Friday, September 4, 2009

Compelling Story...

I always have to chuckle a little when I access my blog to post. It says "has a compelling story to tell..." I never wrote that, so it is someone's opinion. And I do appreciate the "compelling" part, but my "story" or experiences are like thousands of other people who have Epilepsy. The only difference is that I do not mind talking or writing about it. Many people have far more compelling stories than I.

I am up late tonight with a sleepless infant and now I am wide awake as if it's time to go to work and yet it's only 2 AM. If the gym were open 24 hours, I would go there. I would be so skinny if the gym were open 24 hours a day. That way, whether the baby is up at midnight or at 2 AM I could jump in the car, drive 5 minutes, and be on a treadmill. Just think of how healthy I'd be!

But the truth is, I am sitting here at my keyboard trying to get caught up on work and also some loose ends that have been plaguing me around the house. And in the back of my mind I am wondering how long I'll be able to stay up tonight without causing issues for me tomorrow.

I know I am not the only mother who has epilepsy who is up tonight with an unhappy baby. Perhaps we should start a newsgroup or blog just for those late night moments when motherhood seems so impossible with juggling it all and surviving from day to day.

My husband is wonderful. But even after having known me for 4 years, I still don't think he truly grasps the issues that I have when I am not able to sleep fully through the night. I cannot even remember the last time that I have slept more than 2 hours in a row or been able to sleep for more than 5 or 6 hours a night. And although I'm not the only one that gets up with the kids late at night, I am still always wide awake when I hear them and I watch him glide into one of their rooms to tend to them.

For the most part, we try to do things 50/50, but with the baby it does seem at times that he more often than I end up in the room comforting him or rocking him back to sleep.

I do not know how to explain to him how my brain feels at this hour. How do you tell someone that your brain feels like it's falling apart (literally). At times, I have felt like I am barely hanging onto reality because I am so tired. The funny thing is.. I don't necessarily feel physically tired. It's just my brain. My brain is just tired. It is not my body, but my brain that is craving sleep. How does one explain that to someone who does not have seizures?

I did manage to make it to the gym last night. And as I was on the treadmill there were a few moments that I felt I had missed... perhaps it was just seconds. It caught me off guard at first. I am still unsure if it was a simple partial seizure like I have had in the past or if it's truly just a side effect of a sleep deprived brain. Perhaps the mom next to me on the treadmill was doing the same thing, but she wasn't having seizures.

It is very difficult at times with simple partial seizures to tell if you are having an aura, having a full blown seizure, or in my case the past few days, just plain tired.

I received an email from someone this evening. She has had seizures for years, but did not know that they were seizures until she was officially diagnosed several years ago. I get the impression that she feels that because she wasn't diagnosed until more recently that those other years of suffering "do not count". I just spent 15 minutes mulling over her email and sending her a reply back, telling her that it doesn't matter how long you have had seizures or to what severity your seizures are, you just cannot compare yourself to other people who have Epilepsy and say that yours are better or worse than theirs. You just cannot think of it like that. My husband taught me that. With him having had a brain injury, we have a lot of contact with other people who have had brain injuries. Every single brain injury and how a person handles that brain injury will differ. The same is true with Epilepsy I have found.

I remember thinking, when I met my husband and learned of his TBI, how awful. This person has suffered way more than I can ever imagine. I had a hard time coming to terms with what he had gone through, even though I did not know him during that period in his life. And then one day he said that everyone has something that is their life struggle or their one thing that was a major life event for them. For him it was his TBI. It was life changing. For me, it was my Epilepsy. It too was life altering.

My Epilepsy has taken a backseat to my children. And I have to say, thank goodness for that! Another life changing event came the day we were handed our daughter in China. My third life changing event came the day that we were handed our son in Ethiopia. Those are life altering events that I want to remember.

At our monthly support group meeting I may see 5-10 people, all with seizures. I know each of their stories and I do not think of their seizure stories as being any worse or better than the next person. What I see in these people are strong people who are resilient who have dealt with what they were given. And I have met many people over the years who have also not dealt with what they were given just yet or possibly just not accepted what has happened.

I spent the first 3-4 years after diagnosis always wondering "why". Why did this happen? what did I do to cause these seizures to come on? And then one day my neurologist said, "you need to move on now...". I still often wonder why and what is causing this. I fall into the "unknown" category when it comes to what the cause of my seizures are. Last I heard 80% of cases fall into an "unknown" cause. That's a huge percentage in my mind. So are those other 80% blogging tonight somewhere, wondering why they started having seizures? I hope not. I hope they're letting their brains rest and are getting a much deserved night of sleep! Read more!