Tag Archives: seizures

The Holly hell of The Holidays

Hey bb’s,

Holiday season is upon us! I love the holidays, despite that where I live we rarely get a white Christmas, it is still fun to put up your tree, buy gifts, and write Christmas cards.

I asked WeYou're invited to anfor  addresses for so many Christmas cards, and since  we are living strange and worrisome times, multiple friends asked why I could have their mailing address. Is sending Christmas cards that old school?! I guess so.

Since I have made multiple big changes in my life and I am still adjusting- my neuropsychiatrist told me I am not allowed to work. He told me I need to relax more, and I had to ask him what he meant by “relax”. I am not a relaxer by nature- I love gallivanting around, seeing friends, being in Starbucks, making new plans and cleaning the house. (OK it’s an apartment but it’s easier to clean than when I was living with my parents.). I also love Fri-dates and Satur-dates with my fiancee. It has been hard to relax, as I got all of my Christmas shopping done and sent out a million Christmas Cards. (OK only ten lol).

Like anything, there is always a downside to Christmas. My epileptologist told me that Christmas is the biggest time where his patients have seizures. Last year I was out with seizures for 5 days after Christmas day. I find it exhausting to do two back to back things on one weekend, and as much as I love my family, too much family time can be too much! Despite being an extrovert by nature, I get sleepy earlier than most people. I am grateful that I am in a family that understands when I need a nap. My fiancee also wants to make sure that I am not “over doing it” so for that I am eternally grateful.

If you have a personal friend or family member in your life with a chronic illness, or even mental health issues, please be mindful that we are doing the best we can. We don’t have tonnes of energy, and sometimes pain, or  feeling overwhelmed gets to the best of us. The best gift you could give us is kindness and understanding that we are sometimes extra tired. If we have to miss out on something, such as due to having too many seizures, we don’t mean to.

Lots of love,
Sita & Jojo

P.S. Yup that’s the tackyaf tree that me and fiancee have. It was my idea, of course 😉

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How Fashion Empowers Me

Hey BB’s,

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I LOVE fashion. I watched What Not To Wear with Stacy London and Clinton Kelly as I was growing up. More recently, I have watched Love, Lust or Run with Stacy London.  I love make over shows!! Although, I have had to explain to countless friends that make overs aren’t to change a person’s look, it’s to accentuate their best features which they may have been covering up.

in Love, Lust or Run, Stacy London works primarily with women, and helps them morph into a different look so they are not held back in their lives with whacky outfits.
I am by no means a model. I am 5’5 and have an average body weight (that’s another topic for a different day).

I feel strong in cute clothes and my wheels go spinning when I think of how I can pair an outfit with different accessories that I come across. I love experimenting with my clothing, but if you were to ask me to describe my style I would say it’s “edgy chic”. To me, clothing is a way of expressing who I am.  Especially with the ongoing epilepsy, it gives me a confidence boost when I am wearing an outfit that I paired together. All of my looks are very intentional, and I gain inspiration from people I see in coffee shops, grocery stores, you name it.

I love fashion because it is always changing. I also believe that anyone can look amazing at any age, shape, or size. Fashion says “Here I am! I care about how I look and present myself to the world.” It is my way of saying “Yeah I have a chronic illness but I am not giving up on myself! This week has been hard with regards to getting out of the house, but baby steps! I feel and look great today! I made it out!

Love,

Sita & JoJo

Why I Wish All of My Days Could be my Best Day

Hey Boo’s

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I have been frustrated lately because there was a big barometric drop in pressure last week, which triggered a whack load of seizures. Since I have had the VNS inserted, I have not had any massive seizures such as falling.

Last Thursday I had a pretty bad seizure in particular. I was on the phone with my partner and I started gripping the phone. She asked if I was still there, and then assumed we got cut off because she went underground. I heard her though, and due to rigidity, I fell off the chair I was sitting on. Ouch! Damn that hurt.

Seizures trigger a lot of mental health issues, such as anxiety and depression. Since I have it in my lucky cards to have Refractory Epilepsy, I am even more likely to have depression (which I do) and anxiety. Yay!

What makes me feel awesome though  is my clothing. Every night before I fall asleep, I plan my outfit. I am not the most practical dresser, so I might think of wearing a skirt when it has been raining all week. My fashion gives me confidence because I can say “Hello World! I am not feeling well but I look great!”

I know it’s unrealistic to expect every single day to be Ah-MAZING. As my coach Georgee told me, life has it’s ebbs and flows and if it was always up, we wouldn’t appreciate it so much. Such wise words! I am trying to get my a$$ back into gear, even though it’s hard with the correlation of mental health issues that come with epilepsy.

What gets YOU through the tough times??

Love,

Sita & JoJo

Living Chronically ill With Awesome Fashion

Hey guys! Boo! It’s almost Halloween!

-Friends are born,not made.- (1)It is fitting, because I’ve had a scary awesome revelation about what I want to pursue in my life.

Last weekend, I did a workshop called “Find Your Why”. Some of the principles are based off of  Simon Sinek’s thinking. -Check out some of his ideas here .The main idea being the golden circle. You operate from Why at the middle, then What and Where in the outer circles. If you think of it many of us operate from “what”. Through this workshop I learned that I wanted to empower women with chronic illnesses and make them feel amazing from the  inside out through fashion and vlogs. Wow!! I had been stuck in such a rigid idea of social work, that I hadn’t allowed my mind to wander.

Through my new business, CHRONIC FASHION, I will give style makeovers, photoshoots, and someone else to step in with hair and make up. I can also act as a coach, since I am a Registered Social Worker.

Even though I have been seizure free lately (YASS!) I totally believe that if you have an illness, dressing well can make you feel better about yourself!

If you want to follow my new business and see how it progresses, join CHRONICFASHION on facebook, and  ChronicFashion65 on instagram and Twitter!
Finally, what would you like to see as someone helping a person with a chronic illness through fashion? What would you want?

Lots of love,
Sita & JoJo

 

 

 

 

 

 

 

The Ups and Downs of my Life With Epilepsy

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Hey guys! I can’t believe that summer is over already! It feels like July started and now it’s October. The leaves are falling and after a summer of concerning fires, it is finally sprinkling rain. It feels so good to finally wear fall clothes and use an umbrella.

I was let go of my job recently, and I am thinking a lot about life changes. Is it  the field that I want to be in? Am I being hasty? Thankfully I have the most amazing mum, and we are doing a workshop together about questioning our purposes and what we really want to do with life.

I know I have talked about depression on this site before bb’s, but I am worried I am falling into another pit of depression. I keep sleeping into as late as 11pm, and on a bad day, 12pm.  My partner had to convince me to get out of bed today, yet I still brought the duvet cover to our Chez Lounge.

I feel a little empty inside. I hate it when my zest for life is gone. That’s not the normal Sita Gaia. Having a chronic illness goes hand in hand with low mood and mental health issues. Do you have a chronic illness and other low moods or mental health issues??

It is super common for people with epilepsy to experience low mood, depression, and anxiety. Even just stress can trigger a seizure. Lately I have been having facial twitches due to psychological stress. I am concerned about more stress and low mood. Sita Gaia is doing her best though, that’s all I can tell you.

I remember my old Psychologist telling me when I was going through the pits of depression-to get up and leave the house right away. Thanks Mark! So I got up, got dressed, took out the garbage, and walked 3 blocks down to the Starbucks.

I am seeing my doctor tomorrow so hopefully I will get the help I need ASAP.

Lots of love,

Sita & JoJo

 

WOAH! SO Many Exciting events!

Hey friends!

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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 blogs 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. 😉

Love,
Sita & JoJo

My award!

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 definition here.  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