Monday 23 December 2013

Merry Christmas and Happy New Year!

It looks like I've abandoned my blog... I haven't though I promise!

It's just been a very busy time here and just as it slows a little Christmas is coming right up swiftly followed by the New Year. 

Short post... I'm glad to report I've finally moved to live up North with my parents and younger sister wooohoooooo! My tenancy is signed over and as of January the 1st I will have nothing to do with those people ever again! Unfortunately I did have to leave a ton of my things down there as my dad had to collect me in the tiny car as the big pick-up broke down right beforehand... typical.. but I'll grab it before the new person moves in. It can safely be said that I feel so much better for it already. 

A little early I know but have a wonderful Christmas and a very happy and healthy New Year xxx

Tuesday 10 December 2013

The doctor, the med students and I

Well life is a bit of a confusing mess at the moment due to being stuck in limbo between North and South wales!! I don't know where I have to be and when at the moment for the most part. 

One thing I do know though is that tomorrow evening I am boarding a train up to Wrexham in North Wales. This is because Thursday I will going into the hospital which just so happens to be the very place I was diagnosed with Epilepsy over three years ago. My reason for being there is not for any appointments but a meeting with a group of medical students. A friend of mine is a doctor currently based at the Maelor hospital and is a mentor to this group of students. She has kindly asked me to go in to discuss with the medics my life living with Epilepsy. From the process of diagnosis to how I feel during appointments with medical professionals. It will be interesting to see how it plans out and what will be discussed. I've been asked if images of my injuries gained as a direct result of Epilepsy can be shown to them along with video's of my seizures. 

But for now it's time to rest a very achy head in bed. 

Sunday 1 December 2013

Off to be kept and eye on!

I'm going away for a little while to stay with one of my sisters and baby niece. It's getting overwhelming staying in this house with people I don't get along with while my seizures increase. 

I'm trying to sort out renting my room to someone who can take of my tenancy so I can leave for good but it's taking a fair old while. So while I wait for someone to come forward which will hopefully be sooner rather than later my little sister has offered for me a place to stay so I can be kept an I eye on. There's no way I would have said no even if my stubborn side where to come out as I get to spend time with her and baby Willow. Wooohoooooo! 

I'm not taking my laptop with me so no blogging from me for a little while x 

Friday 29 November 2013

Drug-resistant Epilepsy?

Would anybody mind if I just climb into a little box in a corner and never come out?

I had a neurology appointment Wednesday morning and I'm now classed as having a refractory Epilepsy that may well be drug-resistant. If there's one thing that I have requested of my neurology team is that they are honest and if needs be frank with me something thankfully they have learnt to be.

Once I got around the original person who invited me into the little room for my appointment (long story which wouldn't be fair to put on here) but lets just say I will not be seeing that person again. Anyway once my actual neurologist was in the room we sat together and went through recent notes, seizure diary and he watched recent video's of my seizures that have been caught by people. My notes from my last appointment in September however have completely vanished... there's absolutely nothing on the system, as if I never went in?? Very strange and believe me neither I nor my doctor were very impressed! After going through everything we came to several conclusions as to what will happen next.

Despite worries that medication may not work for me for now I'm being tried on Eslicarbazepine Acetate (Zebinix) which is actually a medicine I have never heard of before! It's prescribed to adults with refractory partial seizures with or without secondary generalisation. I of course come under the title of "with secondary generalisation" as my partial seizures often run into Tonic Clonic seizures. He printed off the prescription straight away and handed me the paper to take down to the hospital pharmacy. Normally I have to take the to my general doctor and wait for the pharmacy to process it. So I able started the medicine the night of my appointment. All I can do is hope that it works or at least lessens seizures a bit, either in their frequency or intensity.

I am to have a fresh MRI scan as he is sure there is a cause for my seizures and he reckons it's in the left side of my brain. He told me in a follow up email today that this is due to the presentation of my seizures in that most of the movement it focused to the right hand side of my body. My last MRI was 2 1/2 years ago and he wants to compare that one with a new one. I've had various CT scans but they don't provide a detailed enough image. 

He has also now reffered me to a specialist neurology centre to carry on my care. I have a very "complex" case and need to take things a step further to confirm if I do indeed have a drug-resistant Epilepsy. For now though I will wait and see if these new tablets make any difference and carry on my life. I have to say I will miss my current neurologist as he knows how to listen when needed, show interest and realise that I can have a say in my care but perhaps most importantly he is honest. Something that is invaluable when it feels like your life is completely out of your hands. 

Wednesday 27 November 2013

Life Changing Move

It's official, I've put my current room tenancy up for rent. I can't quite believe it but I'm now definitely moving back up to North Wales to live in the very house I grew up in. I lived there until I was about 12 then moved away. My current home is in South Wales where I have been living since starting university well over 5 years ago and it has become a place I love dearly.


I've relocated my live several times already each with hundreds of miles apart and believe me it is a very tough thing to do. This time around though I'm not starting afresh somewhere new. I already have beloved friends and family there and a familiar place to settle. It still breaks my heart to have to leave South Wales though. I have strong relationships here and it's where I grew into my adult life but unfortunately it's just not suitable for the way things are in relation to my health at the moment. 

Emotionally it's tough, I had to ring my parents up before I pressed the submit button on the advert just to check that it was the right thing to do. I'm scared, sad, excited and plenty of other emotions all mixed into one. I hope it's true what they say and everything really does happen for a reason.

Monday 25 November 2013

Sunday morning seizure

It was a tonic-clonic and it's hit me hard. A friend happened to be around for a quick cup of tea when it hit. Luckily she's used to seizures both in her job and through me so she quickly sorted out the basics and whipped out her phone to film some evidence for me to show my neurologist. 

There are a fair few video's of my seizures now and I don't like to watch them at all. But this time she was quite distressed as to how blue I turned during this one. Intrigued I watched it and I too have been left shocked. I've only watched it the once and don't plan on seeing it again as it's really got to me mentally. Physically I'm still feeling the effects of my seizure, I spent most of the rest of yesterday sleeping and have had a few naps today. My muscles are still sore and a head ache is looming over me but is slowly washing away thankfully. 

I have an appointment with my neurology team on Wednesday morning which I definitely am not looking forward too. I'm afraid I'm going to have to get a bit stern with them as there are some problems that have to be solved including my missing prescription and notes. Joy. 

Friday 22 November 2013

Quick blog break!

I feel like I've abandoned my little blog I haven't I'm just a little lost in amongst all things life at the moment. From amazing need for huge amounts of sleep and stressing trying to plan my move from South to North Wales to pretty much begging my neuro team to send my latest notes to my doctor so I can start my new medication (STILL) and starting a new volunteer role that has already seen me in some very interesting places. It's all going on and it's exhausting! 

Be back soon x 

Thursday 14 November 2013

Purple Love

My head has been a little cloudy for a couple of days so I'm sleeping quite a lot and concentrating on some therapeutic little art projects to help me focus. 

Here's some purple love xx 


Monday 11 November 2013

1 click and help save a life?


Pretty, pretty please can anyone that might read this click on the link below and vote for an incredible small charity to possibly win some much needed funds. These funds can literally be life saving!! You can vote once every day too :) 



Epilepsy Sucks is small charity set-up by two mothers after watching their children go through their lives living with Epilepsy. One of whom sadly lost their life at the age of 22 due to suffocation during a seizure. Epilepsy Sucks aim to provide anti-suffocation pillows to both children and adults who suffer from seizures during their sleep. They work tirelessly to raise funds in order to do this along with running an amazing Facebook page to offer support and a place for other in the same boat to meet and share there experiences and gain invaluable advice first hand. I can safely say that I have learnt about 90% of what I know about seizures and the condition through this page as opposed to meetings with my doctors. I also have one of their pillows and I am certain it has saved my life on more than one occasion and would not be without it. Without the help from Epilepsy sucks theres no way I would have been able to buy one for myself. 

All it takes is one click to vote for them from the link HERE. There is no signing up to anything just literally ONE CLICK. 

Thank You SO much xxx

Sunday 10 November 2013

Hot pipe tip.

The other day I was given a tip that I really should have thought about before! It's a simple thing that can be found in many homes. Hot radiator pipes. 

If you were to fall against them (even when the radiator is off as they often remain hot) during a seizure or remain unconscious next to one then you may gain some level of burn to the area of your body that is in contact with the pipe. This could be during the seizure itself be it gripping the pipe or lying against it and/or contact may also occur during the post-ictal phase following the seizure. 


I'm not entirely sure what I can do about it at the moment I rent my house off a private landlord so I can't change it's appearance permanently in any way. The lovely lady who pointed it out suggested I give my awesome door-stop owl a new job and place him against the main piece of piping and the radiator tap. He will then be guarding the tap with it being a rather pointed object to hit on the way down and off course provide a barrier between myself and the hot pipe. This is the plan for now and if I can find something to cover the rest of the piping that runs along the bottom of the radiators in my bedroom I'll sort that out as well.


Hopefully this will now be one more injury I won't be adding to the list!

Thursday 7 November 2013

An Improvement!

It's the tiniest of improvements but some of the most brilliant news I can hear right now.

I've been having some problems with my field of vision on the left hand side I believe it's called a left-sided Quadrantanopia. This basically mean I'm missing vision in the top left hand quarter of my vision. I found it out over a year ago by chance when I went to try and find out the cause of a persistent headache by visiting a high street optician. The day I went for the test the optician handed me the results in person and told me to take them straight to my GP myself instead of waiting for them to travel through the post. Not good. This is my original post with the results. It is immediately obvious that something isn't right. 

Anyway I've been seeing a opthalmology consultant since then for various tests. This time around when I went to see my hospital ophthalmologist on Monday after some more visual field tests the results show that there is slight improvement in my vision!! I couldn't believe it, I've had visual field tests many times over the last year to check on progress and each time it has some back the same with the longer it went on leaning towards it not improving. Best surprise ever. I have more tests booked for in a couple of months to see if there is further improvement of whether it has stayed the same. 

Whilst I was at the hospital I bumped into a couple of old faces as well one a fired from university who has taken up a placement as a medical photographer and happened to be in the department. Then another fabulous girl I met on a ward when we were both admitted together a year ago and we were the youngest on the ward by a long shot, she happened to be walking down the corridor as I was leaving the department. 

So believe me I was (and still am) one happy bunny! x

Wednesday 6 November 2013

Reunion

This weekend was amazing. I spent two whole days with my beautiful friends with whom I lived last year. One of them is one of my oldest friends and another three who until I moved in with them a year previous to them graduating as doctors I had never met. If you were to see us altogether now you wouldn't have a clue that we were complete strangers not so long ago! I love them dearly and they have stuck with me through high and low since the day we all met. Through the seizures, hospital appointments, mid journey on the motorway stops because I'm seizing once again, the too poorly to make myself anything to eat so they cook me dinners, visiting me in hospital to put a smile back on my face, the trips out that make everything feel "normal" again. Very happy and safe times. 

Since leaving university in June this year they have all split up and live in completely different areas of Britain. It is a massive shame but they are living their passion as doctors and Britain is a surprisingly small place and in just a matter of hours on a train one or two of us can meet up. This weekend however is the first time we have all been back together in one place and it's like we never split. Despite being between the ages of 23 and 30 we all act like children... refreshingly carefree. 


We each travelled to meet in mid Britain to the city that Rasha lives in to celebrate her belated birthday together. We stayed in a lovely hotel high street level looking out over Birmingham over three sides. It was also Diwali over the weekend as well so right across the landscape beautiful fireworks sparkling in the sky. Hours were spent talking about each others lives and laughing over memories. We ate out in lovely resturaunts and returned to an amazing restaurant we visited the last time we visited Birmingham when we went to kit ourselves out with Asian attire for one of their weddings. Previous trip to Birmingham plus we went to see a Bollywood which was hilarious! 

We gave our gifts over to Rasha to open whilst we sat down to dinner and afterwards presented her with this... Check out this cake!!! It was amazingly detailed and absolutely delicious... it didn't last long! 



It really was a great weekend and I felt very emotional leaving them behind again but we're already planning our next meet up and even a holiday... once we've saved up the money! 

Monday 4 November 2013

Three years today.

Three years have passed since I heard the words "you have Epilepsy" come out a neurologists mouth whilst looking at me. 

I didn't react that day but I always tell people that if I knew then what I know now in terms of what life would hold from then on, I would have reacted very differently. In fact I don't think I have the words to explain how I might have reacted that day. 

This blog has been my release since that time and will continue to be so. I will continue to try my best to raise awareness to whoever will listen, so far I blabbed on through here, Facebook, on the TV, radio and of course in person! 

I'll be forever thankful to everyone who has held my hand both physically and through kind words and thoughts.

Friday 1 November 2013

Epilepsy Awareness Month

Flying visit post due to being away but...

The 1st of November is not just a day you get to pinch and punch a person with no returns (before noon of course), it's also the beginning of Epilepsy Awareness month!

With events taking place everywhere there will be vital funds and awareness raised all to aid fight  against the condition. If you see someone wearing a particularly large amount of purple who knows they could be doing something for Epilepsy if they are not, it still made you think :D

Happy Epilepsy Awareness month all <3 

Thursday 31 October 2013

Welsh Neuro-care

New plans to improve care for people with neurological conditions across Wales have been sent to consultation. This is brilliant news. Wales is a small country with very rural terrain for the most part meaning that a lot of people have difficulty accessing the care they need easily and within a certain time. Neurological services are hugely underfunded, severely over-stretched or barely in existence at all in a lot of areas. Hopefully these plans will go through and be put into action to improve the system dramatically to help the hundreds of thousands who need it! 

If you wish visit here to read the news story

Friday 25 October 2013

Trip to the City of Bath

I have just been away for a few days on a last minute trip to Bath with a beautiful friend of mine. I had a phone call from her telling me she had taken some last minute annual leave from her job for her birthday and would I fancy a trip somewhere. I'll never give up an opportunity to get away or see my friends and so we chose somewhere we had never been before despite us both living surprisingly close to it for years, our destination was Bath.

We packed so much into our little trip including a few sessions of dressing up (love it!) We went from Victorian style clothing to characters in a Jane Austen novel and had so much fun in doing so! Whilst there we visited the magnificent Bath Abbey, dined at many a small cafe and larger restaurants from vintage afternoon tea rooms to gorgeous Italian. Walked around the city through it's incredibly beautiful buildings popping into museums and art galleries along with the traditional Roman Baths and dipped into the world of Jane Austen in the very house she used to stay in whilst she too visited Bath. 





 Flipping tired now so a catch up on some rest is most definitely needed!

Sunday 20 October 2013

Waiting.

Waiting is one of those things you really have to get used to whilst playing this medical condition game. Nothing is instant and time passes at a crawling pace. 

I'm waiting to start a new medicine at the moment but I have to wait for the report from my last appointment with my neurologist to come through the post. Once it has got through to me it means it will have gotten to my general doctor who I will then be able to make an appointment with and he can write me up the prescription. I feel like a child waiting for Christmas each morning I hope that the letter will drop through the door in the post but so far it hasn't and my heart drops every time I pick up the pile to find it isn't there. I can't complain though because we are unbelievably lucky to have the NHS but I can't help feeling disappointed. It would be easier on the heart if there was at least a date to expect it but there's nothing it's just the hope it will come and then I can start the new medicine and begin a new session of hope that it will work or at least help a little with my seizures. Anything is better than nothing.

Ok selfish, whiney post over! Stay well! 

Friday 18 October 2013

One Big Decision

At the moment I'm stuck in a tangled web of pros and cons when it comes to decision making.

I'm trying to decide whether to stay living where I am at the moment or move back to my place of birth close to my dads half of my family at the opposite end of the country, North Wales.

It's taking over my thoughts almost entirely at the moment. Since my previous housemates left this house it just doesn't feel like the home I used to know and it's really been getting me down.

At the moment I'm telling myself it is going to happen and I will definitely be moving. I'm hoping to initially move in with my family while I find somewhere less rural for myself to live whilst still staying close to people I already know up there. Now the question is do I move as soon as possible or wait until the end of tenancy in June next year?

It will be a big culture shock despite being used to the ways of the countryside. I grew up there spending 12 years living in the valley. From the age of 12 though I have lived in a various places far less rural since, I'm 24 now so I will be returning to my birthplace after having spent half of my life away.




Medically it could be complicated in moving my care up to the local health board. I was originally diagnosed at a hospital under that health board but on transferring to a health board down here where I went to university I was lost in the system and it was a really frightening time. I was newly diagnosed given a prescription of mind and body altering medication, seizing left, right and centre and completely on my own without any medical care. It took me months of complaining to a GP before they finally took notice of me and thought to check the referral list that they low and behold found I was even on! I refuse to go through that again.

Best keep thinking long and hard and see what happens. 

Wednesday 16 October 2013

Italia!

I've been away abroad for a little while but today is the day I catch up on all things life! I love these days it makes me feel more in control of everything... well... not quite EVERYTHING but you catch my drift. The list of what I have to do is so long but the good news is it's raining. Usually that would be pretty miserable but this means that I don't feel guilty that I'm stuck inside sorting things out. Instead I feel cosy and relaxed and can happily bumble along through the day. 

Any who here are some photo's from a lovely trip to Italy. We stayed in a lovely hotel just outside of Sorrento with a stunning view of Mount Vesuvius and visited Pompeii, Herculaneum, Amalfi and Ravello. Everywhere was absolutely stunning! 









If you can believe it this is just a VERY select few as I took so many photo's. Even then I was being careful not to over use my camera. I like to try and save a lot of what was to see just for my memory. Although given how bad my memory is that was probably a bad idea but then some places are just so special its just far better to see them only through your own eyes rather than down the lens of a camera. The travel bug is well and truly in my system again so I'll just have to see where I end up next! 

Thursday 3 October 2013

Off for a week!

Hmm I'm feeling the need to have a little blog revamp. Nothing to hefty just a little freshen up and some change.

It'll have to wait though as I'm jetting off to Italy during the early hours of tomorrow for a whole week woohooooooo!!! We're flying to Naples then basing ourselves in Sorrento and travelling about from there to places like Pompeii and the Island of Capri. 

I'm going with my nan so it'll be nice to take it slow and relax a lot so we can take in the beautiful sights at our own pace :)

I'm so excited and knowing us I now for a fact we will come back with a ton of photo's and lovely memories. 

So back to blogging in a week or so. Toodle pip! 

Saturday 28 September 2013

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. 

Thursday 26 September 2013

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. 

Tuesday 24 September 2013

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!


Saturday 21 September 2013

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 :) 





Thursday 19 September 2013

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!


Tuesday 17 September 2013

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.


Monday 16 September 2013

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?


Saturday 14 September 2013

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! 

Thursday 12 September 2013

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! 

Monday 9 September 2013

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.



Saturday 7 September 2013

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

Saturday 31 August 2013

Bump in the night.

Well I can't say exactly what happened but I can take a very good guess at it! A good few mornings ago now I woke up with a very swollen bruised and carpet grazed elbow along with matching grazes to my face. They definitely weren't there when I went to bed.


Nice isn't it? This is actually when the bruising and swelling had gone down enough for there to actually be a bend in my elbow! 

The thing is when it happened I woke up in my bed again so I can't be sure where I bumped myself in the house... I have a flicker of memory of being on the landing floor outside my room.. but I might just be imagining that. I could have simply seized my way on the floor next to my bed and collected my head and elbow on the way down. I just don't know and I never will.

I had managed to put up with the pain for a day and night but it just kept swelling and was very painful. Plus I woke up so many times in the night I guess from moving it in my sleep. We went to a country show the next day and eventually I got so fed up of the pain that I went to the first aid tent to ask their opinion. She took one look at it and the first thing the first aider asked was who I had been to see to get it looked at and when I told her no one her face was a picture. She pretty much demanded I go to the nearest A+E department and have it checked there and then. Anyway that evening I went to the hospital and had it examined and x-rayed to be told it was not broken (thankfully!) and that I had damaged the soft tissue down to the bone. It'll take a fair while to heal and will be in pain with it for a while but they gave me some super strength painkillers to go and made my way back home. 

It might seem silly that I didn't have my arm checked and x-rayed sooner but I really can't stand the idea of wasting the NHS's time and money. That and because I have to spend so much time in hospitals it makes me shiver to think about going into one. Even routine appointments make me ultra nervous because you never know whats going to be said and how it's about to change life.

Well it's on the way to healing now. It's very hard learning to do everything with one arm but hey ho I can count my lucky stars it's not broken :)

Sunday 25 August 2013

Another VEEG session


I recently had another 3-day session of video telemetry. As far as I know I typically managed to not have any seizures (as far as I know) but I'm still waiting on the results so they may say otherwise. 

Ironically it was supposed to be a 5 day session and two days after I left the hospital which would have been the 5th day I was there I had multiple seizures. 

If you're interested in what its like to go through an experience like this I wrote what my time in the video telemetry unit was like in a previous POST the last time I was admitted there. 




Believe me when I say having video telemetry is not fun!! It's very boring (if you're conscious that is). You're confined to a single room with very little to do apart from watch TV/DVDs, chatting and eating. 





















Tea drinking, watching films with my friends and staring out of the window was pretty much all I did for 3 days straight! The last image is myself after having all the electrodes taken off leaving behind a sore head but happy with a t-shirt that arrived in the post while I was there from the amazing charity Epilepsy Sucks UK. They provide anti-suffocation pillows so those who suffer with seizures in their sleep for free! Check them out! 

Friday 23 August 2013

Little Willow


I've just spent the week staying my sister and beautiful baby niece Willow-Jade :) 

It was the first time I've gotten the chance to spend some time with Willow and every last second was wonderful.

Here we are chilling out after a lovely meal out with no seizures in sight!


We have a family party tomorrow so that beautiful baby smile will be present again :D Excited!!!