I roll over in bed,and suddenly it’s morning. It still feels so early. I check my phone. It’s 10 am. 10 am!! I feel like I could sleep for hours. I haul my little bum out of bed and pour some cereal into a bowl and go back to bed and turn on my laptop. I need to listen to my “pink noise” before I start my day. “Pink noise” sounds just snow on your television, (you know on those channels that you don’t get) but a softer, more pleasant version of it. My Biowave feedback doctor prescribed it to me. Apparently it’s supposed to calm the brainwaves that cause seizures, and it’s good to listen to it when you first wake up in the morning. I always listen to it full blast. It doesn’t really feel like it’s loud, until the track is over and it switches to an actual song on my itunes list. Holy crap it never fails to surprise me.
I’m so slow to get ready in the morning. Today I am going to meet my friend for coffee. Even though I love meeting friends, going out of my comfort zone can cause a certain amount of anxiety. Will I have a seizure? Will my friend catch it? Will the coffee shop be busy? Will there be too much stimulation in the coffeeshop? Will I be able to find a booth to sit in? It’s funny, I never in my wildest dreams thought that seeing friends could bring on so much anxiety. Today I am particularly worried, because I had some seizures last night, and I had trouble falling asleep. Anxiety and seizures during the night paired together can be a bad combination for seizures during the day time.
Anyways, I manage to get out of bed and throw together an outfit: a pair of jeggings with a cute top and a sweater over top and my pair of owl earrings seems to be my standard outfit these days. Sometimes I’ll be more into doing my hair and make up, and some days I’ll go au natural and not care as much. Whatever. Being a natural girl is fun. My mom tells me to hurry up or we’re going to be late. It’s good to see that this condition hasn’t taken away my vanity. I tell her I’m coming. We walk out to her car. Cars. Car rides can be weird. Sometimes the sensation of driving triggers seizures. There’s too much stimulation happening when I’m in a car. But not all the time. That’s the mysterious thing. I remind her to be gentle with those U-turns. I put on my over-sized sunglasses to block out the gleaming sunlight. Who knows what angle it will come at today. My mom pulls out of her parking spot very delicately (which is to be applauded, as we are parked on a hill going up). I feel tired. Maybe I should have had more breakfast. I wish I had slept more.
My mom drops my brother off somewhere and I start to feel nervous again. My mom coaches me through deep breathing exercises as we make our way to the coffee shop. Still my mind has its own agenda: What if there isn’t a comfy chair to sit in? What if there are no more comfy chairs left at the coffee shop and I’m forced to sit in a wooden chair, and what if I have a seizure in one of them? That’s happened before. I’ve almost fallen out of one of them before. It was awful. My mom walks me into the coffee shop and orders my drink for me because thankfully there are two comfy seats free. (Thank god, I think I’ve released ten thousand butterflies that were all fluttering around in my brain). My Mom comes over and hands me my drink (Iced Matcha Green tea latte, I didn’t want anything too hot…I was getting a bit of a headache from all the emotional distress).
“All right, I gotta go” My mom tells me. “Are you gonna be okay?”
“Yup. I’ll be fine.” I tell her. This is the freedom you have been dying for! My mind screams with glee. To be alone in public for at least fifteen minutes or so is amazing! I’m not sure what to do with this excitement, so I listen to a podcast as I wait for my friend. I find that listening to a podcast calms my overactive mind. It eases the anxiety by focusing my attention on silly humour that doesn’t require much brain power, but just enough that I need to pay attention. Thankfully this podcast is hilarious (I’ll put a link for it at the bottom) so it was easy for me to start giggling and I got into it. Before I knew it I saw my friend walk into the coffee shop. I jumped up and gave him a huge hug. The hug dissolved my stress and the stress free me was back!! We sat down and I gave him a very quick run down as to what he should do if I have a seizure when we’re hanging out. “Just be calm, come sit by me, and reassure me that everything’s going to be okay. Even though I’m having involuntary movements, I can still hear you. And if I start to lean to one side, come to that side and prop me up.” I also quickly describe what my seizures look like, so he knows what to look for, and so not to be alarmed if he sees anything unusual.
It was as easy as that. And you know what? All my stressing was for nothing! I had no seizures while we were hanging out! Maybe it was luck, maybe it was because he is a pretty relaxed kind of person, I don’t know. Either way, I was so happy and once I got into our conversation, I didn’t find myself obsessing over whether I was going to have seizures. I was just in the moment. Talking about school, life, relationships. Whatever kinds of things that two friends talk about when they meet up for coffee.
My Mom came to pick me up two hours later, where I was happy to report the good news. She was so happy for me! Between all the happiness I was exhausted, so I needed a low-key evening. Sometimes after a really good and happy day I feel really tired and I am more likely for my moods to go up and down. So I ended up just hanging out, going for a short walk with my mom, meditated for ten minutes(Yay New years goals!), and helped the parents out with the dishes that I had neglected. Then it was time for bed, so I followed my normal bed time routine of brushing teeth, taking my meds, and then watching some Dr. Phil on You Tube.
Today’s experience was a huge relief for me, because although I have gotten used to having seizures in public and in front of friends and strangers, they are a definitely not a highlight of my day. Plus, I just feel so much better physically when I don’t have them. My friends are always very understanding, but sometimes having seizures takes away the ability of being able to relax and live in the moment.
One thing that I know many people with epilepsy struggle with (I know this through being active on an epilepsy forum) is fear. I never really experienced this for 10 years of my diagnosis because my seizures were extremely well controlled. I rarely thought of my epilepsy! Once my seizures got out of control, I thought about having seizures all the time. You can see from one day how much I thought about having seizures. Little things like going for a coffee can be stressful, because as I mentioned, if there were no comfortable chairs, having a seizure in a regular wooden chair could be quite dangerous, because I could fall and really hurt myself. For me, it can be scary to leave the house, go to places with lots of stimulation, (crowded shopping malls, busy restaurants, buses during rush hour) because I just don’t know how my brain is going to react. At the same time, I love to get out of the house, see my friends, and do things with my family. So it’s all about finding that happy balance.
This is just a snapshot of what it’s like to live with seizures. It’s not like this for me everyday, nor does it speak to the experiences of every person living with epilepsy. I hope it gave you some insight as to what it’s like to live with this chronic condition, and how the smallest of tasks can become the biggest of triumphs. Love to you all. xox
Oh: and here’s a link to the podcast I listen to: http://redbarradio.net/ I usually get the podcasts for free (they’re free from this site too) from itunes. CHECK IT OUT!!!