If you're unfamiliar with my story, read here and here. My goal today is to shed some light on this condition.
These facts blew me away. I didn't know that epilepsy was so common before I started writing this post. What is each day like with epilepsy? Well, keeping reading while I shed some light on what each day is like for me.
When I have a seizure, I have NO IDEA what has happened. How long have I been "out of it", what did I do while I was having a seizure? It's very frustrating. If it happens while I'm exercising, I'll rewind the DVD to the last thing I remember and then push play until it catches up to the next thing I remember to help me discover how long the seizure was. If I'm with my family, I'll ask them.
I've already lost my independence once due to epilepsy. I fear that one day I will loose it again. In my 20's I lost my driver's license and had to rely on the good graces of those around me to take me EVERYWHERE I needed to go. I had family and friends keeping their eye on me throughout the day to make sure I made it to where I walking to. At one point I couldn't even work because of this. I've digressed back to a child in many ways, needing my mom to help me more than any adult would like that to happen!
My family has been through a lot when it comes to my seizures. They remember them all, deal with the aftermath, help fill in the blanks of my memory. They worry about me, are afraid that something worse will happen to me...it's exhausting for everyone. I wait for the day when I don't have to hear Brandon ask me if I'm having a seizure because I'm not talking. And I wish that he didn't even have to know that sometimes mommy has seizures. Luckily, he's never seen Grand Mal; I hope that never happens in front of him.
Sometimes I have "auras"; I can sense when a seizure is going to come and can often stop it by using my VNS device. This isn't always the case. Often they hit and I don't know it until I've snapped out of it and am realizing that I've lost time. This is definitely one of the scarier aspects of epilepsy. You never know when it will happen, or where you will be when it does happen. You're like a ticking time bomb. Never knowing when it will happen is another reason why I am such a homebody.
This is how I am feeling as of late. Since my surgery last November, we've been working on getting my seizures back under control. I want nothing more than to have another 6 years seizure free! Unfortunately that hasn't happened yet. I am lucky, because I can usually go about a week or two between seizures. But there are times where I will have one each day. Medication changes happen often, as you will often "fail" one, which means it doesn't work for you no matter what the dose is. Right now I'm in the process of changing the dose of one of my medications because I keep having breakthrough seizures.
This is one part of epilepsy that I deal with on almost a daily basis. Headaches come often, lead to migraines, and don't go away with either special headache medication or REALLY strong over-the-counter medication. I've managed to finally find an OTC drug that works: Excedrin Migraine. Surprisingly this medication knocks out almost all of my migraines.
Like I've mentioned before, epilepsy has taken away a lot of my memories. This is both a blessing and a curse. It's very frustrating to not be able to remember events from your own life; important events, like your first marriage, the people you've dated, my pregnancy with Brandon, and most of college. I try, but there is nothing there. The blessings of memory loss are when you don't WANT to remember things; like my first marriage! I've also had many tests done over the years that I'm grateful not to remember.
November is epilepsy awareness month. If I were ever going to get a tattoo, this is what it would be. This is a beautiful logo, and if you see it, know that it represents epilepsy awareness.
My neurologist always tells me that SEIZURES DON'T PLAY FAIR. I've never heard more true advice regarding epilepsy. Overall, I know that my life is blessed. There are people with epilepsy who have a much harder life than I do. I know what causes my seizures. Other people don't. I am able to keep a job, and take care of my family, others can't. I still have the ability to drive, even though I do it A LOT less than before. I function pretty much like a "normal" person. I am very grateful for all that I have, and hope that one day soon I won't have to worry about seizures anymore.
This is me each day I don't have a seizure!
Each day you have to get out of bed, try not to stress about what may or may not happen, and remember this quote!! And overall, you have to do all you can not to stress out about what does happen, because stress causes seizures!