Tag Archives: seizures

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

Blog Feature, Living with Epilepsy, Mental Health

The Isolation of Epilepsy

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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.

Living with 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

Living with Epilepsy

One Hell of a Weekend

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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