I bet you're wondering why I'm talking about water condoms? Well I've been trying to find a way of explaining an expolisive head which I've had a few of recently. I'm sure many of you understand what I'm talking about, but for others out there who don't see the daily struggle that epileptics go through, for who it is an invisible illness, I'm hoping it will make them understand a little better.
For those of you that have read my previous blogs, you will know that I call my partial seizures ices and I that I say that tingles feel like thousands of tarantulas running up and down my right leg and arm. There's also the crabs, which depending on which way the conversation is going can be a bit of a dodgy one and maybe I should change it to crabs claws instead to explain the way the crunching my stomach, which makes me feel that something dreadful is going to happen, yet another type of aura which often leads to tingles. As I'm wrting this, none of it sounds the least bit funny, but when I'm talking about it, I laugh about, try and make light of it because as I found over the last decade, it helps to add a bit of humour when you're trying to explain about epilepsy. If you get people laughing about it rather than facing them with blind facts, they don't feel so scared and in turn, you don't get the shakes, the sweaty palms and the nervous stomach or the stutters.
The idea to explain the explosive brain syndrome came to me when I was watching an episode of 'One Tree Hill' a couple of weeks ago. In the episode one of the characters was throwing filled water balloons off the roof of her flat to get rid of the frustration and anger. And then I remembered a time when I was at school that condoms filled with water were a great source of amusement in the park on a Saturday afternoon, so I just changed things around a little bit.
And so to explain. Explosive brains last up to two days and feel as if a water condon has been inserted into my brain. The pressure around my head is immense, I feel incredibly tense and I desperately want the condom to burst, so that I can cry and relieve the strain that is tightening up my forehead like screws. Lines appear as each one is secured into position, my eyebrows start moving further together until they are almost glued together. This is what I see when I look in the mirror, along with bags under my eyes that have turned into black punching balls.
I'm very sharp when I speak to people. The other week my sister said I sounded very 'businesslike' on the phone and I had to expain why. At the time I didn't know what to do with myself. I was fidgety, spending most of the day picking my nails and walking round the house
utterly disturbed, and wishing that I had a pin that I could stick in my brain to burst the condom so that the torrent of water would come gushing out. But it wasn't it until the next day that the dam broke and I was able to sit down and cry. Then I just let myself cry as and when I need to because I know the pressure is relieving. It's always such a relief.
I hate suffering like this, but I read a good qoute on twitter recently:
'Never regret. If it's good it's wonderful. If it's bad it's experience.'
Wednesday 28 September 2011
Friday 29 July 2011
Have you ever had a fit in public?
That's the question that Epilepsy Action asked today on their Facebook page. And my answer would have been yes. Only when I went to the website to fill out the survey, the first question was 'Have you had a seizure in the last three years?' And of course I hadn't. A good thing for me, although I hasten to add I've had plenty of near misses.
As I went through the survey I found the questions were all multiple choice and because I'd said no to the first question I wasn't able to tell them about my experiences of public seizures. And I've had them, and have had to learn to deal with them and how the public react.
I've only had a few drop fits. Even if they've changed over the years, I've generally always had a warning, whether it be a flashing light, strong tingles or just a overpowering sensation that I would be hitting the ground in seconds. So I'm very lucky really, for the majority of seizures I had, I've always been able to get into a safe position.
The first fit I had in public was in 1984. I was in London, staying with my best friend. It was a hot day and we were taking a walk in Hyde Park. While we talking and laughing together, I had a strong ice which was followed by the blinding light. I knew straight away that I needed to sit down so told my friend and she led me to the nearest bench, which is when the shit hit fan.... you see it was the first time my friend had seen me have a fit and besides she was still young, we were both only eleven at the time.
I can't imagine the scene. I was doing my best to stay in the recovery position which was the most comfortable while I was convulsing like mad. Only when I started vomiting, my friend and her mother pushed me into an upright position, shoving a cardboard box in my face. All this made the fit much, much worse and it became a battle of wills. I was constantly trying to lie back down on the bench, while they where continually pushing me back up into the sitting position. It all sounds rather comical as I am writing it now but it was actually one of the first dreadful seizures that I've had.
A couple of months later, I was an inpatient at the Maudsley where I was being tested for brain surgery. My consultant had given me permission to go out for a couple of hours, and I was in Paperchase with my mother. I can remember knowing that I was going to fall, shouting out for help and then the next thing I knew my head hit the floor with a great thud and I was watching feet walk past me, even stepping over me. Nobody stopped to help or to see what was wrong. I remember thinking how cruel it was.
I think that I had those fits at such an early age was a good thing. While I never went round with a label saying 'epilepsy, handle with care,' I think it made me more aware. When I started boarding school, there were many times when I would to lie down in the street in the onset of a seizure. I don't know whether it was coincidence, luck or whether I was being looked after by a higher power, but there was always someone with me when these occurred. I was lucky, because I didn't have the strategies in place that I have now. Back then I was only wearing a medic elert bracelet, which didn't make me feel very safe because it only tells people that you're epileptic and not much else.
As I went through the survey I found the questions were all multiple choice and because I'd said no to the first question I wasn't able to tell them about my experiences of public seizures. And I've had them, and have had to learn to deal with them and how the public react.
I've only had a few drop fits. Even if they've changed over the years, I've generally always had a warning, whether it be a flashing light, strong tingles or just a overpowering sensation that I would be hitting the ground in seconds. So I'm very lucky really, for the majority of seizures I had, I've always been able to get into a safe position.
The first fit I had in public was in 1984. I was in London, staying with my best friend. It was a hot day and we were taking a walk in Hyde Park. While we talking and laughing together, I had a strong ice which was followed by the blinding light. I knew straight away that I needed to sit down so told my friend and she led me to the nearest bench, which is when the shit hit fan.... you see it was the first time my friend had seen me have a fit and besides she was still young, we were both only eleven at the time.
I can't imagine the scene. I was doing my best to stay in the recovery position which was the most comfortable while I was convulsing like mad. Only when I started vomiting, my friend and her mother pushed me into an upright position, shoving a cardboard box in my face. All this made the fit much, much worse and it became a battle of wills. I was constantly trying to lie back down on the bench, while they where continually pushing me back up into the sitting position. It all sounds rather comical as I am writing it now but it was actually one of the first dreadful seizures that I've had.
A couple of months later, I was an inpatient at the Maudsley where I was being tested for brain surgery. My consultant had given me permission to go out for a couple of hours, and I was in Paperchase with my mother. I can remember knowing that I was going to fall, shouting out for help and then the next thing I knew my head hit the floor with a great thud and I was watching feet walk past me, even stepping over me. Nobody stopped to help or to see what was wrong. I remember thinking how cruel it was.
I think that I had those fits at such an early age was a good thing. While I never went round with a label saying 'epilepsy, handle with care,' I think it made me more aware. When I started boarding school, there were many times when I would to lie down in the street in the onset of a seizure. I don't know whether it was coincidence, luck or whether I was being looked after by a higher power, but there was always someone with me when these occurred. I was lucky, because I didn't have the strategies in place that I have now. Back then I was only wearing a medic elert bracelet, which didn't make me feel very safe because it only tells people that you're epileptic and not much else.
Just over a decade after I'd my first fit in public, I was on my home from after a long day at my work placement, the information department of a top advertising agency in London. I'd just got to the entrance of Green Park tube, when I had strong complex partial seizure and then seconds later was blinded by the flashing light. I'd had a mobile phone for a year and sods law, this was the first day I had forgotten it! Because of that, for a split second I panicked, walked up and down the street trying to work out what to do....in the end I decided to try and make it to Waterloo and make a phone call from there. Looking back, it was probably one of the bravest decisions I've made because I could have fallen at any time and I still dread to to think what would have happened among the sardines in suits that occupy London's underground.
But here was where I was lucky once again. And by lucky I mean very very lucky. At that point, an old friend of my sister's who'd only met me once or twice saw me in the crowds at Embankment as I made my way on to the right platform. She could see I was in trouble and stayed with me for the rest the journey when I told her that I was trying to get Waterloo so I could make a phone call. It ws a hard journey, by then I was blinded and there were no seats.I didn't get to make the phone call. As we got out of the tube, I knew I had to lie down. Unfortunately because of the crowds, I had to lie at the bottom of the steps that led in and out of the platform. Not exactly convenient, but I had no choice. After that I only remember thinking that I was never going to see my family again, because I was in this dark tunnel and then when the paramedics were carrying me up the escalator I remember seeing everybody staring at me. Even in my spasmodic static, I wanted to stick to fingers up and shout 'what the hell are you looking at? You didn't stop and help did you?' This may sound angry, but it was more frustration than anything else.
When I finally came out of the fit in St Thomas's Hospital, my sister's friend, Emma I think she was called, was still with me and she stayed with me until Mummy got there. What she did tell me though, was that the paramedics were so impressed with the card that I carried around in my purse, that 'they thought everyone should have one.'That card was a work in progress to what I carry around now. Initially the card stated that I had cerebal palsy and what to do in the event of generlised seizure and it had all the emergency numbers to call. Today I carry around a 'Protocol' which has been agreed by a specialist epilepsy nurse at Chalfont St Peter and my Consultant Professor Sander. It states all the different seizures that I experience and the drugs to treat them with. Again it has all numbers to call.
Sadly when I filled out the questionnaire for Epilepsy, when they asked the question are you afraid of having seizures in public I answered 'No'. But the truth is, having seizures in public is never easy, always frightening, but if you have the strategies to deal with it, it always helps. Only I couldn't tell them this.Tuesday 15 February 2011
Sink or Swim in the Alcohol of life
On October 18th the NSE announced a new incentive called 'University Challenge'. On their website they claim that with the plan 'we want to make a difference to the lives of people affected by epilepsy.'
They go on to say that 'our audit of university websites found that 239 out of 305 universities had no information about epilepsy on their websites which means only 66 had any mention at all. Only 13 had provided any links to organisations like NSE who can fill the gaps when it comes to support, treatment and information. Just 49 universities mention epilepsy in the disability section of their website and only four universities had detailed information about the condition and the support they offered.
My initial reaction to this incentive was a little sceptical. When they first started to promote the incentive on their website they created cartoon strip called Jo's story, who was an epileptic university student. The tale ran over a number of weeks, but it seemed to focus on the negative aspects of uni and was perhaps a slightly childish form od media to use.
Not that I'm saying uni is easy, far from it and back in 1994 when I began my undergraduate degree at the University of Northumbria in Newcastle, even though my health was much better than it is now, I admit with hindsight that I struggled with the workload and that I had chosen a difficult subject or it may even be that what I know now I didn't know back then - that I had more brain damage than they initially thought at birth and shouldn't have been capable of completing a degree. But the whole point was I wanted to go to uni, because all through my school years I'd been told that I'd never get any good qualifications, which made me all the more determined to prove everyone wrong.
And I also know between 18-21 when you are chosing, applying, and going to uni open days, the trepidation, and excitement when your guide tells you that 'the friends you make at uni will be your friends for the rest of your life.' I remember wanting to jump and down in jubilaton, as thoughts of clubbbing all night long, doing rounds and rounds of pub crawls and enjoying all night drinking sessios in friends flats. But a second later fear and anxiety crept in. What about the epilepsy? How would it affect everything, my work, living arangements, would I meet a man and most importantly would I make friendships that would last a lifetime? But I pushed all those thoughts away because I'd never let the condition affect my life. If only I'd listened to them for a little bit longer........
In the first and third year - the year I should have been working the hardest - I played hard. I was naughty, I didn't give a damn about my seizures, I was determined to get my degree but I was determined to have a good time as well. In the first year a typical night out would be downing five lethal cocktails in test tubes, before going aboard the Tuxedo Royale, fondly nicknamed 'the boat', where you could get triple shots for a pound each and dancing the night away on the revolving dancefloor until 3am, I seem to recall having eighteen shots one night, on top of the test tubes, I'm sure you can imagine the result and how I woke up feeling the next morning! And most weekends we trailed round The Big Market, laughing at the 'handbag girls,' a name we gave the Geordie lasses dressed up for a 'night out on the toon' in skimpy skirts and summer tops, and looking out for the local talent, and oh yes there was the odd snog or two. I was a good girl with the other stuff, just pretended I wasn't to impress my sister......
But I found out very quickly why they called those three undergraduate years the 'university of life.' As a person you change very quickly and that's largely down to the people you meet, for you become more independent and confident. There was a situation at the of my first year, when I was rejected by some girls who I had come to view as friends when I found out that they were more, perplexed is the only word I can think of right now, about my epilepsy than I realised. And it hurt, very badly, then. But five and then ten years later I saw that it was the best thing that could have ever happened to me, for it changed my outlook and the way I needed to portray my condition to others, that I needed to become more positive, talk about it in a jokey way so it's more 'user friendly,' therefore taking away the stigma of the condition.
In 2007 ten years after graduating, I applied again, this time to a Masters. The experience this time was completely different. Most of the students were younger than me and I had decided to do it part time so there was really not much of social interaction with them. Which actually was fine with me, at that point in my life I'd been there and got the T-shirt with the whole clubbing scene, and besides, the lighting in the clubs had started to get stronger and I couldn't cope with it as easily as I used to. 'Back in the day,' I used to be able to just shut my my eyes and block out the strobes while I was dancing in the clubs and the student union, but as a child my aura was strong flashing light that blocked out my right eye. Now I was getting older, I was becoming more sensitive to bright lights.
Anyway what struck me on the first day, as I was walking round the campus trying to find the right building that I should be in, was that I had no idea at all about the medical facilities at the campus. Whether they were available to me, how many nurses there were, if there was doctor on site....the questions suddenly started dipping in and out and swirling faster and faster round in huge circles like a rollercoaster until I my chest tightened and I couldn't breath. What would I do if I had a generalised seizure, otherwise known to joe public as a grand mal attack. You know, the ones, that if you've read anything about seizures then you'll know that I collapse and won't be able to communicate. They're also the ones that because of the stigma over my lifetime, most people have ignored in the past on the assumption that you're a drunk on the street. That all this knowledge - for in contrast, when I applied to Newcastle I'd been support pack, detailing everything from finance to medical to educational support - had not been provided suddenly hit me like a ton of bricks that were crashing until I was hidden under the pile of rubble. Funnily enough this is often how I feel after I've had an ice, (which is what I call my complex partial seizures).
So after settling in and thinking it over for a a couple of weeks I did what I would have done back then if I had a problem. I went to see my personal tutor. Little did I know that the meeting would turn my life upside down.
To cut a long story short, I fixed an appointment with my assigned personal tutor via email, telling him what I wanted to discuss. When I arrived he seemed to have no knowledge of what I sent him. So, I began my usual spiel, showing him my protocol and a rectal tube of diazepam, asking if there was a medical officer on the campus. This however, was where everything went tits up, he officer to administer the medication himself. I was shocked but managed to keep my composure, informing him in no uncertain terms that it would be embarrassing and completelely unprofessional. Finally he got on the phone and left a message with the medical centre, but part me will always wonder whether he was making a fake phone call - you know, how they do in the films and on TV.
I wish I could tell you that was that the end of it but after that things seemed to go from bad to worse. He came round and kissed me on the check, patted me on the leg with the words 'we're ok now aren't we?' I wish I'd kicked him in the nuts right then and walked out but shock does funny things to you, so I deflected the conversation and asking him about how much support I'd be able to get and that's when he made other completely inapproriate comments that if I mentioned I'd be here for ages
Needless to say I complained, he could have been a threat to anyone, he took advantage of me because he thought I was vulnerable but the girls on my course were pretty and good looking and I wanted to save them from what I had been through.
However, two months of stating my case to a chosen panel in the university, the outcome was sadly was that not even a reprimand was given and he was only provided with 'health and safety training' so that he could manage these situations in the future. I was appalled, the university had just brushed the matter under the carpet. Sadly I was not able to continue my studies as I knew that I would get to stressed, every time I saw him which would lead to more seizures.
I recently went back on the NSE website and saw since October when they first created they have now also uploaded information sheets for both Universities and students. All of these can be printed or downloaded. The University factsheets are a great source of information for any educational institution that may not feel it is able to cope with such a condition as epilepsy, and of course it would also help if they took action on the points particulated there.
The factsheets provided for students are clear, make common sense and really, are full of advice that you would give any student who was thinking of going to university whether they had epilepsy or not. Although the introduction they used in the 'Feelings and Emotions' factsheet made me smile and I wish it was phrase I'd thought up, that when you're planning on a higher education, 'you didn't plan on your university suitcase having epilepsy in it.' But then those of us with the condition didn't really plan on have on our life suitcase having epilepsy in it all........
So when it comes to taking steps like going to university it is very important to have the information you need to feel supported in your chosen field, but it mustn't just come from information on the internet. It must come from the university, knowing that you will by the institute that you will be receiving your higher education from is very very important. I had very very supportive tutors at Newcastle who gave me at extra deadlines and help when I needed them....and the other must come from within yourself, you must feel independent and strong enough to deal with other people's reactions to the condition which I garuantee is not easy at times, but if you can do it, go for it...it's a great experience to help mould your life.
They go on to say that 'our audit of university websites found that 239 out of 305 universities had no information about epilepsy on their websites which means only 66 had any mention at all. Only 13 had provided any links to organisations like NSE who can fill the gaps when it comes to support, treatment and information. Just 49 universities mention epilepsy in the disability section of their website and only four universities had detailed information about the condition and the support they offered.
My initial reaction to this incentive was a little sceptical. When they first started to promote the incentive on their website they created cartoon strip called Jo's story, who was an epileptic university student. The tale ran over a number of weeks, but it seemed to focus on the negative aspects of uni and was perhaps a slightly childish form od media to use.
Not that I'm saying uni is easy, far from it and back in 1994 when I began my undergraduate degree at the University of Northumbria in Newcastle, even though my health was much better than it is now, I admit with hindsight that I struggled with the workload and that I had chosen a difficult subject or it may even be that what I know now I didn't know back then - that I had more brain damage than they initially thought at birth and shouldn't have been capable of completing a degree. But the whole point was I wanted to go to uni, because all through my school years I'd been told that I'd never get any good qualifications, which made me all the more determined to prove everyone wrong.
And I also know between 18-21 when you are chosing, applying, and going to uni open days, the trepidation, and excitement when your guide tells you that 'the friends you make at uni will be your friends for the rest of your life.' I remember wanting to jump and down in jubilaton, as thoughts of clubbbing all night long, doing rounds and rounds of pub crawls and enjoying all night drinking sessios in friends flats. But a second later fear and anxiety crept in. What about the epilepsy? How would it affect everything, my work, living arangements, would I meet a man and most importantly would I make friendships that would last a lifetime? But I pushed all those thoughts away because I'd never let the condition affect my life. If only I'd listened to them for a little bit longer........
In the first and third year - the year I should have been working the hardest - I played hard. I was naughty, I didn't give a damn about my seizures, I was determined to get my degree but I was determined to have a good time as well. In the first year a typical night out would be downing five lethal cocktails in test tubes, before going aboard the Tuxedo Royale, fondly nicknamed 'the boat', where you could get triple shots for a pound each and dancing the night away on the revolving dancefloor until 3am, I seem to recall having eighteen shots one night, on top of the test tubes, I'm sure you can imagine the result and how I woke up feeling the next morning! And most weekends we trailed round The Big Market, laughing at the 'handbag girls,' a name we gave the Geordie lasses dressed up for a 'night out on the toon' in skimpy skirts and summer tops, and looking out for the local talent, and oh yes there was the odd snog or two. I was a good girl with the other stuff, just pretended I wasn't to impress my sister......
But I found out very quickly why they called those three undergraduate years the 'university of life.' As a person you change very quickly and that's largely down to the people you meet, for you become more independent and confident. There was a situation at the of my first year, when I was rejected by some girls who I had come to view as friends when I found out that they were more, perplexed is the only word I can think of right now, about my epilepsy than I realised. And it hurt, very badly, then. But five and then ten years later I saw that it was the best thing that could have ever happened to me, for it changed my outlook and the way I needed to portray my condition to others, that I needed to become more positive, talk about it in a jokey way so it's more 'user friendly,' therefore taking away the stigma of the condition.
In 2007 ten years after graduating, I applied again, this time to a Masters. The experience this time was completely different. Most of the students were younger than me and I had decided to do it part time so there was really not much of social interaction with them. Which actually was fine with me, at that point in my life I'd been there and got the T-shirt with the whole clubbing scene, and besides, the lighting in the clubs had started to get stronger and I couldn't cope with it as easily as I used to. 'Back in the day,' I used to be able to just shut my my eyes and block out the strobes while I was dancing in the clubs and the student union, but as a child my aura was strong flashing light that blocked out my right eye. Now I was getting older, I was becoming more sensitive to bright lights.
Anyway what struck me on the first day, as I was walking round the campus trying to find the right building that I should be in, was that I had no idea at all about the medical facilities at the campus. Whether they were available to me, how many nurses there were, if there was doctor on site....the questions suddenly started dipping in and out and swirling faster and faster round in huge circles like a rollercoaster until I my chest tightened and I couldn't breath. What would I do if I had a generalised seizure, otherwise known to joe public as a grand mal attack. You know, the ones, that if you've read anything about seizures then you'll know that I collapse and won't be able to communicate. They're also the ones that because of the stigma over my lifetime, most people have ignored in the past on the assumption that you're a drunk on the street. That all this knowledge - for in contrast, when I applied to Newcastle I'd been support pack, detailing everything from finance to medical to educational support - had not been provided suddenly hit me like a ton of bricks that were crashing until I was hidden under the pile of rubble. Funnily enough this is often how I feel after I've had an ice, (which is what I call my complex partial seizures).
So after settling in and thinking it over for a a couple of weeks I did what I would have done back then if I had a problem. I went to see my personal tutor. Little did I know that the meeting would turn my life upside down.
To cut a long story short, I fixed an appointment with my assigned personal tutor via email, telling him what I wanted to discuss. When I arrived he seemed to have no knowledge of what I sent him. So, I began my usual spiel, showing him my protocol and a rectal tube of diazepam, asking if there was a medical officer on the campus. This however, was where everything went tits up, he officer to administer the medication himself. I was shocked but managed to keep my composure, informing him in no uncertain terms that it would be embarrassing and completelely unprofessional. Finally he got on the phone and left a message with the medical centre, but part me will always wonder whether he was making a fake phone call - you know, how they do in the films and on TV.
I wish I could tell you that was that the end of it but after that things seemed to go from bad to worse. He came round and kissed me on the check, patted me on the leg with the words 'we're ok now aren't we?' I wish I'd kicked him in the nuts right then and walked out but shock does funny things to you, so I deflected the conversation and asking him about how much support I'd be able to get and that's when he made other completely inapproriate comments that if I mentioned I'd be here for ages
Needless to say I complained, he could have been a threat to anyone, he took advantage of me because he thought I was vulnerable but the girls on my course were pretty and good looking and I wanted to save them from what I had been through.
However, two months of stating my case to a chosen panel in the university, the outcome was sadly was that not even a reprimand was given and he was only provided with 'health and safety training' so that he could manage these situations in the future. I was appalled, the university had just brushed the matter under the carpet. Sadly I was not able to continue my studies as I knew that I would get to stressed, every time I saw him which would lead to more seizures.
I recently went back on the NSE website and saw since October when they first created they have now also uploaded information sheets for both Universities and students. All of these can be printed or downloaded. The University factsheets are a great source of information for any educational institution that may not feel it is able to cope with such a condition as epilepsy, and of course it would also help if they took action on the points particulated there.
The factsheets provided for students are clear, make common sense and really, are full of advice that you would give any student who was thinking of going to university whether they had epilepsy or not. Although the introduction they used in the 'Feelings and Emotions' factsheet made me smile and I wish it was phrase I'd thought up, that when you're planning on a higher education, 'you didn't plan on your university suitcase having epilepsy in it.' But then those of us with the condition didn't really plan on have on our life suitcase having epilepsy in it all........
So when it comes to taking steps like going to university it is very important to have the information you need to feel supported in your chosen field, but it mustn't just come from information on the internet. It must come from the university, knowing that you will by the institute that you will be receiving your higher education from is very very important. I had very very supportive tutors at Newcastle who gave me at extra deadlines and help when I needed them....and the other must come from within yourself, you must feel independent and strong enough to deal with other people's reactions to the condition which I garuantee is not easy at times, but if you can do it, go for it...it's a great experience to help mould your life.
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