Tag Archives: Chronic Illness

Living with Epilepsy, Mental Health

4 Reasons Why Self Care is Hard

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Hey bb’s!
I am sure you have heard about self-care, (especially if you have a form of chronic illness), and have been told to practice self-care. In my Social Work degree, the idea of self-care was beaten into us. But what is it? It is the way of taking care of yourself when you need down time or are feeling symptoms due to your illness. (ie Seizures, exhaustion, flare up, hard to walk, etc.)
self care.jpg1.You Feel Selfish
Taking time for yourself to recharge or just tell your partner or friends that you cannot do much one day feels crappy. It feels weird sometimes to say “Hey I can’t come out and meet you because I had a really bad sleep and pushing myself would be too much.” I am lucky that my fiancee is super supportive and understands that some days I can’t do too much.

2.You Miss out On Social Events
Sometimes when you need some good self care time, also happens to clash with social events that you were looking forward to. This year I missed my own birthday party due to Psychogenic Non Epileptic Seizures. I was super bummed because the majority of people were actually attending! It was for the best though, and thankfully it wasn’t on my actual birthday.

3.Sometimes you don’t know *how* to self-care
Prior to getting many seizures, I wouldn’t be able to tell you what is in my self-care toolkit. (Stay tuned to find out what they are!) It can be difficult to figure out what the best self care options are best for you. For a person with a chronic illness, it can vary greatly, as everyone has different abilities. Going for a short walk might be good for me but not so good for a person with arthritis who is experiencing a flare up.

4. Your Self-Care can seem “lazy”
if You need to rest in your home without doing much, it can feel like you’re being “lazy”. As a person who never, ever wants to be called or labelled as lazy, this is a very hard one for me. When I legitimately need down time, I wish I could have done more around the house, and it makes me feel bad when I haven’t pulled my weight when my fiancee comes home. Although she understands, I am very hard on myself, which drives me crazy.

I’m having a self care day, so I have been thinking about this a lot. I’ll be posting about my own personal self-care toolkit soon so stay tuned!

Love,
Sita Gaia xox

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Living with Epilepsy, Mental Health

The Holly hell of The Holidays

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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 😉

Fashion, Living with Epilepsy

How Fashion Empowers Me

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Hey BB’s,

Simplicity - Copy

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

Living with Epilepsy

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

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Hey Boo’s

woman-feeling-amazing-amongst-a-field-of-flowers
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 with Epilepsy

Living Chronically ill With Awesome Fashion

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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

 

 

 

 

 

 

 

Living with Epilepsy

Epilepsy: Stepping Up and Taking Responsibility

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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?!! 😀

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
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