I Want To Sleep

It took me completely

It took me by surprise

It was like a storm, 

on a sunny day. 

One moment I am smiling,

laughing,

talking,

…the next I am on the floor.

People staring, as I hit the floor.

Questions being hurled at me…

as if I knew,  why the hell

I was on that floor.

As if the not knowing 

wasn’t bad enough.

I lose control,

over my emotions.

I look a mess

Sound a mess

And why the hell…

does my head hurt?

Why am I so tired?

What is going on?

I just want to sleep,

but no I am being put into an ambulance.

Doctors ask questions,

I just want to sleep.

They take blood,

I just want to sleep.

Family worries,

I just want to sleep.

Is this over?

Can I sleep yet?

I am so tired.

I just want to sleep.

Maybe if I sleep,

This will all go away

and I’ll pray…

it never comes another day. 

Shareable Quotable

Quote from I Just Want To Sleep-By Susan Thomas

Conquering the Fear of Surgery- Bert’s Story

This story was found on youtube.com on Penn Medicine’s youtube channel. Warriors With A Pen is not the creator of this story but found this story to be inspiring and worthy of sharing.

Bert’s journey began like so many of ours. He struggled with his seizures and they affected his life in a very negative way. On his really bad days when he had seizures for much of the day he would wake up later and forget where he was or forget what had happened the day before.

In school, he would do really well during a semester then have a bad night of seizures and forget everything he learned. It was frustrating and difficult for him and it still upsets him to think about it. He felt like less than a man because he knew what he was capable of, but his seizures were robbing him of his ability to do them.

For years Bert tried to control his seizures with medication but the medications became less and less effective. His doctor told him he needed to consider having brain surgery, but Bert had a deep fear of brain surgery. There was something about having someone operate on his brain that just scared him. So he found a doctor that was able to soothe his fears and took the time to listen to him.

Bert underwent testing to find out where his seizures were coming from and after they located the source of his seizures and decided it was a safe place to operate Bert faced his fear and underwent surgery.

After surgery Bert says he just wanted to get out of bed. He felt good for the first time in a long time and after he tested his limbs to make sure everything was still good he was thrilled to discover his brain was working!

After some months of recovering and being cared for by his doctors and the hospital, Bert felt like he had a new lease on life. He felt like a door to a horrible negative life had closed and the door to a new wonderful life had opened. He is now able to work, drive, and live a full life. If he had not undergone this treatment he would still be having seizures at best. His surgery gave him his life back.

Watch Bert’s story below for yourself. If you would like to share your own epilepsy story contact us! We would love to help you share it!

Epilepsy- Bert’s Story-Penn Medicine

10 Inspirational Quotes for the Epileptic

Living with epilepsy from day to day is a difficult task even on the best of days. Having to go about your day wondering if today will be a day if you have a seizure or not or in some cases how many will you have. Maybe you have gone years without one and just recently had a breakthrough seizure and your pretty upset right now or perhaps you are tired of not finding any control. What ever your situation hopefully these inspirational quotes will give you a bit of hope and peace today.

1 A Quote From Our Childhood

When you have epilepsy it is so easy to think less of yourself. During the years my epilepsy was uncontrolled I really struggled with school and my self esteem took hits as I watched my peers get to do things I couldn’t because of my epilepsy. Maybe if I had this inspirational quote to look at each day I may have been able to build up my self esteem. Remember that your epilepsy is a liar. You are smart, brave, and strong. You have to be stronger than most to still be here fighting today. If you have made it this far it speaks volumes to how brave, strong, and smart you really are!

The Importance of Positive Self Talk

2 Fight and Appreciate

Just because you have epilepsy doesn’t mean you can’t accomplish your dreams. Just because you have epilepsy doesn’t mean you can’t accomplish something small each day. For years I believed the lie that epilepsy meant I couldn’t be or do what I wanted. It took me too long to figure out otherwise. Write down one big goal today and break that goal down into small accomplish able goals you slowly take each day. For example one of my big goals is to finish my degree and my first small step was finding the right school for me. You can do this!

The Importance of Celebrating Small Wins

3 Human Spirit

I am a strong believer that you are never given anything you can’t handle. Yes it will be hard. A journey with epilepsy is indescribably difficult, but you can do this. Just know that no matter how hard it is you are never really alone. It may feel like it sometimes but you are not alone. There are millions that fight this disease to and as someone of faith I believe that God will help you through the most difficult parts of this journey.

Trust God Even When Life Doesn’t Make Sense

4 Share your story

One of the most frustrating things about epilepsy is all the stigma and myths that float around about it. Sometimes on a bad day it can be easy to just play the victim, but we are the solution to that stigma. If each of us proudly shared that story and took the time to educate the stigma and lack of research funding just might start to change.

Sharing Your Story

5 Epilepsy Does Not Define Me

Do not fall into the trap of letting your epilepsy define who you are. As a teen I did just that. I was that girl with a seizure problem and so I stayed in my bubble of fear and didn’t accomplish much. It took me a long time to see who I was as a person. I wasn’t an epileptic I was someone who happened to have epilepsy. There was a difference. I now can say I am a mother, wife, daughter, friend, follower of Christ, warrior, writer, and so many other things. Write down who you are and don’t let your epilepsy into your definition.

You are not your condition

6 People Will Embrace You

Epilepsy can be isolating if you let it. Having epilepsy you might lose some valued relationships with friends or family members, but if they abandon you over it than they didn’t really care for you in the first place. Having epilepsy taught what a real friend looks like. A real friend, someone who really cares, is someone who will be with you through your bad seizure days and you will be with them in their own unique bad days. A real friend is someone who when you tell them you have epilepsy doesn’t care because they see the person who you really are despite of it. Let go of the friendships that weren’t what you thought and seek out people who will really care for you.

Who Are Your Real Friends?

7 I Won’t Give Up

Things may look bleak right now but don’t lose faith. Their is always hope that you might find control. Their is always hope you will find purpose. Their is always hope you can find a way to live a full life even with this burden to carry on your shoulders.

Don’t Give Up

8 This to Shall Pass

Remember despite what you may be feeling right now or what you are experiencing right now this will pass. You will laugh again. You will be happy again. You will love again. It’s the way of life. We experience great hardship and pain and eventually it fades and we have a time of peace and happiness. Wait for the tide of your epilepsy to go out and try and find that one good thing each day so you begin to see the happy even when life seems like crap.

Going Through Tough Times

9 Don’t Stress

Let’s face it there is a lot of things about epilepsy that is out of our control. We can’t necessarily control when or if we will have a seizure. We can’t control what others think about it or say. We can’t control if we receive the proper care in an emergency situation. Instead focus on what you can do. You can make sure those close to you are educated. You can prepare for public outings. You can take your medicine or treatment. You can control how YOU handle it. Stressing over what you can’t control could even make your seizures worse!

How To Stop Worrying

10 Inspire

Believe it or not you could be the reason someone else finds the strength to keep going on their own journey. Many times we become so focused on our pain and our problems we don’t realize the influence we have on others. Chances are there is someone in your life that you inspire and you don’t even know it. Keep moving forward. By just choosing to keep being a warrior you are making a difference.

Be You

I hope these ten motivational quotes have helped brighten your day. If you are looking for more information check out my post of inspirational songs for the epileptic or my post about celebrities with epilepsy.

If you would like to share your story on this blog feel free to contact me. My contact info is in the contact us section of this website. If you have any quotes you feel should have made the list send them to me! They make it in for a part two!

How To Live A Independent Life of Your Dreams With Epilepsy

When you have epilepsy and live with the struggles it brings on a daily basis the thought of ever living an independent life seem practically impossible. There seems to be a mountain of obstacles standing in your way. How is one supposed to handle their epilepsy in their daily life and live a life of not only independence but a life that makes you happy too? I remember how impossible it seemed when everything was spiraling out of control and now I am happily married, have four kids, and have found control with my seizures. While I can’t give you control I can give you my top tips to living a happy life with epilepsy.

Tip 1: Don’t Let Fear Dictate Your Future

My biggest regret in searching for my own happily ever after was letting fear hold me back for so long. When I graduated high school instead of moving out and living in a dorm somewhere and majoring in something that I actually liked I let fear rule me. Instead, I went to a dinky community college and majored in medical administration because I figured a doctor’s office would be a good place to have a seizure.

I also let fear keep me from calling up someone who offered me a job while I was at school. I was too afraid to tell them I had epilepsy so I stayed in a minimum wage job at a grocery store where I was severely mistreated. I stayed at that miserable job for over 5 years because I was lead to believe that if I lost their health insurance my world would end. Every time I mentioned I wanted to quit gasps of horror quickly followed allowing fear to keep control.

God tells us not to fear at 365 times.

I can’t help but look back and wonder if I might have my bachelor’s degree in a field I enjoy and a good career as well if I just pushed past that fear. Could I have had a normal college experience? What friendships did I miss? How many people have I not helped by letting fear rule me? Could I have had a place of my own? Could I have overcome my fear of the terrible bus system and found my own transportation instead of relying on my parents?

One of the best things you can do is to stop letting fear be a barrier. Instead, see it as a challenge to overcome. The bible tells us not to be afraid at least 365 times. That’s enough for each day. Fear is not of the Lord. Fear is a weapon that is used to keep you from your path. You will not find happiness if you let fear rule you.

Tip 2: Planning is Your Best Friend

First, let me be clear I am not a person that likes to plan. I have always been more of a go with the flow person. Enough to drive my husband and friends crazy. They ask what I want to do I would shrug and respond with whatever. My hubby asks where we should eat I again shrug and say I don’t know. It’s enough to drive anyone besides myself crazy.

So this was something and is something I have to force myself to do. Planning is key to achieving that life you want for yourself. So sit down with pen and paper and write down what you want your life to look like. What things do you want? My list was something like this:

  • find seizure control
  • get married
  • have kids? (This was up in the air for a while before baby fever hit)
  • have a dog
  • have a career
  • move out of my parent’s house

All of these have taken planning. I began asking more questions about my options at doctor’s appointments and began to let doctors run more tests. I asked my doctor and others who had seizures if having kids was possible. I was told with proper planning it wasn’t a problem. They put me on folic acid just to be safe. Folic acid is often used to help prevent birth deformities that could be caused by seizure meds. I joined an online dating site and eventually met my husband.

All these took planning. I thought out worst-case scenarios and came up with safety plans to keep me safe. I told my husband on our first date about my epilepsy. To my delight, he didn’t need the seizure talk as he already knew about them and didn’t care I had epilepsy. He knew what to do. I quit that miserable job, went back to school, and found a better job that treated people with dignity. I told employers upfront about my epilepsy after I was hired. I didn’t give this info out in interviews when I was hired because of my epilepsy for a job I wasn’t qualified for. Instead, I told them on my first day and told them what to do if I had one.

Because of life and having babies I have not quite finished my bachelor’s degree. I often whine, complain, and at times lose hope. We are trying to sort out a hiccup now that’s keeping me out of school, but I still want that career I let fear keep from me for so long. I know one day I will have it as long as I don’t let fear get me back in its icy grasp. You can have what you want to with determination and planning.

Tip 3: Practice Gratitude Daily

It can be hard to see what’s so great about life when you struggle with epilepsy. It is so easy to be sucked into the darkness that is depression and other mental disorders. All you want is to be happy and you become so focused on what’s wrong that you don’t see what’s right. When epilepsy sucks you into depression it’s a bit like seeing the world through a funhouse mirror. Your view of life is distorted and you just can’t see the positive anymore.

Good news is that your brain can be trained to think more positively so you aren’t sucked into that depression as easily. A way to do this is to keep a gratitude journal. Write down 3 or more things each day you have to be thankful for. This forces you to see the positive in the most hopeless of times.

They don’t have to be grand things. It can be as simple as a sunny day. That you have clothes on your back and a roof over your head. It could even be as simple as your still breathing today. Practicing gratitude can be a powerful tool for training your mind to see the positive and allowing you to finally be happy. Even when it seems hopeless.

Tip 4: Seek Help From A Therapist or Life Coach

Epilepsy can make mental illness a very serious barrier to a happy, independent life. One of the best things I ever did was to seek the help of a therapist. When depression becomes a serious problem and I can’t kick it on my own I call my therapist and see her regularly till I am better.

There are numerous kinds of therapists and life coaches. I chose one that would respect my wishes to not medicate for my depression. As someone whose major has a strong emphasis on psychology, I decided I wanted to avoid that route and use other methods that would help retrain my brain. It has been a great route for me. However, if medication is something you need to conquer mental illness that is nothing to be ashamed of. My path isn’t right for everyone. Just like there is no one treatment for epilepsy there is no one treatment for mental illness either.

Therapists and Life Coaches come in all flavors. If you need the extra help I strongly encourage you to find one that suits you best. Once again overcoming the fear of asking for extra help can be a life-saving step. It changed my life for the better when I needed it most.

Tip 5: Lean on Prayer and Faith

Last but certainly not least is prayer and faith. Maybe you roll your eyes at this one or this one annoys you because you don’t have a faith or don’t see how your own faith could help. When I say lean on prayer and faith I am by no means trying to imply that with enough faith you’ll magically stop having seizures. That is just dangerous nonsense. By no means, I am trying to strengthen the myth that epilepsy is caused by demons. That also is dangerous nonsense.

What I mean by this is that prayer and faith can give you the strength you need to get through each trying day. When I was first diagnosed I had already walked away from my faith after a year of ruthless bullying at the hands of my peers so I tried to go through it on my own strength. Epilepsy brought me to my knees. I couldn’t do it on my own strength and epilepsy actually brought me back to my faith.

Now, this doesn’t mean it suddenly got easier. It was still as hard as ever. The difference was I somehow had the strength to keep going. I eventually found the courage to do the testing for brain surgery. Something that had petrified me before. I suddenly had strength to push through my fears. When my strength gave out God helped me up and helped me to keep going. There is no doubt in my mind that if I hadn’t leaned on God I would not be here today.

Prayer: Dear Lord, Help me to push past fear. Give me the strength to get through each day. Hold me during the hard times. Bless those who help me during my seizures with wisdom and a caring heart. Help them to know what to do when I am unable to tell them what I need. Help me to take the scary steps I need to take to live a happy life with your wisdom and protection. In your name. Amen.

It may seem hard to believe now but you can have a happy life. You just have to be willing to fight for it. If you have any tips to achieving a happy life with epilepsy leave them in the comments below to help others like yourself. If you are tired of having the seizure talk with people check out my free printable brochure with all the info they need in one place taken from the CDC and MAYO clinic. To help spread awareness check out my epilepsy swag shop on the menu at the top!

Summer Fun Series Part 2: Is Playing Sports Safe When You Have Epilepsy?

When you have a seizure disorder like Epilepsy the world can seem like it’s screaming NO at you all the time. All of a sudden you find yourself with restrictions, safety plans, and having to navigate difficulties you never had to consider before. So if you love to play sports you may be wondering if it’s even safe for you to continue to do this physical activity that you love so much. Are sports safe if you have epilepsy? Are there precautions you should take? Should you talk to your doctor? These are all great questions that I hope to help you answer.

Can Someone with Epilepsy Play Sports?

So let’s get down to it? Are sports safe when you have a seizure disorder? According to The Epilepsy Foundation, there are some factors you need to consider when answering this question. Some things that need to be factored into answering this question for an epileptic comes down to these few factors listed below:

All the above factors should be considered before deciding whether it is safe for someone with epilepsy or a similar seizure disorder should continue or start playing sports. While according to the video above for many with seizures sports aren’t something that should cause or aggravate your condition there are more rare cases where it could pose a problem. This is why this is a question we must consider our own unique case of epilepsy and history before reaching a yes or no.

How Do You Balance Safety with Playing Sports?

Creating an appropriate safety plan will look different for each epileptic as this seizure disorder varies so vastly. For the girl in the above video since she recovers quickly from her seizures having her doctor run with her was a good plan that allowed her to continue to run. Can we take a moment to give this doctor a huge round of applause for going to such lengths to help his patient? That is amazing!

For me as a teen when my seizures were uncontrolled, my meds often toxic or horrible side effects from meds, it seemed like taking up a sport would be a bad idea, but I firmly believe in not letting epilepsy dictate my life so I started martial arts in high school. I won’t lie. It was hard and my epilepsy definitely put a damper on things. For example, practicing kicks could be quite difficult when the room is spinning because of my medication, but I prevailed. My instructor and his wife who ran the school that I went to knew about my condition and every black belt there was given a rundown on what to do if I had a seizure. It helped greatly that one of the black belts was a doctor and more than once he saw the side effects were becoming unsafe and told me to sit down. While life has interfered and I still strive to return to martial arts and earn my own black belt, participating in this sport gave me a much-needed boost of confidence that helped me through those difficult years. It helped me feel normal and to me that was priceless.

A Few Tips to Keep in Mind When Creating Your Own Safety Plan:

A Last Word:

I am sorry I can’t give you a definitive yes or no to this question, but every person who has seizures is different. For you, the answer might be not now or to choose a new sport that is a bit safer than the one you currently like to play. Ultimately this is between you and your doctor. For me, my seizures didn’t happen every day and I was a pretty mature teen so my parents while nervous didn’t have a problem with me taking up a sport and neither did my doctor. Epilepsy doesn’t have to ruin your life. Epilepsy is only one small part of who you are. Don’t be afraid to go after what you want in life. Doing so will be harder for you and require more planning than your average person, but it can be done. If Cameron Boyce was able to have a successful acting career and athletes with epilepsy have made it to the Olympics why, not you?

Want some help with informing a coach or buddy about what to do if you have a seizure? Check out my FREE printable seizure safety guide. Print as many as you want or need. All information is from the Mayo Clinic and CDC so you can rest easy knowing the tips provided are accurate and safe. Just click the link below, enter your email, confirm your email in your inbox, and then a new email will be sent to you containing your free seizure safety guide!

FREE Printable Seizure Safety Guide

If you need help better understanding the different types of seizures to help your planning check out my Beginner’s Guide to Seizures!