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  1. A bit of partial cubism

    April 4, 2013 by whatepilepsyisreallylike

     

    I turned 30 this last week and hastily brushed over it. That is pretty much how I’d like to leave it but the world is filled with people who like to point out to me that I am now that bit closer to death (cheers lads). I am pretty sure that I am not going to forget to die. Out of all the things there are to forget and I do enough forgetting, dying will not be one of them. The thing is it, it is the one certainty that I can rely on and can therefore trust it to happen. It’s comforting. As a person with epilepsy, uncertainty has effected all aspects of life however this aspect of my life can not be changed. I trust it.

    So when people remind me that I am closer to dying, I’m pretty glad (no, glad is weird), relieved that something certain is going to happen one day.

     

    As I write I’m munching on good cold pizza and the reminisce of a three bean salad. Whilst eating it I realised that a two bean salad would be too few beans and a four bean salad would obviously be too many. How could I have missed this? This fact acknowledged, it does not take away from the fact that it tastes like fart.

    I’ve stopped eating fart…

    I have recently invested in a unlimited card to use at the cinema, in my opinion it is brilliant. It does however have it’s down side. My seizure time hits bang on mid film o’clock. Which on all accounts (mine) is absolutely visually terrifying. I won’t even start to tell you what it is like in 3D, in my opinion the Hobbit was a horror film. :S

    My seizures mess about with my spacial awareness, so when all my space revolves around a movie screen the size of, well, a movie screen. Everything I see turns to melted terrifying stuff.

    Now, I have never taken hallucinogenics but this must come pretty darn close. It was too weird, although there were no dragons or whatever, I felt like crap and I didn’t love everything (a perfect example then) :S.

    One minute I was watching flight and the plane is flying as planes do. Then the next second, its all messed up; like if Picasso made jet liners. Or if Ikea made film sets ;) , it was just wrong and my brain couldn’t process it. So I stopped trying to force that information in there.


    cinema views

    Thinking about, I would actually have this kitchen. If my seizures made my kitchen look like this, well problem solved! ;)

    The upshot of it is you get two minutes of cubism slapped into the middle of the film. On the down side, it made the rather messy Django unchained look much much messier, if that was indeed possible.

     

    scream2

     

    Plus it made Lincoln’s beard look… Well, It wasn’t in the right place and it was all very upsetting ;) .

    An idea of what it would be like, is if I was looking at a woman on a screen she would look something like this, at least I think I was looking at a woman… Or a screen ;) .

     cube

    You have to admit, you are going to take a second look at that ;) . I get that for free, my brain just does it. It’s like art or something?

    To be honest, this rarely happens unless I am in the cinema, or it is a particularly bad seizure. But when it does, it does and it is exhausting.

    These films are an issue for me mainly because I have no fixed point of reference from which I can throw my brain a life-line. So closing my eyes is the only way really, but it is always a different experience and as these things aren’t my triggers and I can close my eyes, then I am fine. I will be continuing to pay my unlimited card membership. I am gutted that I lost a whole bag of popcorn last-time… Sad times :( .

    So digressing a bit, I have moved on to cashews now being healthy and all that, but they are bitterly disappointing. Mainly because they aren’t 1kg of chocolate, it’s just not the same. However there is a 2kg box of haribo staring at me. Erm, I think it might be going bad. What I mean to say is, I hope they are going bad… They aren’t going bad :( I should give them to my brother… So he can get fat instead ;) .

     

    So anyway, thanks for reading. A bit random this week but I’ll be glad to hear from you. Thanks, Ant :)

     

     

     


  2. Pub seizure win or miraculous fluke?

    March 22, 2013 by whatepilepsyisreallylike

    I recently discovered real ales. I’m thirty today so it could have something to do with me getting older.

    old manGet me a Whippet and call me Charlie, I’ll have a pint of mild.

    That and the fact that almost all drink turns my stomach, partially because of the fractious relationship I have with it based on my meds making merry with it. Sorry did I say merry I meant poison.

     

    Going to the pub for me is a regular Friday event. I see the boys and we moan about how we always go to the same place only to return there month after month. Ah happy days.

    Without fail I will feel the aura that precludes my partial at about 8.00 which is the time that we arrive at the pub. I have this warning and as a rule am sat down by the time the partial hits. But not this time…

     

    Having been handed my first drink a full pint of non descriptive “WRU six nations ale” we turned around to talk about stuff and things, Wales under 20s were getting hammered by England under 20s, so needless to say it was quiet.

    Then it hit me, my partial was on me, I was stood up and the only way was down. All I could think of was this terrible travesty… Maybe worse :S

     

     mug_of_beer-7581

     

    However I had a perfect moment of clarity… Or panic whatever you want to call it. Maybe it was misplaced fight or flight? I looked at my full pint of beer knowing that it could end in tears. I fell back… :S But I had a plan… ish.

    I somehow managed to extend my “good arm” lifted, no raised up the glass like the olympic torch on an epic journey (to a dank musky pub floor). Holding it level (in defiance ;) ) as I fell. The beer swished and swashed, my brain despite being ridiculously occupied, through sheer belligerence managed to save every drop of my, non descriptive generic ale. Having somehow placed my ale on the floor I smiled mid seizure content that the first major emergency was avoided. It had there air of the mission impossible to it… More like the advert from the 90s with the squirrel than the film. My work there was done.

    http://www.youtube.com/watch?v=aY9GBl7UmVs

    Shame really.

    Then all there was to deal with was the seizure. There was nothing unusual about it apart from the fact that I was on the floor oddly nobody noticed which was I suppose the second bonus. I was acutely aware of the smell and that I was leaning against the gambling machine. I was half hoping someone would start playing whist I was sprawled ut there :) .

     

    Getting up, I was greeted with the now traditional “would you like a drink of water?” It cracks me up every time, water is honestly the furthest things from my mind. Also I had a perfectly full pint of beer which after being in the pub for 20 minutes, I had not touched.

    straight face

    An Artists impression of my ‘straight face’ 

     

    Well aside from the usual headache I was ready to go. However I was buzzing, my salvaged pint was indicative of the often flukey way in which I can sometimes get a 1up over my brain. It was lost on the others mainly because my mate who tried to gab me (which to be honest would have failed as I weigh 15 stones) managed to spill half of his pint. Also the others hadn’t noticed… So they say ;) . I am glad of this, otherwise I would have been buying more beer to make up for all the beer that they spilt on the floor.

     

    I’ll take those small victories any day.

     

    Do I feel bad about his beer? No. If I can save my drink mid seizure then what was his excuse?

    Thanks for reading, I will be glad to reply. It makes a change from deleting spam.

     


  3. Low Grade Glioma Clinic… Now that was new!

    December 5, 2012 by whatepilepsyisreallylike

    About 6 months ago I received a letter in the post saying that I my low grade glioma (which has been the cause of my seizures) is now being monitored by a new clinic. To be honest, I was quite excited by the change of pace and scenery as well as new faces. I have been looking at the same Doctors for years. From now on, I would be scanned and received in the space of a week. The efficiency sounded staggering, which for the NHS is actually quite amazing.

    Last week I went to my scan. MRI scans have never been straight forward. Mainly because I forget to mention the pieces of metal that I have in my pockets or they know who I am and are scared that I have forgotten to mention the pieces of metal that I was just about to mention…

    But this time, it all went by mostly event free. The radiographer put my canular in my arm( I have contrast injected in my arm so they can see the tumour, and if it has a blood supply). I lay down and fell asleep to the familiar cacophony of loud knocks, clicks and metallic buzzing that simply goes through you. Over time they have become oddly comforting.

    So time went on and my scan finished… The nurse came in to remove my canular. As she did, she looked where the needle was and blood began to squirt out. With true comedic effect, it projected from my arm off the bed onto the floor. It was so ridiculous it was funny. I smiled, no I beamed at the sheer comedy value of this moment. I could do nothing, I clearly wasn’t bleeding to death but I was making a mess. The blood stopped, she made me sit down as she was worried I would faint… She had clearly missed the small detail that I was laughing quite loudly at the gory slapstick nature of the whole episode. It was like Monty Python blood… Just a flesh wound.

    A week later, I still have the bruise. The bruise is considerably less funny.

    Right, so a week later, I attended my appointment at my first Low Grade Glioma Clinic. I have to say that I was quite nervous, it was out of my routine and the unknown element was unnerving. However I was still in a pretty good mood from the scan which kept my spirits high. It’s not that I find blood funny, it is just that I do not seem to be able to have a scan without causing a scene. I am an MRI liability!

    The waiting room was filled with people who all had or have had low grade gliomas. I had never seen, let alone met another person with a low grade glioma and there I was in a room filled with people with similar experiences to me. I can’t state this firmly enough, throughout my life I have met many, many people with epilepsy as a result of many different circumstances but I had not until that day seen another person who either had or has a LGG, like myself. I felt an overwhelming  urge to speak to ALL of these people… Now I did not do that. Mainly because I feel very safe and secure with regards to my tumour situation. I’m pretty lucky. Also I do not necessarily think that it would have been the most appropriate action given the situation and I would also have been asked to leave, and then remembered always as the guy who put his foot in it…again. I do tend to do that.

    Looking around the waiting room, there were people in different stages of treatment. There was recently had surgery guy.  Also there was,  couple of surgeries man, amongst others.

    A family stood out, to us all. For the same reason. Familiarity.

    A young(ish) family entered the room. They looked scared and nervous. They had already been in to see the doctor. They didn’t have the look of the rest of us, the look that you get once you except and respect something out of your control. I immediately  began to think of my Mum and Dad and if they felt the same way when then went to visit the surgeon. I was only 9 when I had my surgery and my folks kept me really well protected. I can hardly remember but the car drive there was ALWAYS deadly quiet.

    Did they feel the way these parents looked?

    The young person with them looked lost. Lost in a world of new unknowns. I’m 20 years down the line and it dawned on me. I don’t have the answers to the unknowns either. Neither did anyone else in that waiting room. I stopped looking for answers a while ago. I thought about them a lot this week.

    Eventually, I got called into my appointment. I was in there for at least three whole minutes. Which is a good thing, no news is good news. They asked me to take part in a gene study to find a tumour gene in my blood… I think :S I said yes.

    Sitting in the waiting room was a genuinely good experience. It was a first for me to really seem with adult eyes what it was like. Also I could see how terrifying it would be to go through it now, and how close we all are to getting bad news. I am thankful for the fact that I was 9 when it happened. It’s been good so far.

    Please take the time to comment, I will write back.

    Cheers.

    Ant


  4. Sticks and stones can break my bones but old Victorian words don’t make sense anymore!

    November 11, 2012 by whatepilepsyisreallylike

    3669764_4_blists-hill-doctor-victorian

    One of the topics this week circulating on twitter has been the study that was completed in 2005 about the use of the term brainstorm and its use as a term to cause offence towards people with epilepsy.

    The Epilepsy Action study(link bellow), pointed out what we really already knew. That people with epilepsy aren’t really offended by the word brainstorm. Obviously context is important, however I have been sat here for two days trying to offend myself and I have failed miserably. If anything it is a non committal term, you could even say that it is in a crude manner descriptively accurate. So my point was, after sitting down and trying to cause deep offence to myself. I failed. That’s not saying that people can’t be offended by it, I might be one of those people who are crap at (deliberately) swearing and offending people.

    I wanted to look at the word itself. Nowadays, the word links to the work by people like Tony Buzan, the thought shower guy… This is shown in the dictionary definition :

    brain·storm  (brnstôrm)

    n.

    1. A sudden clever plan or idea.
    2. A sudden, violent disturbance of the mind.
    v. brain·stormedbrain·storm·ingbrain·storms
    v.intr.

    To engage in or organize brainstorming.
    v.tr.

    1. To consider or investigate (an issue, for example) by brainstorming.
    2. To think of or produce (a solution to a problem, for example) by brainstorming
    Looking at this you could even be complimented by the term…initially, but, there it is. The deal breaker. A sudden, violent disturbance of the mind.
    Firstly, this definition comes from the 1890s. That’s like from, a long time ago! We use text talk now!
    Also, someone (a twitterist) pointed out that context was important. Yes it is. However I think historical context carries a lot of weight too. I truly don’t think that a phrase that has its home 122 years in the past should’t carry much credibility in 2012. There are exemptions to this! However medical language and terminology change as knowledge grows. It would be like saying that the way BBC news readers and tv personalities spoke in the 60s was representative of newsreaders today (it just isn’t). I can giggle at those news readers, I can also appreciate that the Victorians did the best with the language they had at the time (That sounded patronising)…:S
    What I find confusing is that in the same year that Epilepsy Action complete a study, by asking people with epilepsy if they are offended by the term, companies started making it a serious issue if people used the word to define something that falls under its definition. So, what happened then was that a word that was used in an appropriate context and replaced by a word that people can not remember. In addition to this, the new word does not describe the gathering ideas in an effective manner. So they have fixed something that wasn’t broken because they didn’t ask.
    So who’s fault is is?
    This article is from 2005 the same year as the Epilepsy Action survey
    If you read the article you will notice the headline, “Brainstorming is Politically Offensive”. Right now, I think I might unterstand it. No one in the PC police cared if people with epilepsy were or were not offended by brainstorm. But they found and old word that wasn’t very nice. So they fixed it…
    What I think is ironic is that back then they fixed it so that people in buisness and education could not use a word that meant the thing that they were doing. Despite there being more specific words for seizures being invented, brainstorm was then added to the list of seizure words that people forgot . So we were all reminded of it.  Also, because the PC police reminded us of it all (although we forgot it)it will remain for some a no no word.
    You may think that this is all silly to have things from the past rear their heads up? No, in the UK we have silly laws that still exist too, but these are amusing but equally needless. We did not need to be reminded of the word from the days of yore.
    He are some silly laws…
    1. It is illegal for a woman to eat chocolate in a public convinience
    2.Since 1313 MPs are not allowed to wear armour in parlament
    3. No cows may be driven down the roadway between 10 AM and 7 PM unless there is prior approval from the Commissioner of Police.
    Definitions change and words disappear, I honestly believe that there is very little need for the term brainstorm other than in a planning context. Which is far more accurate a description anyway. The victorian doctors didn’t have EEGs and MRI scan’s to understand seizures. We do now, and I don’t really see a need for the word. Just like I don’t see the need for a law to stop women eating chocolate in toilets. Yes, it’s grim but who am I to judge?
    Please comment, I will get back to you. cheers.
    Ant :)

  5. Why did we ever expect fairness?

    November 5, 2012 by whatepilepsyisreallylike

    I don’t normally write about disability rights although it is an area of interest. But I felt compelled to talk about this article in the independent, please take a look.

    http://www.independent.co.uk/voices/comment/how-can-it-be-that-a-disabled-man-needs-to-go-on-hunger-strike-just-to-get-heard-by-atos-8282368.html

    I have recently been reading about a gentleman named Christos Palmer. At the moment he is on a hunger strike outside the Atos office in my home city of Cardiff. I don’t wonder why he is doing it, you would hope that it would be obvious. However there is something that sticks in my mind.

    Firstly although I have an opinion on this, there are a lot of much more militant activists that to be honest go looking for a fight, this is vile. I would like to move myself as far away from that as possible, however I do believe that the law is being abused and vulnerable people are being made to pay. I am not looking for a fight. 

    I have been fortunate enough not to need any sort of disability related benefit but I have benefited from little gems like the access to work scheme. Which is a fantastically under advertised resource, that may be itself be at risk… who knows?

    Like many people, Christos wants fairness for people with disabilities (what’s wrong with that, you might be thinking?). It is this that is the sticking point. Mainly because what is happening is not fair and it was never going to be fair. I know as well as the next person that this is wrong on many many different levels. I do not think that fairness was a priority for austerity changes. But despite the changes, people still remain vulnerable and that has not gone away and it wont go away (it will probably increase), even if the government do decide to change what the criteria is…

    But looking at Christos now, look at what he feels that he has to do in order to acquire fairness. He is starving himself at the risk of long term damage to his health. He feels that he has to take such a drastic action because fairness for him now seems so far away. The action is now relative to the outcome.

    But going back to the original point, fairness was never going to be on the cards, given this government’s budget. Some people were (predictably) always going to be marginalised and because of this aggressive stance, vulnerable people will continue to stand up for themselves, even if that means putting their lives at risk in the process.

    Now what is especially sly is the fact that all eyes are on Atos, our elected government thought that the best option for the management of various disibility related benifits should be given to a private company which (I might add) has less accountability than local authorities or government departments. The government won’t mind people hissing at Atos, but remember if it wasn’t them (Atos) the government would have chosen another company which would have had the same effect.

    Evil, Bad Company and Nice Clean Handed Government.

    Now I know that it isn’t as clear as that, but the company has a remit. Reduce the amount paid out to people claiming disability related benefits.

    I am almost certain that people with disabilities will continue to protest as positively as they are (I haven’t been to a protest) because of the fact that this is a life line. A life line that could be stripped away. This is very clearly symbolised by the actions of Christos Palmer.

     


  6. She had the wisdom of Yoda but she never asked me to carry her around on MY back, like a jedi.

    October 17, 2012 by whatepilepsyisreallylike

    TPM-CGYoda

    As a child, going to the hospital was often a terrifying and confusing experience. It was for me anyway, a traditionally confusing time. It wasn’t all bad but even on the drive to the hospital I would be convinced that it was more than butterflies in my stomach; I would imagine all sorts of massive insects taking residence in my belly. My justification for this was the fact that it felts like there was “something” having a brilliant time in there. Whether it was me or not. But once i was in the building I felt fine. Normally.

    http://www.cbc.ca/news/pointofview/waitingroom.jpg

    A trip to the neurologist went a bit like this, with me it was and is not never straight forward. Mum and Dad and I used to arrive at the pediatric neurology department. The waiting room (as it was when I went there first) was massive, there were all types of magazines like National Geographic and Lancashire Life, Carp Monthly and possibly even Caravan Weekly obviously these are ideal choices for children to read (they weren’t yet down with the kids, but they did get there). So as you can imagine as a 10 year old I was riveted to the spot, avidly reading about the success that Billy from Nelson had fishing for carp using corn and finding out about traditional soft furnishings from the North of England and how they are made from rare breed sheep… and stuff.

    Every visit to the neurologist came with a selection of tests. There was always a blood test, which I’m sure was looking at something important however this was never really made that clear to me. Or I wasn’t listening when they told me ;S. Then, came something that was far more traumatic than a blood test… I had to be weighed. This to some may not be that much of an ordeal. But I was a rather large child, we tended to put this down to my medication. But looking back, the most probable explanation was the considerable amount of food that I used to eat. Lots of it.

    Anyway, back to the scales. I would stand on the scales the nurse would move the weight, then move it again, and again, and again then finally settle on something astronomic. She would then look up and hope that I might be able to pull some points back once she measured my height. Erm, that didn’t happen either. That nurse would look at me, smile then hold the door open… Wide. She never ever said a word, she was a good’un.

    It wasn’t all bad I did catch up and grow and stop putting on weight, but by that time I was going to a different clinic. I didn’t get the chance to show that nurse that I did eventually grow… upwards.

    Now the blood test, for some reason was always done using something that looked like a canular, I would follow the blood around the curly straw and into the syringe, I was mega tough. I have always tolerated needles without a problem. In fact I strongly remember asking the nurse (on numerous occasions) if I would be able take the blood. Oddly they would laugh, I was deadly serious. I genuinely thought that it looked simple enough and that they could be getting on with something else, other nursey/nurse-like type stuff. I’d planned it out in my head, We would come in, then take a seat but on the way pick up a needle and syringe (typing this, I realise now that I would sound like a nutter if I still thought this, drive-thru blood tests indeed). Then I would take the blood and pop it onto the trolley. Bob’s your uncle, all done. This was a perfect situation, in addition to this, I would just tell them what I weighed… Simple childhood genius. In my head I had reorganised the job description of a nurse because as far as I was concerned I could see no genuine reason why I couldn’t do these things myself ( I do now).

    So, so far during my visit I have read magazines beyond my age and interest (not exactly tricky, but it did seem like they were trying to cause a riot of disinterested children) and adopted the role of covert manager of a department within the NHS. By this point I was yet to see the neurologist (I’m not complaining, just saying :) ).

    I would eventually get bored and return to my seat next to my mum or dad and wait in the plastic molded chairs, which were dotted in between gaps by doors ( now as I am writing this, I have realised that this space is in fact called a wall…). Mum and I looked at the beige vinyl floor waiting for my name to be called. I don’t think that mum really fancied reading carp magazine either.

    The doctor would appear from her door and call us in to her room. The first time I saw her I instantly liked her, she had the face, manner and voice that was put on this earth just to tell people stories. She should have presented Jackanory or worked in a library, aside from being a super doctor. In my head, she was what Enid Blyton looked and sounded like. However, she did not read me stories she had a different job all together. Entirely.

    To me her job consisted of different mystical tests.Some that involved drawing a square with my wrong hand. I could never get it across to her that I would be so much better at this game if she just let me use my right hand! :) . I also had a little bit of a P.E lesson, in the form of standing on one leg and then walking on the outside of my feet. I couldn’t tell you if I was awesome at that or not, but like I said before, back then I was not lacking in confidence! The final test (there were others but they took ages and seemed silly to a 10 year old) that I had to do involved the tortuous tickling of my feet for what seemed like hours. I am incredibly ticklish. Despite knowing this, my doctor (who I think is amazing by the way) would proceed to tickle each foot. Then almost smile at me, like the cheshire cat! She knew what she was up to, she watched me trundle reluctantly to the bed and then with (what I thought was) sheer delight would watch my reaction with joy. I would do exactly the same if I was in her position :)   The test she did involved running something blunt but pointy up the middle of my foot and I would wail because of how ticklish it was. I’m sure, really she was just laughing at me, really.But in my 10 year old head it was a conspiracy to tickle my foot. I used to be convinced that I was only person that had to endure a neurological assessment of the limbs. I watched the guy on the youtube video and he didn’t even giggle… My next job…I’m going to check if he is in fact a real person. ;)

    She was an experienced neurologist, she always had an answer and that makes me think incredibly highly of her, she was wise, wise like Yoda. However, she made sure I was the one getting the piggy back. My Jedi training consisted of drawing squares with the wrong hand and walking funny.

    Oddly I think there is something strangely nostalgic about this neurological examination of the limbs… Yes, I understand that it is weird but, I’m just being honest.

    Neurological Examination of the Limbs

    Despite my confidence, there were questions that I wanted the answer to but never asked. I was always given the opportunity, I just never did.

    First of all:

    What use can tickling someone until they squeal be to this examination (I know now)?

    Why, if my legs give way, are you opening my brain up? (This answer did come but pretty late in the day)

    Who chooses the bloody awful magazines in the waiting room?

    Why can’t people do their own blood, height and weight tests? I could have structured the whole thing for them. No problem. ;) Their loss.

    What makes me scream when I have a seizure?

    There were other questions, but I wasn’t really that concerned at the time. So I try not to be now (this doesn’t work!).

    By the time I got too old for the children’s neurology department, I had been moved on to the teenagers and young adults, (probably due to my radical drive-thru restructuring ideas that were clearly becoming more and more necessary with each visit ;P) by that time the children’s department looked awesome. It had kids books and toys, soft furnishings, the lot. I think this was due to me (as an 10 year old applying intensive political pressure ;) ). Maybe not, maybe it was those nurses after all. Who were, and still are simply brilliant.

     

    Cheers for reading, please comment if you like.

    Thanks, Ant :)


  7. Know your limits, because they know you.

    October 9, 2012 by apobartley

    angry-blackberry-bunny-cute-rabbit-Favim.com-129815

    A couple of weeks ago my limits were shown to me in a clear and concise manner.

    It had been weeks, possibly months, no probably years since I had gone to out to the pub with my friends and which had then out of sheer politeness and joviality lead to a continuation of the party mood into town.

    Now I say town, I mean Newport South Wales which is my home town. It is in fact a city but some decisions will always be far too silly to just go along with! Now lets not be to harsh, it is the home of the famous (?) Goldie Lookin Chains, and the Ryder Cup was there a while ago. All the visiting Americans went to Cardiff instead of Newport, I think this was a cunning ploy by Newport Council to fool all visitors into thinking that they were in Newport. If that is the case, I’m not complaining ;) . It’s status as (when it was a town) the most violent town in Britain may have had an effect on the mystic migration of all visitors but I do think it was for the best.

    In case you have never hear of Goldie Lookin Chains, they are (at least I hope they are) a parody rap group… have a look. The language can be …choice. Another reason not to visit.

    http://www.youtube.com/watch?v=Dx8CZyFM4b4

    However, I like it, it is my home town and I seem to have gone my whole life so far without coming across trouble there on a night out. I’m the exception. Maybe the only exception.

    Anyway, like I said it had been a measurable period of time (I’m too indecisive to actually choose how long) since I had a night out with the lads.

    As a person with epilepsy, going out for a “few beers” and an excruciatingly late night has never been my forte but I have always been one to take on a challenge. The outcome would quite often be the same, and this time was no exception.

     In this situation my epilepsy responded in a couple of ways.

    1.The tegretol effect. Tegretol comes with a warning which says something along the lines of, don’t drive heavy machinery because you might get drowsy. On first appearances, this is often a reasonable side effect which almost guarantees an amazing night’s sleep. However you are ALWAYS left unsatisfied. A bit like a McDonalds meal does, you eat loads but soon after you could eat again. There is no pleasing some people. If this is mixed with alcohol the word drowsy is replaced with non negotiable urge to sleep (or debatable consciousness), then and there. Awesome. Let’s picture it… Everyone is just about getting into the swing of things and then like a steam train it hits you. THE TIRED. There is no fending it off, simply becoming the docile, passive even questionably conscious person in your group. Now when this happens to me I would be able to sleep anywhere and in any conditions. It has also, in my student days left me susceptible to becoming a human graffiti wall… brilliant! :(

    I have a very strong memory of this overwhelming tiredness hitting whilst waiting for a late night train. I sat down, and thought that I would merely rest my eyes. I was awoken hours later by the busyness of commuters on their way to work. I should have thought that night through really. As I was woken up I got moved on by the station attendant, I insisted that I had a ticket however, I had missed my train by 3 hours. To be honest he had a point!

    2. The day after will feel like an epilepsy assault course.

    For example, I could find myself in the situation where I have been out to the pub, however I have been really quite well behaved, ie sticking will within my limits. This however, does not mean that I have escaped my day after, ordeal. Also, I am pretty sure it is an ordeal for the others around me as they have to endure my moodiness and the sudden disappearance of my patience and manners, aside from a plethora of partial seizures that are exhausting. Now I know that I have brought this on myself as, I am perfectly aware of where my limits are yet I choose to ignore them. The effect is best illustrated buy the pictures bellow…

    I start off like this…

    http://favim.com/orig/201108/24/angry-blackberry-bunny-cute-rabbit-Favim.com-129815.jpg

    And mutate into this…

    http://2.bp.blogspot.com/_fmne4tFvjvE/TNlfu68vCyI/AAAAAAAAG98/ZnhOPUh--Fo/s1600/angry_ostrich.jpg

    Secretly the annoyance must be me hacked off with myself for not just staying inside and watching Homeland or something like that. But one day you all may see or feel the lure of Newport’s below… If you do, ignore it. Go to Cardiff…

    This was foolish behavior on my part, and it was behavior that evokes very little sympathy (understanding is always there however).  I think this has something to do with my lack of prevention… Despite knowing better than most. For example; it would indeed be daft to jump out of a plane and forget your parachute. However, it would be ludicrous is the person who forget was the plane, jump, diving instructor guy or lady. You can imagine the conversation on the way down…

    “Oi, Jimmy, I’ve forgotten my shute!” screams instructor Bill. “What, how did you do that? it is the one thing you had to remember!” screamed Jimmy. “Yeah, I know, I just got carried away in the moment, plus there was some awesome music on, totally worth it!” wailed Bill in a resigned manner, “Can I use yours?” asked Bill. “Erm, no. you should have known better, next time you’ll know… one day you have to learn DUDE!”. “I guess so. You are an amazing friend Jimmy” Bill cries. “Dude you are not having my parachute!”.

    Maybe that wasn’t the best example but dialogue isn’t my forte and neither are comparative examples… However you get the idea. Nobody felt sorry for me as, I should and do know better. But sometimes I just would like to know that normal feels like for a little while. I always get punished in some way shape or form. Next time maybe I will watch Homeland…

    So this is all about knowing my limits, and sticking within them. When I was at university I pushed those limits and learned quite quickly that there was a backlash and often a violent one. But I have been really lucky to have people in my life who have known me well enough to know when it might be time to call the evening a draw. For example, if I go out with my friends, our rule is that we all go home together. They also know me well enough to know when I am starting to struggle, they have been known to call the night a draw at that point. That is why I am lucky, they are good friends.

    Thanks for reading, please leave comments of questions. I will get back to you.

    Cheers, Ant :)

     

     

     

     


  8. Dear driver…Incidents on buses happen all too often!

    October 2, 2012 by whatepilepsyisreallylike

    genius

    Letter to a bus driver… AGAIN.

    I read this week the disturbingly familiar story of the young girl who tried to use her bus pass but was refused because a bus driver who must be working for ATOS on the side decided she didn’t deserve it.

    Here is the Sun’s article.

    http://www.thesun.co.uk/sol/homepage/news/4560177/Bus-driver-tells-teenage-epilepsy-sufferer-Youre-pass-is-a-p-take.html

    I had a similar experience, well to be honest I’ve had similar experiences. As a person with a disability that you can not easily see, you seem to be on the end of challenges from people who have become instant experts.

    Oddly my most memorable experience happened on the bus too. I wrote about it in April have a read…

    http://wp.me/p2lUGl-Q


    When I was talking about this young woman’s experience to my Dad he jokingly said that we should have something written on our heads so that dick head bus drivers can’t miss it. This got me thinking…

    Not being able to see epilepsy is a bit of a double edged sword. For example, When I am not having a seizure I don’t look like the type of person who might need a little help from time to time. So it catches people off guard when I do. Or better, people think I am drunk and ignore me… nice.

    On the other hand I can disappear into a crowd or mingle into a group and no body knows that I have a busy brain going on. Here lies the problem, when it comes to disability, many people who do not have some mild understanding of disabilities and chronic conditions live by the cruddy mantra “seeing is believing”. I will not be carrying MRI scans and a neurologist in my coat pocket to prove to some tool on the bus that I am entitled to something that is none of his or her business. I do hope people start suing for this blind ignorance and soon!

    My plan of action has, like on the current brilliantly high profile recent incident, has always been to be open and go at them with a good offence. This hasn’t always been the case, I used to look at my pass and almost, limp on the bus. I’m embarrassed to type this. A person should not have to feel that they should do that, to hide what is normal to them is wrong.

    It is however, a bizarre situation when you want to travel on a bus and your authenticity is being questioned, anb all the while I/you are questioning their own hygiene practices (this is based on MY experience). However, I do not do this, I would not do this! Because we are humane, maybe this person has some reason or condition that needs some understanding, so it is given… Should this not be mutual?

    I have written a short letter to the bus driver, however he/she is more of a metaphor for general ignorance. I am hoping that he/she will read it and understand a few thoughts of mine…

    Dear Driver,

    I am writing to you to see how things are going. Anyway enough of the disingenuous small talk I think you should hear a few things. READ!

    People with disabilities should not have to prove their disability continuously, this seems to be more and more the case these days. The nature of the term implies that the condition isn’t going anywhere anytime soon. This has been defined by the equality act, should you wish to read it for yourself it is WIDLEY available. However, there is a growing number of people who are mistaking people with disabilities, for people who are signed off work as being un fit for work, when really they have just learned how to say the correct answers to the Doctor in the test in order to get what they want. These people will always exist. So will people with genuine need. Ignorance doesn’t need to.

    Back to you driver, possibly you thought that this young person person was ANOTHER benefit scrounger getting on your bus for a free ride, and that day was going to be different. Maybe the spirit of Robin Hood entered you and you were going to kick off the bus, pass bearers 1 by 1. (I am being really quite creative there but you are getting the idea).

    The simple fact is, that people need to know that firstly just because you have a condition/disability/ilness which entitles you certain reasonable adjustments does not mean that the hospital in response issue people with a cane or a chair as a sign to people who question their authenticity, they are provided to make the world more accessable, they are not for your benefit Secondly, you can’t see a lot of conditions and disabilities not because they are small or far away either and thirdly if your job description doesn’t say something along the lines of ‘person who knows something about being an all disability, genius’, please keep all thoughts, prejudices and general ignorance to yourself. I promise, you will have far fewer newspapers, tv crews, and many more friends and probably live longer. If it sounds like tripe when you say it in your head. It will sound worse when it is repeated ALL OVER THE WORLD!

    Thanks,

    Ant

    Oh this message will self distruct in… some seconds…

    Please leave a comment and I’ll be glad to get back to you. Cheers. Ant


  9. Side effects, they are never super powers…ever!

    September 22, 2012 by whatepilepsyisreallylike

    moody1-238x300

    I am sure that you are familiar with the tragic beginnings of some of our most famous super heroes. Take Wolverine for example; he was injected with the metal adamantium and left with the power to heal, in addition to this some quite treacherous nails, oh and a mood problem. I can relate to the mood problem.

    Then we have Spiderman who was bitten by a toxic spider, only to find out that he has all the powers of the said spider. In theUKwe have/had a superhero called banana man… He was just a man that ate bananas and got strong (subtle subliminal messages… :-S). However nobody every mentioned the dangers of a banana induced potassium overdose!

    In my mind these are all side effects of a situation, condition, or dose of medication. In their cases they work out as something that can be advantageous. However I doubt the X-Men would take me, my ability being an uncanny knack of being able to sleep whenever I like for as long as others will let me, or that I can make the room spin (in my head). Or that I can get moody at ANYTHING!

    I know that to some degree that the comic book heroes were made to celebrate difference, (apart from batman, he came off badly) but my side effects are sometimes pretty poor.

    Honestly, there would be no complaints if the side effects listed infinite strength or the ability to fly or x-ray vision. Drug companies, would not no where to look. I’m pretty sure that the police would give me a job then…

    Also if you think about the term, side effect… side effect. It sounds almost like a throw away comment. As if they are something that you could dismiss altogether; like side dish or after thought ah, if only it was that simple. If only they were banal as that mini question “would you like onion rings with your whopper meal sir?” I get asked it every time, I’m sure, but I don’t remember it. This is because it is a side dish. Not the main thing.

    The odd comparisons continue.

    However, when it comes to anti-epilepsy medication we balance out our main meal (the anti-epileptic qualities) with some side orders that we didn’t ask for. So before you know it, your whopper meal becomes… Fries, onion rings, dohnuts, large drink, ice-cream and a whopper on the side.

    But, and it is a BIG but. If I look at it all, I would much rather have all those side orders if it meant that my whopper was doing me some good. However I know people have their limit and it is all about what we as individuals can tolerate.

    Please leave a comment, or ask a question. I will get back to you. Cheers.

    Ant :)


  10. I hear music before my seizure… Do I owe anyone royalties?

    August 30, 2012 by whatepilepsyisreallylike

    brain-300x225

    Following years of weird auras before my seizures there has been one which makes me laugh every time. I am quite lucky in that I have quite a complex collection of auras that happen prior to my seizure, it gives me time to prepare and what not. The one I am writing about today is far from unpleasant. Well it depends how you look at it ;) .

    I hear, in the seconds before my seizure music. Music of varying kinds , but it is indeed actual music. Last time I heard it, my brain played me some Tenacious D (it was from the good album with the blue cover, I’d have to wash my mouth out if I told you the title). I haven’t listened to them since I was young enough to openly admit that I listened to them. I played t to my dad once, it was greeted with an open mouth and stunned silence. That truly was a first.

    It’s taken me years to identify this as part of my aura mainly because it is incredibly quiet, normal background noise drowns it out. I even think the Dr thinks that is one aura trait too far to believe. However it isn’t like I’m going in his office and telling him that in the moments before my seizures I become fluent in maderin, although that would be useful!

    The first time I made the connection I was in bed and I heard it, clear as day (funny metaphor, I know), Franky Goes To Hollywood-Relax. The cheek of it! Oh the irony, was my brain mocking me? It usually does. What happened must have happened in a 30 second time frame but I was almost dreaming so time was all wrong.

    Sometimes I wish I could choose the music, I could take the jukebox approach to it mostly because the most recent of occurrences haven’t been that enjoyable aside from the highly amusing evening of Franky says relax! Incidentally the first word of Franky’s advice (relax) is worth taking at that particular point in time, so it became a sort of mantra. I make no apologies for the song choice, it chose me ;) .

    Incidentally My ‘ears’ have been spared the torture of offensive music. However My wife has been playing the music from Wicked non-stop. So I am half expecting to hear that. Imagine the torment! I lie down, just about doze off then, all of a sudden, I hear her the blonde one from pushing daisies singing ‘popular’ like her life depended on it. Just thinking about it makes me shudder…

    Or even worse… Annie Lenox. :( That would be terrifying, I couldn’t cope! I have said enough about that (cold shiver). Or even…more worse.:S Sting, when he was doing that thing on a lute. I still think that he should apologise for that.

    Most recently I have even heard dialogue from television shows, Alice Tinker from the Vicar of Dibley made an appearance one evening, as I heard the words “get away from her you bitch!” over and over. I knew it was her, and with the help of my wife we narrowed it down to the episode when she is proposed to by Hugo. Alice then quotes the film Alien… As you do!?

    The amount of music that I do hear (these aren’t snippets either) if other people could hear them, could amount to copyright theft… Hang on do I owe anyone money for thinking? There could be a amnesty box to click on my itunes account ;) .

    I am glad this happens to me, mainly because I consider myself lucky to have auras at all. Believe it or not they make it possible, even safe for me to do the job I do. I don’t know if people will feel the same but I am great full to have this with me. But in an ideal world, I would prefer it not to interrupt from time to time.

    When I disclosed this to my Neurologist he did give me the, “are you sure?” look. Which, to be fair, I don’t blame him for thinking that. But we are all different, and the word epilepsy is an all encompassing term for a vast collection of often different symptoms. No wonder they don’t really have an answer. But things change daily, if not weekly. New things are always popping up. It’s that, that keeps me curious and interested in it.

    Thanks for reading and dropping by, please leave a comment and I’ll do my best to get back to you.

    Cheers, Ant