A New Year, A New Frame of Mind

181058847489455580_8tOVoPTS_b2013. A brand-spanking new year. Everything feels fresh, just the way I described my mocktail to my friend at new year’s eve dinner. You have twelve whole months ahead of you to do whatever you want: maybe you will take that trip to Vegas with your honey just like you always wanted, or maybe you’ll bite the bullet and work on losing those stubborn ten pounds that won’t seem to move no matter how hard you have been working out. There is something about a whole new year that fills people with a zest for life that they sometimes lose through the mundane tasks of daily living.

I love the new year, because I also feel like it gives me a whole new lease on life. This year especially, I feel optimistic about becoming a healthier, and therefore happier person. If I am going to be totally honest, 2012 wasn’t a bunch of roses. I mean, I was in denial about it being awful for the majority of it, but I can’t remember going through so much struggle in one year in my life. I find struggle has its way of spacing itself out, so when I got hit with it all in one year, I didn’t really know what to do with myself. Blah blah, we get it. 2012 was rough, cry me a river, life is tough, get a boat and paddle upstream.

154896_406574619419501_857330218_nOne thing I take issue about the new year though, is this idea is ‘New Years Resolutions’. I take issue with it is because the idea of ‘Resolutions’ has a slight negative connotation to it. The Merriam Webster dictionary defines resolution as ‘the act or process of resolving’. Many new years resolutions are about changing so-called bad habits, such as exercising more regularly, quitting smoking, or eating less sweets. All of these are great resolutions! Don’t get me wrong! One thing about making new years resolutions at the beginning of the year is that many people are filled with this zest for about a month, and then give up because they slip up once or twice and figure what the hell!? There’s no point in continuing! (This is not to say that everyone is like this. This is just common among many).

Anyways, my way of making changes this January is to make New Years Goals. If I focus on my New years goals in a step-by-step approach, it is more likely that I will achieve them. Also, if I am realistic and focus on my goals on a weekly basis, I am more likely to continue. I also think that New years goals seems more attainable, and by breaking it up into tinier chunks of time (weeks, months) goals are more attainable. I also feel like I am doing positive things in my life, I just need some structure to make it better for a healthier life.

For example, this week’s goals is to go for a walk three times a week, meditate three times a week (for 10 minutes each) and meet up with a friend who I haven’t seen in ages. The goal is to build upon these goals, such as in the weeks to come I will walk four times a week, meditate three times a week (for 20 minutes) and find new other interests and hobbies to keep me busy.

207610_470938086282227_543317739_nThese baby steps will bring me a slice of health, for it will build up my strength and I will be able to exercise more regularly, and hopefully the meditating will make me feel more relaxed. I have been an active person before all these seizures, and have loved everything from working out to Zumba to running, so walking is a good step in the right direction when trying to exercise when living with uncontrolled seizures. Also, I really hope that meditation will become part of my daily routine and I won’t even think twice about it. It will become natural and easy, like brushing my teeth. I’ll have to keep you updated on it.

This is only a snapshot of my goals. Some of them are short term, such as the ones listed above, and some of them are long term. My longer term goals are to accept my epilepsy for what it is, and that it is a chronic condition, which means that it is never going to go away, even if it is well controlled by medication. This is going to be a large pill to swallow, because even though millions of people live with chronic conditions, I have never identified myself as living with a chronic condition. When the seizures are out of control, it is an upsetting and uncomfortable reality that I have to stare in the face. I haven’t figured out how I am going to accept it, but I’m sure over time I will figure out some techniques. I’ll keep you posted.

379512_414282185315411_1072952710_nThese are all short term goals, but over time, I will be able to build on to them. Of course, these are dependent on how well managed my seizures are, but one of my major goals for this year is to maintain a positive attitude, and to not let the seizures run my life, and more specifically, my mind. I’m not going to be a nitwit about it. I mean obviously if I’m ill, I will stay home and let myself rest.

Finally, need I say more, but I want my seizures to get under control so I can live a ‘normal’ life again. There would be nothing more rewarding than that.

Toodles. xox

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2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,200 times in 2012. If it were a Dreamliner, it would take about 5 trips to carry that many people.

Click here to see the complete report.

Feeling Lonely

Tonight I’m feeling lonely. And awful. I feel like I’m just sitting around recovering and focusing on my health while my close friends are focusing on their degrees or are already pursuing jobs in their field. I feel like I have nothing to talk about besides my health. This isn’t true, and I know that taking this time off is going to benefit me in the long run, but it’s hard because I feel like I’m in limbo. I see progress with my health but it’s little by little. All of this is a waiting game. Is that a good way to look at it? Maybe, maybe not. Who cares. It’s how I feel. On my good days I feel excited about my plans for the future. But today I had no energy for excitement, and no energy for future prospects. I just was.

cup of coffeeLast night (Monday) was not one of my best nights. I have developed some sleeping problems as a result of one of my medications, so I have started a routine of drinking chamomile tea at night, which really seems to help my sleeping problems. Unfortunately, there was no more chamomile tea left in the house, so I was left with a mulled apple decaf tea. (Which is actually quite good, but not quite as good when I was really looking forward to my cuppa chamomile). Anyways, I didn’t mind too much…I read late into the night, and had a couple of seizures , but they were very mild so I wasn’t too bothered. If you had seen it, I basically placed my book on my face (this was an uncontrolled movement) and felt the electrical activity happening in my head. Weird, I know. But, this is progress. No rigid or shaking limbs. Yay. When I finally turned out the light is when the real trouble happened. I had seizure after seizure, which is awful, because it will wake me up each time, and although the seizures are getting less intense, I must have had “too many to count”, as I’ll tell my parents on a bad morning. (Unfortunately there was a lot of shaking this time, which is what woke me up each time).

Anyway, I was basically an exhausted wreck when I woke up, so I figured I’d spend the rest of the day in bed. It was just one bad day, I know, but I just feel lonely, and it’s sometimes hard to articulate my feelings about it. I also don’t want to feel like I’m burdening others. (By the way I’m being a total hypocrite here. I just told someone today that they shouldn’t worry about burdening others when talking about their emotions. Whoops.)

I guess that’s the good thing about blogs. It’s a way of organizing my thoughts and feelings but I have to work at my posts because I know lovely people like you will read it.

Anyway, some days I feel fragile, but I just want you to know that I’m trying my best. It’s awfully hard sometimes but I really am. xox

UPDATE!!!!!!!

Hey guys!

nic_gingerman_hatI know I haven’t posted in over a month. I have been going through a ton of changes, and I haven’t really been in the mental space to share them with everyone and anyone. I figured I might as well get back on track though. I am starting to feel more like my old self. I am doing some ‘bio feedback therapy’. This kind of therapy doesn’t involve talking at all. It’s all about strengthening different brain waves by doing neuro puzzles on a computers at a doctor’s office. Sound crazy? It kinda is. I’ve had five sessions so far. They’re pretty cool. I am getting out as much as I can. Seeing friends has been quite therapeutic, and they’re all really supportive which has been great. I’m pretty excited for the holidays! My family isn’t super crazy wild about the holidays, we’re just more chill about the holidays which is nice.

Last night I watched “Love and Other Drugs” with my Mom. I had seen it before, either on my trip to Vancouver or my returning flight to Ottawa. Either way, all I remember is that the first time that I saw it was on a teensy Air Canada screen. It stars free loving Jamie Randall (Jake Gyllenhaal), who is trying to make it big in the drug rep world. Jamie has the reputation of floating from job to job without going far, but there’s something about this job that seems to click with him. Of course this movie isn’t all inspiration. Jamie is a bit of a “woman lover” (my blog friendly way of saying that he loves to get it on with women). His tactics even mystifies his drug rep, Bruce (Oliver Platt Who is also in “The Big C” which is on Nettflix and you should check it out if you haven’t already!). Everything changes when Jamie meets Anne Hathaway’s character, Maggie Murdoch. If you haven’t seen the movie, I will try not to give away too much. love-and-other-drugs-movie

At age 26 Maggie has been diagnosed with Parkinson’s disease. (Which is extremely rare. Usually only adults in their fifties are diagnoses with Parkinson’s unless it runs in the family). Jamie finds himself falling for her and Maggie finds herself angry that he keeps sticking around because she is getting sicker and sicker. According to the premise of this film there is no cure for Parkinson’s, so I can understand why Maggie would distance herself from a romantic partner. But anyways, Jamie is confused as to why Maggie doesn’t want him around. Although I am not dying, not in the least, I found that I could relate to Maggie’s point of view.  There have been times where I didn’t know why my boyfriend would want to be with me when I was constantly having seizures, and my life had been diminished to hanging out at home, cancelling plans, lying in bed, having mental breakdowns, and sudden hospital visits. Why would anyone want that? If you know me well you will know that I will argue that I never want to be reduced to my medical condition. I hate being referred to as an ‘epileptic’ because I feel like it makes me sound like a brand of person. I also just think that the word itself sounds harsh.

But you see what I did there? I just reduced myself to a medical condition on my own. I didn’t have anyone do it for me. My boyfriend sees me as a person way beyond the epilepsy. Jamie saw Maggie as a person beyond the Parkinson’s. So I guess in a way, seeing the movie was a good way to see the ‘other perspective’. My boyfriend doesn’t see the epilepsy as me. He wants to help that little aspect of me, but he sees ‘Me’ as something way more than just a chronic condition. He sees me as Sita, being awesome and amazing, funny, silly, pretty, smart, all of those things that you would want in a partner. Even though it was a romantic comedy, I would argue that the medical aspect and Anne Hathaway’s charachter brought it to a different level. Grab some friends, convince your girlfriend, boyfriend or spouse, get some wine and cozy up and watch it. It’s a pretty good movie. Oh, and be sure to tell me what you think.

One of the most recent photos I could find that wasn’t a selfie. Hope you’re doing well!! xoxo

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A Prelude to My First EVER Guest Interview!

NEWSFLASH! Hey guys! I have exciting news!! I will have my first ever guest interview  in the next couple of days. For those of you who want a little prelude to the interview, here ya go:

Friends. There is something amazing about the true friendships that we make through mundane and day-to-day events, such as going to school, work, and picking up an afternoon espresso at the coffee shop. I was lucky to meet my friend Shari though one of my women’s studies classes this year. The class was awful and I’m glad it’s over but Shari is amazing and she is always there to hear me out and offer a kind shoulder to cry on. One of the first times that I told her about the Ep she told me that her other good friend had epilepsy too. It seemed almost amazing to me. I had to meet this friend of her’s. I’ve only met one other person with epilepsy and I needed to hear more.

A month ago at Shari’s birthday I finally got the opportunity to meet her friend, Karen. It was a little weird. I didn’t know if she knew I had epilepsy, and if she knew that I knew she had it too. Although we were among people who were kind and caring, I decided not to bring it up. Sometimes I don’t know how to gauge social boundaries so I just left it, just in case it might be a really awkward thing to talk about. Some people are very open about their medical conditions, but others would rather leave it. I wasn’t sure if Karen was one of those people or not. Even though I didn’t know much about Karen, I had this intuitive feeling that we had more in common than just the epilepsy. I had no evidence to back it up, so I decided not to say anything. I just enjoyed the evening out, and celebrated Shari’s 21st birthday with her.

Since I had only met Karen once, (well twice if you count seeing her in passing), I never really had the opportunity to talk to her. Well we did talk a bit here and there, but it was all surface conversation. We related in the sense that we are both studying social work and have Shari as a mutual friend. If you know me well, you will know that I generally have deep and intense relationships with my friends. I wanted to know more and I wanted to know if we could relate because of our epilepsy. I figured I would take the matter into my own hands and use social media to talk to her. This is the great thing about technology: you can talk to people who you barely know and strike up a perfectly good friendship. This is what my facebook message looked like:

Oh hey this is Sita I dunno if this is awkward for you but I have epilepsy and I know you do too so would you want to talk about it? Sorry and I understand if you don’t want to.

Okay, it wasn’t that awkward but you get the drift. Thankfully Karen is also studying Social Work, so she understands the whole concepts of boundaries and how I wasn’t trying to make her feel uncomfortable. She “talked” (we were on facebook chat) my ear off and told me all about her epilepsy and the types of seizures she has. The seizures are not like mine, but they do have an impact on her life and she expressed the embarrassment of having seizures in public. She also expressed empathy to my situation, and I knew that she had felt the same frustration that I am currently feeling. As we kept talking I started to develop some ideas. I know everyone on this blog has heard my point of view of what it’s like to live with epilepsy, but wouldn’t it be amazing to hear Karen’s story? I think so!!

Anyways, my point is, Karen has agreed going to be featured in my first ever guest interview on Life At Full Volume!!!!! My hope is that I can help people share their experiences with epilepsy, and that Karen’s story will resonate with people with and without epilepsy.

Keep your eyes peeled for my interview with Karen in the next couple of days. Love you all xox.

Adversity: One of Life’s Greatest Teachers

   So I haven’t written anything in awhile. Since I’ve gotten out of the routine, this process feels like unfamiliar territory. There is so much going on in my life, and there are so many thoughts bouncing around in my head, but I don’t even know where to begin. I’ve had several days on my own to think and some nights I have laid in bed, just listening to the sound of the rain.(Don’t worry, this isn’t going to turn into an Adele song. I just really like rain).

I am still struggling with this daemon called Ep. My seizures have started up again and even though there are some ideas as to what is causing them, I am finding it hard to wait for the solutions. I feel like I am constantly waiting for answers and waiting for solutions. It is so difficult waiting to see a doctor, waiting to do tests, waiting for the outcomes of said tests and waiting to see if the increase in the dosage of my medication is helping. This part of the recovery makes me feel like my life is on hold. I’m trying to go with the flow, but it’s hard knowing that my friends are out there having busy and exciting lives while I’m sitting around, just waiting to figure out the mystery of these seizures.

  I am also frustrated because although I have been feeling fine for the past few days, and I feel fine as I type this out, I can’t rely on my body to be strong and healthy. I went out for a short walk this afternoon, and even though I wasn’t alone and I wasn’t far from home, I still felt anxious about what could happen. It’s also hard not to feel isolated, because I can’t go anywhere on my own, just in case I end up having a seizure. I really don’t want to fall on the pavement and smack my head. It’s happened before, but I don’t want to end up with a serious injury that could compromise my future. Nobody has forgotten about me, but there is something about not being able to go out into the world by myself and do whatever I want. Further, my life has turned into a preparation for a bunch of what-ifs. Let’s be real here people: living in hypotheticals all the time isn’t really a blast.

Despite all of this, I am starting to subscribe to this idea that my struggles with epilepsy are happening for a reason. I need to stop resisting the plans of The Universe and go with the flow. I am generally not a religious person, but I have become more spiritual since the beginning of my struggles. People tell me how strong I am, but I honestly know no other reality. These are the cards I have been dealt and I trying my best to work with them. I’m not saying that trying to accept them makes it a breeze, but it makes it easier in dealing with adversity. It also makes me feel like I have some sort of control over the situation. Having some semblance of control helps just the tiniest bit. I can also say with pure conviction that ruminating about past events in my life and worrying about my future just makes me feel terrible, and makes the current situation worse. Plus, it puts more stress on my mind and body, which makes the probability of having a seizure much higher.

Even though it sucks to think that I have had so many issues with my health over the last year, it gives me comfort that maybe there is a plan for this in the end. Maybe these struggles will help me in aiding someone else in my career in social work. Or, maybe the strength that I have gained from these experiences will give me better self-acceptance and help me in overcoming adversity that I will face in the future. I just hope with every morsel of my being that there is a use for everything that I am going through. Additionally, having my friends, boyfriend and family close by during these tough times makes it so much easier. I think it would be a million times worse if I had to deal with all these seizures on my own. I guess tough times are a real test of your relationships with friends and family, and I’m happy to say that I’ve passed the test. Thank you so much for reading. Love you all xox

A Blog about Living a Whole Life With Epilepsy