Accepting I'm sick

[dash&cj]

Hi I'm 26 , married with 2 children ( 2 & 3 years old ) . I've had E for 12 years now at first I had Clonic Tonic Seizures and now I'm having Absence Seizures. I've been on alot of different medicines ..I'm currently taking Carbatrol and Topamax, but I get really tired from time to time.

Throughout my periods of trying out different medications and doses and dealing with the side effects, I began embracing the side-effects from the medicines as part of my personality, to avoid explaining to people constantly that I have epilepsy and thats why I can't move as fast as you can or I'm always tired...I would have rather been considered lazy than sick. I am slowly coming to terms with my illness and my limitations, my husband is very supportive although he does not understand and I know my illness frustrates him...he tries.

How do you guys handle E?

[skillefer]

Hi dash! Welcome to CWE. We're a pretty friendly group. Hmmmm....how do I handle E.....Well, I guess, I just think of it as no different then asthma or hypoglycemia or diabetes. Personally, I don't think there's anything to be ashamed of. When the people who are around me know that I have E, they adjust their thinking. They aren't shocked when I take out my meds and take them. My friends have gone out and gotten first aid training so they know how to help me. And they've actually asked me what I want done in case I have a seizure. My family and friends have been fantastic. Now, have I lost friends because of E? Yes. But you know what, if they were willing to walk away from because of E, then they wouldn't have been there for me if I ever really did need their help. Would they do that to someone with diabetes or asthma? According to the CDC, 1 in 100 people have epilepsy. If you stop to think about that, that's alot of people! So why do we all hide?

Anyway, feel free to ask questions, vent in the padded room, or just chime in. And remember, you aren't in this alone.

[joan]

Welcome * I think everyone has good days and bad days. Its just part of life. On those bad days you have to remember to be grateful for what we do have. Also you have to remember and reflect on the good days and know there are many good days ahead, still to come.
I think diet, exercise and positive thoughts all mixed with the right meds help alot too. Remember while you are taking care of everyone else, to be kind to you as well : ) Hang in there**

joan*

[TeeTees]

Hi dash&cj,

I guess considering I've had it since birth (39 long years ago), I should really be one off the few who can accept it, but I still get those horrid days after having a seizure or two, or a bad spell of 'em, when I just feel real down about it, asking the "why me?" questions etc.

But at the end of the day, I just tend to pick myself up and get on with life as much as I can, doing the things I enjoy, living as 'normal' as possible.

I'm kinda lucky too in that I'm not a huge fan of drinking alcohol (not that I detest anyone who enjoys it), smoking, or eating fatty foods. None off 'em do my any good, so I can't see the point in it all. Plus, I enjoy exercise, and get down the gym 3-4 times a week, but compromises have to be made here too - when I'm having rough times.

It's all about balancing your life to the best of your ability

[seizures4ever]

Hi and Welcome!

"How do you guys handle E?"

I handle every day as it comes.
That is a corny answer, but it is very true.

If people ask questions, I don't go into any detail unless it's necessary; I tell them what they need to know to satisfy their curiosity (regarding the side-effects part in your post).

But if the situation arises, I definitely explain I have epilepsy. More often than not people respond with "Oh, I'm sorry to hear that, I wasn't trying to pry. How are things for you?" And I generally reply, "Well, everybody has their own challenges." And I leave it at that.

If someone seems genuinly interested in gaining knowledge about epilepsy, I explain about seizures and misconceptions. However, if someone is just "an ambulance chaser" type of person, I do not respond.

Like TT said, we all have "those days"...sometimes "those weeks" or longer, when it all seems overwhelming.

One thing I do, as a parent, is make sure I allow for "me time." (and falling asleep after a seizure does not count as personal time) Give yourself a little time for you...process things, write down your thoughts, grieve if you need to, review the days joys.

All the best to you. Sending seizure-free thoughts your way. -Julie

[Bernard]

Hi dash&cj, welcome to the forum.

We do our best with honesty, humor and grace.

[RobinN]

Hi Dash - Welcome

My daughter had her first tonic clonic about the same age as you did.
Not an easy period of life that is for sure. How did you handle HS?

Rebecca is med free though using many other alternative therapies

[Belinda5000]

Hello dash,

I've had E 44 years since I was 2 I grew up with E.
I accepted my E long ago and when people ask about my E I take that as a chance to educate them.
My E that's lifeand I won't sit home wait for my next seizure.
My husband very supportive he has E but just has auras now.
Belinda

[dash&cj]

Thanks! How is your VNS going? My doctors have suggested that to me before?

[dash&cj]

Hi Dash - Welcome

My daughter had her first tonic clonic about the same age as you did.
Not an easy period of life that is for sure. How did you handle HS?

Rebecca is med free though using many other alternative therapies

High School was okay...I had a little trouble concentrating, but my seizures were not as bad...initially I only had them in my sleep.

Is your daughter still in high school?

Do you have details on these alternative therapies?

[Belinda5000]

My VNS I'm now using the magnet more often and it might postpone my seizure make it shorter the magnet.
Before I got my VNS I was having on average 60 seizures a month.
Belinda

[RobinN]

High School was okay...I had a little trouble concentrating, but my seizures were not as bad...initially I only had them in my sleep.

Is your daughter still in high school?

Do you have details on these alternative therapies?

My daughter has only had one in her sleep that I know of. Luckily it was the second one she had, and I witnessed it.
Since then, most have been at school. Something about that time of the day and her blood sugar is a trigger.

http://www.coping-with-epilepsy.com/...ive-treatments
This is Bernard's page on alternatives. You might take a look through them.
What I did initially after it was clear that meds were not working for Rebecca.... is I took every darn trigger or intuitive thought I had about what was setting off her system. I considered every single thing that was not healthy in the sense that God made her to be. I lived at The University of Google. In fact I am still taking classes there and find great insight.

I have learned since we did not all come out of the same mold, nor do we walk the same line every day... our systems will react differently. All I know is my daughter was fine for 14 yrs. Nothing major changed her life patterns. So I began to suspect nutrition... and VOILA... I found a wealth of info on it.