Things every person should understand about epilepsy

1. It's not just falling to the floor and shaking.
2. Sadly, there isn't a "one size fits all" treatment to epilepsy. Nor is there currently a cure.
3. Schools need to be more educated about epilepsy because a lot of teachers don't understand the symptoms nor what to do should a seizure happen in the classroom.
4. Like I've mentioned in previous blog posts, everyone's struggle with epilepsy is different. In other words, no two forms of epilepsy are alike. 
5. I'm NOT faking it and no, I can't control it!
6. Not all seizures are obvious. A person can look fine when they really don't feel it. They can also look like they're daydreaming when they really aren't. 
7. There's always the fear of where and/or when the next seizure will occur.
8. You don't need to be afraid of being around someone that has epilepsy. It's NOT contagious!
9. Epilepsy does come with depression and anxiety. They're not just side effects of the medications. They also stem from the fact that your chances of doing things other people your age do are quite limited. 
10. Am I defined just by my diagnosis of epilepsy? No!!!
11. It doesn't just affect the person who has epilepsy. It affects their loved ones as well. 
12. Epilepsy is also about what effect the seizures have on your everyday functioning.
13. Don't stick anything in a person's mouth when they're having a seizure. (See my post "Why you shouldn't stick things in a person's mouth")
14. Don't treat the person like they're made out of glass.
15. SUDEP (Sudden Unexplained Death in Epileptic People)
16. Going to the hospital because of a seizure is not always necessary. 
17. I didn't ASK to have epilepsy!!! Don't preach to me on what I should or shouldn't do unless you truly understand how I feel!

Epilepsy problem #33

When people think Black Friday is more important than epilepsy awareness and finding a cure.

All Black Friday is is just a day of fighting crowds in shopping centres just to get Xmas shopping done. Nothing more. What should be highest priority is the health and well-being of all your family and friends.

Epilepsy problem #32

Lack of epilepsy support groups


There are very few that are close to where I live. Even though I have found some support groups online and have made some friends, there still should be more in person type support groups for epilepsy available.

Epilepsy Problem #31

Having a hard time remembering whether you took your meds or not

From time to time, I've either forgotten completely or just couldn't remember if I took them or not.

#TruthorTale

 Brain surgery can cure your epilepsy, no problem. 

                  The answer is....

                    TALE!

Every person is different, especially when it comes to surgery. While some do have the result of being seizure-free for years, others can still have them. There's also risks of having other problems such as with eyesight, hearing, and thought processing. Plus, the age of the person is a big factor when it comes to the recovery period after the surgery. In other words, the older they are, the longer the recovery takes.

30

Whenever there's a loud noise, everyone comes running to where you are. Independence is a huge deal too.

I hate it when I drop something, sneeze, cough, sing along to music, and everyone in my family automatically comes to me or looks in my direction. It's also pretty bad that you're not allowed to stay at home alone even for a few minutes and oh, yes, we must consider ourselves lucky if we're even allowed to go out of the house alone!!!

Famous people of history that struggled with epilepsy

1. Vincent Van Gogh (Artist)
2. Sir Isaac Newton (Scientist)
3. Neil Young (Musician)
4. Napoleon Bonaparte (French military and political leader) 
5. Agatha Christie (Mystery author)
6. Alexander the Great (ancient Macedonian king)
7. Charles Dickens (author)
8. Danny Glover (actor)
9. Leonardo Da Vinci (artist)
10. Julius Caesar (emperor)
11. Michaelangelo (artist)
12. Edgar Allen Poe (poet/author)
13. Aristotle (Greek philosopher)
14. Teddy Roosevelt (26th American President)
15. Bud Abbott (comedian/actor)
16. Lewis Carroll (writer of Alice in Wonderland)
17. Richard Burton (actor)
18. Louis XIII (king of France)
19. Tchaikovsky (Composer of songs such as Dance of the Sugar Plum Fairies) 
20. Socrates (Greek philosopher)
21. Truman Capote (writer)
22. Prince (singer)
23. Elton John (singer and piano player)
24. Lil Wayne (rapper)
25. Lindsey Buckingham (musician in the rock band Fleetwood Mac) 
26. Harriet Tubman (political activist who escaped slavery)
27. Florence Joyner (track runner)
28. Susan Boyle (British singer)
29. Rik Mayall (comedian/actor)
30. Joan of Arc (heroine of France during a phase from the Hundred Years War)

Remember your purple no matter how you wear it!

For Lucy

#TruthorTale

                     No two forms of epilepsy are alike, especially when it comes to symptoms.


                                              The answer is....


                                                   TRUTH! 

Seizures can range from brief loss of awareness, to confusion and being disoriented, to having convulsions.

#TruthorTale

                      You can make a person snap out of having a seizure.

                         The answer is:

                              TALE! 

There is no way to stop a seizure. Best thing to do is to stay with the person and be calm and reassuring once they become aware of their surroundings.

Swimming & Epilepsy

How many of you like to go swimming? I'm sure a lot of you would say yes. I found something on a Facebook page called "Kickin' It Purple" that talks about questions people with epilepsy have about being allowed to swim. Of course people with epilepsy can enjoy various activities such as playing sports. With some sensible strategies, swimming can be one of those activities.

Here are some guidelines:

1. Regardless of whether or not you have epilepsy, it's never wise to go swimming by yourself. For those who have epilepsy, there should be a companion with you that really knows what to do if a seizure occurs. 
2. If at a public swimming pool, the lifeguard should be informed of any potential risks of a seizure occurring. 
3. If you've had brain surgery, you should ask your doctor about swimming and diving into a pool first.
4. Wear a brightly coloured suit or swim cap. It can ensure quick and easy identification.
5. Tinted goggles can possibly reduce the risk of seizure occurrence if flickering/reflective lights is a trigger for you.

Advice for traveling if you have epilepsy

Come on, who doesn't wish to travel? I know I sure as hell love taking trips and have a bucket list of places overseas that I want to go to. Anyway, while traveling out of state or overseas can enhance independence, planning is also very important.
Besides the fact that preparing for medications and possible seizures is important, it's also important to follow some general traveling tips such as these...

1. Make copies of your documents to take with you and to keep at home. Examples are passports, credit cards, emergency contact numbers of family, and numbers to call in case of losing important documents. 
2. Give friends and/or family members copies of your itinerary and make contact with at least one friend or family member. 
3. Keep supplies of medication in both your carry-on luggage and check-in luggage. At least if one supply gets lost, you can have the other. 

Epilepsy problem #29

Vomiting, fevers, and numbness after having seizures

Epilepsy problem #28

Feeling the need to apologize over and over for any embarrassment you might have caused people you were with when the seizure occurred

Epilepsy problem #27

                      Concussions and other injuries that happen because of seizures

Epilepsy problem #26

Having to struggle with getting my teaching degree because of my seizures interfering...especially the absence ones. 

It's worse when the teacher makes rude remarks towards you in front of the class about not listening or following instructions. I had a fall-out with a teacher of a practicum class I was taking because of that and she threatened to give me a failing grade. I refused to take the class again because she was the only available teacher for it.

Epilepsy problem #25

People asking if you were drunk or stoned when you really had a seizure.

Yes, I have epilepsy. Yes, I had a seizure. No, I was not stoned or drunk. No, I am not, nor have I ever been a drug addict. 

Get the point? 

Epilepsy problem #24

Making rude comments out of complete ignorance

Here's an example:
I was a preschool teacher when I had a bad seizure in front of a bunch of 4-year-olds. When I was taken to the emergency room (against my wishes), the teacher I was working with told all the kids that I was going to the hospital because I was going to die! Of course the kids were scared and told me when they saw me again that they were happy I was alive.
Bottom line: People shouldn't make crude comments when they don't really understand what epilepsy is!

Epilepsy problem #23

                 Migraine headaches - Won't say no more

Epilepsy problem #22

Being taken by ambulance to the emergency room strapped to a bed and restrained by a collar brace all because of having a minor seizure. 

It's a scary feeling. I've been to the hospital because of seizures 3 times in my life and can vividly remember how scary and how sore being restrained by a collar brace felt! I couldn't sit up or move around to see what was going on and it also felt like something was jabbing my neck!

support epilepsy awareness

Epilepsy problem #21

When people tell you WHAT YOU NEED TO DO! 

Unless you really understand what it's like having epilepsy or how I feel, don't preach to me and be all like Ray Charles to your own shit!

Epilepsy problem #20

Thought processing issues

There have been quite a few times when it's taken me a while to answer questions. I feel like saying to people who get snarky about it, "Just give me a few damn minutes to think of a definite answer!"

Epilepsy problem #19

Depression

I remember one day I had a seizure in front of two of my younger cousins. When I came out of it, I saw one of them crying. That hurt! For over a week I was so depressed. I honestly felt that my aunt wouldn't trust me with her kids anymore and that my cousins probably hated me.

Epilepsy Problem #18

Having seizures in public

Any kind of public place, you name it, I've had a seizure there. As far as I'm concerned that is just total humiliation at its finest!

Epilepsy problem #17

Having a difficult time finding a job

I wonder if perhaps it's best to just stay quiet about having epilepsy just so we can all get the jobs we've always dreamed of having....

Epilepsy problem #16

Being told "You look normal so it's just not possible for you to have epilepsy."

Are we REALLY supposed to look or act a certain way to have epilepsy? Seriously???

Epilepsy problem #15

Too much excitement triggering seizures


It's true that a lot of excitement about big events such as holidays or going on vacation can trigger seizures. But for fuck sake, what are we all supposed to do when plans are made to do something exciting? Act like zombies so no seizures happen? :-\

Why you should never insert objects into a person's mouth when they're having a seizure

1. It can interfere with the person being able to breathe.
2. It can cause choking to death should the person happen to vomit.
3. Causes damage to the person's teeth. 
4. You can get injured by the person having a seizure.
5. You can have a lawsuit placed against you by the person for physical injuries if you happen to insert anything that does end up hurting them.

Above all...it's a complete myth that a person can swallow their tongue. 

Random Thought

                      Oh, please! Don't even flatter yourself! 
                           I wasn't staring at you. 
                      I have petit mal seizures and you happened to be in
                          my line of vision when I had one! 

-jessi

14

Being jealous of your friends because they can be independent and/or drive anywhere they want. 

YES! I also get terribly jealous of people that can pass one year or more without having ANY seizures! I never could. And when it comes to being independent and going out of the house, my family treats me like I'm made out of porcelain!

Epilepsy problem #12

Falling behind in school because having seizures either keeps you from attending daily or forces you to leave school for the remainder of the day.

Considering all the times I was kicked out of school for the rest of the day and had to get readmitted back in every single time, I'm lucky I even got enough credits to graduate!

Epilepsy problem #11

Not remembering people who say they know you

I met a deaf young woman at a social gathering at a shopping center and about a week after, I ended up having a seizure along with a concussion from the fall. Well, the next time I saw her, I didn't remember who she was whatsoever. I felt really bad, particularly because she started talking to me as if we'd been friends for years. I didn't even remember her name, but didn't want to say so because most deaf will get insulted if you say you don't remember them.

Epilepsy problem #10

When my definition of "I'm ok" can really mean "I feel like shit and just don't want to talk about it." 

Epilepsy problem #9

That stupid EEG glue! Seriously, I wish a shampoo would be invented just for the sole purpose of getting the glue from having an EEG out of a person's hair! 

Epilepsy problem #8

Having plans or a really nice day being taken away from you because of having a major seizure.


I remember a few years ago, I was going without Keppra because of some issues with financial assistance. (They denied me because of my doctor not filling out the form properly) Anyhow, I was at the table that night listening to music and ended up having a seizure that lasted slightly over 3 minutes. Thankfully my mom was home to help me. I ended up badly spraining my foot by somehow getting it tangled under the table. It took a week before I was able to walk without being a lot of pain. Sadly because I was having a hard time walking, my plans for going out to the movies were completely ruined and I was stuck at home fuming mad! So yeah, I know what it feels like to have plans or a really nice day being wrecked all because of a seizure.

Epilepsy problem #7

Going out on dates or to fancy events and having to wear that stupid Medic Alert jewelry. It makes me stick out like a sore thumb!

If I'm out on such occasions, I just leave it at home. I want to look pretty and I want a guy to be interested in me for who I am. And personally, I think that kind of jewelry ruins such things for me!

Epilepsy problem #6

When people crowd around you asking what day it is, where you live, who the President is, etc. 

Right after having a seizure, I can hear what a person saying, but I'm unable to respond to them.
Here's what I want people to do right after having a seizure...
SHUT THE FUCK UP AND LET ME REST AFTER WHAT I JUST WENT THROUGH!!!!

5

Waking up with injuries and/or soreness and not remembering anything


The majority of seizures I've had I ended up having soreness or injuries as results.

I've experienced:

1. Concussions
2. Dislocated shoulders
3. Cuts and bruises
4. Broken nose
5. Sprained feet
6. Pounding headaches
7. Shiners (black eyes)

Need I say more?

Things you should never say to someone that has epilepsy

• "Make sure they don't swallow their tongue."
• "Can't you make them snap out of it?"
• "How come you peed your pants?" 
• "Quit daydreaming!"
• "Are you drunk/stoned?"
• "It could be worse. At least you don't have grand mal seizures."
• "You should be put in a mental hospital."
• Since everyone has different triggers, saying "If you can be ok with flashing lights or listening to music, then you don't have epilepsy" should be avoided. 
• Don't tell children, "The paramedics are taking him/her to the hospital because they're going to die." They're probably already scared enough.
• "Is it contagious?"
• "You're demonic!"
• "But you look normal."
• "You're just having a bad day/going through PMS. You'll get over it."
• "All you want is sympathy, don't you?"
• "If you took your medicines, maybe this wouldn't be happening!"
• "That's life! You have a condition and just have to deal with it."
• "Are you retarded?"
• "You can't be left alone in the house because of your seizures."
• Don't ask, "Did you take your medicine?" or "Are you sure you're ok?" constantly.
• "Was it a big seizure or a little seizure?" or "How bad was it?" Since when the hell has there ever been such a thing as a good seizure?

And there you have it!

4

Being afraid that you'll lose friends if you admit that you have epilepsy.

For the longest time, I never admitted to my friend Carter that I had epilepsy. Since he was so young back then, I felt it would freak him out. But as he got older, I felt scared that if I did say anything, he wouldn't want to be my friend anymore.
Eventually I decided to admit it to him and thank goodness he was understanding!
The point to this is, if the person really was your friend, they wouldn't desert you just for that.

-jessi