Category Archives: Living with Epilepsy

Posts on living with epilepsy

Living with Epilepsy

How Disability Support Keeps the Disabled Poor

Leave a comment

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.  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.  Are you on disability? Do you feel the same way?

Love,
Sita & JoJo

Living with Epilepsy

I Look Hot; My Body is Tired 

1 Comment

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 

Living with Epilepsy

When Chronic Illness Gets too F*cking Real

1 Comment

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

1 Comment

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

Life at Full Volume, Living with Epilepsy, Mental Health

My Biggest F*cking Aha Moment

7 Comments

Today I had the biggest fucking aha moment. I was standing in the kitchen with my mum, after a dinner that my dad had prepared.

I have been going through a rough patch recently, with constant low mood, which has put a damper on my every day quality of living. On some days it is an accomplishment if I make the 15 minute walk to the Starbucks near my house. The depression feels like it eats me alive sometimes…and although I don’t lie in bed and cry, my body feels numb. I can’t feel anything. I tell people that the mental health aspect of the epilepsy is harder to deal with than the epilepsy itself. I have burnt myself with hot tea due to a seizure. No problem. I was able to rise from the ashes like a phoenix with four months of bandage changes, and a period of time on morphine and Tylenol Arthritis. The physical pain was awful, but I could still get through my every day life.

I have gone into a tail spin when I saw that a peer has gotten their Master’s degree in Social Work. As I told my mum so many times, “This wasn’t supposed to happen!” I wasn’t supposed to have my diagnosis changed to Refractory epilepsy. I was supposed to be normal, able to go out without worrying about what people will think when I ask for the disability seat, and not feel like my soul is drowning in depression on the really bad days. You can tell it’s been a bad time when you see me in the same outfit multiple days in a row, or when I need to put clothes on the floor near my bed so I can easily reach them when I have zero motivation to do anything.

Regardless, while we were in the kitchen, my mum put her hands on my shoulders and said “You are doing so, so, well. For someone in your situation, I am so impressed.” I was flabbergasted. What? I was doing well? ME!? On the days that I hide under my covers? The fact that I am not independent? “Yes,” my mum said. “You still get out there and socialize, and you ask for help when you need it. You could just be in a hole, but you make the effort not to be.

WOAH. My mum is right. I could just hide and be in my own little world. I’m not though! I am taking a pre-requisite at a community college, am an active co-organizer of a queer women’s Meet Up group, see friends, practice yoga, ask for help when I need it,  and spend time with my family….to name a few things.

Holy shit guys, I’m not letting life pass me by! I am living it- chronic illness and all!! I am not a failure!!

Love,
Sita and JoJo xox

Living with Epilepsy

Finding Mentors Through My Friends

5 Comments

15338761_10154262379411925_743627914102019830_nI am continuing on with the “Mentors in My Community” theme. This week I am looking at mentors in my personal friendships. This was a particularly hard one, as it was hard to choose just *ONE* friend who is a mentor, as ALL of my friends are mentors in one way or another.

I met so many new friends this year, who have had such a positive impact on my life.  I met my good friend Kathy at a Femme Friday meet up, which used to occur at this cute little Cafe- for all female and femme LGBTQ identified women. It was one of the more casual evenings, and one of the organizers was reading her tarot cards as that is something that she is skilled in. I brought some of my mum’s tarot cards- not because I can read them effectively-but because I thought they were fun. I ended up reading a tarot reading for everyone at my side of the table, which included Kathy.

Kathy instantly reminded me of one of my friends from Ottawa: charismatic, friendly, and had a presence. Oh boy, she has a presence. We soon realized that we both had a love for tea, so after that evening we arranged to go her favourite tea house where we drank cup of tea, after cup,  after cup.

It also became evident  that Kathy was greatly involved with the LGBTQ community here in Vancouver, as I would bump into her at Pride, as well as the Vigil for Orlando. (RIP). Kathy helped me understand my orientation, and even though there are still tons of question marks, she gives me advice when I want to talk to a lady that I fancy for the first time. It helps that she knows practically everyone, so she has a connection to mostly everyone I want to talk to.  She understands her orientation better than I understand mine, and although I am not upset about my orientation, I get very confused at times. Kathy will listen patiently, and even console me when I feel like no one will ever want to be with me. “Girl, you have girls falling all over you! What are you talking about?!” She’ll say to me. Her comments assuage my insecurities.

Today we are organizers for a Lesbian meet up here in Vancouver, for women in their 20’s, 30’s and youthful 40’s. Kathy feels like one of the older sisters that I never had, and I know that she will protect me if something bad ever happens to me.

I am so grateful for Kathy’s loyalty, protective nature, and honest friendship. It means so much to me!

Who is your Mentor out of your friends??

Lots of love,
Sita and JoJo xox

Living with Epilepsy

Finding Mentors Through My Community

Leave a comment

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.