A community where we can come together... uniquely as one.

It was Maya Angelou who said, "my mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style". We can all relate to these words whether through our unique walks of epilepsy or in the daily grind of life. Epilepsy True was built on these words as a safe haven to inspire. So, sit back, relax, and read on!

  • shannonoconnor333

You are human.

Updated: Jan 13, 2019

Here you are. There you go... again, and again, and AGAIN. You've been at this for what seems like forever. Your efforts toward a miracle have yet to surface and you are finding yourself having anxiety because of all the work you're putting in toward the end goal you're dying to reach. Is it just me or can't it seem like you take one step forward to take two steps back, leaving you so close, yet so far. So close that you can taste it... smell it (literally when it comes to auras), but your efforts aren't sufficient. How many times have you been frustrated and confused because you just want answers, but there is too much information out there and you don't have the knowledge nor the time to understand it all? You research for hours staring at a screen (that could possibly be bad for your photosensitivity... but hey, what's life without a little risk #fearless) only to find yourself with an answer that may or may not be correct...

Here are the faces of people, real human people. From which country they were born, I have no clue. However, what I can see is similarity and connection between them and me. They are human like me, like you.

In being human comes frustration, love, growth, and anger along with many wonders. One I would like to bring forward is anger. Who here with epilepsy has ever felt angry? In case you ever have, please read on...

1. AEDs (anti epileptic drugs):

They're there to help you not have seizures, right?... so, what's with the panic attacks Doc, and that long side effects list? #yheanothanks I feel as if there's no winning. It's honestly a crap shoot and every day is different. Some days I'm happy and others I'm depressed. Sometimes I want to sleep for 20 hours and some I can live off of 4 hours of sleep. I also raise my issue with dosage... how much is too much? How little is too little? That moment when you begin to feel overly tired, overworked, sick, mentally unwell from the medicine... are we taking a dosage that is too intense for our bodies to handle? How about when you are prescribed a certain amount and then still have seizures... are we not taking enough medicine? Balance is key with our AEDs, how do we find it? Or is it an everlasting marathon that never ends? I'm not a runner.

2. "Going Out":

now that's fun! she says exhaustedly. I honestly love a good party and always have fun wherever I go. "Going out" can be so much fun but am I the only one who struggles with it? I mean, you can hardly enjoy the cocktails, there's always a chance the lights are going to make you seize, and by the time you get to the bar you're tired because most people my age are "going out" after 10pm. Now... I'm in a relationship so the bar scene has changed for me, but for those of you who are single and go to bars and clubs, I can imagine it can be intimidating and may even cause anxiety, because people are unaware of a part of who you are. Maybe the person you've just met and are interested in offers to buy you a drink (or worse a shot) or asks why you're wearing glasses that have purple lenses (I have these and they're #fab). You could feel stuck and want to explain why you don't want that drink or perhaps feel out of place at a bar for ordering a club soda and then that person gets to asking you why you aren't drinking. At that point you might just not be ready to spill your epilepsy story to a stranger in a loud bar. If someone doesn't know you and all of the beauty that's within you like your friends do, it can be intimidating to explain that you don't take shots because alcohol isn't right for your system or that your glasses with a purple tint are photosensitive glasses so that blinking lights don't cause a seizure. I remember declining shots recently and it was as if I was the biggest downer at the party... I was so frustrated but then I remembered that my health is so important. Has anyone else been in that situation? I'd love to hear back from any of you who are single or going out with friends to bars. What's your experience like?

3. Remembering stuff:

shoot, how was I going to start this...? oh yea! Memory. Go back in your mind to a time when you were in the middle of a sentence and you just couldn't remember that one word. I'm sure it's happened to you multiple times and I find that it happens to me more now that I am on AEDs. It's especially frustrating when I'm telling a joke or having an professional conversation. Do you ever find yourself forgetting to complete a task, or leaving one of your things behind as your walking out the door (like every day)? It's becoming time consuming and really embarrassing. It's one thing to say, "sorry I have epilepsy" once (not 6 times) to someone when you're forgetful, but when every other sentence has a missing word I feel like taking lunch a liiiittle bit early at work that day #isitfridayyet? While this is no new news to you all, I especially find my memory is worse directly after a seizure but also the following days, my brain is constantly trying to keep up. Give me a #shoutout, #share, #subscribe if you especially struggled with memory retention during your school years. I was diagnosed with a memory retention learning disability as a child but I now consider that a misdiagnosis. I believe I was having seizures as a child causing me to have memory loss.

4. Our Peers:

Fear of speaking out about your epilepsy is common in our community. Why are we afraid to share that we have epilepsy with our peers? I mentioned an idea similar to this above in the portion about "going out". I believe that I'm afraid of speaking up because I'm afraid of being imperfect. While I'm aware that I'm not perfect, nobody likes to hear it out loud and then rebounded back off another person. It's vulnerability that really gets to you too. I consider myself an open book but I rarely share that I have epilepsy with people I don't know. I am improving though, just recently within the past week I shared that I have epilepsy with four new people, bringing me to having told about 10 people total, who aren't my family, that I have epilepsy! My fear not so long ago was that I would be bringing too much attention to myself by telling people I have epilepsy and that that would make me selfish, I'd be judged unfairly, or that I would be looked at differently in a negative way. I now have grown my confidence and am more comfortable each time I speak up... the reactions will surprise you! I have had positive experiences so far in speaking out, people have been very curious and humble.

Epilepsy True was designed to raise up our readers in times of frustration and hope. It is important for us to have balance in life with a place where we can come to feel safe, which I hope Epilepsy True can be for you!



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