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.
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.
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.
I never knew what life would be like after raising babies. I mean, I’d been raising babies since I was technically a kid. And according to my mom I didn’t help her with my siblings, but my siblings said otherwise in a conversation the other day and I won’t call my mom out again! (wink wink) Even if you’re the oldest, you’re considered a parent to your siblings. Or so social media leads you to believe. We always believe the internet. Now we’re off topic. I’ve been writing, but it’s been more private and I thought how unfair it was that I was leaving every single four people that read my blog in the dark about my wild life! So thank you and maybe I’ll work on coming back.
My youngest is 4.5 and I sure am feeling the baby blues. It’s a really odd feeling because I’ve always known when I would be done having kids, but now watching my three boys grow up, which is amazing in itself, has just been astonishing. Where did the time go? We’re in the summer of 2021 and I now have a third grader and holy cow a sixth grader. He’s literally right at my height and I refuse to admit it to him. With the kids growing like weeds and knowing how to wipe their own asses, I realized that it was time I started to buckle in and grow up too. Like look for something more. Because obviously the mom thing, DIY lady, bookkeeper, administrative assistant & fabric representative isn’t enough.
Do you ever feel like you aren’t doing enough even though you’re literally spread too thin? That’s me. So in 2018 when I started getting sick, everyone told me to slow down. I’ve tried and I’ve tried, but it’s just so difficult and I’ve found myself in the same place. The only difference is now my body just literally will shut down and I’ll fall asleep on the couch in the middle of the afternoon and miss things. Oh the battles I lose. I don’t think I had a real point of this, just a hey y’all I’m back. I’m working really hard on me, the family & trying to force myself to keep the classes in check and grow my adult life a little bit.
Ugh. On another note, the other day I was told by a former classmate how they were celebrating their ten year class reunion and it pretty much sucked because homeschooling and graduating a year early left me without friends, a prom and all of the “fun” things that I’m now missing out on. Please tell me I’m not missing out on anything and all the cool kids aren’t cool anymore.