Category Archives: Living with Epilepsy

Posts on living with epilepsy

Living with a Vagus Nerve Stimulator: Is it Worth it?

Hey BB’s

Living wih VNS Canva     This is almost the one year anniversary of getting my Vagus Nerve Stimulator implanted. A Vagus Nerve Stimulator (VNS) is like a pace maker, except for the brain. A little device is implanted right below the collarbone, on the left  and a wire is attached via the vagus nerve. (Which is on the left side of the neck). It is set to send little pulses at a rate that is determined by your epileptologist/neurologist. It can help to stop  a seizure, or make it less aggressive by swiping a magnet that you wear like a watch on your right wrist. I’m still waiting for someone to ask me the time as I look super rich by having an iWatch. Regardless, the pulses feel very powerful!

Is it worth it? For me, it was 100% worth it. I was at a point where my seizures were so frequent that my epilepeptologist bumped me up to Urgent, in terms of receiving it. There are only TWO doctors in the province that I live in that do it, so there was a bit of a wait, but it was worth it. My seizures have decreased a lot, and I can actually feel an aura now! I am travelling right now- and when there was a huge drop in pressure I was able to wave my magnet over the VNS device to help prevent from seizures.

The one thing that bothers me about the Vagus Nerve Stimulator is that sometimes the pulses run through my voice box, making it sound a little strangled. (This is clear proof from my Epilepsy Nurse who said she could hear a difference in my voice. I know tonnes of people think their voices sound different with no change, but there has been, my friends). It may not affect you, as you may not need the pulses turned up so high, It totally depends on case by case, and no one is a cookie cutter.

If a VNS is your best option, I would go with it! You never know how much it could change your life for the better. I know it has for me! My Fiancee has been able to stop seizures while I am having them, and I can prevent them if I feel an aura.

Lots of love,
Sita Gaia xx

PS- if you aren’t already doing so- follow me on me on Instagram @ joeyjo422 

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What Makes it Hard to Be a Kick Ass Spouse

Hey bb’s!

How’s the official start of your summer going?

I have been pretty busy with my Beyoncé Fiancée. Yesterday we were going to go downtown and do some shopping, but at the last minute we changed our minds and checked out some malls we have never been to!

I assume many of you are casually dating, married or in relationships. Since I am getting married next year, I wanted to share with you the challenges of being a good spouse while having a chronic illness.

1. Missing Out on Things Due to Not Feeling Well

I always feel so bad when I can’t go out due to seizures, crazy fatigue, or mental health issues. My partner is very understanding, and understands when we have to skip events.

2. Not Being Able To Keep Our Home Clean

Okay, I make it sound like our home is a disaster area (which it’s not!) If I can’t make a meal, do the dishes or vacuum, I’m very hard on myself. My Beyoncé fiancée doesn’t care very much, but I want things to be perfect.

3.Going to Bed Early

I usually go to bed at 8pm, straight up y’all, ( I’m trying this thing as a Canadian and trying to see if y’all works) and I meditate for 20 minutes after I get in bed. I’m pretty boring when it comes to night time. *cough* *cough*

4. Low Energy Levels

Even though I take butt load of anti epileptic drugs, I’m also anemic so when my iron is really low I can sleep and sleep. Not kidding, I slept through the yoga class I wanted to go to on Friday! I also have to count my spoons super carefully, so I can’t “over do it” with regards to socializing, exercising, etc.

5. Straight Up having Seizures

If you have seizures, you know they’re the pits. I also have psychogenic non epileptic seizures, so that can be a lot of stress on my Beyoncé Fiancée.

I know she still loves me, regardless of all these things, so to make sure both people are happy, we have an open communication about all of these issues. Honestly, talking about things is the best thing you can do.

Love,

Sita Gaia xox

Advocating for BC Epilepsy Society

Hey bb’s!

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How are you doing this Wednesday afternoon? I saw my epilepsy specialist, as it was an appointment to see how my Vagus Nerve Stimulator was working. It was increased a bit, and I told him that I have been feeling insanely tired lately. Moreso than usual, I’ve been sleeping for a solid 12 hours on some days. I was impressed that he didn’t just brush it off as recovering from my seizures last Friday. Instead he said, “Keep an eye on that”.

WOW! I wish everyone had a health care team like that and support that they could go to. That’s why this month I am working to raise One thousand dollars for the BC Epilepsy Society. That way we can support more people with epilepsy, as we are all one. If you are interested in supporting my Go Fund Me, go to Go Fund Me and every dollar counts! I was inspired to do this by my friend who raised 1000 dollars for the BC Arthritis Society.  I thought hey, if she can do it, so can we!

Any questions, their website is BC Epilepsy Society , and if you have any questions for me, feel free to leave them below or shoot me an email at sita.gaia@gmail.com

Thank you for all the support! We got this!

Love.
Sita Gaia

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

 

 

What I Keep in My Self-Care toolkit

Hey bb’s!

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I hope that you are enjoying the sun if it is sunny where you are. It is crazy sunny and hot over here in Canada, but it is so nice to see the sun.

My last post was about 4 Reasons Why Self Care is Hard. Even though it’s hard, I still do it. I am pretty sure I would be a disaster area if I never practiced it. Maybe my toolkit will help you with creating your own self care toolkit, if you haven’t already done so.

1. Meditate
Meditating is essential to my self care toolkit. as I have Psychogenic Non epileptic seizures, doing 5 minutes of meditation before bed helps to relax me and cool down my anxiety before sleep. If you’re anxious, I find that anxiety often pops up the most before sleep because the TV is off, you’re in bed, and you can  only hear the beat of your heart. (OK, that was a bit cheesy). I use an App called Insight Timer, and there are a tonne of different meditations, for different lengths. It also notifies you when you have reached milestones with your meditation, so that helps with staying motivated.

2. Apply a Facemask
My Fiancee and I often do facemasks on Fridays, to celebrate the end of the work week and also to wind down from current stressors. If you follow me on Instagram at joeyjo422, you will see that I love a good facemask.

3. Practice Yoga
This feels like a typical North American/Millenial/hipster thing to say, but I find that simply practicing the poses puts me in a better state of mind.  I hate the North Americanization of Yoga, but that’s for another post, maybe? Since moving away from my key yoga studio, I find I practice Yoga online mostly. If you want someone to check out try: The best yoga chanell!!   I know this lady in real life and she is fantastic.

4. Grab Coffee with friends
I always enjoy grabbing coffee with a friend, as I am able to catch up with them and am staying connected to my social circle. I also enjoy spending time by myself and read a good book while sipping on some java. (omg I sound so old school today! What’s going on??!)

5. Listen to Music
I feel like this one would be in most people’s self care kits. I always love waking up to Amy Winehouse, and then maybe listen to some Halsey in the afternoon. It totally depends on the vibe of the day! I also really appreciate live concerts, but those can add up in terms of cost.

6. Watch Stand up Comedy on Netflix
I got into Stand up comedy when I was super depressed about 3 years ago, with dire hopes to maybe get a laugh out of my monotone self. It was a good effort, and in that time I discovered Iliza Schlesinger. She is super hilarious and I highly suggest her newest Netflix special “Confirmed Kills”, if stand up comedy is your kinda thing.

7. Spend time with my fiancee
I love spending time with my fiancee, and doing fun things like going to the farmer’s market or even grocery shopping. She is super special and makes me really happy. I would have to say that a key part of having people in your self care toolkit is to make sure they make you happy and you don’t have a toxic relationship with them.

I think I could go on and on with regards to what’s in my toolkit, but those are the basic ones that I rely on. I also realize that self care means something different to everyone. When I was on Instagram, I saw that my friend had gone camping, and one of the hashtags she used was #selfcare. I find that super cool!  If I was able to run I would totally have running in my toolkit, but that’s off the table, just for now. What’s in your toolkit? Do we have the same ones?!

Lots of love,

Sita Gaia xox

4 Reasons Why Self Care is Hard

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

Sita Gaia VS. Anxiety

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