else to focus on and a positive one at that :) 

Green Tea the Great

The side effects of anti-seizure medications are horrific, there really is no other way of putting it.

Not all of them are visible on surface either. Yes you can see the grey face and under eye bags. You can see the tremors and hear the stumbling over words and struggle to string a sentence together. Then there's the hidden. The tiredness, the headaches, the nausea, the constant battle with emotions, the general fuzziness of your head and the huge lack of energy a person has to fight against just to get out of bed in the morning. It's a constant battle fought day after day by those who are forced to take them. We have to look for ways to fight against them and grab hold of who we really are.

I'm no health food preacher but I thoroughly believe that green tea helps a great deal. For some reason I stopped drinking it for a while I can't be sure why, I just did. But now its well and truly a habit of mine again and I can feel the benefits. I feel less sluggish, a little more refreshed and that's something I can not let get away. So it's green tea all the way from now on and I'd recommend it to anyone who takes any sort of medicine or even if they don't!

Swirls

A friend of mine has suggested that I might like to try doodling as a form of stress relief. I like to bring out my creative side anyway so I thought it was well worth a try. This is last nights attempt and I loved settling down at my desk and putting pen to sketch pad and seeing where my mind would take me. It certainly helps to have something else to focus on :) 

Swirly doodling for less of a swirly brain! Good advice from my dear friend and to pay it forward I'd advise anyone to give it a go.

Ignoring the inevitable.

My head was buzzing blast night before last and I could feel that awful seizury feeling creeping into my head.

So my evening was spent sitting at my desk trying to concentrate on other things mainly doodling and talking to far away friends online. Of course I had some lovely music on in the background, always a must in my life.

Wether I had any seizures I don't know. I deliberately didn't keep an eye on the time. Time is one of the clues I use to tell if I'm having little seizures or not because usually if time is moving fast it means I am having some. That night though I really couldn't care less so I tried to ignore the situation. Call me stupid if you like. Anyway I went to bed without knowing and woke up yesterday morning feeling ok if a little tired. Maybe I was lucky?

IKEA wishes.

I have a major crush on home furnishings at the moment and the idea of creating my perfect home. Yesterday evening was spent going through various websites and seeing what products they have to offer. These ones above are all from the IKEA, there are a million more things I would happily pick out and display in my home but hey its all wishful thinking! One day though! 

My story presented.

Exciting news!

I've been asked to present my neurological story to a group of medical students at the hospital I was originally diagnosed at nearly three years ago now. One of my very closest friends is a doctor at the hospital and suggested it.

Theres no better feeling than spreading some vital awareness especially to the medics of the future :) 

Here's hoping it all plans out! 

Pot Plant

I've been feeling a little low lately. I've moved back into my house in South Wales after having been staying with my parents in North Wales because a big increase in seizures.

When I got back I found that all my pot plants had pretty much died a death. I had to leave the house very quickly well by ambulance actually so I didn't exactly plan on leaving for so long and preparing anything, so my beloved plants where left without water. I love having plants around the place they cheer me up a surprising amount. Anyway after discovering their now distinctly brown and crispy appearance I have tried to revive them but we'll just have to see how that plans out. I went shopping for food supplies when I got back to the house and spotted this lovely pot plant whilst out and bought it straight away. 

It's funny how the simplest of things can brighten up any day.

Dates I will never forget.

It's a tiny while ago now but the 3rd year anniversary of my experience of seizures has recently passed. The date 26th August 2010 is the date of my first ever seizure (that I know of for sure). 

I simply cannot believe how much life has changed but it's not all bad though!! It's fascinating for me to look back through everything I have written on this blog since starting it back in November 2010 to document my journey. This is the very first post I wrote on this blog which was about how I came to realise I had started suffering from Seizures. 

Taking it all in consideration though I have to say one of my proudest achievements has been graduating from university with (even if I do say so myself) a grade to be very happy with. 7th September 2012 A year ago today I was dressed in my gown and walking across a stage in front of lots of people (praying I wouldn't fall over from nerves!) doffing my cap and smiling so much my face ached!

To finish university after having started suffering with seizures was one very hard task. I started having them just before starting my final year of my degree. Eventually I had to drop out for a year as I fell so far behind due to numerous hospital admissions, the side effects of medication and of course the seizures themselves. After learning to manage the side effects and with a great deal of help from some wonderful people I re-started my final year and a year later completed it!

I can't believe how time as flown it really doesn't feel like this all happened a year ago. Well I'd better carry on the journey and see what life throws up next! x