Just Epilepsy

Young Scot awards 2010

2011-06-22T11:31:00.005Z

With my incredibly sporadic posting on Just Epilepsy, I forgot to mention that a year ago I won a Young Scot award for the work I’ve done over the years to raise awareness for epilepsy. It was an amazing night although I still can’t believe I made a speech in front of hundreds of people. Other highlights included meeting the cute guy from Emmerdale and being presented my award by Darius (who was so tall he had to crouch down in the photo with me afterwards!). I'm very grateful to Allana Taylor from Epilepsy Scotland for nominating me - it was a massive honour.

An update at last!

2011-03-31T14:06:00.003Z

Since my last post (which was a while ago), a lot has changed in my life. I graduated university in July with a degree in English, my boyfriend and I split up in October and I moved to Edinburgh full-time in January.

Living in a new city by myself has brought all kinds of challenges my way. First of all, I can’t cook and my diet still largely consists of pasta and cheese and scrambled egg and/or beans on toast. The first time I cleaned the bathroom I had to phone The Mother to get her to clarify just exactly what Mr Muscle meant when he said “do not use drain cleaner on standing water”. And don’t even get me started on filling out a Census form by myself! The largest challenge however, has come in facing seizures by myself.

Doctors recommend that everyone enjoy alcohol in moderation, but people on medication even more so. With the medication I take, alcohol tends to stop it functioning properly, thus increasing my risk of seizures. This was the reason on the morning of 13th February I had my first tonic-clonic seizure in two and a half years.

I woke up lying at a very odd angle on my bed with one of my flatmates sitting on my bed beside me. I groaned, realising what had happened and hastily wiped the puddle of bloody drool off my bedspread. Seizures are not attractive things, especially not in front of your two good-looking flatmates whom you’ve only lived with for a month. Sigh. Thankfully they are very nice guys, and seemed utterly unfazed by my seizure, shrugging as I expressed my gratitude.

The seizure gave me a massive fright however. Not only had I become complacent about having epilepsy, but for the first time I had to deal with having a seizure away from home – and The Mother. The days after the seizure were painful and my tongue, as usual, was bruised and swollen. The shock of the seizure lasted a week and I cried numerous times out of pain and self-pity.

The time has come for me to consider increasing my dosage of Epilim. I have been very hesitant to do this in the past due to the horrible side effects I have experienced with it. I have to weigh up what would be worse: having a seizure alone or fighting the massive urge to eat constantly. I am finding it a very hard decision to make.

Titan Crane update

2010-02-26T18:29:00.010Z

A couple of posts ago, I mentioned my boyfriend was doing an abseil from the Titan Crane for Epilepsy Scotland but then I completely forgot to write about it! I blame university for occupying so much of my time.

It was a really bright, sunny day, but unfortunately it was FREEZING. Epilepsy Scotland was just one of the charities there on the day, and there was a few who were abseiling who were in fancy dress. Unfortuantely I couldn't convince Ian to dress up as a fairy. It was a fun day despite the cold, and Ian managed to raise £210!

Here's some photos, as promised :)

Group shot L-R Craig, Ian and Kerry

Ian showing off his Epilepsy Scotland t-shirt.

An arty shot of Ian mid-abseil

Appointments

2009-11-16T23:10:00.004Z

This week I had my annual appointment with my epilepsy specialist nurse. The appointment letter had been taped to my fridge for a year and yet I only just remembered to go.

When I was first diagnosed I think (though I can't be sure because The Mother has gone to bed so I can't ask her) that I had check-ups every six months and now, with 'partially-controlled' seizures they have been reduced to yearly appointments. With the appointment this week however, I found that even annual appointments seem quite frequent; they feel a bit like going to the dentist when you don't have toothache.

My first neurologist and epilepsy specialist nurse were located in Yorkhill Hospital for Sick Children which I loved. The Mother and I would always try and arrange appointments around meal times because Yorkhill has the best canteen food in the world. I visited Yorkhill from the age of 12 until I was about 17 or 18 and The Mother was always there with me. In my old age however I have been shifted from children's hospital to 'grown-up' hospital. The Mother insists I am old enough to go myself and she probably has a point, but I miss the macaroni cheese and chips days of Yorkhill.

The first appointments I had at Yorkhill were often quite complicated. As we didn't know which medication would work for me, many years of trial and error passed, with many side-effects, many disappointments and many questions asked. Although The Mother - and by extension myself, knew a fair amount about epilepsy before my diagnosis, there is something quite different about it when it applies to yourself. I found myself uncaring as to how it affected other, hypothetical people - I wanted to know how to control my epilepsy.

These days however, my appointments are routine. My last 'big' seizure was over a year ago and I am happy with where my medication is at the moment. I remember being 15 at Yorkhill and being warned about the driving regulations as it wouldn't be long until I was 17. '17?' I thought to myself, 'that's postively old'. And now, here I am, 21 and being warned at my grown up hospital about the combination of medication and pregnancy. As the nurse finished with 'so if you're thinking about pregnancy, come back and see me' I just managed to stop myself from saying 'but I'm not old!'.

Apparently, I am a grown up now. Sigh.

Strobes

2009-10-09T10:15:00.000Z

Most people in life have some sort of fear, many have more than one. Spiders, heights, divorce and failure are all considered reasonable and just things to fear even although not everyone fears them, and from those that do, not everyone fears them to the same degree. No one can deny that fear exists and fear is as individual as your fingerprints.

I do not like wood louse and can never manage to dispose of them myself. I hate being stuck in the middle of a crowd of people and I panic at the thought of disappointing my parents. When it comes to thinking of a topic I truly fear however, there is only one topic I can think of: the loss of control that comes when having a seizure and as a result – strobe lights.

Strobes are used to provide regular flashes of light and are used in industry and science. However, as a student, I am most likely to come across them in clubs where they are used to give the effect of slow motion. They are white in colour and flash so quickly, many people can be disorientated when they are in use.

I first came across a strobe light when I was in hospital after my first ever seizure. A common test used by neurologists to diagnose epilepsy is the EEG – a test which measures the brain’s electrical activity. By placing a strobe light in front of me whilst I was linked to the machine, any potential seizures I would have because of the light would be recorded on the EEG machine and a satisfactory conclusion could be made as to my diagnosis.

I was twelve years old when I had my first EEG and I was told about the strobe light beforehand. However, I did not know that the doctor perceived a potential seizure and as I had little experience of seizures I did not know what it would feel like. However, seconds after the light had been switched on I remember feeling “strange”. My arm began to move without my consent and my blood ran cold. Thankfully, the doctor, who was watching the monitor, stopped the light when she realised what was about to happen.

Since that test, I have had a fear of coming across strobe lights but unfortunately they are almost impossible to avoid. For my 21st birthday, The Mother bought me tickets to see Lord of the Dance. Unfortunately the strobe lights were on almost continually, which meant I had to spend the majority of the time covering one eye. What was the point in using strobes for a dance performance? They certainly didn’t add any enjoyment to it for me, and when we were leaving we overheard a woman complaining about the lights and how they had given her a headache.

Luckily, photosensitivity in epilepsy is relatively uncommon – less than 5% of people with epilepsy are photosensitive and even with those who are, medication should be able to control it. Despite this, most people without much knowledge of epilepsy assume that everyone with epilepsy is affected “by lights”. However it is only a small amount of people with epilepsy that are affected by certain types of lights.

The Titan Crane

2009-09-16T11:36:00.002Z

Over the years I've done various things with Epilepsy Scotland to raise awareness from small jobs like stuffing envelopes in the office to speaking to a room full of politicians about my experiences with epilepsy (something I never, ever thought I'd be able to do!). Epilepsy Scotland runs events throughout the year in order to raise money from fancy dinners to zip slides across the Clyde. This year however, the challenge is a little different. Brave volunteers will instead abseil down the Titan Crane - an 150ft high crane on the banks of the River Clyde.

This year however, I am wimping out! My boyfriend Ian however is taking my place on the 4th of October, bravely pulling on his harness and lowering himself down. I'll stay safely on the bottom, taking photos and offering morale support, whilst thanking my lucky stars it's not me going up there!

If anyone would like to help Ian and Epilepsy Scotland, you can donate at: http://www.justgiving.com/IanWilliams7/

Photos will follow :)

Chatting with a member of parliament

2009-08-27T12:37:00.003Z

This is me doing my bit for Epilepsy Scotland with my local MSP. I spoke to him about my experiences with epilepsy and in particular my experiences as a student. He was very nice and seemed genuinely interested in what I had to say.

Remember me?

2009-08-25T23:38:00.003Z

I am a disappointing blogger and for that I can only apologise. A while back, I was half-way through my third year at university, totally stressed out and needing a break from the internet. I deleted my personal blogs and abandoned Just Epilepsy, always with the half-hearted hope that I'd return at some point. After receiving a kind email from someone who had discovered this blog and had been disappointed at its discontinuation, I have decided to finally update.

Currently the summer holidays are nearing an end and as a consequence I am beginning to face my fourth and last year at university. I now officially have a degree which makes me feel very accomplished but I'm heading back soon for honours. I've spent the last three months successfully avoiding planning my dissertation but now, with nothing left to procrastinate with, I have found myself beginning to write notes and panic at the prospect of writing 10,000 words by myself.

Epilepsy-wise, things are going well for me. I haven't had a full-blown seizure for over a year now and my jerks are probably on an 'every-so-often' basis. My medication has been the same for three years now (Epilim and Keppra) and as long as I remember to take it, things seem to be fine. There is scope for improving my seizures further still but I am comfortable with my medication the way it is, with minimal side effects and so for now, I think I'll be leaving it as it is. Don't fix it if it isn't broken and all that.

So for now, I am back updating Just Epilepsy, however please bear with me as I am very out-of-practice. I will try my best :)

Brothers

2008-11-06T13:24:00.000Z

Brother Number Two once spoke to me as I was lying on the floor, post-seizure. Confused and silent, I just looked at him as he spoke gibberish, laughing hysterically at himself being so funny.

I didn’t know whether to be offended or amused when he told me this last night.

I'm back!

2008-11-01T22:53:00.001Z

I cannot believe the last time I wrote a blog here was in July. Shame on me. I am refusing to give it up however, as there are people who occasionally make it here and I hope they come across something worthwhile when they do find it. Nevertheless, I am going to make a resolution to blog here more often!

There is not a huge amount going on epilepsy-wise in my life at the moment. I have not had a seizure since July, not a major one anyway, but I have had some wee myoclonic jerks and some ‘faces’ as I call them. Certainly not complaining though.

I am in third year of university now, so non-epilepsy life has become a little hectic with presentations and essays, etc. I was also elected as the student representative for disabled students in the English department, so I’m working with one of the lecturers at the university to improve some things for disabled students within the department. One of the ideas we have is for a ‘safe’ room, where for example I could go if I thought I was going to have a seizure and didn’t want to do it in public, or if someone with diabetes needed somewhere for their injections.
Anyway, I’m sleepy, so I’m off for some much needed sleep. I will be making more of an effort here though, I promise!

2008-07-18T22:24:00.001Z

The world makes sense in its inconsistencies, in the moments where there is no sense. Like how I manage to take my medication and still walk into the hall to be confronted by The Mother, who tells me I’ve had a seizure. Too hot I explain to the man on my lunch break that let me share his table, but that’s just a guess, because I woke up roasting and babies who have seizures normally do so because they have a high temperature. But then I’m not a baby. Today I am paying for the seizure, as every muscle in my body complains at being thrust about carelessly, like I have any control over which wall I hit mid-seizure. My body is being extremely unreasonable if you ask me.

After work, The Mother picked me up and I complained at great length about everything I could think of. At home, she told me to close my eyes and hold out my hands. When I opened my eyes, there was a box of chocolates The Mother had bought me to try and make me feel better. I ate all of the strawberry and orange ones, and the Turkish delight, and then settled myself in for an evening of moaning/feeling sorry for myself.

Specialist nurses and being on the news

2008-05-24T14:01:00.002Z

Again, I must start by apologising for my lack of proper blogging. I'll say again that if you would like to read about my life, go to my other blog where I ramble almost every day on non-epilepsy related matters.

I was on the Scottish news last week, standing by the River Clyde discussing my experiences with specialist nurses. In Scotland there's very limited specialist nurses, and Epilepsy Scotland is calling for the government to rectify this and so: enter Jane! I've always had a specialist nurse, and I had never realised how much I took her for granted until I realised that not everyone has one. Basically if I have a question that I don't think I would necessarily need a doctors appointment for, I phone the nurse and either ask her the question over the phone, or arrange an appointment. Having a specialist nurse is good for asking non-medical questions related to epilepsy, for example methods of birth control, problems in pregnancy and obtaining a drivers license.

As for being on the news: it was vaguely terrifying, but I refused to watch it and therefore I have no idea if I made a fool out of myself or not! If it goes up on the website however, I will put a link up for you all to laugh at how far from eloquent I am.

I'm sure I had something else to talk about, but for the moment I seem to have forgotten what it was. If I remember, I'll be back!

Trapped in a horror film with no way out

2008-04-25T13:40:00.000Z

When things happen sometimes, you have to stop for a moment to wonder whether what you are experiencing is real or not.

I had stepped out of the shower, tired from staying up too late, and shivering from the transition from hot water to cold air. As I towelled myself dry, I blinked and in the moments where my eyes were closed – a dark, cartoon-like face jumped at me, teeth bared, and intent on frightening the life out of me.

It wasn’t real: it was a rare occurrence linked to the epilepsy. It wasn’t the first time faces and images like these have appeared. I have mentioned it to my neurologist before and although she had never heard of it she reckoned it could be epileptic in nature due to them normally occurring when I am tired.

This particular day however was the worst they have ever been. Every time I closed my eyes whether in thought or from blinking, faces would jump out at me. At one point I almost fell over as they kept appearing – and it is incredibly difficult to stop yourself from blinking, especially when you tell yourself not to. It’s hard for people who haven’t experienced this to imagine what I’m talking about – and as much as I call myself an aspiring writer, it’s difficult to describe them adequately.

However The Mother found an article in an epilepsy newsletter something which sounded very like what I was experiencing. Unfortunately I don’t have the newsletter with me at the moment, but it was something along the lines of “severe hallucinations of animals or people, receding or approaching, possibly linked to photosensitivity”. It was reassuring to read that at least I’m not making it up.

Has anyone else ever experienced something similar?

Two black eyes and one helluva fright

2008-03-17T22:34:00.001Z

With a frightened start I awoke, my bed sheets tangled around my naked body. The room was dark and in my panic I presumed it was during the night, and groggily I sat up in my bed feeling queasy. Stumbling up, I realised I was completely naked, and so I pulled on the nearest garments lying on the floor, and awkwardly wandered across the hall, holding onto the walls for support. Making my way into The Mother’s room I panicked as I realised she wasn’t in bed and I started to scream her name, wondering what the hell was going on.

Groggily I made my way downstairs, and managed to phone The Mother to which she asked worriedly if I was okay. Luckily her timing was perfect, and she was just outside the house, returning from work. Taking one look at me, she asked if I had a seizure to which I responded I simply didn’t know. She handed me a mirror, and I grimaced at the reflection staring back at me. The right hand side of my face was swollen, with a black eye beginning to emerge, and there were two long cuts on my cheek. Shuddering I began to cry.

Things started to come back to me – being in the bathroom and my arms jerking away from me and overheating in bed, but unfortunately nothing was completely making sense. The Mother went upstairs to inspect the damage, and shouted me to come and look. The bathroom cabinet (which is basically a bookcase designed for bathrooms) was empty of shampoo and other miscellaneous bathroom products – instead they were littering the floor in an untidy heap. In the shower chamber, the top I had been wearing earlier was lying in a wet pile – goodness knows how it got there!

Three hours later and things are still not completely making sense. I don’t remember getting into bed, and I barely remember being in the bathroom – not to mention I have no idea why I took all my clothes off. My face is still very swollen, and my body is aching and a second black eye is beginning to emerge. I got an incredible fright waking up to an empty house when I was positive it was the middle of the night, and what makes it worse is there is none of the obvious triggers that cause my ‘big’ seizures, making me worry that this could happen again.

Despite it all though, I have to keep reminding myself that there are people that go through this on a daily basis, and so really I have a lot to be grateful for that this is only my second major seizure in six months. Things could always be worse after all.

(cross posted in Jane's Addiction)

"You mean...a...um...fit?"

2008-02-10T19:15:00.000Z

I always say to people that I’m fine with having epilepsy; it’s the seizures I hate. I am one of the very lucky people to have near-controlled epilepsy and so I don’t tend to worry throughout the day that I’ll have a seizure because they are so predictable and pretty well controlled. However the other day I had been napping and was woken up suddenly. For the next half an hour I had myoclonic jerks and absence seizures.

Absence seizures are funny things to describe. In epilepsy literature they are often described as looking like the person is in a daydream, and for a most part that’s what they feel like too. I don’t tend to know I’ve had one, until I realise that I’ve missed a part of a conversation, or part of the television programme I was watching. The Mother often says “You’re doing that funny thing with your eyes again” and that’s also normally a sign of an absence seizure. I tend to blink furiously for a couple of seconds without realising I’m doing it and this, like my other seizures, happens when I’m tired. I also tend to get more frequent absence seizures when I’ve been drinking – I normally close my eyes for a couple of seconds as if I’m thinking hard about something. It’s quite interesting that my absence seizures are normally evident through my eyes.

I was chatting to my friend Lindsay today about having epilepsy. She has Crohn’s disease and has had a pretty hellish time of it due to Crohn's, and yet she was under the impression that I had had it worse because of the epilepsy. To me that is a sign that you don’t choose to cope with something: you just have to. Personally I think Lindsay has been through a much rougher time than me (and I’m right, so there) but because I haven’t experienced Crohn’s disease, and similarly Lindsay hasn’t experienced epilepsy we each think of each other’s struggles as more difficult. Thankfully it’s not a competition, and I admire Lindsay hugely for going through what she has and coming out with it with a smile on her face. And as she always says “I like to see people squirm by talking about my bowel in length”.

As I always when I’m being interviewed about epilepsy: it’s something you have, not something you can be defined by.

Transitioning and stuff...

2008-01-15T13:18:00.001Z

I’ve been attending the children’s hospital since my diagnosis but now I’m 19 I’ve been forced to change to adult services. The children’s hospital holds a transition clinic for those swapping to adult services so earlier this month I went along to meet my new neurologist.

In the meeting was my new doctor, the epilepsy specialist nurse that works with him and the nurse I will be sad to leave. My new doctor was very nice and every time he asked me a question I couldn’t remember the answer to, my ‘old’ nurse would step in to help. Generally we just talked about the seizures I still have and his plan of action for me. He is really laid back and not at all a ‘stuffy’ doctor so I was chuffed with that.

The general consensus for my medication is an increased dosage of Epilim, a move I am fiercely against. It’s probably a lot to do with my stubbornness but the last time I was on a higher dose I was hungry literally all the time. It seems quite trivial not to go on a higher dose just because of that but it’s a horrible feeling being hungry all the time, never mind the weight gain that comes with it.

In other news I have been asked to talk at a conference full of doctors and medical folk about my experiences with epilepsy but it doesn’t look like I’ll be able to do it due to uni commitments which I am rather sad about. There’s nothing I love more than talking about myself ;)

(Apologies for the somewhat brief blog, the space bar on this uni computer is driving me bonkers)

No news means no seizures

2007-12-20T22:11:00.000Z

I'm still here! Apologies for the lack of blogs but I've been seizure free since the last one *touch wood* and all has been quiet on the campaigning front so I find myself with little to blog about!

Just like to keep thanking everyone who comments and emails because they make me smile, and they make me want to continue this blog so cheers :=) If anyone does have any questions, no matter how trivial they seem, even if you just want to read my rambles about my own experiences then feel free to email, I don't mind! I actually quite enjoy talking about myself haha (you wouldn't have guessed with two blogs).

And so until next month, have a great Christmas everyone!

Another seizure

2007-11-02T20:47:00.000Z

I had my first grand mal seizure in ten months today.

I remember very little about it, in fact I don’t even remember waking up, or going downstairs – the only reason I know I had a seizure is my tongue has teeth marks in it, and I was very very confused.

I remember my arms jerking briefly and the next thing I know, I’m downstairs phoning The Mother’s work. Needless to say the receptionist (if that’s who it was I spoke to) sounded very confused as The Mother is currently in Africa on a trip for charity. I phoned Brother Number Two next, demanding to know where our mum was, to which he worriedly reminded me that she was in Africa.

Brother Number Two came over to make sure I was okay, and as he was chatting away I continued to look and sound confused. Slowly I started to feel better, and everything began making sense again. I went back to bed since I was exhausted and I looked into the spare room, where everything was a mess and it was obvious where I had had the seizure.

Now that everything has started to make sense now, I know why I had the seizure. I had forgotten to take my medication last night, plus I wasn’t well yesterday (I had to leave university because of it) and so the combination probably left me vulnerable. It’s disappointing that this has happened because it means it’s another year before I can get a driving license – for some reason I always manage to have seizures on a yearly basis, leaving me to think I’m doomed to get the bus for the rest of my life!

On the upside however, I don’t remember the seizure at all which makes it less stressful and less scary for me. Plus I provided some giggles with my confused rambling so it’s not all bad!

Growing out of epilepsy

2007-10-13T20:35:00.000Z

I’m not going to grow out of my epilepsy; it’s a harsh truth that even now, almost seven years since my diagnosis I find difficult to come to terms with. The fact that some people grow out of their epilepsy is something I find a lot of people have heard, and so I am asked quite often “will you grow out of it?” or even “but you’ll grow out of it” to which I have to explain that although you can grow out of it, I won’t.

Juvenile Myoclonic Epilepsy (the type I have) is the easiest type of epilepsy to control but it also comes with the burden of being a lifelong condition, so although I will hopefully reach a point where I am completely seizure free, I will never reach the epilepsy free point that some people are lucky enough to manage.

In some respects I’m probably lucky, I’m never going to have to deal with the ‘what if’ situation. I’ll always be on my medication and not have to run the risk of coming off it and having a seizure because my epilepsy isn’t in fact gone completely. It’s a sure fact that I’ll always have it and so maybe in that way it’s comforting.

However, on the flip side, there is the downside of knowing that this is me, forever. I have no problem in admitting I find myself incredibly jealous reading of those who have been lucky enough to grow out of their epilepsy or where the chances of them doing so are high. I find the best way to cope with that situation is just to not think about it – the Jane without epilepsy - because it’s never going to happen.

This is part of who I am, and I just have to accept it. Just some days it’s harder than others.

2 in 130

2007-10-02T19:09:00.001Z

Just before I start chatting away about epilepsy related matters, I’d just like to say thanks very much to all the kind emails I’ve had recently in regards to this blog. They’ve encouraged me to keep going with this blog so thank you very much.

Anyway, back to business. Through a group organised by Epilepsy Scotland, I’ve made a friend called Dave who also has epilepsy. He has a different type than me, is on different medication and his seizures are triggered by different things, but just having a friend to chat about my worst seizure related injury with is really brilliant.

I never thought that having a friend with epilepsy would be of great consequence to me – I’ve never had a problem making friends and I chat to most people about my epilepsy so there was never a question of me being ashamed about it. However having someone dancing beside me (equally as badly) who understands completely about the strobe lights (even though Dave himself is not photosensitive) is an amazing thing. Dave is also similar to me in that he also campaigns for epilepsy awareness so that’s another thing we have in common, and can chat about.

However, although both Dave and I have epilepsy it’s not the main subject of conversation. Mainly Dave and I are too drunk to speak coherently or too busy having a dance off to talk about epilepsy. In other words, although we have it in common, it’s a friendship that isn’t based on and surrounding epilepsy. He’s also very good for coming up with good insults for exes when I’m in need of them. Although when somebody asks a question about epilepsy it’s a great thing for me to be able to say ‘well this is my experience but Dave’s might be a better example’ – I like to think of us as a tag team of epilepsy awareness. They should call us that actually.

In case of a seizure

2007-09-12T12:09:00.000Z

Another question I get asked frequently is ‘what do I do if you have a seizure?’ This question is normally referring only to grand mal seizures or ‘big’ seizures as I call them, the most stereotypical seizure should I say where the person is unconscious and on the floor shaking.

In response to this question, I tend to say ‘do nothing’ which gets me a lot of blank stares and ‘no, really?’ But in reality that’s all you can do, whilst I’m having the seizure anyway. If I were to have a grand mal seizure in public I would advise whoever I happened to be with to try and stop people from watching me, and to not call an ambulance as there’s no need. Once the seizure has finished they should stay with me as when I wake up I am very confused and disorientated, and turn me on my side. And then of course get me home safely, and that’s all I can really advise.

When I’m having a grand mal seizure I am not in any immediate danger. I just like to think there’s a wee electrical fight going on in my brain and that I’ll be back with you as soon as possible. The seizure only becomes dangerous if it lasts more than 5 minutes in which case an ambulance should be called.

Under no circumstances should anything be placed in my mouth. It is a common misconception that you should put an object such as a spoon into someone’s mouth to stop them biting their tongue off, but the likelihood is that they would be more likely to crack their teeth on such an object (or bite your fingers if you tried). During a grand mal seizure your teeth do tend to clamp down, and unfortunately the tongue does get in the way of that, but a sore tongue is better than a missing tooth (or a friend who isn’t talking to you because you bit off their finger).

As for how a grand mal seizure looks, I couldn’t tell you because I’ve never seen one. From what I can figure however, if one happens you’ll know it, but it looks a lot scarier than it actually is.

My worst seizure

2007-08-21T22:22:00.001Z

A chilling scream pierced my eardrums, a scream I recognised: it was me. I never knew I could scream that loudly, with so much fear. I couldn’t stop screaming, I was in no way in control of my body and that was maybe the most terrifying part. My jaw stiffened and clamped down onto my tongue, again out with my control, and I remember saying over in my mind “it’ll all be over soon”.

This was without a doubt my worst ‘major’ seizure. Technically it was no different from any normal ‘major’ seizure apart from one vital detail: I was awake during this seizure, I didn’t lose consciousness as I would normally have done. Before this seizure when people asked me what it felt like to have a seizure, I couldn’t give an accurate description because I didn’t know myself. I know how I looked to other people when I was having a seizure, but I didn’t know how it felt.

My neurologist and specialist nurse both had no idea why I could remember this particular seizure, but it is without a doubt in my mind the scariest thing I’ve been through. When I stopped seizing that night, I couldn’t breathe: I was hyperventilating from fear. I was taken to hospital and when they had finished with all the routine tests, I was given a drug which calmed me down and allowed me to go to sleep.

After that night it took me a long time to get over it. When I lay in bed at night I wouldn’t be able to sleep because I was worried I was going to have a seizure. I was constantly terrified that I had another one of ‘those’ seizures I would remember it and go through that sheer terror again. I was more afraid of being afraid than I was of the actual seizure. I was referred to a psychologist who suggested I had Post Traumatic Stress as a consequence. With her help I managed to ‘get over’ the experience as much as I could, with the use of different techniques which help me even now, two years later, in totally unrelated matters of worry.

I decided to go back on Epilim – the drug which controlled my seizures almost completely but which left me with an increased appetite as I hypothesised I would rather be overweight and seizure-free than a ‘normal’ weight and still running the risk of a ‘scary’ seizure like that one.

Thankfully since that night I have only had one major seizure and I don’t even remember the start of that one, leading me to believe it was probably a one off. However it left me incredibly grateful that my epilepsy is easier to control than some peoples, so I have a lot to be thankful for.

Travelling

2007-07-04T22:29:00.001Z

In the United Kingdom, the law states that someone with epilepsy cannot have a driving licence if they have had a seizure in the past year. I’m not in any way an expert on the law, but I know how it affects me. I need to be completely seizure free (including small jerks of the arms and legs) for a whole year until I apply for a provisional licence.

In Scotland this means that people who are not allowed a licence can apply for a travel card. The card itself is mainly used by elderly people, it’s the card you see them flash the bus driver, but it also covers “disabled” people. Much to my sheer joy I was supplied with a travel card which meant I no longer had to pay on the bus, and I get discounted prices for trains and the underground within Scotland.

However amazing this card is, if you are under the age of twenty five there is a stamp on it which says ‘Young Scot’. There is a discount card supplied to school children which is called a YoungScot card. It in itself is great, you get discounts in a lot of places because of it, but because the stamp is on my travel card (not my YoungScot card which coincidentally I don’t own anymore - when I first received the card when I was fifteen I was so disgusted with the picture I cut it up), bus drivers and ticket collectors on trains believe I am trying to get a discount on my travel because they think it is a YoungScot card.

Yesterday I flashed my card as usual at the bus driver, stated my destination and waited patiently for my ticket to find him staring at me through the glass partition. He asked, quite rudely I must say, to give him the money for the fare and would not believe me when I said it was a disabled and elderly person’s travel card. Luckily I am very stubborn and I was determined not to pay and finally he relented at my constant repetition of ‘this is NOT a YoungScot card’. He didn’t believe me though, I could see he didn’t believe me and was merely trying to get me to shut up which in itself is annoying – I don’t want to be presumed a liar, but it’s the fact that I would have had to go into details about my “disability” if he had matched my stubbornness.

As I have said many times before I’m not ashamed of having epilepsy, it can be quite a feat to shut me up about it once I get into my ‘awareness for all’ speech so I would have happily proceeded to tell him that I have epilepsy and because of that I can’t get a driving licence etc, but I know some people do not like to talk about having epilepsy and would not like to go into why they are “disabled” when there is a queue forming behind you, with people impatiently tapping their feet on the pavement so that is mainly why I get so irritated by it.

Personally I think more education has to be given to bus drivers etc about the travel card. I feel that just because I don’t look elderly and I don’t have a visible “disability” that it is assumed that I am lying or trying to get away with something. I have epilepsy, I am proud of having epilepsy, but I do not want to have to explain to every bus driver I meet.

Ps. Just as a wee side note, someone who phoned Epilepsy Scotland today mentioned that hearing about me being in university really helped them and that really touched me. It helps me keep going with this blog knowing that people can empathise with what I am trying to do. So to that person that phoned – thank you.

Jane beyond epilepsy

2007-06-15T11:49:00.001Z

For people who don’t know, I have two blogs, this one, and my other one where I practice my ‘real’ writing. Since this blog is topical, there is only so often I can post on it, so if anyone reads it and is interested in the ‘Jane beyond epilepsy’ then feel free to have a nosy. It is www.outsideimdancing.blogspot.com and is also viewable via my blogger profile.

However if you are related to me, or have known me from when I was younger and would be hesitant to know certain things about me, then I advise you to stay away from it. Mum – that means you.

Alcohol

2007-05-31T15:25:00.001Z

Long time no speak but it’s been pretty quiet on the seizure front lately – not that I’m complaining.

I was in Wales at the weekend for my cousins wedding. It was a good weekend, and I managed to get drunk without making a fool of myself which is an accomplishment to be sure. I’ve only ever had one seizure after drinking alcohol but personally I don’t think it had anything to do with the alcohol.

I had been out for my now ex boyfriend’s birthday and on the way back to his house I fell asleep in the taxi which turned out to be a very bad idea. Because the main trigger for my seizures are sleep related, it means that I shouldn’t fall asleep unless I can be asleep for a long time, in other words until I wake up myself and am not woken up. When we got into his house I started shivering from the cold, but even when I had warmed up I kept shivering – probably because I was nervous about having a seizure.

I managed to sleep for a wee bit, but because we had forgotten to turn out the light I woke up and my arms started jerking. That was the last thing I knew before I woke up confused after having a ‘big’ seizure. It was actually rather embarrassing, it was my first seizure I had had that wasn’t in my house and the first time The Mother hadn’t been there, and so waking up to your boyfriends mum when you are very confused is not the best, but the boyfriend and his mum were actually very understanding.

Lots of people do ask me if I can drink alcohol because of the epilepsy and at first I used to say no, largely because I didn’t know myself. I was so worried about having a seizure I avoided alcohol especially after the ex-boyfriends birthday because I thought it was because of the alcohol, but when I thought about it, even if I had been completely sober, I probably would still have had a seizure.

So now I embrace the vodka, though I will admit at times I do worry that I am going to have a seizure. But I am determined not to let epilepsy stop me do anything, so now I do drink but just in moderation so not to overdo it.

The Wags dinner

2007-05-19T11:46:00.000Z

The Wags dinner was held last night. Other than having to abandon my very uncomfortable shoes half way through the night it was very successful.

After meeting my friend Pam and The Mother, we went to the hotel room set aside for the volunteers, and I got changed into my posh dress and the aforementioned painful shoes. We were briefed in what to do: me and Pam were in charge of the raffle prizes and we set to work.

Before dinner the chief executive of Epilepsy Scotland made a speech and introduced the video in which I was featured. It was incredibly embarrassing, I couldn’t face watching it, but I heard myself and I didn’t recognise my voice. Unfortunately I recognised what I was saying, so it must have been me. It seemed to go down okay, and no one threw any tomatoes at me, so that I’m choosing to take as a good sign. Mike, the cameraman has said he can give me a copy of the video, so I might be able to put it up here. I’ll need to watch it first though and see if I should subject everyone to it, haha. I’m still scared of those virtual tomatoes.

The dinner went well, and all the comedians were really good. In fact, the whole night was a success with £35,000 being raised for Epilepsy Scotland. Roll on next year.

Filming for the Wags

2007-05-11T13:04:00.000Z

Every year Epilepsy Scotland runs an event known as the ‘wags’ dinner. I’ve never been, but for years I’ve watched The Mother debate about this dress or that dress, these shoes or those and over the years I have gained a vague impression of it. From what I can tell, it’s a fundraising event where comedians, or wags, try to impress the guests to win the title of ‘top wag’.

At last years dinner, my photograph was taken to be displayed on (from what I can gather) large screens. This year however, they asked if I would be willing to be filmed talking about my experiences with epilepsy to be shown at this years dinner. I agreed as it seemed like the next logical step in my campaigning for awareness, but nevertheless I was nervous, photos and interviews I have done, but never at the same time.

This morning I made my way into Epilepsy Scotland and after a quick briefing, I met the cameraman, Mike. He was very friendly and directed me in what I should be doing, and where I should be looking. Alana, someone who works for Epilepsy Scotland and who knows my story almost as well as I do asked me questions off camera and I answered them, looking directly at the camera.

I fluffed my words a few times, but luckily those can be easily edited out. I had to stop a few times to work out what I should say but generally it went very well. I spoke about misunderstandings involving teachers at my high school, and my friend’s reactions to my diagnosis. I was asked about dating with epilepsy which was quite amusing, as was trying to make out that I listen to the doctors who advise that I shouldn’t drink.

I didn’t watch the video, but I have been invited to attend the dinner next week so I will see it there. I am glad I did it, it’s another obstacle I’ve come across, there was a time I would never let anyone take even a photo of me because I was so self conscious about my weight gain that was caused by taking a certain medication, so I am glad I plucked up enough courage to do it. Let’s just hope I’m saying that next week.

An introduction

2007-05-09T19:12:00.000Z

Hi, I’m Jane.

I am not a doctor and I am definitely not an expert on epilepsy, or any other neurological condition. I suppose I am however an expert on having epilepsy. I know what it feels like to have a seizure, to have injuries caused by having a seizure, and I know what it feels like to constantly have to explain your condition to other people.

I suppose that is my reason for starting this blog. For the six years since I was diagnosed, I have found that although epilepsy is the most common serious neurological condition, it is commonly misunderstood and is surrounded by stereotypes. Ironically The Mother already worked for Epilepsy Scotland before my first seizure, and since my diagnosis I have worked with the charity to help bring about a better understanding of the condition through various means.

When I was first diagnosed I didn’t fall apart, I was only twelve so I just accepted it for what it was. As I got a bit older I started to hate it, I grew to resent having to take medication all the time and the constant worry of seizures was exhausting. Now I’ve reached a stage where I don’t hate it, I’ve grown to accept that it’s part of me, and I’ve tried to turn it into a positive thing via my work with Epilepsy Scotland. However that doesn’t mean to say I don’t have my down days, days where I would give anything just to wake up without having epilepsy, and this blog will probably end up bearing the brunt of my moans.

However I do hope that it helps people without epilepsy to understand it a wee bit better as well as any people who do have epilepsy that come across it, if not for any other reason than I need justification for my moaning.