July 2022-October 2022, I look back and see a vulnerable, defeated, hopeless, helpless young lady. October I had received a call that gave me a spark of hope. Fast forward to the end of November-early December of 2022, I was getting my voice back. Thanks to the support of the epilepsy association co-ordinator, friends, family and my boyfriend, I was regaining my confidence, utilizing resources, utilizing my voice!
I now had the courage to speak up for myself, and informed my neurologist (at the time), I no longer wanted to take this medication. I was experiencing too many side effects, still having seizures, and felt this medication was not right or me; time for a change. He mentioned the next medication he wanted to try. I had seen this medication used during my nursing career, just not as an anti-seizure medication, therefore I was weary of it. I wanted all the information so I could make an informed decision. So, instead of just saying ok, I asked questions about expected side effects, outcomes of other people on this medication, if there were other options besides this one he may consider.
Slowly loosing trust and faith in my neurologist, I wanted to hear from other sources about this medication. As much as I love a good google search, I had resources and people I could now reach out to. I was provided information from credible sources other than google (no offence google, I’m still a huge fan!). This is a widely used medication, with good outcomes in the treatment of epilepsy. Excited to be weaning off the medication making me feel like garbage, weary of the new medication, yet hopeful it would provide desired results; seizure free.
I have decided to leave out the name of medications for several reasons. The primary reason being, anyone who is on medication may react differently. There is no one fits all situation. Some medication may work wonders for some people, and others not so much. It is not my intention to give false hope to someone who may be experiencing seizures. What works for me, may not work for others. It is important to with work with your health care team members to find the best treatment options for you.
December 15th & 16th, que more tears. Why? Back to back seizures. Upset, sad, sleep deprived and teary eyed. I knew these seizures were a combination of the medication not in full effect, plus not sleeping well. Sleep deprivation from the medication, not something I desired. After the evening dose of meds, my brain was wired. I needed it to calm the heck down so I could rest! Thus, another medication prescribed to help me sleep. I was so grateful to have my voice back. I informed the neurologist I was accepting of the medication SHORT TERM while continuing to work on my sleep routine. My brain desperate for sleep, I agreed to use them for 30 days with a follow-up and re-evaluation.
Personally, I do not want to be on more medication than absolutely necessary. I do not want to use medication to treat and or mask symptoms. I want to get to the root cause. Utilize more natural ways to restore balance in my body, which will help elevate side effects and symptoms.
December 28, 2022. Exhausted, both physically and mentally. Exhausted from being miserable for months. I was done. Ready to figure out a way to no longer feel like this. I came across a book (likely from scrolling TikTok) that, to my knowledge is a very well known book. Thanks to some amazing friends who got me a Kobo for my birthday, (I’d been reading so much since being off work so thank you ladies!!! ) I bought the book that day, and began reading it immediately. This book would help more than I knew.
Atomic Habits, by James Clear. If you have not read this book, and are ready to make changes in your life, I highly recommend. It states right on the cover, “An easy & proven way to build good habits & break bad ones”. Let me tell you from first hand experience, they are not kidding! I knew I had bad habits, even more since the diagnosis. I was ready for change, ready to start feeling better, ready for the next chapter in life to begin.
Atomic Habits focuses on making tiny changes that will compound, thus, have a big impact over time. Making the bed each morning for example, may not seem like a difficult task, or that it would have a large impact. By making the bed each morning when you get up, gives you a sense of accomplishment. By accomplishing this one small task, you are more likely to accomplish another, and so on. There is a lot of research to support how making the bed each morning increases your sense of pride and productivity.
“When you’re in motion, you’re planning and stargazing and learning. Those are all good things, but they don’t produce a results. Action on the other hand, is the type of behaviour that will deliver an outcome” James Clear (JC). Reading that sentence made me realize, I was great at setting goals, writing them down, strategizing how I could fit things in to my day to achieve them. Then… I would fall off the bandwagon.
“If you want better results, then forget about setting goals. Focus on your system instead.” JC. THIS is why my previous attempts at changing my habits failed time after time. I had lots of goals I wanted to achieve, very rarely, if ever, did I have a system. I was ready and willing to find an effective system if it meant a happier, more joyful life! I was ready to take action! The day I started reading Atomic Habits, I came across habit stacking and habit tracking, which really resonated with me.I began to put these systems into place that day. Habit stacking and habit tracking is how it began.
Every morning for weeks, the alarm would go off, the inner voice began “try and get more sleep” or “just get up, have the coffee, make the bed later.” No-one said it would be easy, breaking bad habits and forming new ones takes time and effort. So many mornings, I would say out loud to myself “nope, get up, make the bed and get dressed.” I really wanted to be more productive throughout the day, have more energy, feel more at peace. Who doesn’t want to feel good?
Making the bed before I even left the bedroom and getting dressed helped kick start each day. Desperate for coffee before anything else, it took mental effort to do the other small tasks: make the bed, get dressed, wash my face with cool water, take my medication, drink my greens and fibre mix THEN I would sit down to enjoy my coffee! It felt like a reward, and what is rewarded will be repeated. While I sipped my coffee, I journaled each morning. There are so many benefits to consistent journaling! I would write all my thoughts, good, bad and ugly. After a good vent session through writing, I decided trying something different to wrap it up. I wrote 3 things I am grateful for, 3 things I am proud of, and 3 things I am looking forward to. This daily gratitude practice helped shift my perspective and mood for the day. I still do this. Taking time to stop and recognize what I am grateful for and what I am proud of, helps shift my thought patterns. It has truly been amazing.
At the end of each day, I would take out my habit tracking sheet of paper, use a check mark for what I completed, and an X for what I didn’t. I used this method for two reasons. One, by using a check mark, it sends a reward signal to the brain which increases dopamine (the feel good neurotransmitter). The second reason was, by markings an X, it gave a clear indication where I need to either reevaluate the task, or put a little more energy into completing it. Habit stacking and tracking had proven quickly this was going to be an effective system for me.
My system was working wonders, until I was hit hard with some kind of viral chest infection which began mid January. Wanting to recover, but also keeping on track with habit stacking, I continued to do what I could with some minor adjustments. Making the bed, drinking water before coffee, journaling, meditation and drinking lots of fluids were consistently part of my morning routine. Being that physically unwell, spending more time on the couch lead me to some great books too (some of which I will share in the near future). Bedtime routine was in place, however poor sleep/lack of sleep were catching up fast thanks to some pretty nasty coughing attacks. They would keep me up, or wake me out of a sound sleep. January 19th, sleep deprived, aggressive coughing where nothing seemed to help, had lead to… boom… a seizure.
I had been a full month seizure free at that point, the longest I had gone since ending up in the hospital back in June before my diagnosis. Naturally I was disappointed. However, something was different after this particular episode. Not feeling angry, defeated, hopeless, nor did I cry. I always cried after having a seizure. This time, after the post-ical phase had passed, I acknowledge what happened, wrote it down so I could inform my neurologist and continued to rest for the day.
Was I that sick I didn’t care I had a seizure? OR was this possibly the beginning of acceptance? I believe it was a huge step towards acceptance.
Until next time…
Deciding to make changes can be overwhelming, and lead to failed attempts, or not starting at all. Busy, stress filled lives, it may feel like there is just no time! Invest in yourself, it pays off. It’s been a few months since I started habit stacking and tracking, absolutely no regrets. I will share more in upcoming posts.
Atomic Habits is an amazing, easy read, that highlights 4 laws that help change your ways to build healthier habits. I cannot recommend this book enough if you are looking to form and keep better habits, and kick bad ones to the curb for good.
This post explores more of the beginning of creating new healthier habits which lead me to where I am today, and less about epilepsy. When wanting to create change, it does not have to be massive leaps to make amazing progress. You don’t get to the summit of a mountain without putting one foot in front of the other! Small steps add up really quickly. One foot in front of the other, keep going. You got this!
Journey to My New Normal 
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