I’m writing this on my bed the day before. The day before I should be celebrating three full years. Instead, it’s just another old date I’ll forget and now get to start my process all over.
I’ve been able to celebrate being seizure free for only two months now. Realizing that sucks. It’s like when you’ve worked on something for so long and worked so hard to get to that point, only for it to get shut down.
When you think about it, it’s not just me. It’s any person. The only difference between me and a regular joe, is when my body decides it’s ready to shut down, it major resets in my brain. (Ha insert awkward laugh) Let’s say that you’ve been killing it all week, kids and pets taken care of, house cleaned up, dinner and of course keeping up with work, so you decide to have a rest. Well, I don’t. I keep going and going like the Energizer Bunny. Then right when I think I can keep going, boom, brain shuts down to stop me from doing more.
I’ve attempted to jump right back in after an episode, but I ended up in worse shape. Look at me, just love to learn the hard way. So now, once it’s over, I get to take 3-5 business days to rest and feel better.
I don’t think there is an exact feeling I haven’t felt since my last episode. I’ve drowned the pain in loud music and as much busy work as I can handle. Hell, maybe more than I can handle. But I just keep going. That’s how it goes, you keep going until you don’t have any more in you. At least that’s the pattern I follow.
I’ve been told I do too much. I’ve been told that I need to rest. My nights have become restless, and my mind continues to wander. Don’t forget this. Did you make sure to do that? It becomes never ending. I don’t really know what it’s like to fully rest. Is it something you learn? Ha. I will say, it’s been added to my bucket list of things I’d like to make happen this year.
On to the next phase of testing 🤞🏼
But back to the main focus of writing tonight. I was forced into tests on tests of my brain. It’s mainly to show the world what a genius’s brain looks like. (insert corny laugh) I actually had to take one to ensure that I didn’t have any abnormal growths, which I don’t. For that, I’m grateful. I have to make sure to continuously remind myself of that. Not that I don’t believe it, but I actually am. I’m grateful to still have my boys, my job and my ability to drive myself around. I know that at any moment it could be taken from me. Or vice versa.
The second test, an EEG, it wasn’t as pleasant. It’s why I felt the need to talk. It’s why I started to panic and think that something really is wrong with me. I got to lay down while a lady put wires and glue all over my head. I have excellent test skills. But my EEG said otherwise. It’s showing that maybe my wavelengths aren’t as strong as they should be. Maybe the medication I’ve been on for the past three years has been a waste. A waste of time and money. A waste of trial and error that could’ve been used on some other options.
Getting this glue out of hair is the WORST.
I called my mom. I needed her. No matter how low I am, it’s something about her that reminds me of peace. It took her reexplaining that the medication I’m currently on is to control my seizures, it cannot fix my actual brain wave lengths. I will always have to live with epilepsy. Fudgeeescicle. I never ever wanted to believe that it was something I’d long term, forever and ever live with. A part of me still doesn’t want to believe it. I feel like maybe I’d be able to continue my semi healthy lifestyle and keep trudging along.
So what are my next moves?
I get to take another test in five weeks. I get to go to the neurologist and fight her on the medication she feels I need. I get to try other methods of relief that people may or may not feel a certain way about. Legally. I get to keep moving at this fast pace because it’s the only way for me to not go crazy. But most importantly, I get to spend the next seventy days with my boys and enjoying our summer together. Now that’s the best and most grateful feeling I can have right now.
We just don’t know what the otherwise outcome would be.
The exciting moment is coming close, six months from having my last seizure. February 7th. Every time I’ve had an episode (as I call my seizures), I keep that moment in my brain. I mainly do it to help keep my memory stable. The unfortunate part, I don’t feel excited about the six month mark.
I don’t feel like it’s been six months because I still have the dreaded feeling, the feeling that I’m worn out and exhausted. The feeling of my body not being able to move. I don’t know what it’s like when I actually have an episode. I don’t have a warning sign when I’m going to have one, it just happens. I’ve been lucky that every time I’ve had one, someone close to me has been around or near to help me. But when I come back from the episode, I don’t even know what happened.
When I was diagnosed, the neurologist gave me a list of triggers that could help me from having an episode. As a mom, I looked at the list and chuckled. Oh less stress and more sleep? Probably not. No alcohol or strobes of lights? Welp, how will I adult without alcohol and an occasional movie? Not enough hydration. Check, check, check. I literally was a walking list of triggers. I did everything I was not supposed to do. And it caught up to me.
Now, they couldn’t give me a reason as to how I became an epileptic. But here’s a list and I can’t do these things I’ve been doing most of my adult life. As I started making changes, I started feeling so much better. I was losing weight, taking my meds, checking out hobbies and I was finally feeling like things were going to be “normal” again. But it’s been short lived. Luckily, I haven’t had an episode, but the lagging feeling of stress and overhaul always comes back.
There has to be a balance. This can’t be how life is forever. There has to be a better way. I just have to find it.
ForTheLoveOfASunset 