Dear Seizures: You Get in The Way of My Life

Dear Seizures,
I just thought I should write you a letter about our relationship. Hey guess what? It’s not working for me, and it never will work for me. I get it, you’re more tame these days, which I totally appreciate. I don’t like your temper, or when you go crazy on me. Can we try to keep consistency in your craziness?? That would be much, much, better. Because of you, I have to be extra careful today and miss my dance class. I have been looking forward to this class since well….a long time. Did you know seizures that if I went to a dance class and you decided to make an appearance I could hit my head, break a tooth, or sprain an ankle, just to name a few. Do you know how mean of you that is?? Causing injury on to people? That’s not proper behavior. Get your shit together and then maybe we can talk.

Sincerely,
Me

I cant adult today

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Rant Time!! Change is Needed in The Way we See Seizure Free Days!

Hey folks! Okay, rant time.

grumpy bear-753475

I have been part of the “epilepsy community” for the past four years now (prior to that I never needed support for it) and I have noticed one prominent, bulging thing: people mark their seizure milestones of a couple months, years, etc.

I think that this is great, because if you have serious seizures to the point where you can barely go anywhere, this is a huge milestone. You have a new life! There are many young children who have uncontrolled seizures, so when I see the 3 year or 3 month milestone poster for a little girl or boy on my Facebook, it makes my heart melt with joy. I just hope for them that they continue in that direction.

But here’s the thing with me. If I am let’s say, one month seizure free but then have one bad day of 5 seizures, does that mean I have to start from scratch? I have talked to my health professionals, and they have deemed me pretty healthy because I am out and about living my life with ease. Yes. I still can’t work. See below.

So could we perhaps in some cases focus on the quality of our lives rather than the number of seizure free days? As a true hard perfectionist (not fun I guarantee you) I feel like I have “failed” my health when I have a bad day. So I would really really like it if people got on board with the idea of quality of living versus the number of days. I am sick of counting days, I lose track, and people always get disappointed when I say I was a month seizure free then had a bad day. I also feel depressed from the seizures. So let’s try something new.

Rant over.

Love you all!! xox

That Awkward Moment When People Ask Me What I do for Work

Happy-at-work

Hey friends! How are you doing?? I hope you have sunny weather, depending on where you are in the world. It has definitely been heating up where I am.

So, whatever your disability is, I am sure you can relate to this in some respect. I am currently not working, and wherever I go people ask me what I do for my job. Why, people, why?! Why are we so obsessed about work and jobs? I guess it’s because we spend five days a week, 40 hours (or more! Or less, depending on whether it’s full time or part time) at our jobs. Our jobs sometimes become our lives. We can become immersed in our work.

I can get that. People go into their professions and are highly passionate about it. I have friends who are in an interesting melange of professions: IT, Social Work, Counselling, Environmental Engineering, Midwifery, Business and so on and so forth. I don’t think my friends just stumbled on to their professions and decided to roll with it. They found something amazing and interesting about that profession that made them want to pursue a career in it. I totally believe that having passion for your work (whatever it is!) is key for enjoying it, and constantly challenging yourself. So, since I am not quite healthy enough to work full time, it can be awkward in these social situations. I have thought long and hard about what to say when someone says “What do you do??”

I tell them I am working towards a Masters in Social Work, and would ultimately like to work with individuals with disabilities. I tell them about my interest in Women and Gender Studies. It is not something I am doing right now, but they are all truths. I will be better, so I will be able to fulfill these dreams and goals. This isn’t wishful thinking, honey. I am already getting better! My resilience has gotten me far, as well as my sheer determination to never give up.

So will I have another awkward conversation like this again? Probably. Is that okay? Absolutely. It’s only awkward if you make it so.

All About ME! My Updated Story

11011290_10152736686930776_6025620169844039981_nHey everyone! I am helping out with the American Recall Centre, which is a new site devoted to inspire good health, and providing up-to-date FDA information.They are HON code verified, and focus on patient safety:  http://www.recallcenter.com/resources/

Anyways, as you have probably noticed already, my name is Sita and I was diagnosed with epilepsy at the age of ten. I’m going to be twenty five in a couple of weeks, just to put it in perspective, (for those of you who don’t know, Epilepsy is a brain disorder that causes you to have seizures). When I was a kid, I was pretty much the poster child of someone who lived with well-controlled seizures. My seizures only occurred about twice a year, and even then they were in my sleep and the worst that would happen is that I would wake up with a bloody tongue. I never felt affected by this medical condition; I just felt like I was an ordinary kid who took medication twice a day to help control these mysterious seizures that only presented themselves on a rare occasion. My neurologist (a doctor who deals with epilepsy and other brain disorder conditions) was in awe. I was going to be graduating from high school soon and I was heading off across the country to start university. She seemed to think this was a big deal! At the time I just kind of shrugged my shoulders. Wasn’t everyone expected to graduate high school and go to university? I mean, my parents never said that I had to go to university, but it was something that I wanted, and I didn’t know why it was such a big deal.

Adjusting to university life was a bit of a struggle, as I tried to balance the stress of work and becoming more independent. The seizures still occurred from time to time, but I was never really in serious danger, as they usually always occurred while I was in bed or in my room. Well, except for the time that I did a face plant because I had a seizure while running. Other than that, the ride was pretty smooth.

January of 2012 is when things got out of control. I had a couple of minor seizures, but as the months kept coming more seizures came too. It got to the point where I feared going to school in the event that I would have a seizure and smack my face on the floor. Even worse than the physical harm to my body was the shame and embarrassment I had about the seizures. If you have ever witnessed a seizure, you will know that they look a little bizarre. I started to become very worried, and ultimately became very depressed. At the time I wouldn’t have told you that my anxiety was up the wazoo and I was so far in the depression hole that I couldn’t find a ladder. I was pretty much unaware of both. Even then, I am good at putting on a good face when I have to. I didn’t want to burden anyone. Plus, I figured that I was just a tired out student. I mean, no one wants to get out of bed on a Monday morning, and sometimes it’s sometimes hard to focus in lectures. Also, students are busy, right? We don’t always have time to eat properly, or at all, which is what happened to me as I found myself less hungry for food, and less hungry for the things that used to bring me joy.

I was pretty much in extreme denial. I just saw depression as something that happened to other people. Oh boy, was I wrong. The interesting thing about depression and epilepsy is that they work together in a happy little cycle. The more seizures I had, the more depressed I became, and the continued depression would cause more seizures. I was afraid to go anywhere on my own, even to meet a friend for coffee nearby. The seizures were so unpredictable that they happened at unexpected times, which left me little to no time to get to a safe place.

This left me feeling trapped in my apartment. I hated to make plans with my friends in case I had to bail at the last moment, or I was afraid of having a seizure while I was out. I started to yearn for the days where I could leave my apartment by myself and just go for a walk without any worries. It sounds so trivial, but when I was unable to go anywhere by myself without extreme anxiety, it seemed like a distant life that was no longer mine.

This experience taught me a very valuable lesson. Never take anything for granted. Even though being able to meet up with people and enjoy time with friends sounds so trivial, it is essential for ones well-being. I can’t be alone all the time and I need my friends to help maintain the richness of my life.
Also, I’ve learned that, despite this year, I have it pretty good. Other people who live with epilepsy are unable to work, go to school, or are behind in their schooling. Some people even need to wear head protection all the time to protect them if they fall. Four years later, and I finally see why my neurologist was in awe of my accomplishments.

If there’s anything that i believe in, it’s that I believe that everything happens for a reason. (To a certain extent at least). I think this experience has taught me that I need to live in the moment, which I am working on. This is a key component of mindfulness, which is the idea that you are fully engaged in the moment that you are in, and every moment is ‘now’. I find it hard to be in the ‘now’, but part of me believes that the universe was trying to teach me a lesson when all of this was happening. I can’t skip over parts of my life. I have to live them, no matter what is happening. Additionally, many of these past few months have been very low-key for me, just to improve my health, so I have learned to find meaning in this ‘non-doing’. This means finding meaning in what I’m doing, even if it appears to be non-productive.

My seizures are getting under better control, but I still feel fatigued from all the medications I need to take. Despite all of this though, I managed to receive my Bachelor’s of Social Work degree in 2014, but as of right now I am focusing on writing a book on my experiences of living with epilepsy as a young twenty something year old, plus ultimately getting work in the field of social work. I would find it very rewarding to work with other young children and teens who have epilepsy, but I would be happy to work with people who have other disabilities or mental health issues.

I find that telling this story to people is like ripping off a bandaid. The more I do it, the easier it becomes, and the easier it is to move on and gather strength, regardless of the situation.

Keep fighting the good fight!! xox

The Effect of Poor Body Image on Relationships

cute photoHey friends! So I haven’t talked about body image in awhile, so I thought I would give it a whirl. About 5 years ago my body image was in the gutter. I was also in a relationship with a wonderful man, who cared about me like the Earth cares about the Sun. He loved me, just the way I was, but there was a problem with that: I didn’t love me just the way I was.

I would always marvel at his intelligence and would ask him to explain his homework and classes. He was funny, silly, and loved to make puns with me. You’re probably thinking, but what does this have to do with  body image? I’m getting there. Don’t worry.

My poor body image put a huge strain on our relationship. There were days when I couldn’t even cuddle with him because I felt shitty about the way I looked. He loved my curves, but some days I would just throw my arms up and say “I can’t! I’m feeling too ugly”

As I look back on this experience, I am purely awe stricken. Here was my boyfriend, who loved me unconditionally but I couldn’t reciprocate because I was so unhappy about my body image.

With a whole lot of courage from myself, as well as my boyfriend, I took up a running class. I even managed to find a running buddy, who is still my friend to this day. When I started to learn what my body was capable of, I began to think of how it functioned, and not how it looked. I saw my body as a vessel that could potentially improve race scores, and I was focused on improving my running technique.

I was elated. I consistently told my boyfriend about how I was improving, and he was so supportive all the way through.

happinessWhen I took up running, my body image issues weren’t magically cured. Poor body image is something that can take over your every waking moment of every day. During that period, there was not a period where I would wake up, swing my legs out of bed and say “Ew my thighs are gross.” I worked out 5 days a week, and did a lot of walking up and down the stairs of my university campus. (I will tell you that there are a lot of stairs!!)
I am about 25 now, and I finally feel good about the way I look., and most importantly- how I feel as a person.

I feel that it is very difficult to talk about poor body image.  without it leading to body shame. I find that talking about poor body image leads to a ripple effect: one girl says she feels fat, then the other says she is so ugly, and so on and so forth. Also one thing: one cannot FEEL fat!! It`s not an emotion!!

We need to build an alliance and stand strong together. Fat and skinny shaming is not the answer. Accepting each other, and our selves, as well as being able to talk about body image in a healthy way is key. I would know, I’ve been there ;).