You know, sometimes life throws curveballs. You think everything will go according to plan, but then, surprise, it doesn’t. And honestly, I’ve made peace with that a long time ago. There are days when I just think, why even bother planning? Let’s just see what happens.
It’s tough to accept things you don’t want, but what can you do when you don’t have a choice? You accept it, adapt, and figure out how to make your life a little easier. You learn to work with what you’ve got, even if it's not what you originally asked for.
At first, I thought I had completely accepted how my body works. I really believed that. But, looking back, I hadn’t. I pushed all the fears and problems to the back of my mind and just hoped for the best. Sure, there was always a little voice in my head saying, "hey, maybe you should slow down and adjust to your illness," but I wanted to prove that I could beat it, that it was only temporary. Unfortunately, after years of trying, I had to accept that this is my reality. Nothing else is possible, but that’s okay. I still had hope that maybe, just maybe, the epilepsy would go away.But..it didn’t. Now, my goal is just to prevent the attacks as much as possible, but even that has gotten tricky lately.
There are days when I just wake up, and boom...I’m already in the middle of an attack. It happens so fast that my husband doesn’t even have time to react with the medication that might stop it. It used to be different. I used to feel it coming and could say, “hey, something’s off.” Now? Not so much. But hey, we haven’t given up! We’re optimistic that things will improve and maybe, one day, I’ll sense the big seizures (grand mal) coming again. For now, though, the smaller ones (petit mal) are a whole different game.
Out of nowhere, I’ll get these weird sensations, like déjà vu, memories that don’t feel like mine, and a sensation that I’m not quite me anymore. Suddenly, I’m just staring off into space, numb, unable to move or speak. When I finally start to come around, I still can’t communicate. My husband even created a special sentence for me to say when this happens. It's his way of checking if I’m fully aware. Funny thing? I understand the sentence, I want to say it, but my brain just doesn't cooperate! It’s frustrating, but it happens so often now that it’s become kind of "normal."
One time, before a trip to Croatia, I’d been working really hard for three days straight. It was exhausting, but I didn’t feel stressed—at least, not mentally. My body, however, had other plans. Just as I started to relax before the end of my shift, boom, another seizure. My coworkers found me staring blankly, and the next thing I knew, they were all gathered around me. I wanted to ask what happened, but surprise, I couldn’t get the words out. Turns out, I’d been out of it for a whole minute, and I didn’t even know it.
It’s funny, in a way. When I’m pumped full of adrenaline and positive stress, my epilepsy calms down. But if I want to keep my Crohn’s disease under control, I need to avoid stress. See the problem here? Two illnesses with completely opposite needs. It’s like my body is running a comedy show that I didn’t sign up for! 😉
I’ve tried everything, from therapy, no alcohol, no smoking, to staying active...you name it. Yet, the petit mal attacks still happen. I hope that they won’t, but they do. When they hit, I’m totally drained, and my day is pretty much over. The only thing left to do is sleep. I’ve even been advised to take an afternoon nap regularly, but let’s be real, who has time for that?
Despite all the advice, nothing has worked so far to stop the attacks, but I’ve learned to roll with it. You know, here’s the thing, life happens, even if your health isn’t cooperating. When it does, pick yourself up, laugh about it, maybe even get a little frustrated, but then move on. If I constantly think on how I could have done things differently, I’ll never fully enjoy life.
Just...always hope for the best. Life is too short to spend it worrying. I’m lucky enough to have amazing people around me who know exactly how to help when things get tough, and that’s something to appreciate every single day.
So here’s my advice... if life gives you detours, take a deep breath, put on your favorite playlist, and dance through the chaos. You might hit your pinky toe, but hey, you’ll do it in style! 😉
“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.”- Unknown
With love, @tinabrezpike❤️
