How to Live Well with Epilepsy - Part III - Talk About it.

We all need to admit it - Epilepsy bothers us at one point or another. Even myself, the "ultimate advocate" (in the words of my fans) gets knocked down every once in a while. Sometimes the seizures, doctor appointments, medications (not to mention switching medications, and hospitalization is too much to handle for anyone and there's really no way around it.

It's very important to understand that's it's okay to be frustrated sometimes and it's okay to let others know. Having a support system and expressing your feelings is my #1 tip to anyone who has Epilepsy, and if you follow me you've heard me mention it a million times or more. You need to have someone to talk to, or some way to express your feelings.

Talking about your feelings reduces the ridiculous amount of stress that Epilepsy can bring over our minds as people with this illness. Stress is one of the #1 causes of seizures, so it's very important to get rid of stress in order to reduce seizure activity in the brain. Here is a list of some great ways to express yourself when you have had too much, and you should definitely practice whichever ways strike your interest. If they all seem to difficult, simply give them a try. Talking about your Epilepsy can be hard, but it gets easier after practice - Just like riding a bike.



1. Literally "talk" about your feelings. Who do you talk to most about your other problems in life? Is it your mother, your best friend, or a stranger at the bus stop? Even if it feels hard, let yourself open up and talk about your problems. You'd be surprised how much stress can be relieved after "letting it all go".

There are days when I have to say "Dad, can I talk to you for a little bit? It's important". My dad will sit down, and the tears come flowing (sometimes out of both of our eyes) as I tell him how stressed out I am on my new medication or how scared I am thinking about what comes next. But when it's all said and done, and my father hugs me and tells me it will be okay, I feel a sense of relief come over me.

2. Write about your feelings. The whole reason I started my blog was to write about my experiences with the VNS. If you go back to some of my oldest posts, you'll probably notice how bitter or displeased I felt about getting the VNS implanted in my chest. I was tired of medications, tired of doctors, tired of seizures, and ready to be done with it all.

Creating this blog actually helped me get rid of that built up stress. Even though I was really unsure if anyone was even reading my blog, my stress was slowly going away. Not completely, of course, but for the most part I was relieved.

You can easily make a blog of your own on http://Blogger.com (and you can even set your blog to private, so only people that you choose can read it) or write in a diary at home if you are a little more scared of people knowing about your private life. There are other blog sites if you search "blog" on google, so do some searching until you find one you like best.

Maybe tweeting or updating a status can help. If you're stressed, let others know and post a status like this: "Seizures are non stop... I want them to go away forever on days like this." This is an actual status of mine that I posted not even an hour ago. I feel so much better that I let it all out, and the encouraging words of my family really helped my spirits.

3. Speak about it in other ways, such as art. As a lot of you know, I am also an artist. ( Click here to view my art ). I use my art to tell others what I am feeling without using words, and some of my deepest, darkest secrets lie within the layers of the pain on my canvasses.

Are there any things you like to do that express your feelings? Do you paint, draw, sculpt, etc? Have you ever wanted to? Even if you haven't done it before, give it a try. You don't have to sell art to be successful and expressing your feelings. You can keep your art to yourself if you'd like.

Phase II of my new oil painting... How do you like?

4. Join an advocacy/support group for people with Epilepsy, illnesses, etc. I don't like to shoot people with Epilepsy down or make them feel disabled, so excuse me if this seems to contradict that claim. However, talking with others who share your problems can be a whole lot more comforting. Trying to get a person who doesn't have Epilepsy to understand what a seizure is like is trying to make a blind person watch a silent film.

Ask your healthcare provider if there are any Epilepsy support groups in your area, or search them at http://EpilepsyFoundation.org . If that isn't successful, you can also join the awesome online eCommunities for Epilepsy.

5. Talk to yourself. Don't take this wrong - I'm not asking you to be a loony! I'm only asking you to reassure yourself now and then that everything will be okay. Let yourself know that things were good at one time in your life, and they will soon be good again. You are just going through a rough patch.

One thing I like to do is write bible verses, uplifting quotes, and messages to myself on sticky notes or a white board and hang them on the bathroom mirror, bedroom wall, refrigerator, etc. That way I can see them when I'm around the house and remember that things are alright. It's a very helpful thing to do, aside from how silly it may seem to some.



I wish you all a wonderful week, and hopefully a seizure-free week! Please don't forget to visit Mandy's Hero Fund for Epilepsy page here and help me raise $1,000 or more for Epilepsy! It's safe, easy, and secure to donate - Plus, you know for sure that all donations go directly to the Epilepsy Foundation. Tax receipts are available upon donating $5 or more.