Getting on with it...
- Thread starter nic
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
I have had it (along with other neurological issues; they cropped up close to the same time) for a little over 5 years. At the 5 year mark I can say for me that it is not so much accepting seizures and the other issues as acknowledging their existence and respecting the limitations they often impose, so that I can live my life fully but safely and with as few seizures as possible (ie. avoidance/minimization of suspected triggers, etc.) I'm not sure I will ever accept it, because my interpretation of 'acceptance' is giving up the fight and giving up finding the answers for a cure to whatever this unknown condition is that I have.
- Messages
- 5,548
- Reaction score
- 25
- Points
- 213
I've had E since 1980 and have tried numerous meds, had brain surgery and now have the VNS and still have occasional seizures. I have 'intractable' epilepsy, therefore I have accepted the fact that I will forever have epilepsy/seizures. But my difficulty is accepting the fact that others still see me as the "one with a mind disorder" instead of a "BRAIN" disorder. It seems to me that others have trouble accepting the fact that it could one day be them. 
onder:
onder:- Messages
- 2,241
- Reaction score
- 0
- Points
- 0
I've have E since 1964, and can honestly say I was a teenager when I accepted my epilepsy.I've have epilepsy for over 50 years I was diagnosed in 1964 at the age of two.
I've have a RTL in Montreal,Canada in 1982 and I've had VNS.I will soon be starting my 24th to 25 drug.I'm refractory and I've never been able to drive and only been able to hole three jobs. I don't think acceptance is giving up the fight because I also have other health conditions also like my asthma and my AFIB. (irregular heart beat)
I've have a RTL in Montreal,Canada in 1982 and I've had VNS.I will soon be starting my 24th to 25 drug.I'm refractory and I've never been able to drive and only been able to hole three jobs. I don't think acceptance is giving up the fight because I also have other health conditions also like my asthma and my AFIB. (irregular heart beat)
Very well put, masterjen.
- Messages
- 3,548
- Reaction score
- 95
- Points
- 213
nic
I think masterjen put it well, how and when you accept it is really up to you, by that I mean when you are ready to believe and realise you have this but its not your fault and you will have to live with it. In doing that you realise you are powerless over the seizures and when they come there is nothing you can do but that does not mean that the rest of the time you sit in a corner afraid to do anything, if you become afraid to do thing the epilepsy has won and has control of your life. Epilepsy does not decide my life or yours, yes we have seizures and it takes time get over them but after that its our life, our will to live, its our right to lead a good and for want of a better word a normal life.
For me, to say I accept epilepsy is to say right I have a schedule to keep for my own benefit and health after that its my life.
I think masterjen put it well, how and when you accept it is really up to you, by that I mean when you are ready to believe and realise you have this but its not your fault and you will have to live with it. In doing that you realise you are powerless over the seizures and when they come there is nothing you can do but that does not mean that the rest of the time you sit in a corner afraid to do anything, if you become afraid to do thing the epilepsy has won and has control of your life. Epilepsy does not decide my life or yours, yes we have seizures and it takes time get over them but after that its our life, our will to live, its our right to lead a good and for want of a better word a normal life.
For me, to say I accept epilepsy is to say right I have a schedule to keep for my own benefit and health after that its my life.
Carpentergirl
New
- Messages
- 105
- Reaction score
- 0
- Points
- 0
there is great advice and knowledge to be soaked up on here....so thankful for this forum..everyone Is so unique and different and it benefits us all...I actually do better with my epilepsy since I have "accepted" it...it took me ten years to stop denying that that's what I really had....and pretend that's it was "something else"....it's the ppl around me that you have to get to "accept" it...that's the hard part sometimes...and accepting it = being accountable , and taking charge of it...in my opinion, I think accepting it is a good thing, because you acknowledge it...the demon, and a lot of us call it....and decide you will do what you can to try to kick it's ass...lol ...knowing and "accepting " there will be times that you will get your own ass kicked once in awhile....that's how acceptance is to me...and I no longer sit there and worry about my epilepsy on a constant basis....
nic
New
- Messages
- 35
- Reaction score
- 0
- Points
- 0
I think I am coming close to acceptance. I have my good days and bad days. I just have to accept that this is happening to me and accept that the things I used to do I can no longer do. I refuse to leave gaping holes in my life, I just need to fill the holes with different things that I am able to do.
This forum has helped a lot. Reading other peoples posts helps me realise that I am not alone.
Whether it be day or night I can come on here and feel encouraged by the good vibes going around.
This forum has helped a lot. Reading other peoples posts helps me realise that I am not alone.
Whether it be day or night I can come on here and feel encouraged by the good vibes going around.
Garbo
Stalwart
- Messages
- 153
- Reaction score
- 0
- Points
- 66
I think it depends on the individual, circumstances, medication (changes to, as well), etc. I tend to not like combative rhetoric, but I understand its uses. So, while it may take someone years to come to a certain realization, epiphany, reconciliation, etc., it may take someone else a few months or someone may never come to terms with it. Also, as we evolve and morph in our own views, so does our relationship to our various identities as men/women (or other), wives/husbands/partners/single individuals, parents or not, students/academics/job bearing individuals, and of course as epileptics, etc. These are identities we claim, and while being epileptic is an identity that is forced upon us, we can reconfigure it in various ways-- do we identity as epileptic, someone with epilepsy, disabled, E, etc.?
Personally, as I grow older (I was diagnosed eleven years ago), my views toward it change, but I can say that I don't think about it that often unless I have a seizure or my epileptologist changes my medications. In other words, something has to spark the conversation in my mind. That being said, epilepsy is a spectrum and my epilepsy is drastically different than someone who has a severe form where it dominates their very existence. Neither thinking is incorrect.
I think it's good to be patient with yourself during this time and, as you already mentioned, you're not alone! Not only do millions of people have it (which can often function as a form of comfort), but there are so many forums to discuss it (safely) with others-- both online and offline. When I had time, I used to go to our monthly meetings, and although I never talked because I am surprisingly super shy in RL, just meeting other people and hearing their stories gave me a lot of comfort. I always felt like I was thinking, "Ah, I know that!" or "I've been there!" I always felt less anxious after I left.
Not sure if any of that helped, but I think it's good to keep in mind that we're all stronger than we realize. Patience, education, time, self-care-- those are all key.
Personally, as I grow older (I was diagnosed eleven years ago), my views toward it change, but I can say that I don't think about it that often unless I have a seizure or my epileptologist changes my medications. In other words, something has to spark the conversation in my mind. That being said, epilepsy is a spectrum and my epilepsy is drastically different than someone who has a severe form where it dominates their very existence. Neither thinking is incorrect.
I think it's good to be patient with yourself during this time and, as you already mentioned, you're not alone! Not only do millions of people have it (which can often function as a form of comfort), but there are so many forums to discuss it (safely) with others-- both online and offline. When I had time, I used to go to our monthly meetings, and although I never talked because I am surprisingly super shy in RL, just meeting other people and hearing their stories gave me a lot of comfort. I always felt like I was thinking, "Ah, I know that!" or "I've been there!" I always felt less anxious after I left.
Not sure if any of that helped, but I think it's good to keep in mind that we're all stronger than we realize.
Patience, education, time, self-care-- those are all key.
nic
New
- Messages
- 35
- Reaction score
- 0
- Points
- 0
Thank you all for the replies.
Although my husband says my seizures are pretty bad I have no memory of them. I find it's the expectation of never knowing when one is going to occur that scares me the most. My first seizure was in Tesco's. I shut six self service tills down for an hour...on Easter Monday. I'm afraid to go out.. my hair needs cutting but I'm afraid. I went to the dentist last week and I was so scared my husband had to come in and hold my feet.
The summer holidays are here for two of my children and three weeks away for the other. I want to take them places in their holiday..but again I'm scared. My husband says he's going to buy a camper van so wherever we are I can lay in the back if I feel a seizure coming on. Genius!
Although my husband says my seizures are pretty bad I have no memory of them. I find it's the expectation of never knowing when one is going to occur that scares me the most. My first seizure was in Tesco's. I shut six self service tills down for an hour...on Easter Monday. I'm afraid to go out.. my hair needs cutting but I'm afraid. I went to the dentist last week and I was so scared my husband had to come in and hold my feet.
The summer holidays are here for two of my children and three weeks away for the other. I want to take them places in their holiday..but again I'm scared. My husband says he's going to buy a camper van so wherever we are I can lay in the back if I feel a seizure coming on. Genius!
Hi Nic,
I remember so well having the same fears you are describing. I think one step in the right direction is realizing that these fears aren't strange or stupid. They are natural and you're not alone! What really helped me losing those fears was learning more about epilepsy and going to places like this to see that other people have had the same issues. Our lives changed with epilepsy but they didn't end. There might be things we can't do but there are still plenty of fun things we can do, more than we'll have time for.
- Messages
- 5,810
- Reaction score
- 827
- Points
- 268
Everyone is different when it comes to this matter.
I started having seizures about 12 years ago when I was 27. I had to be put into a coma for a few weeks because I was literally having one seizure right after another. When they were able to get my seizures under some what of control I was able to go home. At that time I may have had one or more a day or I might go a few days with out one then have a seizure.
My seizures were very bad at first. I didn't know when they were coming on and I would black out during them and not even know that I'd had it unless there was someone there to see it happen. Even now, I'm having around 7 a month, I still don't know they've happened unless there was someone there to see it.
It didn't take too long for me to accept it. I was in the hospital and having to take medicine every day when I got out. I was having horrible headaches (which I usually get after a seizure) a good bit. I knew this was happening because I had epilepsy and for no other reason. I know it took my family a lot longer to accept the fact that I had epilepsy than I did and I think it was because they were the ones who saw me in the coma and they saw the seizures happen and I didn't.
My family were the ones who were scared about not knowing when a seizure was going to happen and they were the ones who wanted me to just sit in the house and do nothing and have someone around me at all times. I know it took them at least 5 years before they realized that I was able to do things. Even now however they still don't want me doing things alone.
If anything you could say I was mad because I had it. I almost never know when a seizure is going to happen and I had to stop driving were the main reasons but I still wanted to live my life. What makes me the maddest, and still does, it the fact that I can be at some type of major event like a concert or sports game and I could have a seizure in the middle of it. It's not like you can look at the calendar and say "I'm going to a baseball game on the 7th so I'm not going to schedule a seizure for that day".
I had to have surgery on my spine a few years ago, the pain in my back was so severe that I almost couldn't walk at times. The dr who was doing the surgery told me several times that if I were to have a seizure while he was operating that I could end up paralyzed. He said that it is very rare that people have seizures while they are under anesthesia but it could still happen. I still decided to have the surgery because I wasn't going to let epilepsy stop me.
It's great to see that your husband is helping you deal with it! This is much better than what my family did.
I started having seizures about 12 years ago when I was 27. I had to be put into a coma for a few weeks because I was literally having one seizure right after another. When they were able to get my seizures under some what of control I was able to go home. At that time I may have had one or more a day or I might go a few days with out one then have a seizure.
My seizures were very bad at first. I didn't know when they were coming on and I would black out during them and not even know that I'd had it unless there was someone there to see it happen. Even now, I'm having around 7 a month, I still don't know they've happened unless there was someone there to see it.
It didn't take too long for me to accept it. I was in the hospital and having to take medicine every day when I got out. I was having horrible headaches (which I usually get after a seizure) a good bit. I knew this was happening because I had epilepsy and for no other reason. I know it took my family a lot longer to accept the fact that I had epilepsy than I did and I think it was because they were the ones who saw me in the coma and they saw the seizures happen and I didn't.
My family were the ones who were scared about not knowing when a seizure was going to happen and they were the ones who wanted me to just sit in the house and do nothing and have someone around me at all times. I know it took them at least 5 years before they realized that I was able to do things. Even now however they still don't want me doing things alone.
If anything you could say I was mad because I had it. I almost never know when a seizure is going to happen and I had to stop driving were the main reasons but I still wanted to live my life. What makes me the maddest, and still does, it the fact that I can be at some type of major event like a concert or sports game and I could have a seizure in the middle of it. It's not like you can look at the calendar and say "I'm going to a baseball game on the 7th so I'm not going to schedule a seizure for that day".
I had to have surgery on my spine a few years ago, the pain in my back was so severe that I almost couldn't walk at times. The dr who was doing the surgery told me several times that if I were to have a seizure while he was operating that I could end up paralyzed. He said that it is very rare that people have seizures while they are under anesthesia but it could still happen. I still decided to have the surgery because I wasn't going to let epilepsy stop me.
It's great to see that your husband is helping you deal with it! This is much better than what my family did.
Zolt
New
- Messages
- 287
- Reaction score
- 0
- Points
- 0
Accept it, not sure i can do that. To me a seizure is like, well like death cometh. That feeling that somehow you may not live through it, i'll never accept that. It's a horrible feeling to have some type of internal force, force you to the ground. It's not a punishment from anyone, it is what it is. I've had it for 9 yrs and every time one comes along, its almost an out of this world feeling. Like someone punching you out. Accept all that, never. But of course it's dependent on the type of seizure you may have. My 2 cents.
iano: op:
iano: op:Hi nic, I'm glad I found your thread. I got epilepsy out of the blue when I was 30, now I'm 64. I could give you many clichés like "Quitting is not an option" or "When life gives you lemons, make lemonade" etc. However, you must build a strength, a belief from within. That comes from education about epilepsy. It also comes from surrounding yourself with others and hearing about their experiences, good and bad.
Knowledge is a wonderful tool. Become comfortable with it. Always know that there are resources available, and people who care. Perhaps you feel now that your life has changed completely. But life is a series of adjusting to changes. With more knowledge and education, and more experience with having epilepsy, and knowing you are surrounded by loving support, you will have victory over what seems to have taken you hostage at this point.
Always believe that you will come out the winner. And when you do, use your story and experience to help encourage someone else some day. But for now, know that all will get better with time, and have faith that your life will change completely for the good.
Knowledge is a wonderful tool. Become comfortable with it. Always know that there are resources available, and people who care. Perhaps you feel now that your life has changed completely. But life is a series of adjusting to changes. With more knowledge and education, and more experience with having epilepsy, and knowing you are surrounded by loving support, you will have victory over what seems to have taken you hostage at this point.
Always believe that you will come out the winner. And when you do, use your story and experience to help encourage someone else some day. But for now, know that all will get better with time, and have faith that your life will change completely for the good.
Last edited:
Garbo
Stalwart
- Messages
- 153
- Reaction score
- 0
- Points
- 66
There is a very famous scholar by the name of Judith Butler who writes on gender and sexuality, but she says that identity is a continuous state of becoming. In other words, she states that we would like to believe that our identity is a set state and that once we come to a resignation about something (i.e. I am disabled or I am epileptic) that it remains so ad infinitum. I love the way you said this because I think it resonates very much with the scope of living with any illness, or something that drastically changes one's identity and how one perceives oneself. It's continuously changing and in one sense we kind of have to be okay with that as difficult as it often is. You said it so perfectly, thank you!