The Dichotomy of Struggling Versus Suffering

Hey friends Happy Halloween. I hope you have fun doing whatever you are doing. It is my mum’s birthday, so we are having a small party for her which is nice. Last Halloween I was in the hospital puking my guts out due to a brain surgery.

Today I want to talk about the dichotomy of struggling with Epilepsy versus suffering with it. When I think about it, when you say that you struggle with Epilepsy, you make yourself the protagonist of your own life. You are still front and centre, but the Epilepsy does not rule your entire world. When you say that you suffer from it, it makes the Epilepsy the protagonist in your life and you are the second character. You have no say in what goes on because the protagonist dictates everything that happens in your life. I know that people have different points of view when it comes to the whole struggle versus suffer debate. Some people like to say suffer and who am I to argue with that? Some people like to say they struggle with it, and I like to say that because it means that Epilepsy hasn’t ruined my life. It makes it difficult, and I have hard days sometimes but I still have hopes and dreams for the future which could still be tangible! Hehe so long as my brain co-operates. I want to have a family, or at least get married. I want to work even part time. I have learned that I need to think in terms of a big picture, and if I cannot work 40 hours a week it doesn’t mean that I don’t have other options. I need to be creative and think outside the box. I still need ongoing support for my Epilepsy, but I do not see why I can’t succeed in other ways. Throwing my hands up in the air and say I give up is not an option.

Where do you fall on the struggle versus suffer debate? Do you feel you struggle or suffer? Or maybe are you a bit ambivalent?


Clicking in My Cowboy Boots and Feeling Exhausted

IMAG0537Hey everyone! I hope you had a great weekend! If you were working then BOO! Sorry to hear.

This past weekend was the screening of a mental health doc that I took part in with five other youths, over a three month period. I was very anxious to see it, because although I had watched it before there is a part with me at the end that is very intense. I wasn’t sure how my boyfriend, friend, and family would respond. It was a very exhausting experience, because I and the other youths (we were actually all young adults, but whatever) were asked questions and there was ongoing applause which made me feel uncomfortable. It felt weird for being commended for being so authentic, when all that happened (in my mind) was that I was horribly miserable and depressed for months.

I finally gave in to anti depressants (or “happy pills” as I like to call them) and once they kicked in I stopped feeling so unmotivated and stopped beating myself up over things that I couldn’t control. The epilepsy is something that I beat myself up about because despite having Refractory Epilepsy, I feel like I shouldn’t be living at home, have a job, and be doing all the other things that I consider a “successful” person to be. I need to stop comparing myself to my past self, and focus on life, day by day. I think about things that I am grateful for- ┬ásuch as my little JoJo is curled up on my bed with me which is really nice. I also have an amazing family, boyfriend, and friends. I also have you, because you have taken time out of your day to read my life experiences.

Unfortunately I will not be able to share the mental health doc with a link on here, as the filmer wants to submit the documentary to different film festivals. I never really thought about how my face would be an example of mental health, and that people in other cities, provinces, or even the US could see it. I look like a totally different person today, because in the documentary I looked very pale and tired. I don’t look so pale and tired these days, which is a nice feeling. Not just for aesthetic reasons, but it isn’t fun walking around with ginormous bags under your eyes and it seems as though you can barely function. Thankfully I can function, and click down the street in my cowboy boots, so that seems like an accomplishment. Wait! It IS an accomplishment! Woo go me! Hopefully the documentary will be accepted for different film festivals, and I would be very happy for the filmer and producer if that is the case.

IMAG0557_1What else is up?! It is almost November!!! You know what that means! Epilepsy Awareness month!! I got part of my bangs dyed purple just for the occasion, and I am hosting an Epilepsy Awareness party. I have to live with it 24/7, so to educate people about it is a great feeling. I am very passionate about being an Epilepsy Advocate, so I am always happy to share info with people and continue to spread the word that it is tough to live with.

Are you doing anything for Epilepsy Awareness in November? Are you touched by mental health issues or know someone who is?? Let me know!

lots of love! xox

One Day of Sharp Incline in Seizures and Canadian voting!!

Hey friends! How was your weekend? Whether working or not, I hope it was a good one!

I spent today in a fog. Last night I had roughly 10 seizures throughout the night, and somehow I managed to get my Ativan to hopefully stop the seizures. My body was basically as though someone had left a switch on- and not in a good way. Do you ever have seizures and you are finally starting to slowly recover, and then another and another happens? That was basically was what it was like for me. It is a vague image in my mind, but I remember the shaking, the stiffening, and the confusion. By early morning of this Sunday I knew that I had to call off my plans with my friend because who knows? I could seize while going to the mall, in the mall or leaving the mall. I just could not take that chance, as much as I wanted to see my friend. She understood though which I was grateful for.
My boyfriend also came over this evening which was so so awesome. He is still learning about Epilepsy, so I forgot that he didn’t know that I can’t take in too much stimulation after a bunch of seizures, and that they effect my moods. He is doing a great job of learning, and all it takes is time. Do you have a new partner who is still adjusting to what living with Epilepsy is like?

canadian-flag-640Tomorrow is a huge deal for all of my fellow Canadians, and thankfully my head is not in a fog when it comes to voting, I am banking on the idea that my vote might help make a difference.

Otherwise my brain feels quiet and can’t take in too much excitement. I am so lucky that the pup JoJo slept close to me all day. What would we do without our dogs (and cats!)

Love you lots!

Accessible Seating on the Bus

Hey friends! Sorry I have been MIA! I am getting excited for November, which is Epilepsy Awareness Month and it’s right around the corner!

I was thinking about this topic the other day. There are always a bunch of disability/senior seats on the Skytrain that I take, and when it is super crowded the seats are always filled. I know that a bunch of people have invisible disabilities, like myself, but it is safer if I sit down. I have approached people before and asked them if I could sit in the disability spot because well, being on the Skytrain and having a seizure standing up is not the best idea ever. People always moved, which was gracious of them, but I really, really wish that if you do not need those seats, to please not take them.

First of all, it is a little embarrassing having to ask a total stranger to move because you are prone to seizures. Second of all, it gets tiring. Shouldn’t people without disabilities know better? I look very capable and like nothing would ever happen to me, but that is why Epilepsy is an invisible disability. I also do not get an aura so I can fall within seconds, which is very scary when you think about it.

So, if you don’t need a disability spot, think twice. There is someone out there like me who does.

Love you all! xox