When life takes a detour - embrace, adapt, and keep going

in GEMS2 months ago

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.

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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.

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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! 😉

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“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❤️

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I am so happy to have read your reflection today, and it becomes quite a life lesson to see that your illness does not help you live your days normally. Accept and move on... It seems easy to say, but only those who have reached a certain level of awareness can make it happen.

I congratulate you for your courage in the face of life, I would like nothing more than for this to be erased from your body, although we don't know each other, it doesn't matter, but reading your strengthened words, knowing that you are accompanied by a great man and that the people around you already know what to do in your most serious cases is a gain for you, it is not perfect, but it is beautiful...

I don't know if it helps to take a nap in the afternoons, I wish you could try it, and avoid stress, wow, that seems like a joke, but you are strong despite what happens to you, so keep going and keep enjoying every day to the fullest. Sending you a hug Tina!.


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Oh wow, you wrote some really powerful words. Thank you so much for understanding what some of us are going through. And yeah, no matter what life throws at you, you always have two choices, accept it and make the best of it, or refuse to accept it and let it drag you down. I won’t lie, there are days when I wonder how I’ll get through all the troubles, but I remind myself to find the good in it. For me, it means I have a lot to write about! 😊 Really, thank you so much for your beautiful words. Having someone who reads this means a lot.

Thanks to you for writing about your life, because it really made me reflect on mine. Your words have come at a crucial time for me and have inspired me. Bad days are always there, but only the really strong ones get up ❤️

You’re right! That’s why I’m writing about my health, maybe someone out there finds himself in my writing ☺️

Your resilience and humor in the face of such challenges are truly admirable. The way you describe balancing two conditions with opposing needs, all while maintaining a positive outlook, is both eye-opening and motivating.
Your story reminds me that while we can't always control what life throws our way, we can control how we respond

Thank u… Yeah, there are always two options, and it's your decision which one you choose, be sad and have nothing, or be positive and find a way to move on with life.

We all have our own battles, but you are brave and have the right company to face those demons. Just stay positive.

Thank you for this post!

Thank u so much…It means a lot having so much support from you guys ☺️

Hi dear what's your nickname in telegram?

Hmmm…I don’t know 😂😂 I think Tina Mar? 😂 I’m not sure…😂

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hvala hvala, sem že boljše. Mora biti malo drame, drugače življenje ni zanimivo ;)

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