Wednesday, November 6, 2013
The Interference of Epilepsy
As opposed to my usual Wednesday reviews in order to kick off Epilepsy Awareness month correctly, today is about finding out more about epilepsy and helping people become aware of it. If you missed my previous post you can read it here, I Am A Face Of Epilepsy.
I admit that it can sometimes be overwhelming to give to charities. You want to help everyone but you have to pick and choose. I will leave decisions for you to decide but the next time you are considering donating money (which you should be sure to do from time to time, that's just good karma) please take a moment and consider donating to the Epilepsy Foundation. DONATE HERE
Most people with epilepsy lead outwardly normal lives. Notice, I mentioned "outwardly" meaning we have very different home lives. Epilepsy is a condition that does affect the daily life of the person with it and their family and friends. Families have to learn to accept and live with the seizures without blaming or resenting the affected person. The affected person must be able to take responsibility for their actions.We make a lot of compromises in our marriage due to my seizures. I cannot always be as active or as helpful as I am other times. However, I make a point to always be grateful and thankful for having a loving husband to take care of me. At the same time I also sacrifice things I may love to do like drink a cup of coffee, or have a margarita or even take a shopping trip to the mall because I know if I do any of those things I could have a seizure and it forever lurks in my head that at anytime it could happen.
When you have epilepsy you have to keep track of your seizures. They will always ask you how long have you been seizure free. I usually rarely make it over ten. As I write this today I am at day 12 (if I make it all day). That is why we usually do not give epilepsy a face in our house, because we try to enjoy our days in between and forget about the few bad ones. We only focus on the good parts of life.
As I mentioned in my previous post ( I Am A Face Of Epilepsy) I am a lucky person with epilepsy. My seizures are mild, they come about once a week and I usually have a couple of minutes warning. Just because I have a mild form of epilepsy does not mean that it has a mild affect on our lives. It is always a part of our lives. As much as we try to not give it a face, you have to still always remember that it is there and can strike at any moment.
Many people with epilepsy do have certain triggers for seizures. We have not figured all of mine out yet. It is a very long process. However, we know a few things that aggravate seizures. Things like too much sugar, caffeine, physical exertion or anything that really is a stimulant and gets your adrenaline going fast is a trigger for me. Needless to say I do not drink soda, caffeine or sugary juices or foods (with the exception of chocolate once in a while). Can you imagine being a stay at home mom and not being allowed to have any caffeine, sugar anything to help you stay active and awake? I am just saying that alone has not been easy on my husband Nick or I since I became a mother. Being a mother takes a lot of energy, physical exertion and not very much sleep. Pretty much everything that motherhood brings can trigger a seizure. Of course motherhood is way worth it!
For me, a seizure is what I call a fishbowl effect. I feel like I am in a fishbowl and everything gets distorted visually and hearing wise. I lose total control of my body and usually then, it will start making repetitive movements. I have what are called complex partial seizures. So I do not always thrash around in a grand mal seizure like most people expect. However, it is definitely noticeable that I am having an episode that I cannot control. Usually right afterward I black out. I come to in about a couple minutes and usually am very lethargic, sleepy, confused and have a massive headache for a good twelve more hours before I am back to normal again. I actually think it feels like a massive hang over only without the fun the night before.
You may think it is no big deal. However, as I have mentioned I am one of the lucky ones with epilepsy. Epilepsy is extremely common among children. Imagine your child even having something as mild as what I experience. Now, imagine when your child asks how to fix it and how they got it, you have no answers, because we just do not have them.
That is why I am doing this campaign. To help raise money for Epilepsy Awareness. We need more studies, we need better equipment.We need a cure! Donate Now!
People who have epilepsy have an increased risk factor of poor self-esteem, depression and suicide. Many people with epilepsy also live with an ever-present fear that they will have another seizure. Epilepsy can severely restrict a person's independence particularly with driving. Although most people with epilepsy lead full, active lives, they are at risk for two life-threatening conditions; Status Epilepticus which is basically when a person goes into a prolonged seizure and their heart gives out, or Sudden Unexplained Death which happens to people with epilepsy and is exactly what it is. There is not even a good name for a reason people die from epilepsy, they might as well call it "We Have No Idea".
Yet, as I have mentioned in my previous post (I Am A Face Of Epilepsy) 1 in 26 people in the United States will develop epilepsy at some point in their life. 65 million people in the world have epilepsy. Yet still, we have no answers to tell our loved ones who suffer from it.
*****Please note sources for this post were from Epilepsyfoundation.org and Medicinenet.com******
Thank you for reading my blog. The platform is purple this month in honor of Epilepsy Awareness Month. Please click on the tab above to find all the information that is going on with Epilepsy Awareness. Please continue to share with your friends and family and spread the information!