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Positive Experiences through Epilepsy
Epilepsy & Seizures | Last Active: Feb 20, 2023 | Replies (17)Comment receiving replies
@baa
Your comment “It seems at this late stage of my life fear has overtaken me.”
Although it's still relatively early since your diagnosis ACCEPTANCE is essential. The reality is you have it and there is no cure and unpredictable. But we need to concentrate on the positive, Admittedly, that's not easy. I was angry and resentful and probably felt sorry for myself and had a nervous breakdown. I don’t remember for sure, but I don’t remember for sure how long it took to except my new normal, probably 3 to 4 years. Acceptance and positivity is essential in your treatment, however it doesn’t always happen overnight. Don't concentrate on when or where a seizure might occur but that you will gain better control of the seizures and like mine maybe they will stop (if not yet controlled). That of course doesn't mean you'll never have a breakthrough seizure/s.
Stress, worry & fear can increase the possibility of breakthrough seizures in some people.
It’s difficult to be positive sometimes, people telling you, that you belong in the circus, equating you with the devil, people abandoning you for something they refuse to understand. People you knew who would always support you and never leave your side treat you like a stranger. divorce, being considered inferior or defective by some. I think I remember a little boy sitting next to me talking quietly, while I was having a seizure at the mall. Eventually, his mother showed up and yanked him away from me, saying get away from her wife, be catching or words to that effect. I think I remember a little boy sitting next to me talking quietly, while I was having a seizure at the mall. Eventually, his mother showed up and yanked him away from me, saying get away it might be catching or words to that effect. The list is endless. The hurt is often never forgotten. To me these things are worse than the seizures.
No, finding posititivity in the negative is not always easy but never give up, it's well worth the effort.
Do everything possible to control the reality of your Epilepsy and not let the your Epilepsy control you or your life.
Stay strong,
Jake
Replies to "@baa Your comment “It seems at this late stage of my life fear has overtaken me.”..."
I very much agree with Jake’s opinion (@jakedduck1).
Acceptance is not something that happens overnight, I had to work on it. It took me 3 good years to change my attitude toward my epilepsy. But with WILL it is possible! For sure, the support of my neuropsychologist was fundamental to achieving it. As I mentioned I still have some seizures every month, but much milder than they were before. They do not bother me as they did before, I have learned to live with them.
For sure, fear (and other emotions) of having a seizure is a potential trigger to seizures. It was one of mines, leading me to seizures. During a certain time, I would not live home alone due to the fear of having a seizure alone without the support of a beloved one and of being ashamed of myself. I did also not stay well at home just by myself when my husband had a meeting outside. What happened? I created a cage for myself, leaving me depressed and limiting my husband’s activities. But with WILL and the support of my neuropsychologist I faced this fear, and today it does no longer control my life and I do not feel ashamed of having it in front of others anymore. I do most of the things on my own again, go to the supermarket, my Pilates, my Yoga, meet my friends for a coffee or lunch, etc. I do not drive anymore because I consider it to be a risk of injury for me and others. But nowadays we have UBER. Again, I have adapted to my new reality and learned to live peacefully with my epilepsy. Did I never have a seizure outside my home? Yes, it has happened on some occasions, at my Pilates session, at my yoga practice, together with a friend, in a mall and in other circumstances. To feel secure, I have also adopted certain measures when walking and circulating on my own. I was even considering having a seizure dog, but my apartment is too small for a Golden Retriever (keeping it in this limited space would not be something gentle with such a dog). I see today I do not need to have a seizure dog to feel secure again, though I would love to have one. But for that, I would need to move into a house with a garden.
It is possible to find positivity in negativity, do not give up!
Have all a lovely weekend with many blessings and quietude in your hearts and minds.
Santosha
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Thank you Jake. When I read these comments from folks like you and Santosha, I do (and should) feel foolish for complaining. I certainly have not experienced the level of seizures you have had. Since mine are nocturnal I have not experienced the awful reaction you describe from others. I cannot imagine. It’s the fear I have to conquer each night before I go to sleep. Of not waking up. I’ve always had to be in “control”. Single parent, in control of my family, in control of the facilities I managed, always being in control for others. Now I am not in control. I take my meds and see my doctor, but will never forget going to bed as usual and waking up the next day in the hospital. I thought I had died because when I woke up both children were there! Why am I so afraid? Is that normal? Is my faith weaker than I thought? I’m a mess! I so value reading about others’ journey. You and Santosha are like lifelines to me as I move through this.