Diary of an Epileptic
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Rae1889
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Thursday, March 18, 2010
Had another great sleep last night, but again had that "high" and the super, deep sleep that hits out of nowhere. I fell asleep though at about 2am. Stupid good book. *The fallen*
But I clued in this morning on a few things here. I am supposed to take my dilantin with food. and I did that on sunday night, and monday night, but not tuesday night and not wednesday night. So tonight I will take it with a bed time snack.
This morning I took:
Cephalexin- 500mg
Vitamin B complex- ?? *2 pills, not sure whats in them exactly*
and I took the 5mg Aerius *I took it early because my throat is getting tight again*
feeling pretty good right now. figured I would let you all know that monday, tuesday, wednesday, and so far today, I have not had a single seizure. *at least not one I have recognized, or noticed an absence* This includes, simple partials, complex partials, myoclonics, absences *so far as I know* and most importantly, no TCs
I think I really like Dilantin. lets hope that I actually dont have to change.
Had another great sleep last night, but again had that "high" and the super, deep sleep that hits out of nowhere. I fell asleep though at about 2am. Stupid good book. *The fallen*
But I clued in this morning on a few things here. I am supposed to take my dilantin with food. and I did that on sunday night, and monday night, but not tuesday night and not wednesday night. So tonight I will take it with a bed time snack.
This morning I took:
Cephalexin- 500mg
Vitamin B complex- ?? *2 pills, not sure whats in them exactly*
and I took the 5mg Aerius *I took it early because my throat is getting tight again*
feeling pretty good right now. figured I would let you all know that monday, tuesday, wednesday, and so far today, I have not had a single seizure. *at least not one I have recognized, or noticed an absence* This includes, simple partials, complex partials, myoclonics, absences *so far as I know* and most importantly, no TCs
I think I really like Dilantin. lets hope that I actually dont have to change.
Rae1889
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Darn it...
I just read this thread and most people responded that Dilantin is known for bone/calcium/teeth loss.
I already have bad teeth. They are permanently a yellow tinge. My mum didnt have a lot of calcium when she was pregnant with me, so they have been this way since birth. Its not extremely noticable, but it does bug me.
Secondly, I have horrible bones. I break them constantly. I have pins (2) in my left elbow from having it impaled almost right through. and I have broken my left wrist about 4 times (?) I am left handed so I use that hand to catch myself or stop myself during falls or whatever. I have broken my ankles, my jaw *hockey puck to the mouth* and I have had broken my right wrist a few times. I may have broken my nose once. being hit in the face with a tether ball, it bled alot and that was my only bloody nose until recently, and those new ones came out of nowhere.
WAH :'(
I just read this thread and most people responded that Dilantin is known for bone/calcium/teeth loss.
I already have bad teeth. They are permanently a yellow tinge. My mum didnt have a lot of calcium when she was pregnant with me, so they have been this way since birth. Its not extremely noticable, but it does bug me.
Secondly, I have horrible bones. I break them constantly. I have pins (2) in my left elbow from having it impaled almost right through. and I have broken my left wrist about 4 times (?) I am left handed so I use that hand to catch myself or stop myself during falls or whatever. I have broken my ankles, my jaw *hockey puck to the mouth* and I have had broken my right wrist a few times. I may have broken my nose once. being hit in the face with a tether ball, it bled alot and that was my only bloody nose until recently, and those new ones came out of nowhere.
WAH :'(
Rae1889
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Why don't I ever understand!?
I'm going to start this off by apologizing if this offends anybody. If your someone who easily gets fed up with my posts because I either disagree or agree with something the masses do not, then please stop reading now. you've been given fair warning
So first of all, just wanted to say that I still love love love my medic ID. I havent taken it off at all, and its become part of my daily dress code, and I use it as an accesory.
Secondly, I want to bring up the subject of using epilepsy as a defense. I posted a thread about this with the same name, after reading about a man who killed a nun, and blamed it on his epilepsy. The article was very vague about describing the type of seizure he had, and how he killed the nun. It also gave details to imply to me that he had just used this excuse because he knew he could get off with it. Kinda made me think that this man had premeditated the murder and his defense. knowing that this cannot actually be something they can prove happened at that time, just that they can prove that he has the diagnosis of Epilepsy.
So with someone who is able to "get away with murder" lets say, if this was the case. is someone using their disorder as an advantage in the wrong means. they do not want to accept the consequences of their actions, so they use their disorder. Same thing for someone claiming NCR (not criminally responsible) by saying that God/Devil told them to do it. Its hard to prove those things happened or not.
So what I'm gonna say now, is how people use this in everyday life. How someone gets lazy at work, doesnt wanna stay any longer, so they tell their boss that they are having simple partials or absences.
Or how someone can get in a rage, punch someone in the face, break their nose, and blame it on a complex partial or a postictal state.
How can someone challenge that without looking like a jerkface, or discriminating. Your boss can't question it, because that will look like he is picking on you, or he is showing prejiduce towards you and your disorder.
Your best friend who you punched would feel guilty not forgiving you because it will make him/her feel insensitive and cruel for not taking your disorder into consideration.
This keeps running through my head. I have bitten/punched/kicked and slapped Chad during postictal states that I have no memory of, but he does tell me that I dont ever remember who he is, or where I am, so I think that i've been kidnapped or something.
But what if this happens in public. I'm going to bit the poor passerby that tries to help, and then she presses charges. I would feel terrible about blaming it on my E, even though it was true. Let alone doing it just because it gets me off the hook.
I can't remember doing this, because I feel it is so wrong. On smaller things, like if I am too tired or sore or just really not in the mood to hang out with people, then I will say that I feel seizure-ish and should stay home and/or lye down.
Has anyone else used their E as a little white lie?
I'm going to start this off by apologizing if this offends anybody. If your someone who easily gets fed up with my posts because I either disagree or agree with something the masses do not, then please stop reading now. you've been given fair warning
So first of all, just wanted to say that I still love love love my medic ID. I havent taken it off at all, and its become part of my daily dress code, and I use it as an accesory.
Secondly, I want to bring up the subject of using epilepsy as a defense. I posted a thread about this with the same name, after reading about a man who killed a nun, and blamed it on his epilepsy. The article was very vague about describing the type of seizure he had, and how he killed the nun. It also gave details to imply to me that he had just used this excuse because he knew he could get off with it. Kinda made me think that this man had premeditated the murder and his defense. knowing that this cannot actually be something they can prove happened at that time, just that they can prove that he has the diagnosis of Epilepsy.
So with someone who is able to "get away with murder" lets say, if this was the case. is someone using their disorder as an advantage in the wrong means. they do not want to accept the consequences of their actions, so they use their disorder. Same thing for someone claiming NCR (not criminally responsible) by saying that God/Devil told them to do it. Its hard to prove those things happened or not.
So what I'm gonna say now, is how people use this in everyday life. How someone gets lazy at work, doesnt wanna stay any longer, so they tell their boss that they are having simple partials or absences.
Or how someone can get in a rage, punch someone in the face, break their nose, and blame it on a complex partial or a postictal state.
How can someone challenge that without looking like a jerkface, or discriminating. Your boss can't question it, because that will look like he is picking on you, or he is showing prejiduce towards you and your disorder.
Your best friend who you punched would feel guilty not forgiving you because it will make him/her feel insensitive and cruel for not taking your disorder into consideration.
This keeps running through my head. I have bitten/punched/kicked and slapped Chad during postictal states that I have no memory of, but he does tell me that I dont ever remember who he is, or where I am, so I think that i've been kidnapped or something.
But what if this happens in public. I'm going to bit the poor passerby that tries to help, and then she presses charges. I would feel terrible about blaming it on my E, even though it was true. Let alone doing it just because it gets me off the hook.
I can't remember doing this, because I feel it is so wrong. On smaller things, like if I am too tired or sore or just really not in the mood to hang out with people, then I will say that I feel seizure-ish and should stay home and/or lye down.
Has anyone else used their E as a little white lie?
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Hey Rae --
First: Regarding the Dilantin -- ALL the AEDs affect calcium so do everything you can do in terms of preventive stuff. Take a calcium/D supplement and do weight-bearing exercises, and cross your fingers...
Sceond: Regarding using E as an excuse -- With a certain amount of discretion and common sense, I think honesty is still the best policy. Any time anyone is feeling lousy for whatever reason they don't necessarily have to give the details. You can say "I'm feeling a bit tired and achey" or you can say "I have wicked PMS and the worst cramps ever and I'm all out of tampons so I'm going home". You need to make the call about whether something is TMI. The situation you describe where you "bite a passerby" -- I'm hoping that's a pretty rare scenario. Either way, better to be honest about why it happened than to pretend that you got your teeth caught on her arm. Or that you're a vampire.
First: Regarding the Dilantin -- ALL the AEDs affect calcium so do everything you can do in terms of preventive stuff. Take a calcium/D supplement and do weight-bearing exercises, and cross your fingers...
Sceond: Regarding using E as an excuse -- With a certain amount of discretion and common sense, I think honesty is still the best policy. Any time anyone is feeling lousy for whatever reason they don't necessarily have to give the details. You can say "I'm feeling a bit tired and achey" or you can say "I have wicked PMS and the worst cramps ever and I'm all out of tampons so I'm going home". You need to make the call about whether something is TMI. The situation you describe where you "bite a passerby" -- I'm hoping that's a pretty rare scenario. Either way, better to be honest about why it happened than to pretend that you got your teeth caught on her arm. Or that you're a vampire.
occb
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I have some questions for you Rae:
Why are you more concerned for people who suffer from no disadvantage than for people who do?
Why are the "normies" and their possible pain/indignation/annoyance/frustration/guilt more important than the fact that you have a condition you have no control over (without meds) which causes you considerable inconvenience and/or danger?
Why is experiencing a seizure and all things related to that considered an excuse, instead of simply a valid medical issue?
Why are you more concerned for people who suffer from no disadvantage than for people who do?
Why are the "normies" and their possible pain/indignation/annoyance/frustration/guilt more important than the fact that you have a condition you have no control over (without meds) which causes you considerable inconvenience and/or danger?
Why is experiencing a seizure and all things related to that considered an excuse, instead of simply a valid medical issue?
carlos.fonke
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Malingering is a potential problem with anyone, with or without epilepsy. (Hey, I finally get to use that word.) Those of us with it know we have a condition the average person knows very little about, so it could be tempting for those so inclined.
They would be spreading misinformation about our condition, however, and are likely to find themselves ostracized even further. They would be hurting all of us, but they would hurt themselves more than anyone.
They would be spreading misinformation about our condition, however, and are likely to find themselves ostracized even further. They would be hurting all of us, but they would hurt themselves more than anyone.
Rae1889
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Its important to me because I don't understand the new outside world. I understand what goes on with me, with other people's E experiences.
Its important because I don't remember things I cared about before E. I have spent so much time making sure that I know what happens in E-land, that the 'normal' world has become foreign.
I do know that the normal world doesn't get any special treatment. No special clauses in contracts, no special terms and no special conditions. They do what they do, and consequences are dished out.
I feel bad that if I am sick at work and actually having seizures to ask to go home. I don't want it to seem like an excuse, and I don't want it to seem like I don't care about my job. I feel bad because I get the 'special' treatment when I don't want it.
I DONT WANT TO BE 'SPECIAL'! I WANT TO BE ME!
Do what I want, when I what. And not have someone immediately write my actions off as a medical condition. I don't want to be anything. I don't want to be so confused and so conflicted inside. I don't want to ask questions that can't be answered and I don't like stepping on toes when I give an opinion and it turns out to be hurtful, when I had no idea.
I don't know when to be mad, what I can laugh at, what I can joke about. I don't know what's appropriate in this world. Its like I was thrown to the sharks and told to swim without knowing how. I've gotten myself this far all on my own. Nobody else. I found you guys and you helped pull me 'out of the shadows' so to speak.
I was embarrassed to go to the doctor sooner because I knew things would change. And change is good they say. But not this Change.
Why can't I just go back to how I was? And if I can't go back, If I have to hurt, I'd rather hurt for all of you, so you all would never ever have to. And not for me. Never for me. But I guess bargaining doesn't help, does it? We are all still stuck.
Just when I think I'm totally okay with E, there is another thing that sucker punches me. I just want to SCREAM!
Its important because I don't remember things I cared about before E. I have spent so much time making sure that I know what happens in E-land, that the 'normal' world has become foreign.
I do know that the normal world doesn't get any special treatment. No special clauses in contracts, no special terms and no special conditions. They do what they do, and consequences are dished out.
I feel bad that if I am sick at work and actually having seizures to ask to go home. I don't want it to seem like an excuse, and I don't want it to seem like I don't care about my job. I feel bad because I get the 'special' treatment when I don't want it.
I DONT WANT TO BE 'SPECIAL'! I WANT TO BE ME!
Do what I want, when I what. And not have someone immediately write my actions off as a medical condition. I don't want to be anything. I don't want to be so confused and so conflicted inside. I don't want to ask questions that can't be answered and I don't like stepping on toes when I give an opinion and it turns out to be hurtful, when I had no idea.
I don't know when to be mad, what I can laugh at, what I can joke about. I don't know what's appropriate in this world. Its like I was thrown to the sharks and told to swim without knowing how. I've gotten myself this far all on my own. Nobody else. I found you guys and you helped pull me 'out of the shadows' so to speak.
I was embarrassed to go to the doctor sooner because I knew things would change. And change is good they say. But not this Change.
Why can't I just go back to how I was? And if I can't go back, If I have to hurt, I'd rather hurt for all of you, so you all would never ever have to. And not for me. Never for me. But I guess bargaining doesn't help, does it? We are all still stuck.
Just when I think I'm totally okay with E, there is another thing that sucker punches me. I just want to SCREAM!
Inaara
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Yeah.
I was just talking about this to some friends tonight. I have aphasia from my brain injury - a lot of times I can't find the right word and a lot of times I repeat things. Can't help it, it is part of the dmage. So is the fact that somtimes I slur speech. But today sometone lectured and griped for ten or fifteen minutes and told me that I need to pay more attention to my speech, how I'm speaking, and that I can control it if I really want to; that I obviously just don't eant to. It's me, it's the meds, it's this or that - anything but a legitimate medical problem. The same person told me recently, "oh my god, don't you dare have a f***ing seizure in my car" as if it was something I caould help.
My friends I was talking to tonight had several impolite euphemisms for parts of the anatomy to describe this person, hehe.
It'd be really easy for me to blame so much on my head injuroes and my epilepsy and there's a lot of days I just want to throw my hands up and give up...but I have some good friends who give me a solid boot to the rear and don't let me do that (which also happened during tonight's conversation).
The point of all this is...do you - or do you allow others to - use it as an excuse for bad behavior that you are fully aware of, or do you take responsibility for your known bad behavior that occurs when you're not having a sezure or post-ictal? If your habit is to "(wo)man up" and take responsibility, I don't think you have anything to worry about. If your habit is to fall back onthe illness and make excuses, then maybe it's time to re-examine things...but ultimately, you're the one that had to take that look in the mirroer, in my opinion. You're the only one who truoly knows your own motives.
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Don't think of it as being stuck in the middle. Think of it as having dual citizenship! And empathy is your passport. Remember that no one is entirely in the land of the healthy. We're all negotiating back and forth between our inner sense of what's "healthy" and "normal" and the apparent norms and expectations of the outside world. I know epilepsy has thrown you a curveball, but from what I can tell, you have the ability to simultaneously catch the curveball with one hand, balance it on your nose, paint it with a dreamscape, knit it a comfy sweater, and and then hurl it back to where it came from at doublespeed. All while disco dancing with the tiny witches. (Yes, it's late for me and my brain is looping leftward). It would be swell to go back to how you were. But don't shortchange the person you've become.
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occb
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Maybe I can re-frame this for you:
Life is like a nightclub -- certain people get an immediate pass from the bouncers -- you know who they are -- that pass is special rules, special treatment for the more advantaged people.
The rest of have to wait. Welcome to the line Rae.
The rules aren't special for you now, they were special for you before your diagnosis. This is what real life is for the majority of people. It's time we learned to include everybody in society and stop applying those special rules. That's the reason for this forum, isn't it?
Life is like a nightclub -- certain people get an immediate pass from the bouncers -- you know who they are -- that pass is special rules, special treatment for the more advantaged people.
The rest of have to wait. Welcome to the line Rae.
The rules aren't special for you now, they were special for you before your diagnosis. This is what real life is for the majority of people. It's time we learned to include everybody in society and stop applying those special rules. That's the reason for this forum, isn't it?
Rae1889
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Yeah, it is,
But from my outlook, it is us getting the special treatment. we get off scott-free with things because people feel sorry for those with illnesses or disorders. or people do things out of the way for us, when they know we are "disabled". I dont like that thought. and I dont like that treatment. Granted, I wouldnt like it either if we got horrible treatment due to a disorder, but there are people who do. I know we are all different and individual, but even then some people get corralled into a different stable.
I dont want to be treated differently in any way shape or form. I want everyone to be equal. I dont mean that everyone should have seizures, but I wish it the other way around. No illness, no disease, no war. But that will never happen , so I guess I better get used to it right?
I dont know why I get in this mood every so often. I dont know what sends me flying, as I usually have a care free "meh" attitude about things. a "who cares, its done and over with now." point of view. usually very neutral, as I can contemplate and logically think of both sides of a realistic scenario.
I've calmed down a bit since last night. but I'm still stewing. I dont think I have ever had the sit down and cry phase yet. I havent greived for the old me. I have gone through anger, bargaining, etc, but not sure I have just had a good long cry about it. But I'm not that type of person, but I think it might be something I should do?
But from my outlook, it is us getting the special treatment. we get off scott-free with things because people feel sorry for those with illnesses or disorders. or people do things out of the way for us, when they know we are "disabled". I dont like that thought. and I dont like that treatment. Granted, I wouldnt like it either if we got horrible treatment due to a disorder, but there are people who do. I know we are all different and individual, but even then some people get corralled into a different stable.
I dont want to be treated differently in any way shape or form. I want everyone to be equal. I dont mean that everyone should have seizures, but I wish it the other way around. No illness, no disease, no war. But that will never happen , so I guess I better get used to it right?
I dont know why I get in this mood every so often. I dont know what sends me flying, as I usually have a care free "meh" attitude about things. a "who cares, its done and over with now." point of view. usually very neutral, as I can contemplate and logically think of both sides of a realistic scenario.
I've calmed down a bit since last night. but I'm still stewing. I dont think I have ever had the sit down and cry phase yet. I havent greived for the old me. I have gone through anger, bargaining, etc, but not sure I have just had a good long cry about it. But I'm not that type of person, but I think it might be something I should do?
occb
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It's natural to grieve your losses, and you've lost alot, but you still have no idea just how much, because all of your other advantages prevent that. You have a safe home, apparent financial stability, a partner who cares about you, a workplace willing to work with you, and a diagnosis.
Sorry to say, but you have to be treated different Rae, or you could suffer severe consequences. The simple fact is people aren't equal, and they aren't treated equally. As partner says -- "I don't give a sh*t about equality, I just want to live." For example, partner gets treated equally at the doctor. As a result, ailments are dismissed, because the doctor has "no reason to believe that a young man would have these kinds of health issues."
Without special consideration a lot of people wind up living their lives in an alley, addicted to drugs for relief of their pain, or worse -- dead. Partner said without my generosity he'd be in a shelter with no job, no money, no doctor, no meds, and no idea what was wrong with him and wondering why life was such an insane struggle. Count yourself lucky that you're not facing any of these circumstances and can still believe in the pipe-dream of equality.
Sorry to say, but you have to be treated different Rae, or you could suffer severe consequences. The simple fact is people aren't equal, and they aren't treated equally. As partner says -- "I don't give a sh*t about equality, I just want to live." For example, partner gets treated equally at the doctor. As a result, ailments are dismissed, because the doctor has "no reason to believe that a young man would have these kinds of health issues."
Without special consideration a lot of people wind up living their lives in an alley, addicted to drugs for relief of their pain, or worse -- dead. Partner said without my generosity he'd be in a shelter with no job, no money, no doctor, no meds, and no idea what was wrong with him and wondering why life was such an insane struggle. Count yourself lucky that you're not facing any of these circumstances and can still believe in the pipe-dream of equality.
Rae1889
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True.
Financial secruity is a little low right now. for the past 2 months, chad has been on EI (unemployment) becuase he is in school. so we are living off of my cheques only, and because he was the main contributor, bills are piling up. Rent was almost a no go this month.
We have car bills, cell bills, cable bill, internet bills, rent, food, cats, my medication is covered up front, but chad's chiro isnt, no is his massage. We think there is something up with his hips and neck. early arthitis maybe. and in his line of worker (sheet metal) you have to be in good health and strong. but by the end of 25 years into it, you've broken your body down hard. We also have credit card bills. I keep kicking myself for ever getting one last year. tricky business those are. We have a wedding we are paying for, and a loan for the car, not to mention the insurance, Chad's parents havent come into winnipeg yet to change owner ship of the truck so chad still has to pay insurance on that.
We have life insurance that is absolutely pointless at the moment as it really does nothing, and both me and chad have some through work. But I suppose we could be worse off. I'm young, and we have taken on alot of responsiblity really fast, not really thinking about the "what ifs"
So we got to cancel a few of the "luxuries" for the time being. Internet not being one of them, as he needs that for school, and the library isnt open for long. He started car pooling with other school mate to cut down on gas money. I can't wait for our income tax cheques.
Financial secruity is a little low right now. for the past 2 months, chad has been on EI (unemployment) becuase he is in school. so we are living off of my cheques only, and because he was the main contributor, bills are piling up. Rent was almost a no go this month.
We have car bills, cell bills, cable bill, internet bills, rent, food, cats, my medication is covered up front, but chad's chiro isnt, no is his massage. We think there is something up with his hips and neck. early arthitis maybe. and in his line of worker (sheet metal) you have to be in good health and strong. but by the end of 25 years into it, you've broken your body down hard. We also have credit card bills. I keep kicking myself for ever getting one last year. tricky business those are. We have a wedding we are paying for, and a loan for the car, not to mention the insurance, Chad's parents havent come into winnipeg yet to change owner ship of the truck so chad still has to pay insurance on that.
We have life insurance that is absolutely pointless at the moment as it really does nothing, and both me and chad have some through work. But I suppose we could be worse off. I'm young, and we have taken on alot of responsiblity really fast, not really thinking about the "what ifs"
So we got to cancel a few of the "luxuries" for the time being. Internet not being one of them, as he needs that for school, and the library isnt open for long. He started car pooling with other school mate to cut down on gas money. I can't wait for our income tax cheques.