Tag Archives: Depression

Living with Epilepsy

What I Want my Amazing Health Team to Know

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SpoonsFirst off, I have an amazing health team to help treat my Refractory Epilepsy.     I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing  team!

Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know.  Epilepsy is not just seizures.  Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.

I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to  make sure I have time to help my fiancee around the house and grocery shop on the weekends.

So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis.  Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know.  I am a chronic illness warrior, so I keep fighting the good fight.

Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!

Love,
Sita Gaia

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Blog Feature

Have You Fallen Into the Depression Trap?

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Halle-f*ing-luah! I made it out of the house! I have been struggling a lot with depression again as it has decided to loom it’s ugly head.
If you have never had any depressive episodes, first of all knock on wood immediately. In my talking with my mental health crap, everyone experiences it very differently.
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My depression is like a wet towel. It’s not cold, but very heavy. I mean, have you ever tried carrying around a sopping wet towel? Not too comfortable. At the same time, I don’t feel super happy or sad. I just can’t really feel anything. Ask me to meet you somewhere last minute? Forget it. It is very hard carrying my body around- and I think people feel this regardless of their weight.

My depression is a bit of a trickster. It tells me that no one likes me, and someone is ignoring me on purpose. It tells me I am alone, when in fact I have an amazing fiancee who works her ass off, parents who couldn’t be more supportive, and a brother who lends support from afar. I have friends who check in with me, and cousins I can talk to, plus extended family.

My friend Ty has been through the same stuff as I am going through, and when I was struggling to put on my shoes he said “I always know that I’ll feel better when I leave”. A mantra that I used in university popped into my head “I’ve done it before so I can do it again”. Like that, I managed to pop my feet into my ever so stylish if Kate Spade and Keds had a baby shoes, and grabbed the keys.  Oh My GOD! I made it! I probably sat there on the couch for ten minutes trying to decide whether to go out. I wanted the stimulation of other people being around, so naturally doing my writing in a coffee shop seemed ideal.

The world was a bit grey and gloomy out, but I was so proud to walk down the street. I just knew I wasn’t able to lie on the couch the rest of the day. (Even though my fiancee offered to get my blister pack, I wanted to take that task out of her day).

I know this will pass, and since I have been there before I know that for sure. So if you’re struggling, try and see a doctor (even a walk-in clinic) if you are able, and try to challenge yourself to what seems like the biggest barrier.

Living with Epilepsy

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

 

Life at Full Volume, Living with Epilepsy, Mental Health

My Biggest F*cking Aha Moment

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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

Dear Epilepsy: Am I Down Because of You?

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Hey Friends,

In the midst of October, as the weather changes and gets cooler, the days are shorter, I feel myself starting to feel less motivated and excited about life. Why is this? Maybe because it’s colder, and less time is spent outside?

I really don’t understand though. I will be very excited and motivated about something before I fall asleep, but in the morning it is hard to wake up and get going. Last night I had exciting plans to coordinate teaching Seizure First Aid with my old high school, and it got to be so late today that the school is closed.

Does my mental health have anything to do with my Epilepsy? Or is it separate? November is a hard month for me because in November of 2014 the Neurological Hospital told me that the results to all the testing I had done was inconclusive. That really sucked and took me a long time to get over it. I know it is not November yet, but it is often the hardest month for me. Ironically, it is also Epilepsy Awareness month! Hah.

So I am not sure if this is a short term thing, or ongoing, but I thought I would tell you where I am at.

Lots of love,
Sita Gaia xox

Living with Epilepsy, Mental Health

Learning to Embrace Being an Inspiration

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Hey friends! I hope you are doing well wherever you are in the world. I have been having an exhilarating week ever since TedxStanleyPark. (I will have my video up as soon as it is out!)

While I was walking my dog this evening,  I was thinking about what it means to be an inspiration and my struggle with accepting this fact. This was potentially evoked by the fact that I won an Alumni Award from my middle school that I will be accepting at the end of the month. When I was first told that I was the recipient of the Alumni Award I didn’t really know why.

When I think about the past and resisting the idea of being an inspiration, I constantly didn’t want to be seen as inspiring because I was just a “normal person” trying to get through her life. I almost resented being called an inspiration because it made me feel even more different than my peers and friends. As an Epileptic (or PWE) it is easy to feel “different” because my neurotransmitters sometimes misfire, or don’t fire when they are supposed to. (If we are going to get technical here).

After Tedx, I realized that it’s OKAY for me to embrace being an inspiration to other people. I was talking to my friend Debra the other day, and she so eloquently put it that I have not let my Epilepsy define me, and I am not going through life as a “Broken person”. I am still persisting, despite my challenges. Yeah sometimes life sucks, and I have been struck with deep depression in the past. This past week I received a bracelet from my friend that said “my story isn’t over yet” with the semicolon symbol. Not everyone knows this, but Project Semicolon is now a pretty well known symbol for to remember people who have died by suicide, and to bring light to depression, addiction, and self-harm. I want to cry when I look at my bracelet, because it reminds me how far I have come. (Thank you Rikarux and Ryan).
According to the Merriam Webster Dictionary, Inspiration has several definitions. They are:
“Something that makes someone want to do something or that gives someone an idea about what to do or create; a force or influence that inspires someone”

“A person, place, experience, etc. that makes someone want to do something”

“A good idea”

So as we can see there are multiple meanings to what an inspiration is. Now that I look back on my past with wide eyes, and to my future with excitement fluttering in my tummy, I can say hell ya. I am an inspiration ❤

SIta's bracelet

Living with Epilepsy

Hello. My name is Sita and I am an Epileptic.

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Hi Sita! I have never had a group of people say that back to me, as I have never introduced myself to a bunch of people like that. This blog is all about talking about the tough stuff. Ripping out the painful parts of your life and examining them. Were certain experiences meant to teach us something? Are we really on a track with a chronic illness? What does a track for someone who is chronically ill look like?

After moving back home when I got my degree, I slept for several months and then spent 7 weeks in hospital to try and figure out what was causing my seizures. I have had extensive testing done on my brain, and as of right now I am not a brain surgery candidate. It is discouraging. When I went to the hospital for 7 weeks last year I thought they would figure everything out and it would be a panacea for all of my seizure troubles.

I am a very extroverted person, and I will talk your ear off. Except when it comes to mentioning my Epilepsy to a potentially new friend. I have told you my experiences with stigma, and the myths that people have about epilepsy. When I tell someone new about my epilepsy, I worry I will be dropped like hot rocks. This has prevented me from continuing to try to make friends. I was also bullied through my entire schooling, except for university.

I refer to authenticity a lot throughout Life in Full Volume. Show your true colours. Tell your story. It’s just scary when you might be dropped like a rock if you are vulnerable.

Lots of love xox