I’ve been thinking. I’ve been thinking quite a lot. I feel like I’ve been going through a lot of changes this week. Positive changes though! I am finally starting to feel well enough to get out of bed and have a to-do list of things to do, and easily get them accomplished. This is so huge for me. I have always been a ‘to-do’ list kind of person, you know, with a neat little box for the check mark beside the task, just waiting for the accomplishment. So to be able to tick off five to six things in a day (without any assistance from someone else) makes me feel really good about myself.
It feels so good to have my zest for life back. Not even that, but my life doesn’t revolve around the worry of when my next seizure is going to be. On Tuesday morning I woke up in a panic, because I was seizing. I didn’t know what was happening. (I was conscious, and I was seizing periodically through the night, and into the morning.) My door was closed, so I knew my parents wouldn’t be able to hear me if I yelled, and I was too afraid to get out of bed. I called my boyfriend, who was at work. I could tell he was surprised that I called, but stepped out of his office to calm me down.
“I just don’t understand” I said. “I thought my seizures were going to start up in a few days, not today”. (Remember, my seizures are cyclical)“It’s okay, love”. My boyfriend consoled me. “We don’t know why they’re happening, but you’re okay. Everything’s going to be okay”. He was right. We hung up, and I spent the day in bed.
Even thought that day was a write off, something hit me. I had been spending so much time spending time with my friends, hanging out with my family, writing, listening to podcasts, and the other things that I do, that I wasn’t caught up in counting how many seizure free days I was at. This was a major breakthrough for me, as my thoughts have been orbiting around seizures or the possibility of having a seizure, non stop. The fact that I just got caught up in life and enjoying myself, and woke up in a panic because I forgot about how many ‘seizure free days’ I was at, was in a rather strange way, major progress. Since my seizures are cyclical, usually 10 days no seizures and then 4 days of seizures (although the seizure days are decreasing…but that’s another blog post) it helps to keep track of how many seizure free days I’m at. That way I can make plans around the seizures. I mean, I don’t want to go shopping when I know I’m going to be having seizures! Bad idea! But I guess I just lost track of those days, which is truly phenomenal. I feel like I have literally smashed through a glass wall, super hero style.
I am also really pleased to say that I sat in a regular wooden chair when I went to have coffee not once, but twice! I cannot stress this enough but I am so proud of myself! I was anxious the first time I did it, I was so nervous that my leg was literally shaking! The second time I did it I was just a regular person having coffee in a coffee shop. It was no big deal!
I have more big news…I am committing to going to an Epilepsy Support Group in my area that meets once a month. I am anxious about doing it because I’ve only gone to one Epilepsy Support Group meeting once before and it was in a different city. I have no idea what this one will be like, but I expect that I will be super quiet and shy at my first meeting (not at all my natural self). I’ve decided to do this though because I think it will be beneficial to connect with other people in my area who have epilepsy, and hey, maybe I will make some friends! There’s no harm in that!
I have also signed myself up for a free six week long workshop that’s about learning to manage chronic medical conditions. So, for once a week, I’ll meet with a bunch of other people and a couple of facillitators for two and a half hours and learn how to manage my chronic medical condition. Hopefully it will be useful! I’m at the stage where I can actually see some positive changes beginning to occur, so I’m just trying to roll with it, and continue to make awesome positive change.
So I guess you could say that I feel like I have a little bit of my life back. I feel balanced. I’m still addressing the issue of Ep, but it doesn’t consume me. Even though waking up in a panic was terrifying, it was like getting a bolt of lightning to a lifestyle that I want. I feel like I’m living in less of hypotheticals, and more of the real picture. I am learning better how to deal with the seizures when I do have them, but when I don’t, I’m just enjoying every moment. As my good friend would say, I’m just learning to ride the wave. Love you all! xox