What if you just accept it?

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Autumn Breeze

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What if you just accept that this is your life, and that seizures are part of it?

What if you don't really care if they keep happening? If you don't care to...be cured?

I don't know, I just don't like people talking about me like I'm broken. Like I need to be fixed. I'm fine! I just seize sometimes and need a day or two off!!

My husband hates it. He's always worried, and going out of his way to drive me to and from work. He wants them to stop, he wants me to go through all the tests again. The people at work, I'm not sure if they think I'm being a drama queen while I'm struggling to find my baseline after a seizure. Probably.

I really truly don't know. I don't know anyone else that has expressed this, it seems everyone wants to be cured. I just don't want to play around with medications, and I'm not interested in surgery.
I.....yeah. Ugh.
 
After a year or so being an AED guinea pig, and getting no reduction in seizures from 5 meds, I decided to just live with the seizures. Living in a near constant post ictal state was much easier than being in a near constant post ictal state with AED side effects.

Since the meds did not help I figured seizing would be the norm and I accepted that reality and spent about 5 years totally fried from regular seizures.

Sometimes it can be harder for those who care about us to see us living with seizures than it is for us to live with the seizures.

Even during the years living with a seizure fried brain, it was not painful, I had no idea how fried I actually was, I was just fried. I keep saying fried because I cannot think of a better word for the post ictal dullness/dopiness I experienced.

Having no day to day memories was very annoying (for others) but it is hard to miss what you cannot remember.
 
Accept E as Part of Your Life, but NOT Controller of Your Life!

chargingbird,
One of the most important things a person w/E has to do is ACCEPT E as a part of their life. But, that same person can't let that E control what they do, how they feel, how they deal with others etc.
Any person who is pushing you to do something to 'fix' yourself is definitely needs to be woke up so that they can realize that YOU don't have any control when it comes to when a seizure is going to happen or if the seizure is going to affect you and your recovery time!
I hate to say this, but your husband's HATING your E may actually be causing you to have seizures more frequently! The more he complains about your E the more stress he is putting onto you, and that stress could very well be the reason that your seizures have continued. You have to make him understand that your E is NOT something that can be 'FIXED'. It can be controlled but NOT 'FIXED'.
Just ask him once 'What he would do if he had a very severe case of asthma and you hated the fact that he had this asthma? If he said that he was going to take some med and fix the asthma, you then ask him 'What is he going to do when he has a asthmatic seizure that his pills don't control? This would only make you feel as though he wasn't FIXING his asthma and you hated this! If he wants your E to get fixed, why didn't he get his asthma fixed. It's because if you have something like asthma or E you can only control them, NOT fix them! Put him in that situation and he may realize that you CAN'T predetermine when your E shows itself in a seizure!
When the people at work or the public look at you as a 'DRAMA QUEEN', they are the problem NOT you.
Many times a person who has E has to develop a very 'THICK' skin. This 'THICK' skin will allow that person to just let those types of feelings slide right off and NOT bother them!

ACsHuman
 
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My husband is just my main example. He hates seeing what the seizures do to me. I get that. He has DDD (degenerative disc disease) and can't be fixed, but it took him years to accept that it wasn't going to get better.

I miss driving, a lot. I really enjoy driving, and I am a very independent person, so that has been my greatest challenge....and will likely take me the longest to accept.

I guess, because I am ok with the cards in my hand, I'm not really sure what to do next. It's been since December when I had my Lamictal level checked, it was ok. I don't really have any interest in changing or adding meds. I imagine that it's time for another EEG, but I don't know how to go about having an ambulatory EEG done. I've had two "regular" ones that show normal readings. So, going through the testing again is opening myself up to a lot of bullshit from my providers, and I just can't wait for them to blame me for them (again) or to tell me they aren't really happening (again).

So, acceptance? Maybe. Running from the tests and doctor. Probably. I'm struggling finding the middle ground.
 
I'm as independent as I can be with my epilepsy and this is said by a woman who has had it all her life. Know one likes there loved one hurting and my DH definitely doesn't but he isn't going to tell me to sit at home all day either.
 
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I'm sure we ALL want a cure for E, but as for right now one hasn't been found. I've suffered with all types of seizures for 30+ years, tried over 10 meds, had a Left Temporal Lobectomy and now have the VNS and still have an occasional seizure. So YES, epilepsy is part of my life. My son had a bad case of asthma when he was growing up, and I used to tell him that my epilepsy was sort of like his asthma; an illness that would be with us for life, but there are ways to treat it. We just need to learn to deal with it day by day.
I haven't been able to drive, so have had to use public transportation, even when my kids were still living at home. NO, we didn't like it, but we had to do what we had to do! Plus my husband at the time was a pilot, so we had NO family close by and he was gone a lot of the time. We had to ask for help when we needed it. And as my neurologist said, take one day at a time. That is all anyone can do!

Hang in there.
 
chargingbird said:
So, going through the testing again is opening myself up to a lot of bullshit from my providers, and I just can't wait for them to blame me for them (again) or to tell me they aren't really happening (again).

So, acceptance? Maybe. Running from the tests and doctor. Probably. I'm struggling finding the middle ground.
Click to expand...

Are you seeing an epileptologist?
 
It does help if you accept it and there are people that aren't able to accept it.

I refuse to be one of those actually.I've heard enough about all the things my mother has done for me and since when is it suppose to be a burden for a mother to help a child.
 
I am not seeing anyone currently.

I changed providers about 2 years ago, but haven't pursued any testing or anything further than medication.

The neurologist in the hospital put me on Tegretol, I stayed on it for about 5 months. I didnt really like her, and when i told her i didnt like Tegretol (it was making my teeth loose) i had to fire her because she nearly refused to change my meds. I don't think there is an epileptologist in town, but there are 2 or 3 other neurologist offices I can go to.
 
Finding A Epileptologist!

chargingbird,
If you want to find any information about how available a Epileptologist may be to you, just Google 'epileptologist + (your city or state)'.
It is surprising how there are as many Epileptologists as you will find when you do this search!:comp:

ACsHuman
 
chargingbird said:
I am not seeing anyone currently.

I changed providers about 2 years ago, but haven't pursued any testing or anything further than medication.

The neurologist in the hospital put me on Tegretol, I stayed on it for about 5 months. I didnt really like her, and when i told her i didnt like Tegretol (it was making my teeth loose) i had to fire her because she nearly refused to change my meds. I don't think there is an epileptologist in town, but there are 2 or 3 other neurologist offices I can go to.
Click to expand...

I in same position with doc meds and no nuro in town
I think accepting it you got no choise plus free world can choose or not if take meds but have take consequences aswell.
I could not take tegratol made me feel awful
 
What if you just accept it? Good question.

I accept Epilepsy as part as who I am but Epilepsy has to accept that I am going to fight it the whole way and be who I want to be. I don't always win but I refuse not to fight to be me.
My wife has her issues with dealing with my Epilepsy and I see it. She is not able to accept it as easy but I do know my stubbornness and want to fight help her. An acceptance can help others.
I had a new co-worker yesterday see my hands shaking and ask me if I am okay in a panic. I had to go through the whole medication due to Epilepsy explanation followed by a talk about Epilepsy. At first she did start to say ' I couldn't tell that you had......' then stopped. After that she really was lost but my acceptance and willingness talk about it made it easier for her to get it.
I don't accept for others but for myself....benefiting others is just a nice side effect.
 
I just live n symbiosis I live with Any condition as long it leaves me alone.
my hand use to shake when I was on epilim
 
YOU Don't LOOK Like You Have Epilepsy!

I have gotten things said to me many times that were very similar to what your new coworker started to say to you. So many people have an impression in their minds that a person who has E is going to have a different appearance in some way. They think of E as something that causes a physical difference in a person's appearance. You can be sure that that woman was surprised as hell that you weren't the physical wreck that she thought you should be if you 'really' had E.
To many people any type of condition has to be seen before it exists. 'If you appear normal you can't have anything wrong with you.' is the way that they think. Thinking like this lets them deny having any problem that they may actually have. They have a mindset of 'See I don't have any problems, because YOU can't see any problems.'. They are the type of people who refuse to go see a doctor, get their eyes checked, have their teeth checked etc. Doing anything that will change their appearance in any way is a NO NO because that would give the WRONG impression to others!
They then treat everybody else the same way. Anyone who uses eyeglasses, orthopedic shoes, joint brace etc. is defective as far as they are concerned. The only people who are OK in their minds are the other people who feel this same way!
I know this because I had a mother(only biologically) who thought and told me that I was 'damaged goods' because I had E. She went to her grave with the thought that E didn't exist. I had been faking my seizures the entire time I had E! She tried to push this thinking onto anybody she could talk to who was ignorant enough to listen to her!
The biggest insult was when my dad died and she refused to have a ribbon that said 'FATHER' on it hung on dad's casket beside the ribbon that said 'HUSBAND'. She felt I wasn't worthy of being recognized as dad's son. Finally her mother and siblings were able to get her to allow this ribbon to be placed. There still was a huge problem. As far as she was concerned 'I was NOT good enough to sit or stand beside dad's casket with her to accept condolences from people who attended dad's funeral!
I have NO TIME for anyone who tries to push their thinking onto me. I will tell them where they can go easier than I breathe. :rolleyes:

ACsHuman
 
Yes, AC. I've even had a tech getting me ready form an EEG once tell me I didn't "look like I had E". I asked her what is someone with E supposed to "look" like. Then I made sure my neurologist knew. It is OUR job to EDUCATE the ignorant!!

Sorry your mother had such a hard time accepting it. That kind of thinking is slowly going away, as long as we are willing to talk about it.
 
acshuman said:
chargingbird,
One of the most important things a person w/E has to do is ACCEPT E as a part of their life. But, that same person can't let that E control what they do, how they feel, how they deal with others etc.
Any person who is pushing you to do something to 'fix' yourself is definitely needs to be woke up so that they can realize that YOU don't have any control when it comes to when a seizure is going to happen or if the seizure is going to affect you and your recovery time!
I hate to say this, but your husband's HATING your E may actually be causing you to have seizures more frequently! The more he complains about your E the more stress he is putting onto you, and that stress could very well be the reason that your seizures have continued. You have to make him understand that your E is NOT something that can be 'FIXED'. It can be controlled but NOT 'FIXED'.
Just ask him once 'What he would do if he had a very severe case of asthma and you hated the fact that he had this asthma? If he said that he was going to take some med and fix the asthma, you then ask him 'What is he going to do when he has a asthmatic seizure that his pills don't control? This would only make you feel as though he wasn't FIXING his asthma and you hated this! If he wants your E to get fixed, why didn't he get his asthma fixed. It's because if you have something like asthma or E you can only control them, NOT fix them! Put him in that situation and he may realize that you CAN'T predetermine when your E shows itself in a seizure!
When the people at work or the public look at you as a 'DRAMA QUEEN', they are the problem NOT you.
Many times a person who has E has to develop a very 'THICK' skin. This 'THICK' skin will allow that person to just let those types of feelings slide right off and NOT bother them!

ACsHuman
Click to expand...

AcsHuman, I totally 100% agree with this post.

Randy
 
When my little girl was in 6th grade I met with 4 teachers, the guidance counselor and principal about her. The kid didn't want to do school work. At the end of the meeting I mentioned to a couple of teachers that I liked the purple bands they were wearing. I was informed that the 6th grade was doing charity work and awareness for Epilepsy that year. A few jaws dropped when I said that people with Epilepsy such as I appreciate that. They did explain it was because they never knew and would have schedule me to come in to speak when the campaign kicked off.
My girl would have been embarrassed so she never said a word but today she gets it (accepts it) and doesn't care what people think. She is happy to explain it now.
 
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