Tag Archives: Seizure

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
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

I Am Approved for the Vagus Nerve Stimulator!

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Hey friends!

vagus-nerve-stimulation-publicTwo weeks ago I had an appointment at one of the nearby hospitals to see if I would be approved for the Vagus Nerve Stimulator!! Guess what?! I am!!  I will be having the surgery in about three months, which I am very hopeful for. Hopefully over time it means that I can reduce my medications which make me so tired. I am sure you know what I mean. Some days I feel like a walking Zombie, so it would be great to feel like a “normal” person again. (Whatever the f*** “normal” is).

I was anticipating that the Vagus Nerve Stimulator would be inserted before the end of this year, but it’s okay that I have to wait. I mean, ideally it would have been inserted by the end of this year and it would start to work. One of the interesting things about the VNS is that it can take some time to see if it is effective at controlling seizures. Unfortunately, after the surgery, only part of it can be taken out. I makes me laugh when I look at the diagtam of someone with a VNS; it makes me feel like a bit of a robot. I guess it means when I take an airplane I will have to carry a letter explaining why I set off the machines.
In the past couple of weeks my seizures have been more active, which is hard to manage. Especially this past week my seizures have been out of control and last Tuesday it felt like someone had stuck needles into my eyeballs on top of the seizures. It has been an intense ride! It is also disappointing because I had to miss an event that my friend bought me a ticket for.

So, that’s where I am at.

Love you lots!
Sita and JoJo xox