[ These are my first attempts at digital collage, so, y’know. Go easy on me. ]
One of the trickiest and most annoying thing about seizures is that once you have one, you’re more likely to have another. You go for weeks, months, years without one and then there’s that breakthrough seizure and the accompanying feeling of “Well, here we go.” Because seizures are like the Lay’s potato chips of the brain. Can’t have just one. The way the seizure threshold works is that once one seizure has broken through, the activity in the brain has been raised to such a level of ZOMG! that it’s likely to continue. Once you have one seizure, you’re primed to have more.
Likewise, once you go a long period of time without one, you’re less likely to have a breakthrough seizure. Making the idea that you’re “due” for one if you haven’t had any kind of moot. I used to think this if I went a few weeks seizure free, but it doesn’t actually work that way.
Shortly after Paulo’s first birthday, I had my first seizure since I was in labor. A week after that, I had another. Since then, I’ve been averaging about five days between seizures and they’re getting worse. Pre-pregnancy, my normal pattern was a seizure every ten to fourteen days, usually in the evening. It’s rare for me to have seizures in the morning and when I do – they’re bad. Which isn’t to say that they’re longer than normal – just that they knock me out harder. They come on faster and the after effects (exhaustion, headache, general feeling of crap) are more severe and last longer. To put simply, they suck. A lot.
The “good” thing about evening seizures is they don’t really mess up my plans much. I’m going to bed anyway. I can sleep it off. Morning seizures… not so much.
And while in general, being a mom is easier than being a nanny – in this case? When I was a nanny, I could take the day off if I had the rare “I just woke up and my brain has decided not to play nice today” seizure and sleep it off. As a mom? No such thing. My own mama was coming down here to hang out with Paulo yesterday *anyway* when I had a seizure right before I was supposed to be going to the dentist.
Which is to say I didn’t get to the dentist. And while I had someone else on Whuffle-duty, it wasn’t the same. I couldn’t really relax in the same way. I couldn’t sleep at first because the headache was too bad and once I got over it, I had to “sleep fast” before my mom needed to get home. And oh, yeah, I had to cancel the appointment.
The seizures crossing the threshold from “irritating” to “disruptive” is a hard, hard line. I’ve been down this road before. I’ve had seizures every day. I’ve had to cancel appointments, flake out on friends, miss classes, call in sick to work – you name it. I hate it. Never knowing if I’m going to be able to do something puts me entirely at the whims of the seizures, and they’re not very convenient whims.
I’m trying to get into see the neurologist as soon as I can – unfortunately, the soonest I can is the end of June. This is the result of some bad timing wherein I moved out of the Boston/PVD area where my previous neuro had her practice and she coincidentally moved to Pennsylvania at the same time. Even if I hadn’t moved, I would have had to see someone new – this just compounds the problem. I can’t wait until June like this. The more seizures I have, the more I’m likely to have more seizures. To go until June… I don’t want to think about it.
I’m doing the only two things I can think of doing. Coincidentally, I got an IUD placed shortly before I started having seizures again. I know correlation doesn’t equal causation – but at the same time… the IUD releases a small amount of progesterone and whatever hormone balance existed during pregnancy and breastfeeding was great for my brain. I didn’t seize at all. I’m told that the IUD isn’t releasing enough hormone to really affect my brain one way or the other, but I also know that removing it can’t hurt. It’s the only thing I can think of that’s actually DOING something rather than sitting back and waiting for a neurologist appointment. So, I’m getting that removed tomorrow. I have no idea if it will help or not. It’s a total stab in the dark.
The other is just faking it. I’ve felt sorry for myself for seizures. I’ve let myself wallow in my misery. I’ve gone easy on myself and just allowed myself to be sick. None of it ever helped. I might as well act like I’m fine. It can’t be worse. I had a brief chat with my stepdad this morning and he asked how I’m doing… and he knew when I said that I’m ok that it was a lie. But it was a lie he understood. He told me that I don’t have to pretend with him, that he understands… but I do have to pretend. I have to pretend with myself so that I can keep going and take care of myself and take care of my son and have it be ok.
Of course having preexisting epilepsy, I knew that this was possible. I knew I could have seizures and need to take care of my baby. Of course I knew. I was just spoiled. Around Paulo’s first birthday, I kept thinking to myself that no matter what else ever happens in my life, at least I had one perfect year. It’s no coincidence that “perfect” included “seizure-free” even though I certainly wasn’t thinking about it at the time. This may not be perfect, but I’m not going to be miserable either. I just refuse.
One perfect year followed by what’s turning out to be one difficult month. It’s time to refocus and remember that every day without a seizure is a good day and every day with a seizure can be salvaged. I had another seizure this morning and I don’t dare drive today with Paulo in the car – so there won’t be our Thursday afternoon playgroup and there won’t be any errands, but it’s not raining and so there will be a walk around the neighborhood. Perhaps a trip to the park. Perhaps a trip to the deli. Perhaps both.
There will be joyful moments today. We will read The Very Busy Spider 8,000 times. We will put blocks in the truck and take them back out. At some point, we will nap. It’s not all bad. It’s never ALL bad. Part of being a Buddhist that has really helped me get through the day to day is to distill what I’m feeling and identify it in as simple terms as possible – while there have been moments of “This feels like suck” lately, there are always moments of joy. Always moments of calm. I’m going to do my best to grab those moments while I can and the let the others just wash over me.