The Tuesday Epilepsy Club
The Tuesday Epilepsy Club
Living With Epilepsy
The Tuesday Epilepsy Club is hosted by Franziska Thomas author of bestselling 'Fits and Starts: A Memoir of Living With Epilepsy'. Season 1 will include topics like 'Living with Epilepsy' and 'Surviving Medication', as well surprise guest podcasters from around the world.
Find out everything you need to know about Epilepsy in this lively, humorous podcast on Tuesday's at 9am. Franziska has more than 30 fits a day and designed a series great for those suffering from Epilepsy, as well an honest insight for friends, family and carers wanting to learn more about living with different kinds of fits and seizures. One in 87 people has Epilepsy, we all have a responsibility to know something about it, changing attitudes towards Epilepsy might change a life. Get listening.
Surviving an Epilepsy Alert Dog...yes, no, maybe? You though every day was chaos with the dog, now wait until you have fits and a four-legged friend
Hi and welcome to the Tuesday epilepsy club. Every week I'll be discussing a new topic from 'living with epilepsy' to 'surviving epilepsy'. I have guests podcasters from around the world, as well as the odd extract from my best selling book fits and stuff. Before we go any further, I should probably explain the kind of epilepsy I have. I have tonic chronic and partial fits today. As I speak, my partial fits are averaging around 30 in every 24 hour period. And I haven't had a tonic clonic fit in seven weeks, which is pretty remarkable. But I had my COVID Booster yesterday, so I'm expecting that to come to a horrible end in the next 24 hours. There are numerous myths about epilepsy, I should probably clear up at this point. Epilepsy is not a form of spiritual possession, or a supernatural visitation and exorcism will not cure anybody with epilepsy and no, I cannot communicate with your late Auntie Vera. On the practical side. It is impossible for anyone to swallow their tongue during a seizure. So put the wooden spoon back in the drawer.
You're only going to hurt yourself and more importantly, me. Epilepsy is not contagious in any way. And despite what you may have read, only 3% of epileptics are affected by lights. There are over 40 different kinds of seizures and convulsions like mine are not the most common kind, but they are the most notorious and visually shocking. In the UK today. One out of every 103 People that 600,000 people in total has epilepsy. It is three times more common than multiple sclerosis, and more than three times as common as Parkinson's and cerebral palsy.
One person in 50 will develop epilepsy at some time in their life. One in 20 will have a single epileptic seizure with 87 new cases diagnosed every day. But despite these staggering figures, few know what to do during effects. And the stigma attached to the condition continues to alienate hundreds of 1000s across the globe.
So let's get going. I'm not looking to be cured. Epilepsy is a condition, not an illness, it can be controlled, but not cured. Out of the 600,000 people in the UK.
Only 52% are seizure free. That puts me in the 48%.
The number of seizures people have varies massively, and you are only considered stable after a year without a fit.
The longest I've managed in the last decade is coming up to five months. I think it's the longest but recently,I'm still hanging in there for the seven weeks.
For me being able to predict a fit is coming would be almost as useful as stopping them.
My recovery time following a seizure is shorter than it used to be. But I'm not sure whether that's down to experience or the realisation that kids can't look after themselves and if left alone too long, will attempt to boil eggs in the microwave and serve homeless with uncooked corn on the cob.
There are about 1200 epilepsy related deaths a year in the UK which is more than AIDS and cot death combined. So it's not an irrational fear that you might die of epilepsy.
My uncontrolled tonic clonic seizures put me in a higher risk category for SUDEP sudden unexpected death in epilepsy. And my survival of three Status Epilepticus fits moves me higher still, of course you could drive yourself to destruction with all the certificates. Statistics even I won't deny my chances of dying during a fit are relatively high. But then the general public are not without the concerns.
Did you know that every year 13 people are killed by vending machines. 24 people are killed by champagne corks, and 150 people are killed by falling coconuts. So, there you go.
I was asked more recently, what it felt like after a seizure? It's a kind of bizarre question. If you think about it, my first podcast, I came into this really morose idea of, if you can imagine it being a bit like being hit around the head with a baseball bat, and then run over with a car, but then it didn't really see much point in explaining it that way. Just think of it as the worst hangover ever. The good news is, is the reality that you do know it's going to end. So the first day is terrible. The second day is much worse.
Day three is even worse, but by day four, you're beginning to get your life back together again. The problem comes, if you've done things like chewed your tongue, or managed to knock yourself or six by splitting your head open. But these things are all part of the course, I suppose.
What many people don't realise about epilepsy is it's a lifestyle. And it's not necessarily a good lifestyle. It's not something you leave behind.
So apart from the seizures, and the getting over the seizures, it's taking the medication, I have to take my medication every two hours, because otherwise I can't keep it down. So you have absolutely no ability to forget that you have epilepsy. So apart from anything else, you've got that, then there are other things that constantly bring it into focus that you're different from everyone else, I find it very, very difficult to go through a whole day without having to lie down for different anti epileptic drugs. But by two o'clock, I have to lie down for at least an hour, which makes it virtually impossible to go back to work in a normal environment.
Working at home,with COVID has actually set me free in a way that people possibly don't really understand. Because it means that I get to work at home. And I don't get restrained in the way that I was before. Which works just perfectly for me ironically.
Then there's the the fact that apart from the medication, andthe side effects,and the fits, there's that constant humdrum of your family buzzing around you all the time, just to make sure everything's okay. Which is absolutely fantastic. But at the same time, can be a little bit overwhelming at times. There are so many different things I can't do. I don't think there's been one day that I've thought of where I've realised that I haven't got a driver's licence, which I find really, really difficult.
I've always wanted a driver's licence.
I know it sounds really, really silly, and it's a really small thing. But if you're having 35 fits a day, obviously a driver's licence is never going to happen. So I do a couple of silly things every now and again, like go swimming in a Mexican lake, or go wandering up the Atlas Mountains. But we'll keep that between you and me.
The most important thing about somebody with epilepsy is the acceptance of the bad days, which you will undoubtedly have more of than the average person. And why shouldn't you? You've got a lot to deal with. Give yourself a break.
You need to allow yourself to have a bad day scream, shout cry. It's the only thing which is going to keep you sane.
It's the best advice I can give you. Trust me.
Next week, I'll be talking to you about surviving medication. You've been listening to Franziska Thomas, author of best selling, Fits and Starts. Thanks for listening. And until next time, stay safe or perhaps more importantly, stay conscious. Bye!