We are all on our journey, having highs and lows, and by sharing our stories, we can learn and make our lives easier, a step at a time. I want to share how epilepsy influences my life and learn from each other. I hope to help those who have epilepsy, are a caregiver of a person with epilepsy, if you have a friend who has epilepsy or if you are just curious. All are welcome here!
Early years with epilepsy experienceÂ
Dad
I was about five years old when I was first exposed to Epilepsy. My dad was walking us back from school, and our home was about 100 feet away. Suddenly, my dad was on the floor having a seizure. At that moment, I knew he fell hard, shaking on the ground.
Early on, I had to be a caregiver for my dad, and as I got older, my duties increased. My brother and I became the translators for my dad’s doctor appointments and provided Seizure first aid. My dad would injure his body when he would fall during a seizure. His tongue would be split right open, blood everywhere. He would constantly lose his job as he was embarrassed that his coworkers saw him leave work in an ambulance. His previous doctor did not investigate his epilepsy and did not send him to a neurologist. Despite having epilepsy, my dad has not been approved for disability, thus leaving the burden on my mom.
Picture: Look at him here buying me a pretty plant!
My dad had his ways, didn’t like big crowds, going to movies, and much more. My brother and I thought my dad was weird, but it was normal. Once we started to have seizures, my blinders fell off. I UNDERSTAND. I’M SORRY DAD!
Myself
When I was a kid I wanted to find a cure for epilepsy so my dad could have a normal life. Well, I thought nursing seemed easier…lol. As a teen, I would pass out a lot with no answers. Besides that, I was diagnosed with Hashimoto’s hypothyroid. This disease slows down my metabolism, I always feel cold and depressed, it is hard to lose weight, and much more.
Looking back, I did have anxiety, lots of it. I thought I was invincible, my dad was the one with epilepsy, not me. I regularly provided first aid for my dad during my nursing studies, it was a lot. Unfortunately, I saw him lose his job and not get proper financial help.
Thankfully, I graduated from nursing in 2011 with the hope of helping my dad and his epilepsy.
Picture: I’m enjoying living in South Algonquin.
My first seizure (clonic-tonic) was in 2016, then several more, while I worked multiple jobs as a RN. Then I had a seizure the day after my brother’s wedding, I had a lot of stress as a full-time manager at the hospital, COVID, and teaching.
My Epilepsy Triggers are:
- lack of sleep,
- stress,
- anxiety, I have anxious thoughts that turn into panic attacks,
- not wanting to be alone,
- losing my driver’s license,
- losing independence,
- as an RN, where do I fit with Epilepsy, who would want to hire me and give me accommodations?
- would I ever find a partner who would love me with all I carried?
- would I ever have kids and keep them safe?
Brother
In 2018, my brother had his first seizure, another one when he had COVID-19, and then on the dance floor of his wedding. I love my baby brother so much! I know he will be taken care of by his wife. This gives me peace. Now we understand our dad! I wish it didn’t have to be this way to understand him, se la vie.
Picture: At my brother’s wedding. I had a seizure the next morning (lack of sleep).
The Support I have:
My Mom
My strong mom, faithful and courageous mom. She is a constant in all of the mess. Even though my mom was not capable of helping us during all of the seizures, she was there for the aftermath. It was much needed. My mom worked about 30 years in the same job to support us and I am truly thankful.
Picture: My mother and I at my wedding.
My Brother
He is a solid person, he calms me, and we chat for long periods and sometimes aggravate each other. It only seems natural right? We have bonded over the fact that we both have epilepsy. Now the jokes are better. Ha!
My Dad
He is better at communicating his feelings and giving me advice on how he deals with his epilepsy. I’m honoured to know more about him.
My Friends
They understand that I may get overwhelmed at times and make sure to ask how I am doing.
My Husband
Hands down the best support I’ve ever had.
He is:
- patient
- loving
- understanding
- has the best ideas on what I can do to help me feel empowered
- I never thought a person like him ever existed and would want to be with me. I know I deserve the best, I just didn’t know it was a possibility. Haha
Picture: At my best friend’s wedding.
How I cope with Epilepsy
Church
Community support, connections and prayer.
Prayer
Relaxes me, I know who is watching over me, and I feel loved.
Crafts
Knitting, crocheting, painting, growing plants, sewing, gardening, and walking all bring me happiness and I forget that I have epilepsy.
My other coping mechanisms
Being in nature, walking, therapy, support group Zoom meetings, medications, learning to rest and not having to hustle every day.
How do you cope with epilepsy?
Sending Shawn a selfie. Working in Digby, NS.
My Career and Epilepsy
Last summer, I worked as a nurse in Nova Scotia for four months. Despite the setback of my previous job being cancelled due to my epilepsy, I refuse to let it hold me back. I have been applying to online jobs to help with work stress, but I’m eager for more opportunities. That’s why I started this blog – to help and be helped, and make some money. In the meantime, let’s work together to make a difference.
Now
It took me about three months to recover from my last seizure. Since the last seizure, I have been able to switch medications without panic attacks, including cannabis, and get on temporary sleeping and anxiety pills. I finally went on daily anxiety pills that helped so much. I wish I had started them earlier!! Now, I ‘m trying to wean off as I feel better with my doctor’s approval.
Good News!
Several years ago my dad was able to get the right doctor. The doctor was able to help him with the right medications and when cannabis became legal, my dad used it to help his epilepsy, and he has been seizure-free since then! He is happier, he expresses his sad emotions, and he is the dad I didn’t know existed.
What I hope my blog will do.
I know everyone has a different experience with epilepsy, but just know you can talk to someone and you will get some help. I’m learning to take life slower, to depend on others and enjoy the peaceful times and when the storm gets rough I try to ride the waves.
It is important to know, that no matter where we started with this journey, the other part is how we grow from this.
Join me as I share my experiences with living with epilepsy. I may learn from you and you may learn from me.
Picture: Living at the cottage last year, enjoying a beautiful sunset in South Algonquin.
Let me know how you cope with epilepsy.Follow me on Instagram!
For help regarding Epilepsy, please click here (CA) or here (US).
I am the husband – I love this woman so much. I am so proud of her and am excited to see where this goes. She is the greatest thing to ever happen to me and I know anyone else who reads this, will fall in love with her too. Thank you for being my wife and letting me always speak from the heart, no matter how it sounds.
My beautiful babe <3 thank you for all your love. I love being your wife. You are so kind, loving, funny and smart- the total package.
Beautiful words written by such a strong woman, who also shows her strength through vulnerability. Grateful to be able to support you on your journey and learn from you as well!
Love ya sista xo
Hello Zoe! I appreciate your word of encouragement. <3