Epilepsy,  Personal

How I Navigate My Epilepsy Self-Care During Coronavirus

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 you navigate that?

Over the last decade I’ve learned to adjust to a new normal in safe guarding my chronic illness. In a matter of a few months, I now am learning how to safe guard myself from the coronavirus pandemic. Thousands of new coronavirus cases are being identified across the United States each day. It seems like in the blink of an eye, life has become more strenuous and complex than it typically is.

That being said, life with epilepsy isn’t always a walk in the park and no doubt prepared me for this lengthy phase of social distancing and self-isolation.

Adaptability Is The Key

When we’re confronted with circumstances such as this, we have to focus on adapting to ongoing situations. This is the best possible way that we can journey through it. Living with epilepsy, I’ve picked up a couple methods of adapting. This pandemic though, is definitely inviting me to test out a few extra ones and double down on my current ones.

The way that I am adapting my everyday routine is putting me to the test – as I’m sure it is for each person – because I am being more vigilant than I’d ever been in my life.

If I’m being honest, self-isolation is no news to me. I’m an extrovert in an introvert situation. Because of my frequent seizures, I no longer drive, (and even if I could, I don’t think I’d want to due to the trauma I endured having experienced a grand-mal seizure while driving and crashing into a tree which ultimately led to my diagnosis. Thank God I didn’t harm anyone.) and I’m at home most of the time so social interaction usually consists of text messages and phone calls. I can get bored, stressed, anxious, and even frustrated. This can feel a bit lonely.

Vulnerability Moment:

It takes work to stay strong and I’ve learned to be my own voice of encouragement as well as grateful for my husband for lifting me up in times of struggle.

The opportunities that I’m presented with to get out of the house typically consist of running errands, catching a movie every now and then, taking a refreshing walk at the park and visiting family occasionally. Though I don’t drive, it is so rejuvenating to roll down the window, feel the cool breeze and be in control of the radio (yes. I am the passenger seat DJ!). My main manner of running errands involves grocery shopping. This may seem like a drag for some, but to me, it’s an occasion to greet others and offer a smile, lend a helping hand gathering the essentials for our household and simply unplugging from that cabin fever feeling. My health is reliant on avoiding seizure triggers. Especially stress and anxiety. I am always taking any opportune moment to avoid being cooped up for too long. Even going to check the mail or stepping out on the patio. It’s nice to take a break from my indoor world and head outside to greet the outdoor world in all the ways that I have available to me. The advantage to stay at home, take care of the household and personal tasks are great, don’t get me wrong! But a girl could use some time to get out and have some fun. Hey, it’s not always easy, but I make sure that I include some exciting and beneficial activities while home!

My Go-To Self-Care Practices

Exercise and Mental Health Activities

My diagnosis really opened my eyes to reflect on my overall health. Having epilepsy and needing to take medication each day to prevent seizures prompted me to adjust my lifestyle to improve my health. I learned how to eat properly and incorporate exercise. It was love at first bite and flex. I can’t imagine NOT working out or eating a healthy meal. Detoxing from my former lifestyle of eating fast food and being somewhat of a couch potato did take time but once I shed these unhealthy routines, it was equivalent to a turn of the page to a brand new chapter.

I typically go to the gym 3-4 days a week and working out is a great stress and anxiety reliever, it boosts my self-confidence, opens the door for social interaction, and as a matter of fact somewhat helps lessen my seizures.

With gyms being forced to closed due to the coronavirus, I can’t go to the gym right now, which is difficult for me. But thankfully, I’ve been creating a home gym for times that I can’t make it to the gym or I want an extra workout. This gives me an opportunity to continue to take care of my physical health during this time of staying home.

My home gym is small but I’ve invested in just about everything I need in it: resistance bands, a slam ball, dumbbells, yoga mats, foam rollers, etc.

I’ve also included at-home workouts. Websites like FitnessBlender.com created by a husband and wife team of personal trainers. (I love it because both my husband and I can work out together! Double date with gym pro’s! Awesome!)

Extreme overexertion can trigger my seizures so I only do workouts that my body can withstand. They offer over 500 different workouts and almost all of them can be customized, ranging from 10 minutes to an hour and a half. Personally, I choose 30-45 minute exercises. The great feature that they include are water breaks which gives an opportunity to take a breather. I try not to push my limits… I want to get a good workout but not at the expense of triggering a seizure.

I even like to sneak in some exercises throughout my daily routine. For instance I lunge around the house, jog up and down the stairs, laundry detergent as a kettlebell swing (as long as it has a handle of course.)

For me, thinking outside the box and staying consistent is essential to making exercise part of self-care.

Self-Expression

Over the course of a decade, being cooped up, enabled me to explore an artistic side of myself that I didn’t know existed and lie dormant for quite some time. I write, read, do origami, create string art and wall art, bake out-of-this-world desserts (bundt cakes are my specialty), I’ve become somewhat of a movie fanatic, and love listening to music. Especially when my husband is in the next room playing his guitar or recording his songs – because it’s flat out amazing. I’m not being bias, it’s just truth in my book!

Sometimes even still, I need to pause and take a moment to shut the door, cup my face in my hands and release my emotions. Let the tears fall. Or I snuggle up with my husband and rest my head on his shoulder and he hugs me with comfort and reassurance. I’m confident that so many of us are visited by similar emotions of stress, anxiety and sadness. I have moments where I feel overwhelmed, stressed and even sad. These are common emotions that we who are confined to our homes feel at one time or another.

I’m grateful that this journey of living with epilepsy has strengthened relationships within family and established life-long friendships with others who understand what it is to experience such a challenge.

I have found advocating for epilepsy awareness so rewarding, connecting with patients and caregivers, physicians and organizations that give us a voice to help others on the journey. This gives me a true sense of perseverance and determination. Epilepsy may be in my life but it doesn’t own my life.

How have you had to navigate your chronic illness during coronavirus?

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

2 Comments

  • Allison Danielle

    Hey Tiffany! It’s been a while 🙂

    I totally relate to the feelings of frustration and anxiety from being stuck inside. I’ve been taking a couple hour bike ride every few days to make sure I don’t lose my mind. I can tell I miss people because I catch myself smiling and waving at nearly anyone I see, hahaha…

    Good news though, I have been seizure free for over SEVEN months!!! This is one of the longest stretches I’ve gone in I think, ever. Unfortunately, the last one I had involved falling into a shower made of ceramic tile. I was a month into a technical college program for Speleology, doing really well, but I couldn’t recover quickly enough from concussing myself, and with a heavy heart ended up having to drop my classes. In hindsight, maybe trying to be a cave scientist/diver isn’t the safest profession for me, lol. Life goes on.

    Using this time to check up on and say hello to everyone has been a good way for me to not lose my mind during our lock down. Going to bed is my biggest challenge for sure. ADHD looooooooooves the thought of not having to get up in the morning. So if you have any tips for maintaining a normal sleep schedule during this crisis, I’m all ears. 🙂

  • Mandy Krzywonski

    I can totally understand and sympathize with the epilepsy community and the fear of COVID-19. Being fragile and so susceptible to illnesses is what causes our fear to be a little worse than the average human. For me, Trileptal has caused me to easily catch infections of all sorts. I thought it was all in my head until my amazing old Neuro Dr. Szabo confirmed that our meds do mess with our immune systems.

    But just like you, I’ve made a positive list of things I can do at home to make life easier and more enjoyable while we are on “lockdown” lol. Instead of driving to get the mail (with my mother, I don’t drive lol) I have been walking. Adding some steps to my day. Sitting in the chairs on our back porch and just looking at the trees. Enjoying the simple things in life instead of the fancy privileges we never realized we even had is an eye-opening experience.

    I am also using my home gym that I’ve hardly used! I have kettlebells, cardio step stools (not sure what their actual name is lol – but that thing you step up and down on) and even a really cool resistance training set. It’s making me wonder why I’m even paying for my gym membership lol!!!

    I’m glad you’re holding to your positivity and sharing ideas with others. It’s very kind of you to help people come out of their shells and fight the blues. Less stress, less seizures!

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