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I sit here and wonder should I or should I not write and what do I write about. Well I have to admit there are a few ideas running around up there somewhere, not exactly sure where about's but they are there. I came to C.W.E or coping with epilepsy not that long ago and not knowing what to expect, I felt alone and full of anger. I had meet two other people with epilepsy at my neurologists but that was all, I had a row with a priest and a mother over what they said and the way they treated her daughter when she had a seizure in front of me. This set me off or if you like made me angry, so it was quite by chance that I found Coping With Epilepsy, but I am glad to say a chance worth taking. Throughout my life I have dealt with the ups and downs on my own until I got married and that was a surprise to me. It is easy to say I have epilepsy and easier to say its called Grand-Mal. Now can you tell me what epilepsy is or better again what way I am supposed to look because I have epilepsy. What is epilepsy, Epilepsy is a condition in which a person has recurrent seizures. A seizure is defined as an abnormal disorderly discharging of the brain's nerve cells. Ok that is one I have heard before, According to the epilepsy foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. These physical changes are called epileptic seizures. Something I did not know it is physical, interesting. Now you need to think about this, the definition of epilepsy requires the occurrence of at least one epileptic seizure. At least one epileptic seizure so if I have two is that ok.
These are some definitions for epilepsy, no matter how or who you ask nobody really knows a whole lot if anything at all, the one question I was asked the most was “how would you know what it is and can you catch it”. Please give me a little credit “how do I know” probably because I have lived with it and then you have the fools who had the brains to ask “can I catch it”, with people like these around are you surprised there is global warming. The one thing that keeps annoying me is when I meat the person who says “you do not look like you have epilepsy”. What way should I look, you tell me and I will do my best to look that way. Help me out here I do not feel different or funny, ok after a seizure or fit as you like to call it, I feel like crap but so would you if a train had hit you doing a couple of hundred miles an hour and a 20 ton concert block fell on your head giving you a headache. Ah yes and my favorite the rack as I like to call it, easy way of saying where it hurts and why for me, just could not be bothered explaining after a fit, attack or seizure, whatever way you want to put it. The way I put it is, it happened again, man am I sore and that bloody headache again, just about sums it up. I have not meet one person who actually knows anything about epilepsy and do not mention epilepsy Nurses to me. Just because you think you are normal does not mean you are.
I mean I have been told I would amount to nothing so there would be no point in trying although it would be cute. She never said that again without thinking of me first, not a wise idea saying something like that to a teenager, with their own ideas and was not afraid to answer back. What about when you’re sitting there in the doctor’s office and they start to talk like you are not there or in the third person. I am right here in the room and the interesting part I understand all you are saying. I do not believe I am abnormal and I do not believe that any person with this problem is abnormal, lacks intelligence or believes they are disabled. The one thing I do know is that depression has some effect on all our lives and it can be hell. It should be said that there are different types and stages of depression and it affects us all differently. I do not think anyone with this problem will say they let it run there life, I most defiantly do not and I believe in doing what is required medically but that does not include letting people rule our lives or my life, so do not tell me what I cannot do instead tell me what I can do. One thing though you cannot survive the depression on your own, you can get along with epilepsy but the depression that can go hand in hand with it, you need help and a lot. I am not saying it will fix things for you but it will help.
The only person I have ever met that knew anything about epilepsy is quite simply someone with epilepsy and nobody else. From the little I know and I mean little the best place you could be is right here at Coping With Epilepsy, you learn something new everyday and most importantly you get to meet people who understand and try to help, all you can ask is for someone to try and to help. But the kicker is even though everybody here is an individual with there own opinion from all over the world they make you laugh, cry, they make you angry, then you think about what was said and what it sounds like, you then you realise, its what makes a family it may not be a blood family but none the less it is a family, now that is a surprise. A welcome surprise, as a parting word I would like to say Thank you to every member there are too many to name but there is one other, Bernard you have had a time of it yourself and if I am truthful Thank you really does not do it. Bernard to you and your lovely wife, Thank you for creating a place so an odd ball like me can try to fits in.
These are some definitions for epilepsy, no matter how or who you ask nobody really knows a whole lot if anything at all, the one question I was asked the most was “how would you know what it is and can you catch it”. Please give me a little credit “how do I know” probably because I have lived with it and then you have the fools who had the brains to ask “can I catch it”, with people like these around are you surprised there is global warming. The one thing that keeps annoying me is when I meat the person who says “you do not look like you have epilepsy”. What way should I look, you tell me and I will do my best to look that way. Help me out here I do not feel different or funny, ok after a seizure or fit as you like to call it, I feel like crap but so would you if a train had hit you doing a couple of hundred miles an hour and a 20 ton concert block fell on your head giving you a headache. Ah yes and my favorite the rack as I like to call it, easy way of saying where it hurts and why for me, just could not be bothered explaining after a fit, attack or seizure, whatever way you want to put it. The way I put it is, it happened again, man am I sore and that bloody headache again, just about sums it up. I have not meet one person who actually knows anything about epilepsy and do not mention epilepsy Nurses to me. Just because you think you are normal does not mean you are.
I mean I have been told I would amount to nothing so there would be no point in trying although it would be cute. She never said that again without thinking of me first, not a wise idea saying something like that to a teenager, with their own ideas and was not afraid to answer back. What about when you’re sitting there in the doctor’s office and they start to talk like you are not there or in the third person. I am right here in the room and the interesting part I understand all you are saying. I do not believe I am abnormal and I do not believe that any person with this problem is abnormal, lacks intelligence or believes they are disabled. The one thing I do know is that depression has some effect on all our lives and it can be hell. It should be said that there are different types and stages of depression and it affects us all differently. I do not think anyone with this problem will say they let it run there life, I most defiantly do not and I believe in doing what is required medically but that does not include letting people rule our lives or my life, so do not tell me what I cannot do instead tell me what I can do. One thing though you cannot survive the depression on your own, you can get along with epilepsy but the depression that can go hand in hand with it, you need help and a lot. I am not saying it will fix things for you but it will help.
The only person I have ever met that knew anything about epilepsy is quite simply someone with epilepsy and nobody else. From the little I know and I mean little the best place you could be is right here at Coping With Epilepsy, you learn something new everyday and most importantly you get to meet people who understand and try to help, all you can ask is for someone to try and to help. But the kicker is even though everybody here is an individual with there own opinion from all over the world they make you laugh, cry, they make you angry, then you think about what was said and what it sounds like, you then you realise, its what makes a family it may not be a blood family but none the less it is a family, now that is a surprise. A welcome surprise, as a parting word I would like to say Thank you to every member there are too many to name but there is one other, Bernard you have had a time of it yourself and if I am truthful Thank you really does not do it. Bernard to you and your lovely wife, Thank you for creating a place so an odd ball like me can try to fits in.
