November is here. The days are colder, and it’s also Epilepsy Awareness Month. The color for it is violet. I’m not a huge fan of violet myself, but this month is a reminder for everyone to learn about epilepsy and understand what it’s like to live with this condition.
My own story with epilepsy began on what was supposed to be one of the happiest days of my life. It was New Year’s Day, and just hours after my husband proposed, I had my first seizure. I woke up in the hospital two days later with a letter from him by my side. The letter explained everything that had happened, and that we were now engaged. I couldn’t believe it, and I felt so sad because I had no memory of such a special moment. Those two days are still blank for me. At first, the doctors didn’t know if it was just one isolated seizure or if it was truly epilepsy. They told me to wait, and if it happened again, they’d run more tests and start treatment.
A few months later, I had another seizure, and this time they confirmed it: I had epilepsy. But back then, I didn't think much of it. I already had Crohn’s disease, which took up so much of my focus and energy. Epilepsy seemed less important. But then the seizures started happening more often, and I realized I needed to take it seriously.
Over time, I noticed some friends drifting away. Seeing my seizures made them uncomfortable, or maybe they just didn’t know how to handle it. I won’t say it was all because of epilepsy, but it felt like life was showing me who my true friends were, those who would stay by my side through anything. I started to shape my life around both diseases, finding ways to manage and live as best I could. Balancing both is difficult; Crohn’s disease needs me to stay calm, but epilepsy benefits from a bit of stress to keep it in check. It’s hard to balance that. But I’m learning, doing my best to stay steady in this journey.
This year, I finally understand why awareness months are important. I used to ignore them, but now I see they’re a chance to help others understand what this condition is like and how to help when someone has a seizure. I’ve been fortunate to have my husband by my side; he’s always known what to do, even when I couldn’t answer his messages. He just knew to come home. I truly have the best partner. But I worry about what could happen if I have a seizure and no one around me knows how to help. So, I want to share this advice with you. It might save a life one day.
Epilepsy is a brain condition that causes sudden seizures. About 50 million people around the world have it. When someone has a seizure, their body might shake, or they might seem to lose control. It can be frightening, but here’s how you can help:
Stay Calm. It’s important not to panic.
Keep Them Safe. Move objects away so they don’t get hurt.
Don’t Hold Them Down. Let the seizure pass naturally.
Place Them on Their Side after the seizure stops to help them breathe.
Time the Seizure. If it lasts over 5 minutes, call an ambulance.
Epilepsy isn’t something to fear, and people with epilepsy can live full, happy lives with the right support.
This November, let’s remember that we all have the power to help someone in need. If you see someone having a seizure, don’t walk away. Stay, follow these steps, and be someone who cares.
“Epilepsy can, in some circumstances, be enabling - not just disabling - through the stimulation and enhancement of artistic expression”. - Jim Chambliss
With love, @tinabrezpike ❤️
Friends are not friends when they drift away because you have an illness. Sure, maybe they didn't know how to handle the situation, but they could always ask. If you didn't want friends to stick around because of your illness then that's your decision and it should be respected, but not the other way round ....
I asked them if the reason they don’t call anymore is because of my epilepsy, but apparently it’s because they have kids now and don’t have time for other people. Interesting, because I have another friend with three kids who calls, visits, and even manages this as a single mom. So, I told my maid of honor that if their kids are the reason for not calling, I can always come visit instead. But whenever I call, there’s no answer. I decided that it must be the way it is, and I won’t keep investing my emotions in someone who isn’t comfortable around me or concerned about what I’m going through.Now I understand, and I have my own circle of friends who I love, who love me, and are always ready to help,and that’s what’s important. Thank you for stopping by.
These so called friends are just so freaking unbelievable! Exactly like what cladaghdowning experienced here
https://peakd.com/health/@clodaghdowning/cancer-ghosting
Anyway, all you need is a circle of quality friends who are there for you and not many who run away all the time. Take care
I read an article about this amazing fighter, and everything she wrote is true. Incurable diseases make people scared, and they would rather go away than stay and offer support. But that’s life, I understand that now. Thank you for your support!
Gracias por compartir tu historia, efectivamente hay mucho desconocimiento sobre esta enfermedad, hace unos meses mientras daba una clase una alumna sufrió convulsiones, gracias a una fiel amiga supo manejar la situación, los demás nos asustamos muchísimo
I translated what you wrote (I'm still not very good at Spanish), and yes, that's why we need to tell people how to react if they see someone having a seizure. With the right response, we can save a life. Thanks for stopping by!
Awwwwww aren't you one brave bear😘
I know it must have hurt a lot not remembering your proposal but what matters is having a loving and understanding partner in your little corner and doing life with.
Thanks for putting your story out here as I learnt a lot about Epilepsy from your post.
Sending you so much love from this part of the world, you are AMAZINGGGGG😊😊
I still joke that maybe I actually said no, but because I couldn’t remember, he told me I said yes. 😂 Staying strong means the most—not dwelling on my past and pain. It doesn’t help… we just need to accept it and live with it. Life has taught me a lot. Girl, thanks for stopping by and for your supportive words—you’re the best! ❤️ If you ever visit my part of country, than we definitely need to meet! ☺️
Ohhh yes and that's the spirit and we all are rooting for you😃😃
Awwww thank you so much and it would be such an honor to hang out with a multifaceted and brave lady like you🥰🥰
Even though we are miles and miles apart one day it just might happen, fingers crossed😃
Thank you, girl! ;) You never know what the future holds. I love traveling, and it’s definitely time for me to fly somewhere far, far away, beyond just Europe. :) Sending love and hugs from me!