I am officially 1.5 years seizure free. Oh yea, baby! BUT (there’s always a but), it has not been an easy year and a half. The older I get, whenever I have a seizure the more complicated it gets. Losing your license in your late 20s, is 100 times worse than before. The choice of medication and side effects become worse and harder to control (my doctor pointed out at my last appointment that pregnancy should be considered when considering medications. I don’t even have a boyfriend, so imagine my reaction to this ‘recommendation’).
I wrote a post a while ago about my seizures (original post). I don’t like it. I didn’t even want to attach it to this post. Reading it, it sounds very impersonal and textbook-ish. Not my type of writing at all. So I’m going to give it to you raw and real right now.
My seizures have been my biggest struggle I have had to deal with. I am saying this as a person who has been dealt many bad hands in the game of life. I have lived with an eating disorder, self-injury and growing up with a parent addicted to a substance. All those things I have always felt I have had some sort of control over. I could choose whether to eat or not. I could choose whether to put a blade against my skin and I can choose whether to allow this addiction ridden person into my life. But seizures I have had no control over. I had no control over the side effects of the medications, having my license and independence taken away from me or from the depression that took over me this past year.
This last seizure was by far the hardest on me. The medication I was put on, though is supposed to be the best out there, killed my spirit and threw me into a hole of darkness. I pushed away anyone close to me. Friends and family became my biggest enemy. I didn’t want anyone to care about me when I couldn’t care about myself. I have never thought of suicide more then I have since I’ve been on this drug. Watching my natural positive attitude be taken from me, and having no say over it, was devastating. A simple comment could push me over the edge. Constantly feeling exhausted from my emotions going from extreme highs to extreme lows in a matter of seconds. Sometimes staying in bed for days at a time just to hide from it all. Throwing myself at men in desperation to feel anything at all, anything but numbness.
Surprising thoughts and words to hear from a girl with a smile as bright as the sun and a laugh that echoes through your head, I know. The girl who’s nickname is “Disney World” at work. But I kept up that persona for the past year and a half, half hoping that someone would finally see past the mask and half hoping to disappear altogether.
So where can I go from here you’re probably wondering? It’s simple, just stop taking the medication I’m on or switch to another one, right? Not so simple. To keep a license, I must be on some sort of medication (or so I thought). Other medications have even worse side effects (says my neurologist) such as weight gain, teeth and gum bleeding, hair falling out, cognitive issues, etc. My body is also addicted to the medication I’m on, so to abruptly stop taking this medication would throw my body into withdrawal.
I went to my family doctor at the end of December, in desperation for some kind of help. I think she could tell by my shaking voice, that I needed something, some kind of answer other than the ones I was getting from my neurologist who had postponed my yearly checkup continuously for over six months. I think she could tell that I wouldn’t last much longer without some kind of hope that someone would fight for me, and someone in the medical world would be on my side for once. It’s surprising how fast mentioning suicidal thoughts can get you the attention you’ve wanted for the past year and a half and even though these words were hard for me to say, they were true, they were serious and they got me the hope I needed.
I am hopeful. Scared, but staying positive that I will not have any more seizures in my future. I am trying to stay as consistent as I can with my exercise and eating, which helps me minimize side effects of the medication I’m on. I am trying to only surround myself with people who lift me up and bring me happiness to cut out any extra stress and negativity. And I’m trying to hold myself accountable and mindful of my negative thoughts and feelings.
If anyone reads this and has any tips, please let me know!