Finding Hope

Did you know more than 300,000 Canadians have epilepsy?

When you think or hear the word epilepsy, I want you to take a moment and think about what that looks like in your mind. Do you automatically see someone falling to the ground, shaking/convulsing? That is one type of seizure, however, it can look different for everyone.  

Focal aware seizures: “A person will be alert, aware of everything that is happening, and be able to have a conversation”. Some people state it feels like having an aura.

Focal impaired awareness seizures (which is what I experience): Change in awareness, and/or thinking abilities. It can cause issues with communication and understanding language.

Generalized seizures: (such as tonic-clonic) When the body convulses.  

There are many different types of seizures. The 3 I just listed are only a few. They are categorized based on where they occur in the brain. Long story short, epilepsy can look different for all of us. (Links below for more information on epilepsy)

Once I got the results from my MRI, I learned I have a congenital birth spot on my brain causing the spontaneous lapse in memory, confusion, fatigue, nausea along with other symptoms; they were seizures. A bit of shock hit… this congenital birth defect was just being found now, and causing issues in my early 30’s. Accepting this new life-long diagnosis was not going to be easy. 

In my head, I was going back work, going to get my license back, and just get on with my life quickly! Boy was I wrong, and not prepared for the road ahead of me, both physically and mentally! 

The side effects from the medication knocked me down. I felt hung over every day without having a sip of alcohol. The fatigue was real, it took all my energy just to make the bed. Two weeks after starting medication, I had a seizure, so they increased them. I turned into a walking zombie. I could hardly function, which was no way of living. So, they made a slight adjustment. Boom. Another seizure. I was naive thinking I would start this medication, the seizures would stop immediately, and I would continue my ‘normal’ life. I could not have been more wrong. 

The victim mentality kicked in fast. Why me, woe is me, life is unfair, what did I do to deserve this, etc. The tears flowed like waterfalls. I wanted my old life back (or so I thought). What I wanted most was to be able to drive myself to the freaking grocery store, or the gym!  Also, to not feel miserable from this medication that wasn’t even working!

With no return to work date, not a sweet clue when I’d be able to drive again thanks to the continuous setbacks (where I live you have to be 6 months seizure free to get your license back), medication not working, making me feel miserable; I hated everything. I just wanted to get on with my life!

I started my nursing career in mental health and addictions, moved on to work with surgical and burn patients, then eventually to a medical/ surgical/covid step down unit, and I was on my way to working in ICU. I had pretty decent experience with patients that had a multitude of illness within those categories. What I do no have experience with? Neurology patients. So, I would show up to my appointments with my neurologist, tell him what was going on, he would tell me what changes to make, I would do it, that was that. I was not familiar with different anti-seizure medications, and I didn’t have a sweet clue what resources were available while going through this new life-long diagnosis. 

Do you know how many times I have asked / questioned prescriptions and other things in my career?!? I can’t even count! As a nurse, I had a voice, a duty to advocate for my patients, and work collaboratively with the team! Yet when it came to my own health, I shut down. I became this tiny, quiet, insecure, vulnerable, defeated person. This lead to multiple medication dosage changes, emotional instability, stress, anxiety, and depression. I was loosing myself, one day at a time. 

I felt alone, hopeless, and helpless. Now going through an identity crisis on top of everything else. Nursing for 6 years, now off work.  Driving since I was 16, now if felt like getting my license back would take an eternity. Going to the gym was my outlet, now I could barley make the bed thanks to no energy and feeling nauseated a good chunk of the day. I didn’t want to go out with friends, because of my low mood, no energy and feeling like trash. Life sucked.

I had little fight left in me. Feeling I was being knocked down time after time, day after day. I was emotionally exhausted, and on the days I had a seizure, I was physically exhausted. 

One thing I am grateful for… No matter how many times I strike out, no matter how defeated I am from those strike outs, I will continue to go up to bat for myself. I may have tears in my eyes, and be dragging myself, but I’ll get up to bat. They say, “if you get knocked down 9 time, get up 10”. So that is what I did. Giving up on myself was not an option.

Despite the hopelessness, feeling alone, the emotional and physical exhaustion, I thought, ‘there has to be a better way’. Everything in life at that time felt overwhelming, so I did not even have a sweet clue where to begin. 

Mom to the rescue! She found the Epilepsy Association of the Maritimes (I will link their facebook group and their website at the bottom of this page). I knew I needed resources, more information, I needed help (something I am not very good at asking for).

I sent an email October 4th 2022, after being diagnosed in July 2022 (those 3 months felt like a freaking eternity). Not longer after the email was sent, I received a phone call. One that left me in tears. I shared a lot with the coordinator: what my seizures looked like, the medication I was on, the supports I had in place, and a lot of the struggles I was facing. 

One of my [many] struggles was, I always felt alone; a nurse diagnosed with epilepsy. I wanted to meet another nurse who worked with high acuity patients that has gone through this, who has epilepsy, who is living a ‘normal’ life; I didn’t think that person existed. Well, they do! They would be reaching out to me in the next few days so we could connect. Maybe I was not as alone as I thought. 

Another struggle I had been facing: I was informed by my neurologist (at the time), my current medication, and others are not safe in pregnancy. I was not, am not, nor am I planning right now to get pregnant, but I felt this was important to address for when that day comes. Remember I don’t have experience around anti-seizure medication (excpet in emergency situations, in a controlled hospital environment). Being informed that the medications were not safe in pregnancy, broke me. I didn’t hear anything else during that appointment. 

Coming back to my phone call…learning what I had originally been told (the medication and others are not safe in pregnancy) was not true. There are lots of newer anti-seizure medications safe in pregnancy. Pictures and stories about healthy, happy, beautiful babies were shared over the years with the co-ordinator. Tears, more tears. Happy tears. The first happy tears since my diagnosis. 

I leaned this day, the medication I was one, was one of the oldest anti-seizure medications out there. I’m sure it works great for some people. It was NOT working for me. I was encouraged to get a second opinion, to know all my options, to start living my life again, not just existing. 

I hung up the phone that day, with tears of joy in my eyes. That one phone call gave my a spark of hope, that life can and will be amazing. When trying to light a fire, that is all you need, one little spark to catch. This is what happened to me with that phone call. I could feel the fire inside me starting to grow from this one tiny spark of hope. I had no idea where it was going, or what was to come. What I did know, is life lead me to this one phone call so I could move forward and start living, thriving and being the best version of myself. This was the beginning that lead me here, The Journey to my New Normal. 

Until next time…

Thank you once again, for checking out my page! Taking the time to read, and come along this journey I have decided to share with you all. It really means a lot. I will be aiming to share once a week on Wednesdays, so check back in next week!

I felt so alone after my diagnosis. If you, or anyone you know needs resources, please feel free to reach out to myself, or check out the links I have provided below. The epilepsy association Maritimes has a Facebook page with contact information if you would like further resources (link below). The group also has information, people sharing stories, questions being answered, etc.

Whether it be epilepsy, or any other diagnosis, please know you are never alone, despite it feeling that way! You may have to do a little digging for resources but they are out there. You owe it to yourself to keep fighting, to never give up on yourself. Never forget, you matter.