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  • Mental health

    How to Protect Your Mental Health While Living with Epilepsy

    February 15, 2020 / No Comments

    What Is Mental Health? Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate…

    By Tiffany Kairos
  • Don’t Feel Sorry For Me Because I Have Epilepsy

    February 7, 2020 / 2 Comments

    It’s never easy when someone that you know or someone that you love has just been diagnosed with a chronic illness. What can you say to show that you care…

    By Tiffany Kairos
  • How I Practice Self-Renewal While Living With Epilepsy

    February 3, 2020 / No Comments

    What is self-renewal? In reflecting on this, it’s looking at life anew, or maybe even sewing the seeds of things that you’ve been meaning to do for a while. Self-renewal…

    By Tiffany Kairos
  • What Epilepsy Reminds Me

    January 29, 2020 / 3 Comments

    Over a decade. It has been a long journey and within this journey, I have learned so much, experienced so much, wrestled so many emotions, have had the opportunity to…

    By Tiffany Kairos
  • 6 Ugly Sides of Epilepsy Most People Don’t Like Talking About

    January 7, 2020 / 5 Comments

    It’s no secret that having a chronic illness sucks. There are sides to having epilepsy that are ugly or not well studied, and many people don’t know about them at…

    By Tiffany Kairos
  • Survival kit

    8 Essentials In My Epilepsy Survival Kit

    December 12, 2019 / No Comments

    Living with epilepsy can be taxing not only on the body but also the mind and spirit. Finding the right things to make the journey less rigorous is therapeutic. What…

    By Tiffany Kairos
  • Memory

    5 Ways I Improve My Memory While Living With Epilepsy

    October 8, 2019 / 2 Comments

    “Memory loss is like system reboot.” Memory hindrances. A topic that I’ve discussed lightly over the course of my journey with epilepsy. Is it a mere coincidence or has my…

    By Tiffany Kairos
  • Intimacy

    Breaking the Ice on Intimacy and Epilepsy

    September 25, 2019 / 2 Comments

    Yep, I’m going there. That awkward, not-often talked about subject coupled with epilepsy. When epilepsy and seizures decide to kill the mood for intimacy in a relationship. Sometimes we might…

    By Tiffany Kairos
  • Road

    The Road Doesn’t End Here

    September 18, 2019 / 1 Comment

    One of the most difficult challenges since my diagnosis with epilepsy is finding reliable means of transportation. Sure. I have my husband and members of family who extend their willingness…

    By Tiffany Kairos
  • Caregiver and spouse

    Secondary Epilepsy

    August 31, 2019 / 5 Comments

    “Because I love you, because I care for you, because I know what you endure… you will never endure alone.” – Chris Kairos December 11, 2008, what seemed like a…

    By Tiffany Kairos
  • Summertime

    How to Beat the Heat Living with Epilepsy

    August 6, 2019 / No Comments

    “‘Cause a little bit of summer is what the whole year is all about.” – John Mayer What do you think of when you hear the word “summer”? Vacation, flip-flops,…

    By Tiffany Kairos
  • Woman thinking

    What NOT To Do When Living With Epilepsy

    May 28, 2019 / 4 Comments

    Living with epilepsy, I often reflect on new and different ways to embrace the reality of my condition. Over the course of a decade, I’ve pursued and pocketed different suggestions…

    By Tiffany Kairos
  • Group of people walking

    Life With Epilepsy In Public

    April 7, 2019 / 3 Comments

    “Do you know where you are?” “Can you tell me who the President is?”   These are examples of questions I have been asked when I find myself uncomfortably lying…

    By Tiffany Kairos
  • Woman hugging herself

    How To Love Yourself Despite Epilepsy

    March 1, 2019 / 2 Comments

    When epilepsy enters into your life, it can take a massive shot at your self-esteem. You’re not able to do certain things you once could do, you’ve got to rely…

    By Tiffany Kairos
  • Woman holding coffee mug

    5 Things That Help Me During A Seizure Setback

    January 30, 2019 / 2 Comments

    In the over ten years that I have lived with epilepsy and experienced seizures, I can’t tell you just how many seizures have pained me, drained me, and unplugged me…

    By Tiffany Kairos
  • Menstrual cycle

    Epilepsy & That Time Of The Month

    September 16, 2018 / 6 Comments

    Yep. I’m going there. That awkward, not-often talked about subject coupled with epilepsy. First thing’s first. That time of the month sucks. An unwelcome guest that barges in and makes…

    By Tiffany Kairos
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About Me

Tiffany Kairos

Hi there! I'm an epilepsy patient advocate, blogger, content creator and the founder of The Epilepsy Network (TEN). Within this blog I talk about my experience with epilepsy, also providing tips, encouragement and motivation to live your best life while navigating epilepsy.

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Instagram

You are making it very hard to be a happy tree!! 🌲

Though we may not have the same illness we can agree that the symptoms attached to a chronic illness can be rough. 

It can disrupt our daily activities and routines. Push buttons and cause us to get upset. 

I never know what to expect when it comes with my epilepsy. The illness is so elusive. I endure everything from brain fog to anxiety, bouts of nausea to migraines.

Self-talk and leaning on my support system (family and awesome online community…YOU!) is so therapeutic. 💛

Spoonie Warriors what symptoms do you experience with your illness? 

What helps you through the rough stuff?

You can count on me to always be in your corner cheering you on and supporting you! 🧡

Tag/share with a fellow spoonie who might relate and save it for yourself! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyTalksEpilepsy#chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Loud and proud warriors! 🗣 Speaking about chro Loud and proud warriors! 🗣

Speaking about chronic illness online isn’t about racking up as many likes and follows as possible. It isn’t about becoming a social media star.

When we speak about chronic illness online, we are given the opportunity to connect with people in every corner of the globe. To raise awareness and support for patients and caregivers. 

I speak about epilepsy because I am just one of over 65 million people globally living with it and anyone at any time can be diagnosed. Stigma is still strongly attached to epilepsy, people are still being horribly mistreated and treatments are desperately needed in certain places. 

I stand with the epilepsy community. I am in your corner. I see you, I hear you and I love you! 💛

Tell me what chronic illness you speak about and why. Let’s chat!! 🫶🏻🤍
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness #TiffanyTalksEpilepsy
Lemons into lemonade! 🍋 I didn’t know that I Lemons into lemonade! 🍋

I didn’t know that I had a purpose…a calling after my diagnosis. As far as I was concerned, my life was over. 

Dreams dashed and turned into ash. 

I never imagined I’d be where I am today but wow I am both amazed and ever so grateful. 

Warriors, yes. Receiving a chronic illness diagnosis is life-changing. But in such a way that it can reveal the path you were meant to take. The person you will grow to be. It won’t be easy but if you stick it out and lean on the support around you (this community right here is brilliant!) you will see. 

Advocacy is not only something I’m passionate about but mission-driven. Raising awareness and helping others better understand this condition empowers me. 

YOU empower me my warriors. Your courage and strength to overcome challenges is beyond inspiring. 💛

Shown in the video is NOT coffee since I can’t drink coffee, ha! Caffeine is a seizure trigger of mine so instead I drink tea. If you’re a tea drinker you’ve really got to check out this tea - @tazo Passion.

I also love this cup because of the messages printed. They’re powerful reminders as I go about my work: “Good things take time” and to “Believe”.

Also, I’m always working away on my blog! I absolutely love crafting articles to help you navigate life with epilepsy or any chronic illness so you can have a more productive life!

This is a peek into my advocacy world. Tell me something about your world! 🤍
 
Tag/share with a fellow spoonie and save it for yourself! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyTalksEpilepsy#chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Can’t stop. Won’t stop! 😉 Epilepsy has ast Can’t stop. Won’t stop! 😉

Epilepsy has astonishingly been one of the biggest pains in the tukkus and turning points of my life.

I’ve endured more than I ever thought I could and grown in so many ways.

Tell me if you feel the same!! 💛

Whether talking, writing or creating content, hitting the breaks is not an option. So long as epilepsy exists, I as an advocate exist. I will not be silenced!

Chronic illness warriors, If anyone ever asks if you will ever stop talking about your condition, tell them:

THERE.IS.NO.WAAAAAY! ❤️‍🔥

Tag/share with a fellow spoonie who needs to see this and save it for yourself! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyTalksEpilepsy#chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
After being diagnosed with epilepsy, I’d had a f After being diagnosed with epilepsy, I’d had a few people ask me “What are you gonna do now?!”…. 

I think that’s a question we even ask ourselves after we’ve been diagnosed. “What the heck are we going to do now?!”

We have to plan our futures a bit more strategically than those who don’t have a chronic illness. 

But to answer that question, what we need to do, what we must do is continue on and live a healthy and productive life.

A chronic illness doesn’t stop us from setting and achieving goals and dreams. Only we can stop ourselves with fear and doubt. Dump that. 

We are not helpless or hopeless. We are individuals that have been given a challenge but we don’t let it get in the way of living a life that is both satisfying and productive. 

What is one accomplishment you are super proud of despite your chronic illness? Tell me about it!

Let’s chat!! 🫶🏻💗
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness #TiffanyTalksEpilepsy
My epilepsy warriors can relate!! 🥴 There’s My epilepsy warriors can relate!! 🥴

There’s nothing like essentially being given a pop quiz directly after a seizure by some. 

Asked questions such as: 

⋒ Who’s the President?
⋒ What day is it?
⋒ What month is it?

Our mind has just gone through a trauma and we need a few moments to get our bearings before we can start answering questions. 

What is super helpful for me after a seizure is just having someone with me as I regain focus and clarity. No words need to be spoken. Just simple presence let’s me know that I matter and I am going to be okay. There’s no worry or pressure to do anything. I can rest easy. 💛

Have you had the experience of being flooded with questions after a seizure? Tell me about your experience and what is super helpful for you after a seizure! 

Post in the comment box. Let’s chat!

Tag and share with someone who might relate and save this for yourself! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyTalksEpilepsy#chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
This is just a bad dream..🥴 Did you feel that This is just a bad dream..🥴

Did you feel that way when the doctor told you that you had your chronic illness? 

When I was diagnosed with epilepsy, I was at a complete loss of how I was going to move forward in life with a condition that I had no control over and would be with me for the foreseeable future. 

I felt like there was no way I could do this. I couldn’t handle the heavy load placed on my back. 

If you’re reading this and have just been diagnosed, I want you know that I GET IT. I understand those feelings swirling inside. All of us in the chronic illness community do! You aren’t alone! 

Similar to losing something or someone dear to us, we go through a grieving process because we’ve just said goodbye to the life we once had before chronic illness. We wade through it and come out the other. 

I’ve had many people say “You’re so strong! How do you do it?” The answer is clear and we can all agree. 

Because THERE’S NO OTHER CHOICE. 🔥

Have you been told this? Tell me about your experience! Let’s chat!

Tag/share with a fellow spoonie who might relate and save it for yourself! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyTalksEpilepsy#chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Anyone else agree?! Leave a comment if you do, it’s super encouraging to meet others who ‘get it’ and we can support one another on this wild ride! 😵‍💫

Most who don’t have a chronic illness only know half the story. 

It’s not solely a seizure or flare up that we experience. It’s not just popping pills and and waiting for the illness to go away.

I have epilepsy and every day is a test and a guessing game. It tests my mental and emotional limit and I can never guess if I’ll have a seizure….if so, how many and which type? I have two different types. Complex Partial and Tonic Clonic. 

Sometimes it’s annoying, frustrating and exhausting. But I keep going because “QUIT” is not an option for me. I refuse. 

Taking the time to LISTEN… and making a conscious effort to LEARN more about our illness, matters so much to us. You see ALL of us. Not simply HALF. 

What are your thoughts on this? Do you feel like you’re not being seen completely? Share in the comments and let’s chat! 

Tag/share a fellow spoonie who might relate and save it for yourself! 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #invisibleillness #chronicillness #chronicillnesscommunity #spooniesisterhood #spooniesupport #spooniefamily #chronicillnesscommunity #spooniestrong #spoonies #raiseawarenessofepilepsy #epilepsycommunity #epilepsywarrior #endepilepsy #seizureawareness #1in26 #cureepilepsy #purplestrong #spooniestrong #furtherawareness #TiffanyTalksEpilepsy
Humor can be a great coping method when you live w Humor can be a great coping method when you live with chronic illness.

It can shatter looming stigmas, uncomfortable feelings when around others and build your confidence about having the condition. 

Of course knowing when and with who to joke about is ideal. There are people who will zoom in and joke WITH you and not AT you. Then we have those who may just get a little uneasy at the things we share. 😹

If you know me, you know that I joke (appropriately) about my own epilepsy when I’m around people. Plus, with my epilepsy warriors? Oh, you betcha! It helps others realize that yeah having a chronic illness sucks but we can still have a laugh and not to ever feel ashamed because of it! 😉

When smaller seizure symptoms surface 
⋒ Head pressure
⋒ Nausea
⋒ Vision changes
⋒ Odd smells

I sometimes like to joke in saying “I didn’t invite you. Go. Be gone! Ugh. Party crashers, I tell ya… 🙄” 

In the earlier years of my life with epilepsy, family would be apprehensive of stumbling upon me mid-seizure and to comfort/ease their fears I explained seizure first aid and jokingly saying “Should I ever have a seizure, I’ll be back in about 30 seconds to a minute. My brain has to throw a hissy fit.” 😵‍💫

It took time and countless amounts of replying to “Are you ok?!” But eventually they understood that epilepsy would not get the best of me. 

I do have those situations where someone will be appalled…”I’m so surprised you can joke about something like this!!”

You can win ‘em all! 😹

What are times you’ve used humor to talk about your chronic illness? Did it turn out well or disastrous? 🙊😹
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #epilepsycommunity #epilepsywarrior #epilepsyfighter #endepilepsy #seizureawareness #1in26 #cureepilepsy #patientslikeme #patientleader #patientadvocate #chronicillnesscommunity #invisibleillnessawareness #invisibleillnesswarrior #TiffanyEpilepsyEpilepsy #chronicillnessawareness #spooniesupport #spooniesisterhood #spooniewarrior #spooniecommunity #spooniestrong #purplestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
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Disclaimer

This blog is not here to replace medical advice from trained professionals.

Please seek medical advice.

This blog serves to offer my personal experience with epilepsy, what has worked for me, encouragement and support.

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