Most of us have something we'd like to raise awareness for and sometimes we find it incredibly tough to encourage people to read our posts, take notice of our pleas and listen to our reasons for wanting to raise awareness in the first place. Some of you know that I had a particularly difficult twelve months between 2009 and 2010 where I had several epileptic seizures. And some of you know that I had to go through the very frightening procedure of an MRI scan (my 3rd) and other tests in order to have my brain examined. Believe it or not, they did actually find my brain, even amongst the masses of sawdust, but to learn I had a different kind of epilepsy to the one I had been diagnosed with twelve years previously was an intense moment, especially as I'd resorted myself to the fact I had a brain tumour. It's just epilepsy, I told myself, over and over again. I can live with this. I might have to change my lifestyle but I'm used to doing that. I've done it before when I was first diagnosed in 1999. In the years of living with epilepsy I've given birth to a healthy daughter, lost my dad, moved to another part of the country and started a whole new life. I live with epilepsy every day. But I live to tell the tale.
I don't want to ram my issues with epilepsy down your throats because I understand this is a condition that many people are deeply afraid of. I don't want to scare folk, make them think they too could suddenly have a seizure out of the blue and then find themselves relying on anti-convulsants just to make sure they wake up in the morning. We don't have locks on our doors inside the house for obvious reasons. Not just because Amy has autism. I'm supposed to announce to the pool attendant that I'm epileptic, just in case they need to know. I can't watch programs that contain flashing images, or the news that shows camera flashes. I don't go to the pictures because I find it too straining to look at the big screen in a darkened room. I don't drink alcohol, or have caffeine in tea and coffee; I can't drink energy drinks because they too contain caffeine and too much caffeine will cause a seizure. I can't eat grapefruit because that too can affect people with epilepsy. Such little things, yet they are huge points on my list of things to remember.
Today is Purple Day - Global Epilepsy Awareness Day - 26th March 2012. If you'd like to know more about why today is celebrated, here is a little more detail: Epilepsy Action
Wow..so many can'ts. I have chronic migraines and have taken many anti seizure drugs and have many of you same limitations. The brain is a very complicated thing.
ReplyDeleteThere are a lots of can't, Shanda, but I stay positive and try to think more about the things I can do.
DeleteI didn't realise there were so many things that could effect you, thanks for educating me today. I'm off to read some more.
ReplyDeleteThere are a lot more things than the ones I've mentioned here, and for each person with epilepsy it might be a different thing.
DeleteI often think about you when I drive through our typical North German alleys and often wonder how many lives were lost on one of these trees because of a seizure brought on by the flickering light while driving. xxx
ReplyDeleteI wear sunglasses most of the time when I'm driving, Ivy. Not being able to drive for me was a real nuisance and this is one reason why I'm now so careful.
DeleteThank you for sharing your thoughts. Today I am thinking of my friend's little 8 year old daughter, who has epilepsy; and has severe seizures every 6 weeks. It is very important to create awareness.
ReplyDeleteSome children fortunately grow out of epilepsy, but others don't. I hope your friend's daughter is one that does grow out of it, Di.
Deletethanks for the heads up on the challenges that come with epilepsy...there are a lot of things we take for granted until we are faced with such a life change...
ReplyDeleteYou're right, Brian. I take a lot for granted too but not so much these days.
DeleteI think it's good to post things like this! Blogging is a way to reach the minds of other people, to raise awareness of issues like this. Thank you.
ReplyDeleteThank you for reading this post. I also think it's really important to raise awareness; epilepsy can affect anyone.
DeleteI had epilepsy as a child and recently have had all the tests for epilepsy again. Luckily it turned out to be stress causing my symptoms (which was deja vu and the smell of burning when nothing was!)
ReplyDeleteI have been very lucky to get over mine but it was quite scary at the time.
Thanks for putting this on your blog. Lots of hugs x
Thank you, Kelly. I hear a few cases where children grow out of epilepsy. I also know a lady who had a few seizures not long after her daughter was born but she's been fine ever since.
DeleteI think people have too Much fear these days...They need to get informed...thus, loosing the fear.
ReplyDeleteYour blog is Always so informative sweetie!
hughugs
Thanks, Donna. I do try to educate people don't I?!! It is so important to raise awareness.
DeleteIt does sound scary but I expect it's like most things that people have to live with - you live with it and get on with it. Reading that back it sounds like I'm being harsh but what I mean is, that we don't sit and wallow in regret every day, we get on with living the life we have. I hope the epilepsy has the curtesy to leave you alone from now on.
ReplyDeleteYou're absolutely right, you do have to live with it and get on with it. I went through a year of being borderline depressed because I really thought I had a tumour. But then I realised I had a life to live and walling in regret doesn't help you to live that life.
DeleteIt doesn't scare me and not just because I have son with Autism,a husband with Bipolar, two daughters with Arthritis-one who has to take weekly shots she has also been hospitalized nine times with Pneumonia, and five kids with IQ's over 170(believe me that's scary when your kids are smarter than you!). It's not scary because it's part of you and what makes you, you.
ReplyDeleteNo body is perfect, there is something different about all of us and if we embrace that fact, and except it then that pretty much makes us all normal. A t least that's how I feel anyway!
Natalie, the people it does tend to scare are the ones who know nothing about it. A fear of the unknown. This is why education and awareness is so important.
DeleteI learnt a few new things from your post - thank you for sharing.
ReplyDeleteThanks, DJ, always nice to see you here.
DeleteA positive and informative post. My dad had mild epilepsy and we were told not to tell people. Very sad - it's not a crime. xx
ReplyDeleteThat is incredibly sad though years ago it was looked on as a condition to be ashamed of. I have no idea why and feel quite angry when I hear of stories like this.
DeleteGreat post. I didn't realise people living with epilepsy had to avoid so many foods. keep up the education. :) Bel Nicholls.
ReplyDeleteThanks, Bel. I never realised about grapefruit until 2009. I used to eat it every morning for my breakfast!!
DeleteThank you for bringing this to our attention.
ReplyDeleteI learnt a lot from that post. I didn't know about caffeine & grapefruit being a risk to epileptic people. I'm hoping that you won't have any further trouble now you have the correct medication.
Maggie X
Nuts in May
I'm hoping the same, Maggie. I take each day as it comes because that's all I can do.
DeleteIt's so important to raise awareness so thank you for sharing. There are a few things on your can't list that I would not have known otherwise. Unless people talk about these things no one would be educated. I suffer with M.E and have done for the past 3 yrs, it has been life changing for me and my family, yet peple know so little about it or fully understand because it's an invisible disability (like Epilepsy until you have a seizure people would not realise!). I actually have someone ask me before if M.E was catching! Educating people is so important :)
ReplyDeleteIt is vitally important to educate people. I don't know much about M.E. except a very good friend of mine has it. She has told me she gets very tired but apart from that I don't know much else. I would be interested to learn more though. Perhaps you would like to share your experiences on my special needs page some time?
DeleteHi That would be great, the more people know the better they understand. Here's a quick link through to my M.E page, if you think it would be of interest I would be happy to share. Thanks :)
Deletehttp://www.muminmeltdown.co.uk/m-e-and-me/
Like Shanda, I get migraines, and I have to live with certain restrictions on what I eat or drink, and what is in my field of vision, and sometimes even what I smell. Like you, I can't watch things that are flashing, which eliminates many movies these days! It's good to speak of these things openly and honestly. I find that when people have information, they are much more likely to be supportive and understanding.
ReplyDeleteI agree. We should be open about these conditions in order to allow people to learn more about them. It can happen to anyone, anytime. And you're right, there is far too much flashing going on these days!!
DeleteYou have my sympathy, I work with special needs and several of our students have epilepsy and one has seizures quite often and end up in the hospital poor soul but we all get by. My daughter has migraine only controlled by Epilim and fibromyalgia, I have asthma and also migraine and I agree people should be made more aware of all these debilitating conditions and many others. People are afraid of things they don't understand and cannot control,and once you understand you can deal with it and to a certain extent be in control.
ReplyDeleteYou've hit the nail on the head here; people are afraid of things they don't understand but many conditions can be controlled with the right medication. If only more people would realise this.
DeleteI knew there were things you had to avoid but no idea there were so many. A guy I went to school with when I was in my teens was epileptic. In order for him to be able to get his drivers' license, he had to be seizure-free for five years.
ReplyDeleteMelanie, it used to be 5 years. Then they changed it to 3 yrs and now it's between 1 and 2 yrs, depending on the severity. I couldn't drive for 2 years. It was a real pain because for 1 of those years I was absolutely fine, but I had no choice.
DeleteSo true that people are afraid of what they don't understand, which is why making people aware makes things a little less daunting. More, it opens up a subject that might otherwise be avoided through lack of understanding. Good post. :) xx
ReplyDeleteI hope it does, Sheryl. I wish people wouldn't avoid talking about subjects like medical conditions that actually can't be cured. Some people do grow out of them but they are very often there for life and it is a life changing experience.
DeleteThis is a great posting I have read. I like your article.
ReplyDeleteThanks for sharing this fantastic post. It is very insightful and you are an inspiration x
ReplyDelete