Tag Archives: Epilepsy

WOAH! SO Many Exciting events!

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 blogsĀ 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. šŸ˜‰

Love,
Sita & JoJo

My award!

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?!! šŸ˜€

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.

Ā Lots of love,
Sita & JoJo xox

I Finally got The Vagus Nerve Stimulator Inserted!!!

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 definitionĀ here. Ā 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

Getting Rid of Coffee: Day 1

 

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 itĀ 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

How Disability Support Keeps the Disabled Poor

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

Love,
Sita & JoJo

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

The Power of Thought

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