Tag Archives: seizures

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 blogs 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. 😉

Love,
Sita & JoJo

My award!

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 definition here.  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

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 it 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

When Chronic Illness Gets too F*cking Real

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Chronic illness got too f*cking real today.

crying galI have been having seizures on and off since Sunday, but today was good. Or so it seemed. I have a massive headache, hence why I am drinking iced coffee, and have taken a few Tylenol. My parents are in the US because my brother is doing his PhD defense….and they wanted to be there to witness that. I thought “Awesome! My parents will be gone and my aunty will be staying with me!”

Last night I ended up barely sleeping, and I cried and cried in bed this morning because I felt horrible and wanted my mom. I also felt like an idiot, because as a 27 year old, I should be able to cope without my mom.

My aunt consoled me, and I waffled back and forth as to whether I would go to my one class this week. It is unfortunate that it is on a Thursday, as Thursdays tend to be my “crash day”. Ultimately, as the stubborn Taurus that I am, I headed off to meet a few friends before class so we could review some of the material for our quiz today. I also told the professor that I wanted to review a mark that I got on a previous assignment, so I couldn’t put that off. The professor had some great examples as to how I could improve, but I couldn’t help but feel the frustration that I wasn’t doing well in the class, and why it was so hard to pick up the skills. I managed to (mostly) hold myself together while talking to the prof, and after she said that she would let me take the quiz at a later date, I headed to the classroom to say hi and goodbye to some of my peers.

One of my peers caught me in the hallway and everything fell apart. I hate to complain about having epilepsy, but the headache, frustration, and going home all came to a head and I ended up having an ugly cry. She was so kind and hugged me and told me that she was frustrated too- and that she would text me regarding what happened in class. She hugged me which made it feel a bit better.

Finally I went and walked to the class, where my friend said he would walk me to the subway. I decided to refill my iced coffee, and when the guy in line at Starbucks turned to me and asked “How are you doing today?” I was very Un-Canadian and said “awful”. He didn’t know what to do with this information.

So, chronic illness has given me a blast. I am exhausted, feel over committed and stressed out because of one friggen course.

Love you lots,

Sita & JoJo

Living with Epilepsy

The Power of Thought

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A couple of days ago I was dozing in my bed….and the thought crossed my mind about how my EX might have an inappropriate relationship with her counselor. Somehow, even though I was half asleep…I started to jerk which shook me fully awake. I then stumbled around and took some ativan…so in case any of those thoughts popped up again, I wouldn’t be shaken awake.

Isn’t it amazing how the thought of my ex and her counselor shook me awake? It was able to have that sort of impact on my body. I think about when I get really really angry and then lose full control over my body. It will do whatever it wants. Stiffen, seize, fall over. You name it. I have to be so so careful with my emotions and how I handle them, otherwise my brain will start to misfire (or not fire!) and I could be in serious danger with injuries.

Speaking of injuries, I just got better this week from a very mild concussion last week. My friend also has epilepsy and was very severely concussed at the same time. It was kinda crazy to think that we both got concussions-mine mild and hers severe-at the same time.

Anyhooo I am feeling like a night owl tonight. It must be all of those damn meds. Please tell me I am not the only one with sleeping problems and medications!

Love ya lots,
Sita & JoJo xox

Living with Epilepsy

Finding Mentors Through My Community

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Hey friends! Can you believe that it is Christmas time again?? I can’t! This year has just flown by.

I have been thinking about community a lot lately and how I have found various mentors. I have grown my community in multiple directions- Yoga, Public Speakers, Life Coaches, Entrepreneurs, and not to forget my friends and family. I don’t think that everyone realizes it, but they contribute something powerful and meaningful to my everyday way of life.

When I was first recruited for TEDxStanleyPark, in December of 2015, I was elated. I was soon to be one of the people standing on the stage, sharing knowledge and wisdom like the people in so many TEDxTalks that I looked up to. I was recruited late in the game, so when I went to the very first rehearsal in January 2016, I was nervous but oh so thrilled to be there. I needed to soak in every bit of information that I could, having never done anything like Toastmasters, and only a bit of public speaking prior. After the first rehearsal, I soon became engaged with one of the speaker’s talks. She was charismatic, witty, and had a powerful personality. She knew how to deliver a good talk.

I already had a coach, but as a novice speaker, I needed all the help I could get. I knew she wouldn’t give me any BS, and would tell me like it is. Sure enough, that’s what happened, and I honed in my public speaking skills.  In addition, I took her entrepreneur course, which taught me how to lay the ground work for starting my own business. I worked hard at entrepreneurship, and even though found it wasn’t my calling in life I found some very translatable skills that I can carry with me for the rest of my life. She has also given me the courage to keep moving forward- especially when things get tough.

I am so lucky to have Isabelle as one of my mentors. Her support means everything to me, and helps me to live life at full volume, despite my epilepsy.

Living with Epilepsy

Why do People with Chronic Illness Feel the Need to Excel??

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Hey friends,

inspire-peopleIt is almost midnight here, and I am writing this in a post-ictal state. (Post seizure).  My tummy hurts and I feel nauseous. I fell face down on the carper while I was getting ready for bed, and hallucinated that my mum was there, telling me not to get up When I came to- my mum was nowhere in sight.

My seizures have come back in an aggressive manner. Not just a little Absence seizure here, but I fall flat on my face, and on public transit-to name a few. I am getting worn out by my seizures, so I am learning that I need to slow the f*ck down, which is hard for me.

It is hard for me because I am very extraverted. I love planning meet ups, (if you can go to one I recommend it!) seeing current friends and making new ones.Even if not much is going on at home I need to go to my local coffee shop to be around people. Otherwise I get lethargic and sometimes I get low mood. I NEED to be around people, (i’m okay being alone-but I always set the bar high for my achievements). When I was in high school? Even though my seizures were controlled, I was contending with a learning disorder and I told myself I would get high grades, despite the two. I graduated with Honors with Distinction and won the Writing 12 and Spanish 12 award.

Regardless,

My question is why?? WHY do people with Chronic Illnesses (myself included) feel the need to constantly be high achievers? Even when our health is at the bottom of the crapper!  I want to achieve something. Doing little makes me feel bad, as I have so many other ideas I want to execute. To even focus energy on two things takes a lot out of me. I know I have Refractory Epilepsy, (which to refresh your memory is hard to control Epilepsy), but I hate not contributing to society!! Even when I took a year off of university, I painted my nails regularly because it made me feel like i was doing *something*.

Do you have this issue? Can you give me any advice? Anything? Please??

Lots of love,
Sita Gaia xox