A month or so ago, I had a few seizures in a row. Nothing serious. But enough to shake me. I wasn’t sure what caused them. My sleep had been fine. I wasn’t stressed about work. The seizures came out of the middle of nowhere, it seemed.
I talked to my neuro about it. We decided it might have been work-related stress. So I scheduled some time off, and we increased my meds. But it got me thinking. Because I’ve been on several medications without getting my epilepsy under control, it’s classified as “intractable”.
That word “intractable” is really bothering me. I started this blog with the idea that I’ve integrated epilepsy into my life. I thought I could show people how they might use their epilepsy to build themselves up. But right now I don’t feel really integrated.
Technically, “intractable” means that I’ve tried three sets of medications without getting control. But to me, “intractable” brings me back the place I was thirty years ago. I’m back tiptoeing around my life, not knowing where another seizure is coming or when. I’m back to thinking of epilepsy as something outside of me, hitting me when I don’t expect. I’m back to minding that I’m an epileptic.
I hate this feeling. I know I tell people that they’ll have down days. But I’m not supposed to have a down day. I’ve been in this over thirty years; I should have it together by now. This is not something that is supposed to happen to me.
I’ve ridden out this kind of down time before. No doubt it’ll happen again, and I’ll come back up to where I should be. But right now I just need a little retreat. I’ll try and take it easy on myself.
If you guys are ever in this shape, I don’t have any advice for you right now. Maybe I will, later. But for now, I’m there with you. Take care.