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Living with Epilepsy, Mental Health

The Most Pervasive Problems with Epilepsy and Mental Health

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Hey bb’s!

How was your weekend?? I hope you weren’t working all weekend! I got to spend some time with my Boo and we got her some “non work clothes” for the weekends. It was fun! She got some super cute work out clothes and some chill clothes for around the house. She works so damn hard, she totally deserves it! Also, I was nominated for two categories in the WEGO health awards!! Click here to nominate me!

I wanted to write about emotions regarding seizures. At first I thought, “Hey this will be a piece of cake!” I totally get what it’s like to have emotion shifts after seizures, but after doing some more extensive research, I realized I was in way over my head.

Sadness after seizures is more detailed than I thought of it to be. Through my research, it  brought up feelings that sometimes pop up throughout everyday life, and memories of feeling sad after a seizure. Regardless, I am going to break up the sections of  Emotions before a seizure, After a seizure, and Medication & Genes.

Before a Seizure
Some people with epilepsy can feel irritable, anxious, or depressed up to days or weeks before the actual seizure occurs. I know that for me, I definitely feel depressed before a seizure occurs. Although it is tricky; I need to always assess these feelings and see if it’s an episode of depression coming on, or just an aura.
In addition, your neurologist or epileptologist may have told you that stress, lack of sleep, memory problems, and low self esteem lead to a higher risk of seizures. All of these combined can contribute to poor mental health, which could trigger a seizure, or is especially felt after a seizure.

After a Seizure
Lack of memory of what happened during the seizure can trigger sad feelings. This past Friday, I had four black-out seizures which made me very sad and  overwhelmed.
Not knowing what happened can be very concerning.  Additionally, if you do not have a good support network, having seizures can be very difficult. I am lucky in that I have a strong support network of my Boo, my nuclear family, and friends. If a person doesn’t have that support network, it can make having seizures that much more difficult. This also ties into a work/life situation. Sometimes having a seizure can make you recall that you are not able to work, do not have good support systems, and are alone.

Medication and Genes
A side effect of your anti epileptic drugs may cause depression and or anxiety. I checked all of my medication and common side effects do not cause depression or anxiety for me. I take Clobozam, Tegretol, Mysoline, and Cypralex. I do experience lack of appetite from my medication. Although if you have genes of family members with depression or anxiety you are more likely to have depressive episodes and or anxiety.
My mum experiences depression (less so these days) so I believe that was genetically passed down to me. I am also very hard on myself, so that really doesn’t help. I don’t solely blame my genes for depression, as I do have other factors going on, such as being unable to work.

I definitely have low periods, and I am working harder to express my emotions and let myself cry when I need to. It is very hard because I have been told for a long time that I am very strong, which I interpreted as being able to handle anything. I also interpreted that as not showing too much emotion, which has been bad for my overall well being. I am lucky that I have people to talk to, and especially people whom I know love me unconditionally plus friends with chronic illnesses.

I need to find more support groups in my area, that deal solely with epilepsy. I know there is one in my area, but I just need some courage to go.

Love,
Sita Gaia xox

 

 

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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

Living with Epilepsy, Mental Health

Sita Gaia VS. Anxiety

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Hey bb’s,

Stressed-out-anxious-woman-980x654I overbooked my schedule this week and now I am exhausted. That caused two seizures so now I am too anxious to leave the house. This is so shitty when it gets like that. I had plans to see my mum and get pedicures for an early mother’s day gift, see a friend who is going back to the UK forever on Saturday, and help my fiancee with groceries.

Let’s say one thing: sometimes I go into overdrive and feel I need to be as “productive” as a person without a chronic illness. That’s what fucks me over and I still haven’t learned the lesson, but sometimes I still feel the need to do try harder and harder.

Honestly, all I wanted to do was see Melissa McCarthy’s new movie tonight and chill. Yas I love her, as she is fucking hilarious.  I rewatch her really old show (that, let’s be really is problematic) Mike and Molly because it’s funny.

I hate the anxiety that comes with epilepsy. Yes there are tons of things that can combat it, such as meditation (and I meditate daily), but it’s a reality. I know that. It pisses me off. I hate staying at home all day as I at least like walking down three blocks to the Starbucks but it makes me anxious, and my fiancee anxious. Yeah, I know that dwelling on it doesn’t help, but I’m not happy with how my day is turning out.

Lots of love,

Sita Gaia

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.

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

Clicking in My Cowboy Boots and Feeling Exhausted

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IMAG0537Hey everyone! I hope you had a great weekend! If you were working then BOO! Sorry to hear.

This past weekend was the screening of a mental health doc that I took part in with five other youths, over a three month period. I was very anxious to see it, because although I had watched it before there is a part with me at the end that is very intense. I wasn’t sure how my boyfriend, friend, and family would respond. It was a very exhausting experience, because I and the other youths (we were actually all young adults, but whatever) were asked questions and there was ongoing applause which made me feel uncomfortable. It felt weird for being commended for being so authentic, when all that happened (in my mind) was that I was horribly miserable and depressed for months.

I finally gave in to anti depressants (or “happy pills” as I like to call them) and once they kicked in I stopped feeling so unmotivated and stopped beating myself up over things that I couldn’t control. The epilepsy is something that I beat myself up about because despite having Refractory Epilepsy, I feel like I shouldn’t be living at home, have a job, and be doing all the other things that I consider a “successful” person to be. I need to stop comparing myself to my past self, and focus on life, day by day. I think about things that I am grateful for-  such as my little JoJo is curled up on my bed with me which is really nice. I also have an amazing family, boyfriend, and friends. I also have you, because you have taken time out of your day to read my life experiences.

Unfortunately I will not be able to share the mental health doc with a link on here, as the filmer wants to submit the documentary to different film festivals. I never really thought about how my face would be an example of mental health, and that people in other cities, provinces, or even the US could see it. I look like a totally different person today, because in the documentary I looked very pale and tired. I don’t look so pale and tired these days, which is a nice feeling. Not just for aesthetic reasons, but it isn’t fun walking around with ginormous bags under your eyes and it seems as though you can barely function. Thankfully I can function, and click down the street in my cowboy boots, so that seems like an accomplishment. Wait! It IS an accomplishment! Woo go me! Hopefully the documentary will be accepted for different film festivals, and I would be very happy for the filmer and producer if that is the case.

IMAG0557_1What else is up?! It is almost November!!! You know what that means! Epilepsy Awareness month!! I got part of my bangs dyed purple just for the occasion, and I am hosting an Epilepsy Awareness party. I have to live with it 24/7, so to educate people about it is a great feeling. I am very passionate about being an Epilepsy Advocate, so I am always happy to share info with people and continue to spread the word that it is tough to live with.

Are you doing anything for Epilepsy Awareness in November? Are you touched by mental health issues or know someone who is?? Let me know!

lots of love! xox