Category Archives: Living with Epilepsy

Posts on living with epilepsy

Living with Epilepsy

WOAH! SO Many Exciting events!

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Hey friends!

lady-gaga-win-inline-0bf133f0-2c2b-4a01-9245-a441b980271c

So I was unable to write about this on July 29th, but as of that date Life at Full Volume has been around for 5 years! I can’t believe that something that was created out of the suggestion that I wouldn’t be bored one summer has kept going!

I have also been named one of the top 50 blogs on the web! I can’t even believe it! YOU are the ones who have made it happen! You have listened to my bad days, silly musings, and important information! So to that, I dedicate this to YOU!! I am honestly speechless….so this will be a short blog post. I love you so much! New and old readers!!

Also, please check out the other blogsĀ here!!here!!

PS- I got to see Lady Gaga on her opening night of her Joanne tour…which I have no words for- except my life is complete. So the photo above seemed relevant. šŸ˜‰

Love,
Sita & JoJo

My award!

Living with Epilepsy

Epilepsy: Stepping Up and Taking Responsibility

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successful woman

Hey guys! I am still recovering from the VNS surgery I had last week, and through this awesome book my gf lent me I realized something: I can either be the victim or step up and take responsibility. The author describes it like this: you end up with a crying baby on your door step. Is it your fault? No, but it’s your responsibility to manage it.

Too often I have been whining about my epilepsy and complaining that I am a victim to it. Did it make me depressed? Yup. Did I get anywhere? Nope. I have been stepping up more and taking better care of myself ( e.g., always carrying my emergency seizure meds, and I take full responsibility for when I experienced toxicity.) It was my own dumb fault that it happened, and I now rely on a dose-it, which can tell me if I’ve taken my meds or not. The VNS will work, but if it doesn’t epilepsy is just a facet of who I am, and not my defining character. RIGHT?!! šŸ˜€

I think my values have been skewed and have seen myself as a failure since I’m not a “successful” social worker. Like my mum says, one day at a time….and I’m also part of the core team for her entrepreneurial business.

I need to remember that everyone’s ideas of success are different, and I will kick ass in my own way. I am working on redefining myself and not just on my epilepsy. Like “Hey I am Sita I am an epileptic” aint an option anymore. Falling victim to something I cannot control is not an option.

Ā Lots of love,
Sita & JoJo xox
Living with Epilepsy

I Finally got The Vagus Nerve Stimulator Inserted!!!

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Hey guys!!

cute_cyborg_unicat_by_cansin13art-dak33xiOn July 5 I finally got the VNS inserted. If you have no idea what the f*ck that is, check out a quick definitionĀ here. Ā The surgery took wayyyy longer than I anticipated and it hurt more in the first couple of days than I thought, but I am avoiding taking the pain killers I was prescribed because it hurts my stomach a lot.

My Mum helped me change bandages today, and damn it looks nasty. There are slight stitches on my collar bone, and some ugly ones on my neck. But my girlfriend lent me this great book called “The Subtle Art of Not Giving a F*ck” by Mark Manson. I am reading the section about happiness and I love this quote: “…”Happiness requires struggle. It grows from problems. Joy just doesn’t sprout out of the ground like daisies and rainbows. Real, serious lifelong fulfillment and meaning have to be earned….”

So the Vagus Nerve Stimulator is often described as a Pace Maker for the brain, but I still haven’t had it turn on. I joke with my girlfriend and family that I am becoming a cyborg. hehehe. I still feel kinda nauseous but I have changed out of my PJ’s and am wearing casual clothes so that’s a step in the right direction. I am also listening to Boyce Avenue (check them out on Spotify!) so they are nice and chill cover songs. Life has been a bit chaotic in my family life, but I am trying to just relax and take it as easy as possible. My brother is coming home today and my girlfriend is coming over tomorrow and I have some friends who are going to visit. So other than some nausea, I am a happy girl. From now on, this blog will be written by a cute cyborg! Woot!

Love,
Sita & JoJo

Blog Feature, Living with Epilepsy

I’m a 27 Year Old Woman who Still Doesn’t know what the f*ck to Do

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confused girl

 

Hey guys! I am back! A little tired, yet I have wanted to talk about this topic for awhile. Without knowing me, just based off of the title? Would people call me lazy? Yup. Am I?
Nope.

I had my plan all figured out when I was ten, and picked up that month’s edition of TIME magazine. I am in the generation that over diagnosed its’ students with ADHD. Autism was still new and neurologists/behavioral psychologists were still investigating it. This edition of TIME magazine profiled an 8 year old boy, who, (my ten year old brain understood) that he perceived and interacted with the world in a different way than I did. Ā I was fascinated. From then on, I decided to become a social worker to work with individuals on the Autism spectrum.

I have been able to work with individuals on the spectrum (Asperger’s, before it was removed from the DSM IV). The students I worked with taught me so much, and I hope that I taught them a thing or two. This was my driving force to obtain my degree in social work.

But then my seizures came back, hard core. I graduated in 2014, but was still sure I would be able to work with Young Adults with Autism. My dream job was to work in a group home, but with all the requirements of a Class 5 driver’s license, that left me out of the running for many job opportunities.
I don’t know if I still have that social worker edge to me. I have considered becoming an Addictions Counselor, a Registered Massage Therapist becoming an aestheticism, public speaker, writer…..dare I say more?? Ā Someone told me that she had a hard time figuring out her purpose…but when she did it all clicked into place….and that it would be the same for me, too.

I’m still lost….and nothing is clicking yet. Hopefully with the Vagus Nerve Stimulator coming up this week I will have more energy and zest for my passion (whatever that is!)

Happy Canada Day and Early July 4 for my friends in the States.

Lots of love,
Sita & JoJo

PS I have only had ONE cold brew since quitting coffee!

Living with Epilepsy

Getting Rid of Coffee: Day 1

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sad coffee

If you have been following me for a looong time you will know that I went through a period of cutting caffeine out of my every day life. LOL that didn’t seem to last.
(It was SO long ago I can’t find the post. My apologies!!)

I used to only drink tea, but have turned to coffee to keep me awake due to the fatigue from my meds. I love Iced Coffee (No danger of burns!) and I always order it from Starbucks with Almond milk and a shot of Vanilla. Now, despite my obsession with coffee- I have noticed that it has suppressed my appetite. I can easily skip breakfast and lunch. I saw this in the TedxClapham talk by Dave Chawner where he references “coffee blocking”. You can watch itĀ here.

So essentially I have been coffee blocking and I am scared. So the first step is to cut out coffee and go back to tea. I never lost my appetite with tea, so that should be good. Also- maybe it’s my medications? :/ Regardless, I am sad about this life change but it is for the better.

Love you lots,

Sita & JoJo

Living with Epilepsy

How Disability Support Keeps the Disabled Poor

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I am very angry right now. I was just on facebook and a friend of mine, let’s call her Annie, posted that since she lives with her boyfriend and he makes more money than her, she is losing all of her disability benefits. Correction, Annie has such severe anxiety that she is unable to work. Annie’s only source of income is disability. Now that Annie’s partner, James is considered a common law partner- Annie is being cut off.

I have been so angry, and anxious for my future. I can only work part time at best. I don’t even work right now, as the field I am trained in requires most people to drive a car. That is fucking ableist.

I know no one will leave me out on the streets, but this is why I am starting my own private practice. Ā I will probably be poor my entire life, but a little income is better than nothing. I feel like crying. I feel like punching something. I feel paralyzed by my anxiety. I say a big FUCK YOU to my epilepsy. I am anxiously awaiting my Vagus Nerve Stimulator which might help, but still. I hate the unknown. Ā Are you on disability? Do you feel the same way?

Love,
Sita & JoJo

Living with Epilepsy

I Look Hot; My Body is TiredĀ 

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Hey guys!

I’ve been thinking a lot about our ableist culture recently, and how epilepsy is an invisible disability.

Perhaps if you do not have an invisible disability, you might be thinking “Well that’s great! No one knows you have a disability!” Sometimes this can be handy, such as my learning disability. People don’t need to know I have one, unless it’s relevant to the situation. 

With my epilepsy, I look “able-bodied” except I could collapse without any warning. Besides the fact that this is a pain in the ass, when I need the  disability seat on public transit, I often get dirty looks because I don’t look like what people think a disability looks like. 

Therefore, this makes me feel like an ass because it doesn’t look like I need to sit. Let’s be realistic here; if I’m standing on the subway and have a complex partial seizure ( where I fall), it could be very dangerous. As my dad says, I could experience “collateral damage”.

So, if someone asks for the disability seat, don’t be ableist. They could have an invisible disability that requires them to sit. 

Love,

Sita & JoJo