Purple Day- SEDEP: How much do you want to know?

Its only Wednesday and already I feel like someone owes me a day. Mum and I are sat here ready to submit to the week, on the condition that we can watch Holby City and scoff this quite frankly blissful birthday cake. I have to say that that is hardly a compromise.

With Epilepsy Awareness Day being so close I wanted to share with you something that really made me think. I normally try and get my head down live my life but this really made me stop and think.

It was a conversation that I had with some medical professionals and I was waiting for a time to share it.  Now is as good as any. So here are my thought on it.

Last week I sat freely discussing a topic that I had never openly discussed with ANYONE before. Despite being peppered with literature and efforts to raise awareness in hospitals and on social media. I have got to the 31st year of my life without the conversation about SUDEP, this was the first. It was like the first thing that we did was address the elephant in the room. In fact we didn’t address it, it sat down had a coffee and lead the bloody conversation as normal and as plain as day. It was a breath of fresh air.

And for someone who thought that they knew about epilepsy, I’m ashamed to say that I knew very little really about SEDEP. I knew what it stood for but this was a 90 min conversation and I used that up pretty quickly.

Now the question I was asking myself on the walk back was. Why had I never discussed it? I’d had information. But who reads every leaflet (sorry if you do)? Who really wants to know about this topic… Really? I never did in the past.

But I do now. I want to know as much as they will tell me. This is because prevention has served me well so far.

But what will they tell me?

So this was what we discussed. What did I know about SUDEP and did I want to know? There was more but I don’t want to be inaccurate, that’s it in a nutshell.

I’ve already told you the first question. What did I know…? Well, what it stood for. I am ashamed to say that I figured out what SUDEP was, from its name. However I had never in my 23 years of epilepsy ventured beyond that. Even worse I see articles every day if not hour on twitter that could tell me more. But I have never clicked on them.  In my defence I am now well informed. 

Now these might sound like easy questions that were posed to me,  however there are so many variables that make sharing information more complicated. But this doesn’t change MY opinion whatsoever. A high risk patient is a high risk patient, and there are preventions that people can take.

What variables? Well, what if you have a person with epilepsy who has uncontrolled seizures and also lives and manages depression and anxiety. Is it right that your life balance that you carefully navigate, be tested by being told that you are at risk of SUDEP? But with the shoe of the other hoof. Is it right and fair that this information be withheld ‘just in case’?

What do you think?

Variable number 2: You have a child with uncontrolled epilepsy whose parents chose not to tell their child the risk of SUDEP. This child moves into adulthood, does the Dr tell the young adult of their risk?

What do you think?

I strongly feel that all people with epilepsy should be aware of and discuss the risks of SUDEP, however my opinion is obviously just that, my opinion. I say all people because our levels of control can and do change with no warning. Then before we know it our quality of life has changed and people who were of low risk are now no longer of low risk. What we thought and hoped was irrelevant to us is now very relevant to us. Therefore the information that we were given ‘just in case’ now becomes a formative measure for our daily epilepsy routine.

As I mentioned earlier, SUDEP is a particularly traumatic topic to discuss for many. It directly links epilepsy and death; and that it happens to otherwise healthy people. We all find it hard to talk about, and to negotiate the link that we have with it. In the twitter community we support each other with a great deal of sympathy and empathy. We all talk freely and openly and quite frankly excellently about AEDs, seizures, side effects, injuries this list goes on. To some extent, we all have experience of these, we all have something to add. I wish we could have a more open dialogue about SUDEP. We do everything else so well.

The risk factors for SUDEP are here , you’ll notice that routine is the key. I’m sure many of us can relate to that anyway. I find that hard sometimes especially when you think it isn’t working. 

Thanks for reading my post, I will happily reply to any comments. That is unless you are spamming me with some sort of attempt to sell sports wear or contact lenses. 

 

 

The last chance (or a chance) of full control?

For many, me included being seizure free is and has been the pot of gold on the end of the rainbow. We all keep looking for it and with each new adjustment or medication we get a top up of vigour and motivation to achieve this goal. For me it has ended with that, “well maybe the next one” resolution. I have carried on this way since I can remember. To be perfectly honest, until recently I still believed that AED’s were the way that I would achieve this. But we all have our limits and lets be honest I still have a tumour in my head.

I have been waiting for a surgical consultation for the past few months, which is possibly why I have written nothing. I tend to have a policy of don’t say anything if you have nothing useful to add. Anyway my appointment date came. This one was different. The doctor and I were not going through the motions which we would normally do. This is how it normally goes: I would go in, tell him about my seizures, he would listen and then we would decide on one of the following options, depending on my health. My AEDs would be adjusted up, down, or a newbie would be added. Oh not forgetting the last one. Everything staying the same. This is probably a very familiar tale.

As I said, this time was different. I was being assessed for possible suitability for surgery as an option to stop my seizures.

Now a bit of time has passed since then so I have been able to stew on this a bit. But in that room, you can’t exactly say that I was thinking with the most clarity and to really help things I could feel an aura starting. Splendid.

In a nut shell. I am seeing a surgeon, getting new scans etc. What it could mean is, that I could be seizure free. I could also mean a lot of other things like not being being seizure free and having other things to worry about too.

In hindsight I sort of wish that that appointment had that going through the motions feel to it. I took comfort from that in the past. I made me feel that, despite nothing changing that I was still okay and that I was going to be. However maybe that was me just wanting to be pacified. Now the future has new choices and uncertainties which I am not used to as I am sure others aren’t.  But I don’t think that I can shy away from this one. Either way its my choice.

I wrote earlier about clarity, there is still a lack of clarity but I think that will come with more information and time. Thankfully both of which I will get and have, many people in a situation like mine aren’t so fortunate.

Thanks for reading, I’ll do my best to answer your comments. Unless you are spamming me about sunglasses or shoes, you know who you are.

Ant :)

Is Ignorance Bliss?

Lets imagine for a minute that instead of living my life knowing about and finding out about epilepsy (because its part of it), I ignored it and denied its existence and the effect that it was having on my life. As you can imagine for most people this would be quite a difficult prospect.

In my humble opinion the range of difficulty that we are looking at would be on a par with hiding a fully grown African Elephant in your front room. It is ridiculous

But if you are going to do it, it requires serious thought and planning! This is what makes it a sad and lonely choice.

But not the only one.

Now, don’t get me wrong I’m sure that this may be a doable situation as you can see the elephant is basically invisible to the untrained eye, untrained being someone who was shopping for an elephant lamp…

Right. Back to the original point for a bit. There may situations where people, instead of seeking treatment try to manage epilepsy without any help. Please note that I am using the term manage loosely. By definition that word would imply that there was some sort of organisation or intervention involved .. What if there wasn’t?

What would that make those people? By denying their own condition, are those people denying an aspect of themselves too?

I hold the opinion that watching a person with epilepsy live and not granting that person treatment (if there is treatment available) is tantamount to neglect. It is not good enough to say that a person is worried about stigmatising the person, If this is the reason to withhold treatment then this is still neglect. Do you any less have the condition because you decline the treatment?

In addition to this, the person who decides that the person should or should not seek treatment is, actually doing this for selfish reasons not with a caring heart. And wanting that person to achieve all in life that they are capable of. If I have not had medical  intervention though out my life I would not be able to function as adult. This decision was taken by my Mum and Dad without so much as a hesitation. Even the most dangerous of surgeries. Being denied these, would have denied me the opportunity of a career and a life. Yes I live with the knowledge of people’s misconceptions of epilepsy but as a wise man or woman once said. ” Fuck em”.

Ignoring the elephant in the room and supervising the non-treatment of conditions such as epilepsy must be, and probably is, a selfish, act of neglect. I am thankful that treatment options always outweighed possible unknown effects of peoples’ ignorance. But in my experience, people are more understanding and willing to learn than we give them credit for.

It is not good enough anymore to turn the other way to treatment or the condition because of stigmatisation. The regrets if it went wrong would far outweigh whatever people fear.

Having said all this, maybe I’m looking at this from the wrong way around. I feel that all people with epilepsy should have every opportunity without hesitation to gain control of a condition that we know can sometimes take a long time to do so. So the sooner treatment starts the better. But this is different to my point. I’ve been talking about seeing the problem, and doing nothing. There are some people who have a genuine fear, a fear that goes back generations. A fear that makes them mouth the word instead of saying it. Now its these people that I worry about. It is these people who need the support.

Thanks for reading.

Ant :)

To be taken orally… Really?

This has absolutely nothing to do with my blog, but I am writing this at the same time watching a film about mankind harnessing the power of “dark energy” only to underestimate its power. They only have until the end of the… film basically to save the world from destruction. I imagine it all works out fine, but I’ll keep you posted as we go along, if the film is shocking then I’m going to sack it off.

Millions if not billions has been spent on epilepsy medication development since year dot. Many of us have benefited from some spectacular choices and combinations of medications that mean we can chugg along quite nicely. We make a hit or miss decision of “pick and mix” pills, its either the best thing to happen, the worst thing to happen or even worse… nothing happens.

Pic-n-Mix1

I have noticed that millions if not billions has been spent on many other types of medication, and as the years have gone on the choices have expanded. This is an excellent thing. We can’t always access these drugs and this is another issue but thanfully the research has been done in the first place.

I am pointing out the obvious.

There is just one comparison I would like to make.

If we compare developments in technologies to developments in AEDs there is one massive disparity. Size.

Phones, computers, bits inside computers and all other technology stuff are all getting smaller yet better. However my newer, more modern and better tablets seem to be getting bigger and more plentiful. I.e. more to swallow in one go. Its colourful gravel.

When I say bigger, I’m not just being fussy. I have had no problems swallowing these things in the past. Nowadays these things are huge! You can honestly question which end you put them in. If I didn’t know any better, or could read, I would be cautiously looking south :-S.

Film update: male protagonist is in therapy, he doesn’t get on with his daughter. He is highly likely to go through an ordeal which will save the world and bring him closer to his daughter. Just a thought. 

Have you ever looked at a phone or a computer or thought, wait, this is far too sleek and stylish? They should make these things bigger and more clumpy. No.

So why am I looking at AEDs and thinking that we have moved on to suppositories or a job lot of suppository packaging? It is basically like eating shoes, bad shoes, not even good shoes, ugly clumpy, not even sleek and easy to swallow shoes..?

I am going to add into my daily calorie count (I have NEVER counted my calories). I am going to add a pack of butter with which to lube up my AED shoe size tablet torpedoes. They will just glide down and breakfast and lunch with be covered all at once.

Film update:The world hasn’t started to end yet… But it looks like this guy needs therapy too. Must be all that dark energy flying around. 

Despite my tablets coming with a “not for beginners” label on them. We have been getting on rather well. I am secure in the knowledge that these tablets will not make my eyes and finger nails blue. Or as by good friend described it “basically becoming an actual avatar” or a filly paid up member of the blue man group. I am almost certain that becoming an avatar would not have been on the cards but with my old pills blue nails and eyes were, hence the MASSIVE new ones. But it did get me thinking.

Imagine if they didn’t stop me from taking the tablets, what if they said “well if they work, its up to you”… Good job they weren’t that blasé. Were some side effects worth the risks if the meds were that good?

I turned the film off, it took to long for the world to harvest dark energy. This was mainly because of was a series. I didn’t think that I was ready for that kind of commitment ;).

Despite all the progressions in what medications for people with epilepsy can do. I think there is some kind of double dare to us/me saying “I dare you to add this monster bad boy to your cocktail of goodies”. It at least makes me smile. If only apple made and samsung made AEDs.

Thanks for reading, please leave a comment. Ant :)

Mushy peas and mushy head… Just Mush

I wrote this blog over two time periods. The first, when my brain is getting used to new meds and I was fighting to keep my eyes open. The second was when I was used to the meds and noticed that I failed to click publish when semi sedated on multi-meds. It is FAR from a literary experiment. Have Fun!

I’m really not used to not used to being unable to predict when seizures would happen. So these last few weeks have been a learning curve. I feel like someone who is being overwhelmed by something, despite its familiarity. Its as if I am a life long musician who is learning a new instrument.  The knowledge is there however the second nature like familiarity is far from present. Like a trumpet player taking up the piano after 20 years or parping and rarting and really making a hash of it (I really could have just said that in the first place)…

Everything takes thought now. It lacks the intuition that was there before. Which in real terms has made things like walking down steps problematic but not impossible.

nacho-guacamole

My head is an odd place to be at the moment, it feels like I’ve borrowed it My head being in an odd place isn’t even me trying to say I’m feeling down, I actually think my brain has vacated the space between my ears and left me with tapioca pudding as my primary decision maker. At times my “pudding” is as clear and quick (I use that term loosely) as it has always been. But then at other times, it is thick and claggy like old guacamole. Any ideas or thoughts that try to trudge through this turgid mess break off half done, as if they were cheap nachos in dip. From there I am almost forced to give up. I am almost certain that thinking clearly is an important process but without it I a am only good at two things. 1. Netflix and 2. Eating. If you are lucky I can combine the two. This would be a good day. High five…

I wrote those paragraphs a while ago but did not publish, this is possibly because I was waiting to see what happened or I just forgot. Both are likely, however I would be more inclined to go with the latter.

My meds are bedding in now, I think I am pretty much used to a gloopy head it has caught up to me or I have just acclimatised to it. Either way I am not being obstructed, which is good. Granted the pills are doing absolutely nothing for me, but I think that is to be expected when there is a fine specimen of a DNET tumour in my brain. So I am at the point of drawing a THICK line under all the different meds, and just saying no.

I’ll just see how I go with what I have. Nothing new please, just the status quo would be splendid. Then. Wait for the surgeon.

Spending time watching awake craniotomy vids on YouTube has been oddly therapeutic for me.

https://www.youtube.com/watch?v=16u4di_lKWI

My parents and siblings however are truly scarred as a result. Maybe for life, so in a way… Job done? On the other hand they are also truly scared for me. But, in for a penny in for a pound.

I do feel the need to look at the process of brain surgery. Mainly because I take comfort from the fact that others have done it before me. I have even done it before, but it was different then. There was less to lose. That I knew of, at least. So my thinking is that if you loos at something long enough, and its complications then you can only accept the whole package. As the outcome is worth it. If the outcome isn’t worth it. I’m not going to do it.

Oh shit, I just typed that, I should at least stick by that now… Now I have to think if the outcome is worth it. Crap! Oh, I give up, that’s for another day.

Anyway, have fun and cheers for reading. I was going to blog about the NHS so it could have been worse ;)

Please leave a comment if you want, I will reply x Ant x

 

 

 

Lots to think about, is it weighing down on my head?

Optimism is dangerous. It can lead you down a path yet you only find a dead end you are left with no option but to turn around and head back the way you came.

Maybe all the excitement about possible surgery has lead me to take my eye off the ball. I think, however I am not exactly sure if I had a different type of seizure today. It was really quite peculiar, and I am at the point where I am not exactly sure if it was a seizure at all. The only thing that makes me think that it was, was the neurone scrambling headache that followed.

Scrambled-eggs

It was over in an instant, I felt it, clear as day. A sudden push on and through my head down. So much so that I felt my knees buckle. How could the pseudo shove make my knees buckle?

I don’t like this change, if it is one at all. I know my seizures, how to manage them how long they last. So do the people around me who know me. When this happened I couldn’t present myself with the familiar confidence that comes from knowing what is happening and the knowledge that I will be safe. For the first time in a while, the people around me were concerned. Some people would tell me to summit to it, reduce my anxiety.

RKIN200.pvw

 

But old habits die hard. I need some semblance of control. It’s that that gives me the confidence that moves me forward.

Has the game changed?

I’ve been thinking a lot recently about the prospect of possibly having the opportunity to be seizure free. My natural indecision has kicked in with full force. The main issue is that I am indecisive. If I can’t decide about what shirt to wear to work then how will I make a life changing decision with conviction? Or is that prospect possible at  all, even if I was a decision legend or master? As opposed to decision (knight)mare!

I am seriously crap at making decisions. Although I do like to defend this part of my personality. It does make a person spontaneous and care free, however, I don’t think that will wash with a brain surgeon. I’ve been told that they are reasonably buy people ;).

As I write this now I am struggling with the idea of going downstairs and making myself some marmite on toast or maybe some fruit… This is ridiculous… Of course I’m going to get toast (there is never a bad time for toast… except in the rain or when swimming).

I help people to come to decisions every day. I give people exactly what I have been given. Options. When they are my options, It’s SO MUCH HARDER. I’m not talking about the toast ;).

What isn’t helping is that I watched the film Awake. If you haven’t seen it, its horrific. I won’t spoil the horrendous experience of watching it for you. Trust me it is truly a poor choice of movie for a person musing on the idea of surgery (shudder icon really should go here).

My mates have obviously showed me the lighter side of my alternating, coin toss, lets call it frantic method of working towards making decisions about the future. They have highlighted that I have indeed changed my mind each time the next pub visit comes along. Knowing them they will open a book on what decision I would make. At this point the odds are pretty good either way!

I would love to share with you how the lads have made light of ALL the possible outcomes of me having brain surgery. But, I really can’t bring myself to do that, mainly because it would (even on world free speech day in the free speech club) be at least frowned upon. :) You get the idea, they however, are absolute legends.

I start another new med next week, which is swell. So that means coming off another one. :S I’ll keep you informed.

Cheers for reading,

Please leave a comment, I will do my very best to get back to you (no excuse really as my phone rings when you do and I can’t turn it off) :)

Thanks Again,

Ant

 

 

 

 

No news isn’t always good news, but sometimes new news is.

Routine

For so long management of epilepsy has been routine. The same medication, the same seizures. No change, which for me is comforting. I have enjoyed the predictability and the control that I have gained and made use of over the years.

It has allowed me to work in a job with responsibilities and to feel valued. To be honest for me this a feeling that, despite the needs that I have ,I am still able to be a person that can contribute. The deal maker in my situation is that medication enables me to have a life at all.

But for some of us this may not always the case, a life without meds becomes an option. Where for most it is not.

Very recently I went to see my Neurologist; who gave me some surprising news. The news was thanks to developments is pathology, my tumour was re examined in the lab and was re-classified. For years I have been living with the fear that the low grade glioma that I thought was sitting in my head would wake up and change everything.

My meeting with my Doctor may have given me a choice that I have never had. The discovered that instead of having a low grade glioma, I do in fact that what is called a DNET. It stands for something long, there are too many syllables for me to spell it out. However, this DNET thing does change things, it may give me options. Options that I was getting used to not having.

I have also been given a new medication as one of the ones I am on can turn your retina blue. But the though that my tumour gave me options made that a secondary after thought. In fact I as actually quite curious about that side effect.

For the second time in my life surgery may be an option.

The first time, I was only 9 years old and I had no choice. This time obviously feels different. I am in control (am I in control?). I have a choice and my choices could change everything, or at least some things.

The prospect of surgery terrifies me. Especially a waking craniotomy (typing this makes me want to vomit, a lot, lost of vomit). The only image that I have, which I see over and over if Hannibal Lechter in Silence of the Lambs, with his victim’s head open… You know the rest. For me, it is basically that. But the possibility of being seizure free and med free is a tempting and almost hypnotic yet sicky prospect.

But it scares me, AED’s are my comfort, my key to an independent life. Can I live without my security blanket? 25 years is a long time (that isn’t an observation ;) ).

The feelings of optimism and the smell of possible success are very familiar to a person with epilepsy.  Optimism is liked directly to disappointment.  Every new med is attached with a hope that this one might just be the one. Every new suggestion of a new medication that had a new mechanism makes you sit up slightly. But it is the same as always. There are no certainties. But oddly even this is comforting in its consistency or inconsistency, however you want to look at it.

It is like going on a blind date or starting a shiny new relationship (to be fair this is an approximate comparison as I can’t say that I have had vast exposure to these types of situations). It is less than an ideal situation however it is an option. Which I suppose makes it a good comparison. Anyway. The first weeks of a new med are the like a period of small talk between two people who really do not know anything about each other, it’s awkward and you don’t want to sound like a stalker. Things could click however things may not. And if it fails, your level of disappointment comes from the amount of yourself that you have invested in it. So these days I don’t invest much, in the meds that is.

As things move on and the meds start to have a positive effect, I like to think of this of a honeymoon period. Everything is rosey!

Side effects start to be a burden after a while, you know, your nails fall off, can’t keep your eyes open for most of the day, you get angry any at ANYTHING.

This is like that time after the honeymoon period when you notice the little things that get under your skin and eventually become unbearable. At this point it may be time to call it a draw…

I am not even at the blind date stage with my new meds, they still have a mystery. I am just left with questions. What will they look like? Will they be so big that I can’t swallow them? Will they be so small that I will drop them over and over until I give up and get another one out of the pack? Will the side effects be more of the same? Will they work?

Oh the wonder. The excitement… yeah… wonder… excitement… meh

I am used to change now, any change I just take in my stride. All the changes have been made in an effort for positive change. I’ll always try a suggested med or treatment. This is due to the fact that I honestly believe that we should never worry in anticipation. Only deal with the things that are in front of you and the things that you can change.

Cheers for reading, please leave a comment. I will endeavour to replay ASAP.

Ant

 

 

 

Good things come in threes, who knew?

I haven’t posted for while. I’ve had a lot on my plate as well as not having much to talk about. So because of that I took my Nan’s advice… If you haven’t got anything worth saying, say nothing at all. Funnily enough in conversation, I completely ignore Nan’s advice. I just spit it out. Any old crap. It just spills out like a verbal torrent of mindless blahh. To anyone (at anyone) that is listening or trying not to.

So, here is some new babbled crap.

 

brainmachine

 

I’m a month in to starting a new medication and coming down off an old one. To be fair, the one I am no longer taking was beyond useless. In fact, the med was in no way benefiting me. Actually, I was doing the drug company a favour taking that med. With all the other meds I take it was just one more to give a home to. I welcomed zonisomide with open arms into my belly twice a day, it was just freeloading, on the take, that greedy friend that never buys a round. I see this now. It had to go.

In flew the new and ridiculously small (literally tiny) retigabine.

Now for me, from day one I knew we were going to have teething problems. I am convinced that the 50 mg tablets were made by Borrowers. Every morning, lunch and evening the Borrowers are somewhere, laughing at this shovel handed goon repeatedly dropping pills, never to be seen again (grabbed by the Borrowers), it is an instant money spinner. For every one that you take you drop three. These borrowers are minted! Laughing to the bank.

So I am just about used to the 50mg tablets now, what I am failing miserably at the tiny and important detail of taking them three times a day.

All my life (as far as I can remember) I have taken some sort of epilepsy medication twice a day. After taking tablets for years you develop a sort of internal clock to prompt you to to take them or at least scream at you to remind you that you haven’t quite remembered to take them yet. This has taken years for me to do. But even one month in I am remarkably hit and miss at taking meds three times a day.

Now to be honest as a person with epilepsy it is unusual for a medication to be taken three times a day. Twice? Fine. Three times is defiantly new and different. I don’t cope too well with change.

I would normally be sceptical by now, but there are two things that keep me interested and plugging away with these meds. Firstly, the simple fact that I keep doing it wrong or dropping them into oblivion (I would like to find out where they are going and/or are the borrowers picking them up and reusing them?). And there are some good things that come in threes (and multiples of three) or are linked to the number three.

 

three-blind-mice

 

For example; Iron Man there have been three of them, the three bears, three amigos, three blind mice (although it was terrible that treatment was pretty poor, losing their sight and their tales. It was a bad day for blind mice), Hangover Movies, Kit Kats after you eat one, trimesters, concertos that three movements (mostly), olympic medals, prizes, awards in general, my siblings (there are three of us), the number of bones on the ear, the bee gees, wise men, good parts in speeches, Beetlejuice and obviously the number of sides on a triangle. Good things happen in threes. Yet it just feels unnatural to take meds three times a day.  I am clearly letting the side down.

So all this confusion and failure has meant that I have not noticed any side effects; of which one is retaining urine… Beautiful. But there is still time…

But I have that my seizures are slightly different, but I am not sure if it is a good or a bad different. So as it stands it is no news, which is of course good news. I will take good news for now.

So yes, I am no longer taking zonisomide. For me it was pointless,it was a nice idea but all it did was take up room in my stomach. Which is at a premium nowadays, my new diet means that all stomach residents are there on a need to be basis, they basically have a belly permit.

The introduction of my new medication is ongoing, and I am going to have to try MUCH harder to make sure that I am the best and most studious med taker ever. Tomorrow I am up to a full dose in the morning and afternoon (fingers crossed that I remember the afternoon dose). I’ll just remember all the good things that happen in threes, but I better be careful as my short term memory is so crappy that if I remember too many threes I could end up on a long digression and forget what I was thinking about…

So where was I?

Now I am not expecting too much from my new unnecessarily small tablets, mainly because I still have a tumour in my brain. There is only so much that the meds (any meds) can do. So I take them with the mind set of, take them and just see what happens.

Changing IEDs can be difficult, for me I am just waiting for something to change, something that is not familiar to me, something scary different that means that I am just going to have to knuckle down for a while and sit it out (See, threes!). I may joke about it, and talk lightly about it but it is a nervous time. Let’s just see how it goes. Fingers Crossed.

 

Thanks for reading, please leave comments I will do my best to get back to you as quick as I can.

Cheers, Ant x

A bit of partial cubism

 

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 :)

 

 

 

Pub seizure win or miraculous fluke?

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.