Tag Archives: seizures

Finding Mentors Through My Community

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.

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

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

The Isolation of Epilepsy

chronic-illness
Hey friends,

I hope you had a good weekend. My weekend was off and on. It started on Friday when I found out that there were cuts being made to the Epilepsy Clinic I go to and that my psychologist won’t be there anymore. I hugged him, and left his office absolutely devastated. It was a weird mix between devastation and seething anger. It was a stormy day, so I sat in the Starbucks attached to the clinic for awhile, and then braved the cold of the storm.

I  soon realized that my anger distracted me- I ended up taking the wrong bus and then hopped off and went into a Chapters (aka Barnes and Noble). I picked up Brene Brown’s newest book, Rising Strong, and then hopped on ANOTHER wrong bus. GOOD HEAVENS!

I finally hopped on to the Skytrain and found that all of my pent up emotion was starting to come out in small seizure like bursts. I was sitting down next to a dude, and then I leaned to my left ON TO HIM and started to seize. It was a short seizure, and I embarrassedly explained to him that I have seizures. Thankfully he took it well.

That evening was a mess of more seizures. Today I lay in bed on a Sunday evening, where I slept soundly until 3pm. Today I have not left my house. Now one thing is very clear to me: Epilepsy is one hell of an isolating condition.

It is easy to not leave your house in fear of a seizure. This is for injury or for fear of embarrassment. To look like a fool. An outcast. You look ridiculous. All of that attention was not warranted when you toppled over. You just want to be normal in the world.
Even if you WANT to be part of the camaraderie that life has to offer, you might be too ill to jump up and join in. I am an extraverted person, so this can be very hard to take. I miss my friends. I stand by the river and watch.

This. This is the Isolation of Epilepsy.

Dear Epilepsy: Am I Down Because of You?

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Hey Friends,

In the midst of October, as the weather changes and gets cooler, the days are shorter, I feel myself starting to feel less motivated and excited about life. Why is this? Maybe because it’s colder, and less time is spent outside?

I really don’t understand though. I will be very excited and motivated about something before I fall asleep, but in the morning it is hard to wake up and get going. Last night I had exciting plans to coordinate teaching Seizure First Aid with my old high school, and it got to be so late today that the school is closed.

Does my mental health have anything to do with my Epilepsy? Or is it separate? November is a hard month for me because in November of 2014 the Neurological Hospital told me that the results to all the testing I had done was inconclusive. That really sucked and took me a long time to get over it. I know it is not November yet, but it is often the hardest month for me. Ironically, it is also Epilepsy Awareness month! Hah.

So I am not sure if this is a short term thing, or ongoing, but I thought I would tell you where I am at.

Lots of love,
Sita Gaia xox

One Hell of a Weekend

Hey guys,
How are you doing?? I hope you are seizure free, wherever you are. Whether it be for a few days, hours, or weeks. Sending you love.

Sobaby to preface this, my Sunday was actually more h*ll-ish. I actually can’t remember what I did on Saturday but I think I was seizing and sleeping.

My family is wanting to adopt a kitty, so while we were on the way to the SPCA I asked if we could stop for some Starbucks. Firstly, because it’s fall, and secondly, Pumpkin Spice. Duh? I also got my mum a small coffee which I was happy to do. I remember putting the Pumpkin Spiced Latte down on the little table where you get the lids and milk and the last thing I saw was my Pumpkin Spiced Latte. After that, I blacked out, and according to my mom, picked up my coffee, started walking towards her, stopped then fell backwards. Yup. With Pumpkin Spiced Latte in hand. 3 People in the Starbucks were quick to respond and phoned 911, whilst my mom tried to wiped off all the coffee that had splattered on my face with her scarf and sweater. The Fire Fighters were the first to respond, and I had to hold up an ice pack to my face plus a towel filled with ice-cubes to try and ease the pain.

Thankfully, there were no blisters, which means I didn’t get first degree burns. I am SO thankful. BUT my face does have a coffee like residue on it. It has a brown splatter on it by my cheekbones near my eye. Thankfully I have great reflexes and squeezed my eyes shut, so no Pumpkin Spice got in my eyes.

These types of accidents are traumatic and can make me feel sad. Like, Oh F*** I can’t even do something as normal as get coffee. It also makes me question my safety and I feel uncomfortable travelling in unknown places on my own. Like my friend put it “You are safe, but rattled”. Which describes PERFECTLY how I feel about the whole situation.

Love you all.

Be safe and be well!

Sita Gaia xox

Wonderful TedxTalk about Chronic Illness and Media!

Hey guys! I just wanted to share this wonderful TedxTalk that explains so eloquently why Chronic Illness and Social Media when used purposefully are so helpful. This is why I created this blog, Life at Full Volume, because I was lonely and didn’t think that anyone else out there was going through what I was, or could even understand it.

Boy, I was wrong. Thank you for reaching out and supporting me these last 4 years (and more to come!)

Enjoy the tedxtalk!

TedxWallaWallaUniversity

My Identity is Chained to Epilepsy?

unhappy-coffeeHey friends! Happy Labor Day! If you are enjoying this Holiday, thank a Union worker who made this holiday possible.

This past weekend I have been more tired than I have ever been in my life. I ended up sleeping for several days. I have had some of my medications increased, which has increased my fatigue. Coffee is now my best friend. I am going to contact my Neuro’s Nurse tomorrow to express my concerns with her.

Lately though, I feel my identity is chained to my Epilepsy. Over the past few years, I feel as though Epilepsy has become my identity. I am happy to advocate on behalf of people with chronic health issues, but that’s all that I am now. Before my seizures were bad, I used to be a student, a health nut, and I LOVED to dance (specifically Zumba). My seizures have decreased, but that is due to the increase of medications which are making me tired like you might not believe.

I feel like it is easy for a person to lose sight of who they are. In my case, I feel tired all the time and I can’t really talk to others about things that are NOT related to my health.  I love fashion, clothes, and styling outfits. I probably got that from years of watching What Not to Wear. Lots of physical activities I used to do I can’t do anymore. My health has been in limbo for 5 years, which is hard to manage.

I’m in an unhappy place right now. If you have Epilepsy, know you’re not alone. If you are a friend, spouse, sister/brother, etc just try to understand that we can go through these rough times.

Lots of Love,

Sita Gaia xox