Tag Archives: Chronic Illness

Epilepsy: Stepping Up and Taking Responsibility

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?!! ūüėÄ

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.

 Lots of love,
Sita & JoJo xox

When Chronic Illness Gets too F*cking Real

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

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.

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

Making Head Safety Fun!

IMAG1422Hey everyone! I have finally decided to talk about a topic that is very hard to talk about. I wear a helmet. I was super embarrassed to wear one for the past two years, so with one of my helmets I always put a toque or beanie over it. It looked ridiculous in the summer (or I ¬†looked like a hipster in a dress) but I didn’t want to reveal my secret.

When I got my first serious concussion my Mom put her hands down and said “that’s it!!” So I had to get a new helmet from¬†OptiCool. The helmet was pretty cool, as the brand suggests, but I was still embarrassed to wear it, as it made me feel like a dork.

Today, I went on a culture crawl with my Mom, and there was a table where you could decorate your own hat! Since I didn’t have a hat, I decorated my helmet! I love my helmet so much now that ¬†I don’t even want to take it off. As my friend Cimarron would say “You trailblazer, ¬†you”.

So look, safety doesn’t have to be dorky or uncomfortable. If you don’t get an aura before a seizure, you can still make a helmet fun. It’s also a great conversation starter! Also consider this- wouldn’t you rather be safe than have multiple concussions? My new and improved helmet also makes me feel stylish!!

(Here’s a side view of my new and improved helmet)¬†IMAG1421

Happy Sunday!

Love,
Sita Gaia

My Worst Experience in a Hospital

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Hey friends,

I hope you are having an amazing day. I am writing this post-ictal. Which essentially means I am writing this after having a seizure. If I regret this post later I will just delete it.

This past Monday I was in the Toronto airport, ready to head home. I was feeling confident, and remember taking a small step as I waited to go through security. Suddenly, I blacked out and was taken out of the security line. Two Paramedics were called and they came and checked all of my vitals, which ended up being okay. I was told by Air Canada that I was not fit to fly so I was whisked to the hospital. ¬†I called my friend’s mom- and after the seizure she said I was hysterical when I called. I ended up going to the Etobicoke hospital which is the closest hospital to the Toronto Airport. The Paramedics were amazing, but when I got to the hospital, I was hardly greeted by a rude nurse who mumbled his name. I couldn’t even figure it out for myself as he had turned his name tag around so I couldn’t actually see his name.

The other nurses weren’t great either; they stood around bitching about their clients instead of actually helping them. Some of the medical team did not believe that some of the seizures I had were actually seizures.

When I was on the phone with my mom I remember saying “OH YEAH. MY NURSE? HE’S A TOTAL ASSHOLE!!” Little did I know, he was right there.

Needless to say, the medical staff was useless, it was dirty, and I was miserable. I have been to many hospitals and have come across many nurses, but this was absolutely horrendous.

My friend’s Mom said she would write a letter of complaint? Will I do the same? I am not sure. But all I can say the quality of care was below sub-par.

Do you have any horrible hospital stories? Share with me!

Love,
Sita Gaia