When Cassidy Megan started Purple Day a number of years ago now, it wasn't a random colour chosen to signify the condition because nobody else had taken it, there was a message behind it.
Lavender grows in isolation normally and depressingly, many young people with epilepsy have to grow up in isolation too. Not because they don't have friends, but because it's almost impossible for people without epilepsy, to come close to understanding what the condition is like to experience.
It's hard to explain that you've got a short attention span, because your brain is so constantly disrupted all the time, or because your epilepsy affects a part of your brain that it uses for learning skills. It's almost impossible to explain certain types of epilepsy, like my own temporal lobe epilepsy, where the sense of non specific fear is so strong and potent, that you just can compare it to anything, even though you're awake, conscious and can still, with limited capability, talk as normal.
While the statistics show that it's not the case the other way around, there are also a large number of people with learning disabilities, that also have epilepsy. I can't even imagine how they must feel, not being able to communicate in the way they would like, amongst their peers, never mind having the epilepsy to deal with on top of that.
Sometimes you just have to concede that you're alone in your own head with your thoughts and you can't explain them.
Or do you?
In the 21st century, social media has developed as a such a fast rate, it's hard to keep up. And it has major benefits for finding people who also have epilepsy and being able to talk to them. Facebook is a brilliant example, where epilepsy support groups are open and full of conversation about experiences of epilepsy, the medication side effects and generally just confirmation for people, that actually, what they are going through is totally normal and is also happening to other people with epilepsy too.
Young Epilepsy, have for years now run a brilliant school for kids with severe epilepsy, meaning that they can be amongst their peers and get the best support possible, that doesn't patronise, but just helps in their educational and social development.
Epilepsy Action, who are the biggest member led epilepsy organisation in the country, have branches across large parts of the UK, but also run a number of events and even tea and coffee groups. I guess when peer pressure demands that you drink alcohol after a certain age, it's great knowing no one will judge you for having a cuppa instead of a beer.
Epilepsy Society, run the specialist epilepsy hospital in Chalfont St Peter, where it's impossible not to find people going through exactly the same experience as you I think. It's also where I met two of my best friends, Georgia and Susie while I was being re-tested to get my specific epilepsy diagnosis.
I guess your friends are going to be people you can relate to most and that are your peers. I should expect that finding people who are going to know exactly what you're going through yourself, makes for a lot of less isolated life.
Wednesday, 21 May 2014
Tuesday, 20 May 2014
Day 3: How to Diagnose a Seizure
The thing with experimenting with medications for certain types of epilepsy, is it can take years to find a medication that works, if you have long gaps between seizures. But even frequent epilepsy can be difficult to get an exact diagnosis for too.
There's a number of strategies to use when helping your Neurologist figure out the best treatment for your epilepsy, but even just finding out what kind of epilepsy you have, can make a huge difference to helping you feel less isolated within your own community. I remember speaking to a young woman, Rachel, at Chalfont St Peter, the specialist epilepsy centre and I talked to her about our Temporal Lobe Epilepsy Petit-mal seizures.
It was as if a light had just gone on in our heads and it was so liberating to find someone who understood something, which can often feel impossible to explain.
What people don't really understand, is there is a host of different kinds of epilepsy people could have. It's like the different kinds of cancer there are, except it's specific to the brain, so what you actually do during a seizure, could do so much to help your Neurologist understand if your epilepsy is starting in the left or right side of your brain, if it's impacted by lights, if it is centred round the area where you process emotions... there are so many things your doctor can take from seeing one of your seizures. It's why I always ask my friends, (if they can get over the fear of dealing with a seizure) to try and film it on their phone.
I understand that's not always possible, so the next best thing I can do, is ask them to describe it for me, but in particular, for myself, to keep a track of exactly when I've taken (or on rare occasions) missed my medication. What time of day I had my seizure, what day of the month, did I have exam stress, for girls, was it just before starting their period, did I miss any meals? All of this info can hugely help work out why you're having seizures and keeping a track of it can greatly help your doctor find the best medication for you.
The other thing I found was not to be afraid to be assertive about recognising symptoms, from places you can trust information you're getting about your epilepsy. If you're recognising symptoms, make sure you tell your doctor about it - it can all speed up the process of getting to the right medication quicker.
The biggest thing for me though, is actually going through full testing, like EEGs or ECGs despite how painful it might be to attach the electrodes to your head's surface, it's so valuable in detecting where your epilepsy is coming from. MRI scanning too, has completely changed Neurology more than most Neuroscientists could imagine I expect. It's a fantastic tool for using to detect things like scarring on the brain, so despite my dislike of enclosed spaces, it was so worth the time spent in the scanner.
There are so many aids to finding the best possible treatment for whatever type of epilepsy you have diagnosed. Places like, Epilepsy Action, Epilepsy Society and Young Epilepsy, will never not provide you with information and tools like seizure diaries, to help you get to the bottom of your condition.
At the end of the day, when it comes to drilling down into a specific epilepsy diagnoses, you can never give your doctor too much information.
There's a number of strategies to use when helping your Neurologist figure out the best treatment for your epilepsy, but even just finding out what kind of epilepsy you have, can make a huge difference to helping you feel less isolated within your own community. I remember speaking to a young woman, Rachel, at Chalfont St Peter, the specialist epilepsy centre and I talked to her about our Temporal Lobe Epilepsy Petit-mal seizures.
It was as if a light had just gone on in our heads and it was so liberating to find someone who understood something, which can often feel impossible to explain.
What people don't really understand, is there is a host of different kinds of epilepsy people could have. It's like the different kinds of cancer there are, except it's specific to the brain, so what you actually do during a seizure, could do so much to help your Neurologist understand if your epilepsy is starting in the left or right side of your brain, if it's impacted by lights, if it is centred round the area where you process emotions... there are so many things your doctor can take from seeing one of your seizures. It's why I always ask my friends, (if they can get over the fear of dealing with a seizure) to try and film it on their phone.
I understand that's not always possible, so the next best thing I can do, is ask them to describe it for me, but in particular, for myself, to keep a track of exactly when I've taken (or on rare occasions) missed my medication. What time of day I had my seizure, what day of the month, did I have exam stress, for girls, was it just before starting their period, did I miss any meals? All of this info can hugely help work out why you're having seizures and keeping a track of it can greatly help your doctor find the best medication for you.
The other thing I found was not to be afraid to be assertive about recognising symptoms, from places you can trust information you're getting about your epilepsy. If you're recognising symptoms, make sure you tell your doctor about it - it can all speed up the process of getting to the right medication quicker.
The biggest thing for me though, is actually going through full testing, like EEGs or ECGs despite how painful it might be to attach the electrodes to your head's surface, it's so valuable in detecting where your epilepsy is coming from. MRI scanning too, has completely changed Neurology more than most Neuroscientists could imagine I expect. It's a fantastic tool for using to detect things like scarring on the brain, so despite my dislike of enclosed spaces, it was so worth the time spent in the scanner.
There are so many aids to finding the best possible treatment for whatever type of epilepsy you have diagnosed. Places like, Epilepsy Action, Epilepsy Society and Young Epilepsy, will never not provide you with information and tools like seizure diaries, to help you get to the bottom of your condition.
At the end of the day, when it comes to drilling down into a specific epilepsy diagnoses, you can never give your doctor too much information.
Monday, 19 May 2014
Day 2: The Fear Factor
One of the most frustrating things about my epilepsy for me, is the stigma surrounding the condition. I've had to endure it despite having controlled epilepsy. But just the mention of the condition and it makes many people run a mile. I've heard people say that in certain parts of the world, people still think that someone is possessed and that they wouldn't touch them during a seizure because they thought they might catch epilepsy themselves. It's insane.
The fact is that because people who have the condition don't like the reaction they get when they tell someone they have it, they don't and that's when it becomes dangerous.
After having a seizure I've asked many people about what happened during it, so I could explain the seizure to my Neurologist. Usually the first thing they say is, "well it was really scary!"
Even people I've explained how to deal with my seizures too are scared of them. But then I think, well it's not happening to you, but I feel compelled to apologise for scaring them anyway.
When I pushed deeper into why they found it scary, I asked did they think I would hit them or anything, during the seziure, that they might get injured helping? But that wasn't it either.
What it actually was, was that it was just scary to watch. That watching someone injure themselves was unpleasant. I suppose that's why people feel compelled to cause injury to someone having a seizure and hold them down. I suppose they want to make it stop. Ironic really isn't it?
The attitude of watching someone have a seizure and being scared though, I find selfish. It's not something I'm proud of for feeling, but I don't understand why people with epilepsy should ever apologise for something, they can't control, or didn't cause. They didn't decide to have epilepsy so they could have a party trick to scare their friends.
Given when I've seen Grand-mal Tonic-Clonic seizures myself and wasn't scared by them, the only conclusion I can come to, is that it's a question of knowledge. I'm not scared by watching someone have one because I know a) what to do and b) what they feel like from the point of view of the sufferer. So I know that all you can do is time the seizure and make sure the sufferer has something soft under them, so they're not in pain when they come round from the seizure. I know they can't be in any pain because they can't feel anything during the seizure. I know that they won't suddenly jump up and attack me and I know that as long as I make sure the seizure isn't longer than 5 minutes, they'll just come round, have some sleep and get on with their daily life.
For me, that's why they're not scary at all. So when a young guy I helped on the London Underground a couple of years ago starting apologising about making me scared, I simply said: "Why would I be scared? I'm not the one having the seizure." When I asked if it was scary for him, he just said no, I never know what's going on, I just wake up and want to go to sleep.
I suppose people are scared of what they don't know, so as a result, if they don't understand epilepsy, they're scared of it.
Coming from someone who does know epilepsy, after 25 years of having it, I can tell you, as long as the seizure doesn't last more than 5 minutes, there's nothing to be scared of.
The fact is that because people who have the condition don't like the reaction they get when they tell someone they have it, they don't and that's when it becomes dangerous.
After having a seizure I've asked many people about what happened during it, so I could explain the seizure to my Neurologist. Usually the first thing they say is, "well it was really scary!"
Even people I've explained how to deal with my seizures too are scared of them. But then I think, well it's not happening to you, but I feel compelled to apologise for scaring them anyway.
When I pushed deeper into why they found it scary, I asked did they think I would hit them or anything, during the seziure, that they might get injured helping? But that wasn't it either.
What it actually was, was that it was just scary to watch. That watching someone injure themselves was unpleasant. I suppose that's why people feel compelled to cause injury to someone having a seizure and hold them down. I suppose they want to make it stop. Ironic really isn't it?
The attitude of watching someone have a seizure and being scared though, I find selfish. It's not something I'm proud of for feeling, but I don't understand why people with epilepsy should ever apologise for something, they can't control, or didn't cause. They didn't decide to have epilepsy so they could have a party trick to scare their friends.
Given when I've seen Grand-mal Tonic-Clonic seizures myself and wasn't scared by them, the only conclusion I can come to, is that it's a question of knowledge. I'm not scared by watching someone have one because I know a) what to do and b) what they feel like from the point of view of the sufferer. So I know that all you can do is time the seizure and make sure the sufferer has something soft under them, so they're not in pain when they come round from the seizure. I know they can't be in any pain because they can't feel anything during the seizure. I know that they won't suddenly jump up and attack me and I know that as long as I make sure the seizure isn't longer than 5 minutes, they'll just come round, have some sleep and get on with their daily life.
For me, that's why they're not scary at all. So when a young guy I helped on the London Underground a couple of years ago starting apologising about making me scared, I simply said: "Why would I be scared? I'm not the one having the seizure." When I asked if it was scary for him, he just said no, I never know what's going on, I just wake up and want to go to sleep.
I suppose people are scared of what they don't know, so as a result, if they don't understand epilepsy, they're scared of it.
Coming from someone who does know epilepsy, after 25 years of having it, I can tell you, as long as the seizure doesn't last more than 5 minutes, there's nothing to be scared of.
Sunday, 18 May 2014
Day 1: The Hope Factory
Firstly, I should tell you that I'm writing a blog a day for the whole of UK National Epilepsy Week, which by the way... Starts today!
I woke up this morning, to my music which was playing through the night as it usually does and what will I'm told be one of the sunniest days of the year. It's a good start to National Epilepsy Week in my view and to be quite honest, the sun always makes me feel bright myself and hopeful.
The theme of National Epilepsy Week this year is about diagnoses. While I know the stats and how lucky I was to have had my surgery, I still believe that after a diagnoses, people with the condition should never give up hope of having their seizures controlled or cured altogether.
I think one of the lowest points of my life, was when I had the breakthrough seizure while working in Glasgow as a Police Constable. I had everything planned out, I was almost 19, I had a 30 year career and a great pension to look forward to, financial security, a car and independence and for a teenager, a huge salary and clump of money from the pay I wasn't really using while at the fully catered and residential Scottish Police College.
I had it made.
But life has a pretty good way of throwing a spanner in the works of your plans. One night in Glasgow out with friends, I had the breakthrough seizure. It didn't take a lot to be re-diagnosed with epilepsy again, so I guess I've had 2 diagnoses.
But here's the thing, they weren't life sentences.
What my epilepsy was like before the age of 14, was well, pretty horrific I won't lie. But I went to a place where I was given hope, The Sick Children's Hospital in Edinburgh. Having my Neurosurgery, which I technically had twice... one work up operation, where electrode rods were implanted in my brain for a week or two so that the doctors could very specifically isolate where my epilepsy was coming from, then the second to remove the scar that was causing it. No matter how many side effects I experienced from medications, I never really felt like my epilepsy would be as even as close to as frequent and serious as it was, since it was diagnosed when I was 9. I never understood why really, maybe blind hope of a kid who had a childish optimism, or maybe it was an odd intuition, but whenever I was in Ward 7, I always felt like I was going to be cured.
The second time I was diagnosed, after I got over the disappointment of loosing my career, I began to get focused on controlling what was left of my epilepsy with medication. The funny thing about what happened, was that I still remember standing to attention during my passing out parade at the Police College and thinking, hmm... it's a shame I never got to go to university. As it turned out, I went to one of the best universities in the country, where after getting such enjoyment from playing hockey while in the police, I went on to study Sport at Durham.
Although I had some major hiccups along the way, the number of medications that were around for me to try were huge, so I never really lost my optimism about controlling my few grand-mal tonic-clonic seizures. Eventually I went to the National Hospital for Neurology and Neurosurgery at Queens Square in London. It was a revelation and they sent me to the NSE's epilepsy hospital in Chalfont St. Peter. Not only did they diagnose my epilepsy properly, understand it better and put me on the medications, which so far, apart from the occasions I have forgotten to take them morning and night, (by the way, I'm not a good case study here... Take your medication!!) have meant I haven't had any seizures.
I mean how great is that? I owe a lot, to a really large number of people who looked after me. But the amazing thing is, the technology and understanding of Neurology and epilepsy in particular, is always moving on and getting better. Last year they found what looks like the beginnings of a gene therapy for curing epilepsy, calm down genes in the brain... Brilliant!
The fact we have some amazing hospitals in this country, although I know we're not perfect, means that we should never give up hope after a diagnoses of epilepsy. The Sick Kids' in Edinburgh changed my life. Even though I didn't end up as a career Constable, I got to do some truly amazing things, go to university, cycle across America, coach young kids sport... carry the Olympic Flame!
I wouldn't have gotten to do any of it without the hospital and all the staff in Ward 7, so once the building works are finished there, I'll be making a special delivery.
I'm so proud of owning an Olympic torch, it's one of the most incredible objects around I think. But it's currently residing in where I consider, is not it's rightful home, in my flat. I don't think it belongs here, because of what a small Neurology hospital ward did for me. I want the kids of Ward 7 to know that they shouldn't give up hope either, so I've agreed with the Sick Kids Friends Foundation, to hold it in trust in Ward 7, until my kids (if I have any!) decide they would like it.
I can't really do much to repay the impact Ward 7 had on my life, but I hope this goes a little way to paying some of it off a little and letting the kids there know that there's always hope as long as there's the science and the care around to feed it.
I'm very lucky indeed that I don't need to hope anymore. After developing it two and a half decades ago, I'm just living my life seizure free.
I woke up this morning, to my music which was playing through the night as it usually does and what will I'm told be one of the sunniest days of the year. It's a good start to National Epilepsy Week in my view and to be quite honest, the sun always makes me feel bright myself and hopeful.
The theme of National Epilepsy Week this year is about diagnoses. While I know the stats and how lucky I was to have had my surgery, I still believe that after a diagnoses, people with the condition should never give up hope of having their seizures controlled or cured altogether.
I think one of the lowest points of my life, was when I had the breakthrough seizure while working in Glasgow as a Police Constable. I had everything planned out, I was almost 19, I had a 30 year career and a great pension to look forward to, financial security, a car and independence and for a teenager, a huge salary and clump of money from the pay I wasn't really using while at the fully catered and residential Scottish Police College.
I had it made.
But life has a pretty good way of throwing a spanner in the works of your plans. One night in Glasgow out with friends, I had the breakthrough seizure. It didn't take a lot to be re-diagnosed with epilepsy again, so I guess I've had 2 diagnoses.
But here's the thing, they weren't life sentences.
What my epilepsy was like before the age of 14, was well, pretty horrific I won't lie. But I went to a place where I was given hope, The Sick Children's Hospital in Edinburgh. Having my Neurosurgery, which I technically had twice... one work up operation, where electrode rods were implanted in my brain for a week or two so that the doctors could very specifically isolate where my epilepsy was coming from, then the second to remove the scar that was causing it. No matter how many side effects I experienced from medications, I never really felt like my epilepsy would be as even as close to as frequent and serious as it was, since it was diagnosed when I was 9. I never understood why really, maybe blind hope of a kid who had a childish optimism, or maybe it was an odd intuition, but whenever I was in Ward 7, I always felt like I was going to be cured.
The second time I was diagnosed, after I got over the disappointment of loosing my career, I began to get focused on controlling what was left of my epilepsy with medication. The funny thing about what happened, was that I still remember standing to attention during my passing out parade at the Police College and thinking, hmm... it's a shame I never got to go to university. As it turned out, I went to one of the best universities in the country, where after getting such enjoyment from playing hockey while in the police, I went on to study Sport at Durham.
Although I had some major hiccups along the way, the number of medications that were around for me to try were huge, so I never really lost my optimism about controlling my few grand-mal tonic-clonic seizures. Eventually I went to the National Hospital for Neurology and Neurosurgery at Queens Square in London. It was a revelation and they sent me to the NSE's epilepsy hospital in Chalfont St. Peter. Not only did they diagnose my epilepsy properly, understand it better and put me on the medications, which so far, apart from the occasions I have forgotten to take them morning and night, (by the way, I'm not a good case study here... Take your medication!!) have meant I haven't had any seizures.
I mean how great is that? I owe a lot, to a really large number of people who looked after me. But the amazing thing is, the technology and understanding of Neurology and epilepsy in particular, is always moving on and getting better. Last year they found what looks like the beginnings of a gene therapy for curing epilepsy, calm down genes in the brain... Brilliant!
The fact we have some amazing hospitals in this country, although I know we're not perfect, means that we should never give up hope after a diagnoses of epilepsy. The Sick Kids' in Edinburgh changed my life. Even though I didn't end up as a career Constable, I got to do some truly amazing things, go to university, cycle across America, coach young kids sport... carry the Olympic Flame!
I wouldn't have gotten to do any of it without the hospital and all the staff in Ward 7, so once the building works are finished there, I'll be making a special delivery.
I'm so proud of owning an Olympic torch, it's one of the most incredible objects around I think. But it's currently residing in where I consider, is not it's rightful home, in my flat. I don't think it belongs here, because of what a small Neurology hospital ward did for me. I want the kids of Ward 7 to know that they shouldn't give up hope either, so I've agreed with the Sick Kids Friends Foundation, to hold it in trust in Ward 7, until my kids (if I have any!) decide they would like it.
I can't really do much to repay the impact Ward 7 had on my life, but I hope this goes a little way to paying some of it off a little and letting the kids there know that there's always hope as long as there's the science and the care around to feed it.
I'm very lucky indeed that I don't need to hope anymore. After developing it two and a half decades ago, I'm just living my life seizure free.
Friday, 2 May 2014
How do you define yourself?
Someone said to me recently that I shouldn't label myself because of a medical condition. It got me thinking about how they saw me, but in a bigger way, how they saw themselves? If they don't have the experience to know what you know, then maybe it's worth blocking them out. The phrase 'self diagnoses' seemed problematic to them, but then, maybe that's just because it didn't work for them? We're all different, so look to yourself before you look to others for advice, because it's likely you know yourself better than you think. The conversation also made me think back to a time, when how I was defined, how I was mis-diagnosed, changed the course of my university career.
One of the worst Neurology Consultants I ever came across, didn't want me to label myself either. I thought I might have Catamenial Epilepsy and after looking at a huge range of researched information on it, asked if I could be put on a drug Clobazam. The reply I received from a man who did not have epilepsy was this: "No. It hasn't worked for me in the past."
I couldn't get the medication I thought I needed, but I felt angry that my idea, my knowledge of my own symptoms, was dismissed so readily out of hand. The drug I was put on instead made me effectively loose a year and a half of my life. Keppra.
I think that we should all be given the power to label ourselves if we want to. If it doesn't impact on someone else's life, why should we not be allowed to? My friend Leigh heard a young boy who wanted to become a doctor talk about his ambition to his mother in public. His motivation was that he wanted to cure a cancer that had affected one of his family members, his Nanna. Yet, instead of support, his mother told him, "Don't be silly, you'll have to get a real job." If every child was persuaded away from wanting to label themselves as a doctor, we'd all be ill. As it turns out, in this financial climate, it's actually a brilliantly secure job. It's not just a proper job, it's a career for life.
I believe that if we're empowered to give ourselves our own labels, then that's when we truly allow ourselves to flourish. Embracing the label of epilepsy, means that I'm safer as a result. It means I wear my medical ID every day. I hope the fact I don't want to shy away from the label, means that other people with epilepsy will be treated with more dignity in the future. That they won't suffer the same experience I have and that my friends have because I also label myself as an Ultra-marathon cyclist. Maybe the fact that someone who doesn't like my epilepsy label, couldn't conceive of taking part in the cycling races I do, might make them think twice about what they think epilepsy is.
Understanding yourself, how you work and blocking out the external factors in your life can be beneficial. Sometimes we need the external factors, the family support, or medical support to help us. A guiding hand educating us. But ultimately if you want to shoot for something, go for it and don't let others tell you you're not able to achieve it. If you work hard enough for something you'll achieve it.
For me, I wanted to work hard to find a medication that would control, the tiny few seizures that I did suffer, after surgery, without the horrific side effects. I kept working for it, trying another Consultant who spent more time with me, tested my epilepsy, to find the medication I needed.
I'm now on 2 medications and have been for about 5 years now. Oxcarbazepine and Clobazam.
They're enough to control my seizures and I don't suffer any side effects as a result of taking them. So as it turned out, what 'didn't work' for someone who didn't know me, or seem to want to hear what I had to say, worked for me.
Go figure.
One of the worst Neurology Consultants I ever came across, didn't want me to label myself either. I thought I might have Catamenial Epilepsy and after looking at a huge range of researched information on it, asked if I could be put on a drug Clobazam. The reply I received from a man who did not have epilepsy was this: "No. It hasn't worked for me in the past."
I couldn't get the medication I thought I needed, but I felt angry that my idea, my knowledge of my own symptoms, was dismissed so readily out of hand. The drug I was put on instead made me effectively loose a year and a half of my life. Keppra.
I think that we should all be given the power to label ourselves if we want to. If it doesn't impact on someone else's life, why should we not be allowed to? My friend Leigh heard a young boy who wanted to become a doctor talk about his ambition to his mother in public. His motivation was that he wanted to cure a cancer that had affected one of his family members, his Nanna. Yet, instead of support, his mother told him, "Don't be silly, you'll have to get a real job." If every child was persuaded away from wanting to label themselves as a doctor, we'd all be ill. As it turns out, in this financial climate, it's actually a brilliantly secure job. It's not just a proper job, it's a career for life.
I believe that if we're empowered to give ourselves our own labels, then that's when we truly allow ourselves to flourish. Embracing the label of epilepsy, means that I'm safer as a result. It means I wear my medical ID every day. I hope the fact I don't want to shy away from the label, means that other people with epilepsy will be treated with more dignity in the future. That they won't suffer the same experience I have and that my friends have because I also label myself as an Ultra-marathon cyclist. Maybe the fact that someone who doesn't like my epilepsy label, couldn't conceive of taking part in the cycling races I do, might make them think twice about what they think epilepsy is.
Understanding yourself, how you work and blocking out the external factors in your life can be beneficial. Sometimes we need the external factors, the family support, or medical support to help us. A guiding hand educating us. But ultimately if you want to shoot for something, go for it and don't let others tell you you're not able to achieve it. If you work hard enough for something you'll achieve it.
For me, I wanted to work hard to find a medication that would control, the tiny few seizures that I did suffer, after surgery, without the horrific side effects. I kept working for it, trying another Consultant who spent more time with me, tested my epilepsy, to find the medication I needed.
I'm now on 2 medications and have been for about 5 years now. Oxcarbazepine and Clobazam.
They're enough to control my seizures and I don't suffer any side effects as a result of taking them. So as it turned out, what 'didn't work' for someone who didn't know me, or seem to want to hear what I had to say, worked for me.
Go figure.
Tuesday, 22 April 2014
I Would Walk 500 Miles And I Would Walk 500 More...
I've had an up and down start to the year so far, some frustrations and battles, some disappointments and some new challenges.
I've had to cancel RAAM (again) for another year due to funds, which has been extremely frustrating, but then I think everyone is finding that charity sponsorship is becoming more and more difficult to obtain in the current financial climate. After getting to the bottom of the issues which surrounded a rather blocked attempt to use the indoor Velodrome in Stratford, London, where the 2012 Olympic Track Cycling was held, there was a bit of a breakthrough, but still a bit of a fight I can foresee coming. It seems 24HR licences for venues are rather difficult things to acquire, even for world record attempts!
So it seems that instead I am fast becoming the symbol of all things Scottish, in music terms at least and that rather famous song about 500 miles, sung by a set of twins from Edinburgh, could well be my summer anthem.
I always wanted to take part in the Prudential Ride 100 again this August. Call it unfinished business after crashing, but I feel like I could have knocked 45 minutes off my time if I hadn't crashed and because of that felt I'd let the charity down. However, I've always thought you should earn your sponsorship money people give you. Instead of that extra pint, extra bit of shopping, bottle of wine, whatever, the fact is they're giving it to a charity you feel really passionate about instead of spending it on themselves. So I suppose for someone looking to break world records and having finished Team RAAM, a 100 mile sportive, would be like a charity 10K to an experienced Marathon runner. So in order to earn every penny, I wanted to push my limits and so I could really crack the 6 hour mark when it came to riding the 100 in London and Surrey.
I suppose the question is, how would I do that? Well my idea was to ride 1000 miles in 60 hours, or 2 and a half days. The form it would take works nicely (in theory), so that I would tip the 1000 mile mark during the last ride in London which I was so eager to complete again as part of Epilepsy Action's team of riders, or 'heros' as they call them.
The other rides would comprise another 100 TT - the British 100TT Championships, 2 x 12HR TTs, one of which would be in North Yorkshire, which to be honest, is one or the rides I'm most nervous about because of the likelihood of hills, then finally the British 24HR TT Championships. Again arguably the toughest ride of the 5 given it's the longest distance, but with a lot of training under my belt come the end of June, I feel like I should be in a great place to crack 400 miles.
So 1 400 mile ride, 2 200 mile rides and 2 100 mile rides feels like I'd be properly pushing myself for the charity and because it's not just one big effort, it feels like a genuine challenge, over 2 months. To put it into perspective, it's a third of RAAM Solo, further than the distance of the UK end to end and just under half the distance of this year's Tour de France, but in a quarter of the stages rides and with no drafting.
I'll have 4 months of training in total, meaning I'm likely to ride about 4000 miles in total including training, but to be honest, I feel better, healthier, am sleeping better, just after starting my training cycle of the last 2 weeks.
So what else has happened? Well I've gotten a year older, which apparently improves your endurance! So I guess that's a good thing. I've also thought about completely cutting back on drinking alcohol at all, only reserving a glass of something for special occasions, which has also made me feel better generally.
The major thing that has happened epilepsy wise though, is having a seizure a couple of months ago. It's reminded me of the importance of wearing my medical ID, but also what amazing people I live with, as our Master's student in the house, Anna seemed very calm and totally dealt with the situation, with the help of my other flatmate Alex and they were both awesome. I guess I always feel a bit guilty, that they have had to deal with the stress of seeing me have a seizure, but I'm definitely in their debt.
It also reminds me of the importance of the charity. It might have only been the second seizure I've had in about 4 years, but without their help, knowledge and the help of the Sick Kids Hospital in Edinburgh, I would be having that many in a 3 weeks. I guess it's easier not to think about your epilepsy when it feels completely under control, forget about how horrible it can be ...but the fact is, there is still approximately 600,000 people in the UK alone and about 68 Million people worldwide who have epilepsy, many of whom will be suffering with it terribly. At least Epilepsy Action can provide them with information, wherever we are in the world.
Although it's unpleasant to have the seizures, the one bright spot that comes from them, is the reminder of how important the charity's work is and little reminder of the motivation that helps me get through so much training and when the ultra-distance rides get really painful, of why I'm doing them.
I suppose I'd better plug the link to donate to the challenge now, it's: http://uk.virginmoneygiving.com/Katies1000milecyclechallenge
I know £5000 is a very ambitious target, but I know how much it could do, so it would be well worth giving it a shot and all the training I'd put in to the challenge. It would be amazing if you could stick the link in your top bar and donate anything you can.
Oh and I've made some changes to the old Proclaimers classic:
"But I would ride five hundred miles and I would ride five hundred more, just to be that girl who dropped five thousand pounds at Epilepsy Action's door....."
"Dun liddle un-liddle un-liddle uh da da....!!"
I've had to cancel RAAM (again) for another year due to funds, which has been extremely frustrating, but then I think everyone is finding that charity sponsorship is becoming more and more difficult to obtain in the current financial climate. After getting to the bottom of the issues which surrounded a rather blocked attempt to use the indoor Velodrome in Stratford, London, where the 2012 Olympic Track Cycling was held, there was a bit of a breakthrough, but still a bit of a fight I can foresee coming. It seems 24HR licences for venues are rather difficult things to acquire, even for world record attempts!
So it seems that instead I am fast becoming the symbol of all things Scottish, in music terms at least and that rather famous song about 500 miles, sung by a set of twins from Edinburgh, could well be my summer anthem.
I always wanted to take part in the Prudential Ride 100 again this August. Call it unfinished business after crashing, but I feel like I could have knocked 45 minutes off my time if I hadn't crashed and because of that felt I'd let the charity down. However, I've always thought you should earn your sponsorship money people give you. Instead of that extra pint, extra bit of shopping, bottle of wine, whatever, the fact is they're giving it to a charity you feel really passionate about instead of spending it on themselves. So I suppose for someone looking to break world records and having finished Team RAAM, a 100 mile sportive, would be like a charity 10K to an experienced Marathon runner. So in order to earn every penny, I wanted to push my limits and so I could really crack the 6 hour mark when it came to riding the 100 in London and Surrey.
I suppose the question is, how would I do that? Well my idea was to ride 1000 miles in 60 hours, or 2 and a half days. The form it would take works nicely (in theory), so that I would tip the 1000 mile mark during the last ride in London which I was so eager to complete again as part of Epilepsy Action's team of riders, or 'heros' as they call them.
The other rides would comprise another 100 TT - the British 100TT Championships, 2 x 12HR TTs, one of which would be in North Yorkshire, which to be honest, is one or the rides I'm most nervous about because of the likelihood of hills, then finally the British 24HR TT Championships. Again arguably the toughest ride of the 5 given it's the longest distance, but with a lot of training under my belt come the end of June, I feel like I should be in a great place to crack 400 miles.
So 1 400 mile ride, 2 200 mile rides and 2 100 mile rides feels like I'd be properly pushing myself for the charity and because it's not just one big effort, it feels like a genuine challenge, over 2 months. To put it into perspective, it's a third of RAAM Solo, further than the distance of the UK end to end and just under half the distance of this year's Tour de France, but in a quarter of the stages rides and with no drafting.
I'll have 4 months of training in total, meaning I'm likely to ride about 4000 miles in total including training, but to be honest, I feel better, healthier, am sleeping better, just after starting my training cycle of the last 2 weeks.
So what else has happened? Well I've gotten a year older, which apparently improves your endurance! So I guess that's a good thing. I've also thought about completely cutting back on drinking alcohol at all, only reserving a glass of something for special occasions, which has also made me feel better generally.
The major thing that has happened epilepsy wise though, is having a seizure a couple of months ago. It's reminded me of the importance of wearing my medical ID, but also what amazing people I live with, as our Master's student in the house, Anna seemed very calm and totally dealt with the situation, with the help of my other flatmate Alex and they were both awesome. I guess I always feel a bit guilty, that they have had to deal with the stress of seeing me have a seizure, but I'm definitely in their debt.
It also reminds me of the importance of the charity. It might have only been the second seizure I've had in about 4 years, but without their help, knowledge and the help of the Sick Kids Hospital in Edinburgh, I would be having that many in a 3 weeks. I guess it's easier not to think about your epilepsy when it feels completely under control, forget about how horrible it can be ...but the fact is, there is still approximately 600,000 people in the UK alone and about 68 Million people worldwide who have epilepsy, many of whom will be suffering with it terribly. At least Epilepsy Action can provide them with information, wherever we are in the world.
Although it's unpleasant to have the seizures, the one bright spot that comes from them, is the reminder of how important the charity's work is and little reminder of the motivation that helps me get through so much training and when the ultra-distance rides get really painful, of why I'm doing them.
I suppose I'd better plug the link to donate to the challenge now, it's: http://uk.virginmoneygiving.com/Katies1000milecyclechallenge
I know £5000 is a very ambitious target, but I know how much it could do, so it would be well worth giving it a shot and all the training I'd put in to the challenge. It would be amazing if you could stick the link in your top bar and donate anything you can.
Oh and I've made some changes to the old Proclaimers classic:
"But I would ride five hundred miles and I would ride five hundred more, just to be that girl who dropped five thousand pounds at Epilepsy Action's door....."
"Dun liddle un-liddle un-liddle uh da da....!!"
Friday, 15 November 2013
The Pebble Effect
I know social media can be abused, but one of the things the facebook generation has going for them is the ability to link across the world. Six degrees of separation has got a lot smaller and more direct because of the internet.
The biggest thing for me as a blogger though, is the pebble effect. I don't know the 23 people in the Ukraine, or the 181 people in the USA, who read my blog last week I don't think, but it's amazing to me they did.
Above all else, the reason I started Team Epilepsy Forward, was to have a bigger pebble to spread to other pebbles that could mean people were talking about epilepsy and then for the effect to keep going. I'm so proud of being able to carry the Olympic flame with my purple medical band and I find it incredible that on BBC World News I was able to talk about my experience, or on BBC London Radio, in Cycling Weekly or Cycling Plus. I can't thank those people enough for giving me a voice. But I believe I am able to do more, to make that bigger pebble that people can talk about in the context of my condition; epilepsy.
I'm not ashamed to say epilepsy is a part of me, I'm the Epileptic Ultra Cyclist. I also can't believe that in a year and a half, 28,000 people and counting have viewed the blog. My diary in itself has been a little pebble... but my post today is probably the most important pebble I'll ever write about.
So I propose this...
We are all pebbles to pass on something to the next person, who could be the next pebble and if there's anything that is incredibly important to pass on about epilepsy, it's the knowledge about first aid of an epileptic seizure itself.
The reason I started this project, was not only to tackle stigma, but was to try and save lives through knowledge of seizures. More people die from epilepsy than Cot Death and HIV Aids combined every year. But by being a pebble, or even just consuming this info about first aid, you could be saving a life.
The first thing I should say about what is termed a generalised seizure, is epileptic seizures don't all take the form of the effect of someone shaking. If a person is confused looking, not dissimilar to drunk, but is agitated, they could very well not be drunk, or even on drugs as I've heard the seizures being described before, they could be having a different type of generalised seizure.
The second thing I should say is generalised seizures, which are the kind that may require first aid, particularly Tonic-Clonic, despite it looking frightening, for the person with epilepsy is normal and speaking from a lot of experience, during a seizure we feel nothing at all and have almost no memory of the seizure, so don't be frightened for the person having the seizure. We're never experiencing pain.
What is painful however, is for example having grit in my chin caused by the convulsions, which is the shaking part, which I've felt when I came round after I'd fallen asleep. On that note, you'd be amazed how many times I've had to sit in the A&E waiting room chairs, extremely sleepy and desperate to go to sleep because of the rate of my muscles tensing and relaxing.
If you have to go with a friend or someone who has had a Tonic-Clonic seizure to A&E, try and be assertive with the medical staff in the hospital about giving them somewhere to lie down.
With regard to the issues of scraping my chin on the ground like a pavement, there's a really simple thing you can do to prevent it happening and should do during any seizure... Put something soft under the person's head, a jacket or something is ideal.
On top of that, just make sure the person isn't in danger. If you don't need to move them, to get them out of serious danger, just move anything they could hurt themselves on from around them. I know it's a natural reaction, to want to get someone to stop shaking, but please, please never hold them down... it'll only hurt the person having the seizure and never go by the old wives tale of holding their tongue... you could end up hurting yourself too by doing that, or damaging their teeth by putting something in their mouth.
The best thing you can do is just be there and comfort the person when they come round, just put them in the recovery position. It sounds odd as I've mentioned before, but videoing their seizure could be amazingly helpful for the best diagnoses possible... It can't do any harm, if the person doesn't want the video you can just erase it.
The other advantage to videoing a seizure is it means you can know if it's lasted longer than 5 minutes... Time can seem to go very fast being in the situation of helping someone with epilepsy, but if the seizure lasts longer than those 5 minutes, it's the person's first seizure (you might know because they're not wearing medical ID), or if the person has injured themselves in any way... Call an Ambulance.
It's not always needed though to call an ambulance, sometimes the most important thing the sufferer needs after a seizure is sleep. If you're comfortable knowing this is the case, then just helping them to their bed could be the best thing.
All this might seem complicated but there's a great video you can check out to show you what to do on Epilepsy Action's website too... just copy and paste this link: https://www.epilepsy.org.uk/info/firstaid
As for the conclusion to this particular blog post. Well... you are the conclusion.
Hopefully you're the pebble to pass the information on to more people who could turn into pebbles themselves... Before we know it, there could be a landslide of awareness of what to do and simply because you told someone else. It won't cost you anything, but it could make that crucial difference.
These days your twitter account, your facebook account, your Linkedin account, whatever it may be means it can make you a pebble.
When it comes to preventing epilepsy deaths, we can never have too many pebbles.
The biggest thing for me as a blogger though, is the pebble effect. I don't know the 23 people in the Ukraine, or the 181 people in the USA, who read my blog last week I don't think, but it's amazing to me they did.
Above all else, the reason I started Team Epilepsy Forward, was to have a bigger pebble to spread to other pebbles that could mean people were talking about epilepsy and then for the effect to keep going. I'm so proud of being able to carry the Olympic flame with my purple medical band and I find it incredible that on BBC World News I was able to talk about my experience, or on BBC London Radio, in Cycling Weekly or Cycling Plus. I can't thank those people enough for giving me a voice. But I believe I am able to do more, to make that bigger pebble that people can talk about in the context of my condition; epilepsy.
I'm not ashamed to say epilepsy is a part of me, I'm the Epileptic Ultra Cyclist. I also can't believe that in a year and a half, 28,000 people and counting have viewed the blog. My diary in itself has been a little pebble... but my post today is probably the most important pebble I'll ever write about.
So I propose this...
We are all pebbles to pass on something to the next person, who could be the next pebble and if there's anything that is incredibly important to pass on about epilepsy, it's the knowledge about first aid of an epileptic seizure itself.
The reason I started this project, was not only to tackle stigma, but was to try and save lives through knowledge of seizures. More people die from epilepsy than Cot Death and HIV Aids combined every year. But by being a pebble, or even just consuming this info about first aid, you could be saving a life.
The first thing I should say about what is termed a generalised seizure, is epileptic seizures don't all take the form of the effect of someone shaking. If a person is confused looking, not dissimilar to drunk, but is agitated, they could very well not be drunk, or even on drugs as I've heard the seizures being described before, they could be having a different type of generalised seizure.
The second thing I should say is generalised seizures, which are the kind that may require first aid, particularly Tonic-Clonic, despite it looking frightening, for the person with epilepsy is normal and speaking from a lot of experience, during a seizure we feel nothing at all and have almost no memory of the seizure, so don't be frightened for the person having the seizure. We're never experiencing pain.
What is painful however, is for example having grit in my chin caused by the convulsions, which is the shaking part, which I've felt when I came round after I'd fallen asleep. On that note, you'd be amazed how many times I've had to sit in the A&E waiting room chairs, extremely sleepy and desperate to go to sleep because of the rate of my muscles tensing and relaxing.
If you have to go with a friend or someone who has had a Tonic-Clonic seizure to A&E, try and be assertive with the medical staff in the hospital about giving them somewhere to lie down.
With regard to the issues of scraping my chin on the ground like a pavement, there's a really simple thing you can do to prevent it happening and should do during any seizure... Put something soft under the person's head, a jacket or something is ideal.
On top of that, just make sure the person isn't in danger. If you don't need to move them, to get them out of serious danger, just move anything they could hurt themselves on from around them. I know it's a natural reaction, to want to get someone to stop shaking, but please, please never hold them down... it'll only hurt the person having the seizure and never go by the old wives tale of holding their tongue... you could end up hurting yourself too by doing that, or damaging their teeth by putting something in their mouth.
The best thing you can do is just be there and comfort the person when they come round, just put them in the recovery position. It sounds odd as I've mentioned before, but videoing their seizure could be amazingly helpful for the best diagnoses possible... It can't do any harm, if the person doesn't want the video you can just erase it.
The other advantage to videoing a seizure is it means you can know if it's lasted longer than 5 minutes... Time can seem to go very fast being in the situation of helping someone with epilepsy, but if the seizure lasts longer than those 5 minutes, it's the person's first seizure (you might know because they're not wearing medical ID), or if the person has injured themselves in any way... Call an Ambulance.
It's not always needed though to call an ambulance, sometimes the most important thing the sufferer needs after a seizure is sleep. If you're comfortable knowing this is the case, then just helping them to their bed could be the best thing.
All this might seem complicated but there's a great video you can check out to show you what to do on Epilepsy Action's website too... just copy and paste this link: https://www.epilepsy.org.uk/info/firstaid
As for the conclusion to this particular blog post. Well... you are the conclusion.
Hopefully you're the pebble to pass the information on to more people who could turn into pebbles themselves... Before we know it, there could be a landslide of awareness of what to do and simply because you told someone else. It won't cost you anything, but it could make that crucial difference.
These days your twitter account, your facebook account, your Linkedin account, whatever it may be means it can make you a pebble.
When it comes to preventing epilepsy deaths, we can never have too many pebbles.
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