Rise Above Epilepsy

  • Home
  • About Me
  • Epilepsy
  • Media
  • Contact
  • Home
  • About Me
  • Epilepsy
  • Media
  • Contact
  • Shoes on the road

    Setting Boundaries with Epilepsy – What You Need to Know

    March 5, 2021 / No Comments

    Living with a chronic illness means learning to get comfortable setting boundaries and saying “no”. My epilepsy diagnosis required placing certain actions and activities on the back burner to avoid…

    By Tiffany Kairos
  • Husband and wife

    5 Things to Remember When Being a Spouse with Epilepsy

    February 5, 2021 / 3 Comments

    I’m nowhere near the perfect wife, but I do know that marriage with a chronic illness is challenging, and takes intentional effort. The Epilepsy Condition Living with epilepsy and learning…

    By Tiffany Kairos
  • Open book

    8 Qualities You Can Find in Someone Living with Epilepsy

    December 30, 2020 / 1 Comment

    Often, I reflect back on times that I would tell others that they would never understand what I was going through because they were not living with my epilepsy. Many…

    By Tiffany Kairos
  • Speech bubble

    6 People You Meet Along Your Journey with Epilepsy

    December 8, 2020 / No Comments

    You’ve been diagnosed with epilepsy. A life-changing experience. Epilepsy doesn’t always show its cards and it can go unnoticed by family, friends and the public. With epilepsy being a part…

    By Tiffany Kairos
  • Gifts

    The Ultimate Gift Guide – Gift Ideas for Someone with Epilepsy

    November 20, 2020 / No Comments

    Epilepsy is hard to explain, let alone understand. It can be a real head scratcher to come up with an ideal gift for someone living with epilepsy, especially if you…

    By Tiffany Kairos
  • Woman with red hair

    Things to Never Do When Someone Tells You They Have Epilepsy

    November 6, 2020 / 1 Comment

    I remember the very first time that someone spoke the words, “Everything will be okay!” speaking about my epilepsy. Fire engulfed my stomach. When a family member spoke this to…

    By Tiffany Kairos
  • How I Exercise While Living with Epilepsy | Plus What You Need to Know Before Hitting the Gym

    September 30, 2020 / No Comments

    This is a topic that many people have reached out to me in regards to and as someone who avidly takes part in exercise, I find it beneficial and very…

    By Tiffany Kairos
  • brain fog

    Understanding Brain Fog And Epilepsy

    August 31, 2020 / 3 Comments

    Speaking candidly, alongside seizures, brain fog is one of the most difficult – and sometimes exhausting – parts of living with epilepsy. What does brain fog feel like? Brain fog…

    By Tiffany Kairos
  • common questions

    10 Most Common Questions People Ask Me About Epilepsy

    July 19, 2020 / No Comments

    Over the many years of living with epilepsy, I’ve received a lot of questions about my condition, understandably. Some come up more often than others. Here are 10 of the…

    By Tiffany Kairos
  • woman at the beach

    When They Say “I Don’t Know How You Do It” Living with Epilepsy

    June 17, 2020 / No Comments

    Living with epilepsy is not a walk in the park. It’s a daily challenge. Not only physically, but emotionally and spiritually. The condition stretches you to your breaking point, like…

    By Tiffany Kairos
  • teapot

    How I Upcycle Epilepsy in My Life

    May 28, 2020 / No Comments

    “If you give up, you’ll have an attitude of resignation, of defeat that will affect—and infect—the rest of your life. Acceptance is empowering because it’s a choice you’ve made. Even…

    By Tiffany Kairos
  • Motherhood

    Epilepsy and the Dream of Motherhood

    May 9, 2020 / 4 Comments

    I’d always wanted to be a mother. At the age of nine on my birthday, I didn’t ask for barbies or make-up. I didn’t ask for glittery toys, no. Instead…

    By Tiffany Kairos
  • speech bubble

    You Don’t Look Like You Have Epilepsy

    April 24, 2020 / 5 Comments

    I live with Epilepsy. I have lived with this condition for over a decade. I was diagnosed with this condition in 2008. Four short months after marrying my husband. I…

    By Tiffany Kairos
  • Woman in a wheat field

    10 Things to Remember When Epilepsy Walks Into Your Life

    April 1, 2020 / No Comments

    When epilepsy walks into your life, it’s as if a tornado has unexpectedly tossed about your entire life and you’re left to pick up the pieces and rebuild. For some,…

    By Tiffany Kairos
  • Coronavirus

    How I Navigate My Epilepsy Self-Care During Coronavirus

    March 27, 2020 / 2 Comments

    Self-care is an important component of all-around wellness when you have a chronic illness. For example, epilepsy. But suppose an unanticipated situation shakes up your everyday self-care routine. How do…

    By Tiffany Kairos
  • Person being angry

    5 Things Not to Be Angry At Living with Epilepsy

    March 4, 2020 / No Comments

    Becoming diagnosed with epilepsy is a life-altering event. Epilepsy does not care your age, your race or time within your life. This condition can happen to anyone. Some are welcomed…

    By Tiffany Kairos
12345

SUBSCRIBE

Subscribe and be notified as soon as a new article is posted!

We don’t spam! Read our privacy policy for more info.

Check your inbox or spam folder to confirm your subscription.

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.

Facebook

This message is only visible to admins.
Problem displaying Facebook posts. Backup cache in use.
Click to show error
Error: Error validating access token: The session has been invalidated because the user changed their password or Facebook has changed the session for security reasons. Type: OAuthException

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! 🫶🏻
.
.
#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!! 🫶🏻🤍
.
.
#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! 🫶🏻
.
.
#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! 🫶🏻
.
.
#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!! 🫶🏻💗
.
.
#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! 🫶🏻
.
.
#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! 🫶🏻
.
.
#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! 🫶🏻
.
.
#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? 🙊😹
.
.
#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
Follow on Instagram

Twitter

Tweets by @TiffanyKairos

Recent Posts

  • How To Stay Seizure Safe At Home
  • No-Fail Ways To Remember To Take Your Medication
  • Here’s Why Epilepsy Needs Better Representation

Trending Tags

Advocate (11) Awareness (17) brain fog (1) Condition (29) Coronavirus (1) Diagnosis (22) Epilepsy (40) Family (17) fitness (1) Friend (12) Gifts (1) God (11) Independence (1) Intimacy (1) Life (26) Love (8) Marriage (3) Medication (5) Mental Health (1) Motherhood (1) Seizure (23) Symptoms (3) Trigger (2)

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.

Facebook Twitter Instagram YouTube
2022 © Rise Above Epilepsy