The Epilepsy Cycle

I stood there, arms bracketing the laundry hamper, head hanging and watched the puddles form against the lenses of my glasses. Heartbroken tears cradled and collected. Familiar. I’d gone 5 whole days seizure free and was shooting for that elusive full week of reprieve but it wasn’t meant to be.

Last night’s episodes rocked me- my confidence in myself, the hopes for this new drug combo and for some reason, brought an overwhelming sense of guilt. Guilt is a common side effect of medication yet this was a guilt as though I’d let myself down, let others down by not “following through” on being seizure free. I’d shared my previous days’ accomplishments on social media and then failed.

I was back to the usual; the first seizure happened on the couch, early this time- around 8:30- and then they rolled on from there… My husband trying to put my newly very cranky 3 year old down while trying to put me to bed as well. lol What a scene- a 3 year old screaming about not wanting to brush his teeth and a 36 year old stubbornly insisting she was steady enough to brush her own. If it wasn’t a serious situation, our bathroom scenario would’ve been comical. My son stood on the toilet seat clenching his lips together, stomping, and my husband turned to me, hugging me from behind to keep me steady while I tried to finish. In my stubborn effort, I’d successfully smeared toothpaste all over my face and swallowed the other half… I know he wanted to shake his head in an “I told you so.” Instead he walked me to our bed.

My son refused to go to his own room and Daddy wanted to stay with Mommy, so we all laid down in our bed and tried to sleep. Eventually my son flipped, his feet by my head, and I stayed curled into a ball. Seizing off an on and then feeling the cold flush of auras in between, eyes starting to tick to the side. I tried to focus, stare at my son’s little toes during my breaks in episodes. And then the toes would disappear and reappear. Over and over. And so the night progressed, off and on, into the morning. My poor husband had finally fallen asleep and began to snore. It actually angered me, his snoring, since that meant he’d drifted off somewhere else. I couldn’t. My body just wouldn’t let me be at peace. Apparently, I’d had enough of that over the past 5 days and I needed a reminder that it’s always there. Always more powerful than me. Always Epilepsy.

So yes, I broke down over the hamper this morning when I couldn’t even summon enough energy to put a load in. Instead of being at my son’s pajama day sing-a-long, I was dizzy, exhausted (what’s new?) and having one-on-one conversations with myself over this persistent seizure headache. Then the phone rang. It was my husband checking in. I wanted to cry, complain, just sulk over the phone but I know he’s had enough, just like me. Instead, I told him I loved him and I’d be okay and hung up the phone.

Then I sat down to try and describe my feelings coherently…

Being no stranger to this situation, I’m grateful for five days – what a wonderful break! Yet by the same token, when a med fails it crushes your optimism. Because you know- once a med’s stopped working once, it can stop working again and again. And I’m at the end. So you ask yourself- what’s next?

I don’t know. Cross your fingers and start back at 1?…

That’s all we really can do.