Everyone Loves a Quickie!

January 28, 2013 sitagaia 2 Comments

Hey Guys! I know it’s been forever since I’ve been on here, so I thought I’d give a quick update as to what I’ve been up to.

Well, the last update was about my weekly goals and whether I was able to accomplish them because I was coming into a seizure period. I was right, I kinda did set my sights a little high, as my seizures set me in bed for most of that weekend, but I was able to get out a little bit and I did get some of my walks in. I had a really bad fall two weekends ago. I whacked my head on the wood floor, but there was no serious damage. My head is fine, there was just a little bump, and there was no need to go to emergency. Thank goodness!

Hmm…what else? I’ve been busy working on another project, which is probably why I haven’t been as spending as much time over here. I’m kinda thinking about writing motivational speeches, based off of my stories that I have posted here. Since everyone has been so supportive of my stories that I have posted on here, I really feel that a bigger audience would be interested in hearing more of my story. Anyways, I am going to be hosting a little tester event with some friends in March, so I’ll keep you updated on that!

Other than that, not much is up! I am feeling better these days. I went shopping with my friend on Saturday and was able to withstand all the stimulation in the mall and didn’t even feel very anxious in all the crowds, which was amazing! I remember going to the mall with my mom back in the summer and I was completely overwhelmed, so this was a big milestone for me. Yay for success!

I am keeping up with my exercise, and keeping my mind busy with new projects. I find it’s been really good for keeping my spirits and confidence high.

**LAST but not least, I just came across a new first aid for seizure video that I think is really stellar. There is also text instructions below the video, so you can just skim through.I thought it would be very useful, because people are always asking me what to do in case I have a seizure. Now you know! BAM! http://www.epilepsy.com/epilepsy/firstaid

You could be that difference that a person with a epilepsy or some other seizure disorder needs. We need more people with these skills. Trust me. I know first hand.

Anyways, that’s all for now! Love you all! xox

Living with Epilepsy

Goals: I Make Room For My Ep, Not the Other Way Around

January 16, 2013 sitagaia Leave a comment

Hey guys!

Quick update about my New Years Goals! (Side note: I often refer to epilepsy as “my ep”, just in case you’re confused!)

Okay….so I didn’t really end up making a check list and straight forward list of the things that I wanted to do for last week, but I did end up doing quite a bit. I went for 5 walks, took my mom out for coffee, cleaned my room, did my laundry, vacuumed and saw a couple of friends. I didn’t end up doing any meditating, which is no surprise to me, because it is still a challenging goal. I am pretty pleased with those accomplishments, given the spikes in my moods and energy levels. But…if you look at this week’s goals, you’ll see that it’s still on there. So I’m not giving up on it, just because I didn’t pursue it last week. Me and meditation were just taking a little break from each other. Breaks are healthy from time to time, right?

VLUU L100, M100 / Samsung L100, M100 — Goals for this week

Anyways, this week’s checklist are mostly the same as last week’s, with a few alterations. I want to go for a walk five times a week, meditate three times a week for ten minutes at a time, do some paper work (yuck), look into organizing an event, update this beautiful blog (this update doesn’t count) and continue to listen to my “pink noise” (two variations) twice a day. I do believe I have mentioned the pink noise in a previous blog post, but it was prescribed to me in my “alternative treatment”. It is supposed to calm the brainwaves that cause seizures.

I think I gave myself a pretty ambitious list of goals this week, given that I am coming out of my “seizure free period” soon. My seizures come in cycles, so I will often be “seizure free” for about 9 days, and then I will have a cluster of seizures for about 4 days. If this happens, well c’est la vie, right. It’s not like I was lazy, it just means I have to work within the scope of my capabilities during that time frame. I’m not trying to set myself up for failure by saying I want to go for 5 walks in one week, I’m just running my life based on what I want, and not what the epilepsy wants. Sure, if the seizures happens, I will make accomodations so I am not injured, and I am absolutely going to take care of my health, no questions asked. Epilepsy is all about listening to the body, and listening to the very small signals that your body is sending you. Some people with epilepsy get auras before their seizure, which is basically some sort of warning that a seizure is about to happen. It’s useful, because then it allows a person to get to a safe place before the seizure occurs. Sometimes I have an aura, but more often than not, I don’t. I will sometimes blink very rapidly, or if I’m talking I will stop talking mid sentence. Since I don’t get much of an aura before my seizure, I can and have been put in a compromising position.

I am often extra careful during my “seizure cycles” so leaving the house on my own during the seizure cycle is an absolute no-no. Even as I write this I am feeling exhausted, so I will probably have a little afternoon nap. I generally never have naps, so I must be feeling tired. Did any of that make sense? I’m just re-reading it and I’m not sure I get it. Basically I am setting out my goals of what I want to accomplish as if I am not going to have any seizures…but if I do have them, well that’s life and I’m going to take care of myself. There. That was so much easier!

Hmm…What else can I tell you? I did my nails the other day, and it made me feel quite cheerful, because I have been feeling quite bummed out all week. Maybe a future goal would be to do my friend’s nails. Spread the love! Anyways, thanks for reading. Love to you all! xox

PS : Okay I lied. This wasn’t a quick update at all. 😛

Living with Epilepsy

Accepting My Epilepsy Through Humour

January 14, 2013 sitagaia 9 Comments

Let’s be real. On Friday I was angry. I was crying. I was basically a bull in a china shop. My parents skidded around me as delicately as they could. I had so much anger inside of me, and I just didn’t know what to do with it. I was a mess. I had a long conversation with my boyfriend Jordan (who also has a chronic condition), and asked HOW?! How did he accept his condition? How did he overcome the hurdles that were suddenly placed in his way at the age of 17? (The age when he was diagnosed).

I may or may not have had liquid coming from more than one facial points. I listened as he told me how he came to accept that he had to deal with his chronic condition for the rest of his life. He had many words of wisdom to share with me, but his main piece of advice were this: although there might be something different about his body, he can’t change it. He can be vigilant about taking his medication and watch his diet. It sucks that he has to take medication, but if its what he has to do to stay alive, that’s what he’ll do. He stressed to me that even though his body doesn’t function properly without medication, he still has control over his attitude and how he feels about his condition. He has the choice of how he will let his condition affect his attitude, and it won’t let it define him or stop him from achieving his goals.

I figure my first step in accepting my epilepsy is to look at the humour in having seizures. When I am not angry and sad, I am generally a very fun and light-hearted person. I make terrible puns. I laugh at the worst jokes. I make terrible jokes. I have been accused of having a bad sense of humour. I don’t mean that in the sense of I laugh at vulgar jokes, but I just laugh at really weak and lame jokes. But you know what? I don’t care! Life is short and I’d rather laugh my way through it than be serious and surly the entire way through.

My mom and I were talking about my seizures the other day, and she said ‘What are some of the funny things about having seizures?” I had never thought about that! The thought kind of tickled me, because all the conversations around seizures have been all doom and gloom. So I thought I would share some funny experiences of having seizures. So here we go, my first step in accepting my epilepsy is to look at the humour in it. After you read these stories you’ll know what I mean.

Several months ago, me and my friend Allie were lounging around on my couch in my apartment. This was before I came home to be with my parents, and I wasn’t able to leave my apartment by myself, so Allie came over to hang out with me. So here we go: picture two girls, sitting on a nice comfy couch, catching up on life. I hadn’t been feeling very well that day. Allie wasn’t feeling very well herself, as she had badly sprained her ankle. Anyways, while we were talking, I started to seize, and I started to slouch over to the side and needed Allie to help me sit upright. Allie tried to get me to sit upright, but her ankle was hurting so badly, she couldn’t even move. “Look at us! We’re such a mess!” she exclaimed. Even though I was seizing, I could still hear her, and I started to laugh, and through the laughter I started to snort a little bit. Snorting sometimes happens when I have seizures, and sometimes I will laugh if someone makes a joke, because I can still hear what’s happening in my surroundings. Anyways, 10-15 seconds later, I came out of the seizure, and we were just a giggling mess on the couch, joking about how we were just falling apart. So yes! It is funny! I snort sometimes when I have seizures! Sometimes I sound like a pig! I can laugh at your jokes even though I’m seizing! Isn’t that awesome!? Okay, story two:

During the Christmas break I was watching Raising Hope (a fantastic tv show) with my friend, when I started to have a little seizure. I was covered up by a blanket, so she couldn’t see my clenched fist or any of the bodily movements, but the show had just started when the seizure had come on. One of the characters had said something mildly funny, but I was laughing hysterically. (If I wasn’t in a seizure I wouldn’t have reacted in such a way.) My friend wasn’t sure if I was really getting into the show or if something else was going on. She was pretty sure it was the latter.

Another humorous thing about having epilepsy: when I take my dog out for a walk I will often walk on the grass instead of on the paved sidewalk, so if I fall I’ll have a softer landing. It’s fine with me, and I think it’s a smart idea. The funny thing about it is that I have never stepped in more dog shit in my life! Geez people really need to start scooping after their pooches! Yes, I do pick up after my dog. If you ever see me walking my dog you’ll see me stop a few times to scuff my boots on the grass. It’s not pretty. I swear I’ve stepped in Rottweiler dung like 5 times now. Ah well! It’s funny! As long as I don”t do a face plant in dog shit, I’m happy!

Can you see how, in retrospect these things are kind of funny? I think humour is a good first step for me in moving towards acceptance because it’s lighthearted and fun, which is a good way to start this long journey. This is not beginning and end of my journey towards acceptance of my epilepsy, so expect more posts on it. Love you all! xox

Living with Epilepsy

Update, Update! New Years Goals!!!

Aside January 10, 2013 sitagaia Leave a comment

Hey guys! Quick check in! I thought I would update you and let you know how my New years goals are going. Well, so far I accomplished my weekly goals. I was able to walk three times a week, plus an additional two times. YAY! I was also able to get together with my friend and I updated this blog twice which rocks.

The hardest thing I found to achieve was meditating for ten minutes at a time, three times a week. Why is that, you may ask? It’s not like you’re not out and about much as it is! Well my Mum has been trying to get me to meditate for years!

Honestly, I mean about seven years she has been trying to coax me to a seated position to take time and relax and focus my energy not on television, not on a book, not a podcast, but my breath. I have a guided meditation series on my ipod (thanks to my mum!) so three times a week I would retreat to the big comfy chair in the living room and sit there for ten minutes and struggle through the ten minutes. It wasn’t easy most days, but on the third day my dog was barking away (because he loves attention) and I found myself calm and relaxed, just riding the wave of what was happening. It was amazing!

Since meditation is such a struggle for me, I know I made a realistic goal of three times a week for only ten minutes. If I had set out to meditate for 20 minutes for five times a week I probably would have gotten discouraged pretty quickly.

You’ll see on my Weekly checklist that I have blackened out a couple things. They are a couple of things that I set out to do to that just didn’t jive with my current health situation. If I was in a better health situation I would have done them in a heart beat.

Stay tuned next week for how this week’s goals went! Love to you all! xox

Living with Epilepsy

Epilepsy: A Day in The Life

January 6, 2013 sitagaia 2 Comments

I roll over in bed,and suddenly it’s morning. It still feels so early. I check my phone. It’s 10 am. 10 am!! I feel like I could sleep for hours. I haul my little bum out of bed and pour some cereal into a bowl and go back to bed and turn on my laptop. I need to listen to my “pink noise” before I start my day. “Pink noise” sounds just snow on your television, (you know on those channels that you don’t get) but a softer, more pleasant version of it. My Biowave feedback doctor prescribed it to me. Apparently it’s supposed to calm the brainwaves that cause seizures, and it’s good to listen to it when you first wake up in the morning. I always listen to it full blast. It doesn’t really feel like it’s loud, until the track is over and it switches to an actual song on my itunes list. Holy crap it never fails to surprise me.

I’m so slow to get ready in the morning. Today I am going to meet my friend for coffee. Even though I love meeting friends, going out of my comfort zone can cause a certain amount of anxiety. Will I have a seizure? Will my friend catch it? Will the coffee shop be busy? Will there be too much stimulation in the coffeeshop? Will I be able to find a booth to sit in? It’s funny, I never in my wildest dreams thought that seeing friends could bring on so much anxiety. Today I am particularly worried, because I had some seizures last night, and I had trouble falling asleep. Anxiety and seizures during the night paired together can be a bad combination for seizures during the day time.

Anyways, I manage to get out of bed and throw together an outfit: a pair of jeggings with a cute top and a sweater over top and my pair of owl earrings seems to be my standard outfit these days. Sometimes I’ll be more into doing my hair and make up, and some days I’ll go au natural and not care as much. Whatever. Being a natural girl is fun. My mom tells me to hurry up or we’re going to be late. It’s good to see that this condition hasn’t taken away my vanity. I tell her I’m coming. We walk out to her car. Cars. Car rides can be weird. Sometimes the sensation of driving triggers seizures. There’s too much stimulation happening when I’m in a car. But not all the time. That’s the mysterious thing. I remind her to be gentle with those U-turns. I put on my over-sized sunglasses to block out the gleaming sunlight. Who knows what angle it will come at today. My mom pulls out of her parking spot very delicately (which is to be applauded, as we are parked on a hill going up). I feel tired. Maybe I should have had more breakfast. I wish I had slept more.

My mom drops my brother off somewhere and I start to feel nervous again. My mom coaches me through deep breathing exercises as we make our way to the coffee shop. Still my mind has its own agenda: What if there isn’t a comfy chair to sit in? What if there are no more comfy chairs left at the coffee shop and I’m forced to sit in a wooden chair, and what if I have a seizure in one of them? That’s happened before. I’ve almost fallen out of one of them before. It was awful. My mom walks me into the coffee shop and orders my drink for me because thankfully there are two comfy seats free. (Thank god, I think I’ve released ten thousand butterflies that were all fluttering around in my brain). My Mom comes over and hands me my drink (Iced Matcha Green tea latte, I didn’t want anything too hot…I was getting a bit of a headache from all the emotional distress).

“All right, I gotta go” My mom tells me. “Are you gonna be okay?”

“Yup. I’ll be fine.” I tell her. This is the freedom you have been dying for! My mind screams with glee. To be alone in public for at least fifteen minutes or so is amazing! I’m not sure what to do with this excitement, so I listen to a podcast as I wait for my friend. I find that listening to a podcast calms my overactive mind. It eases the anxiety by focusing my attention on silly humour that doesn’t require much brain power, but just enough that I need to pay attention. Thankfully this podcast is hilarious (I’ll put a link for it at the bottom) so it was easy for me to start giggling and I got into it. Before I knew it I saw my friend walk into the coffee shop. I jumped up and gave him a huge hug. The hug dissolved my stress and the stress free me was back!! We sat down and I gave him a very quick run down as to what he should do if I have a seizure when we’re hanging out. “Just be calm, come sit by me, and reassure me that everything’s going to be okay. Even though I’m having involuntary movements, I can still hear you. And if I start to lean to one side, come to that side and prop me up.” I also quickly describe what my seizures look like, so he knows what to look for, and so not to be alarmed if he sees anything unusual.

It was as easy as that. And you know what? All my stressing was for nothing! I had no seizures while we were hanging out! Maybe it was luck, maybe it was because he is a pretty relaxed kind of person, I don’t know. Either way, I was so happy and once I got into our conversation, I didn’t find myself obsessing over whether I was going to have seizures. I was just in the moment. Talking about school, life, relationships. Whatever kinds of things that two friends talk about when they meet up for coffee.

My Mom came to pick me up two hours later, where I was happy to report the good news. She was so happy for me! Between all the happiness I was exhausted, so I needed a low-key evening. Sometimes after a really good and happy day I feel really tired and I am more likely for my moods to go up and down. So I ended up just hanging out, going for a short walk with my mom, meditated for ten minutes(Yay New years goals!), and helped the parents out with the dishes that I had neglected. Then it was time for bed, so I followed my normal bed time routine of brushing teeth, taking my meds, and then watching some Dr. Phil on You Tube.

Today’s experience was a huge relief for me, because although I have gotten used to having seizures in public and in front of friends and strangers, they are a definitely not a highlight of my day. Plus, I just feel so much better physically when I don’t have them. My friends are always very understanding, but sometimes having seizures takes away the ability of being able to relax and live in the moment.

One thing that I know many people with epilepsy struggle with (I know this through being active on an epilepsy forum) is fear. I never really experienced this for 10 years of my diagnosis because my seizures were extremely well controlled. I rarely thought of my epilepsy! Once my seizures got out of control, I thought about having seizures all the time. You can see from one day how much I thought about having seizures. Little things like going for a coffee can be stressful, because as I mentioned, if there were no comfortable chairs, having a seizure in a regular wooden chair could be quite dangerous, because I could fall and really hurt myself. For me, it can be scary to leave the house, go to places with lots of stimulation, (crowded shopping malls, busy restaurants, buses during rush hour) because I just don’t know how my brain is going to react. At the same time, I love to get out of the house, see my friends, and do things with my family. So it’s all about finding that happy balance.

This is just a snapshot of what it’s like to live with seizures. It’s not like this for me everyday, nor does it speak to the experiences of every person living with epilepsy. I hope it gave you some insight as to what it’s like to live with this chronic condition, and how the smallest of tasks can become the biggest of triumphs. Love to you all. xox

Oh: and here’s a link to the podcast I listen to: http://redbarradio.net/ I usually get the podcasts for free (they’re free from this site too) from itunes. CHECK IT OUT!!!

Living with Epilepsy

A New Year, A New Frame of Mind

January 4, 2013 sitagaia 4 Comments

2013. 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.

One 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.

These 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.

These 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

Life at Full Volume

Monthly Archives: January 2013

Everyone Loves a Quickie!

Goals: I Make Room For My Ep, Not the Other Way Around

Accepting My Epilepsy Through Humour

Update, Update! New Years Goals!!!

Epilepsy: A Day in The Life

A New Year, A New Frame of Mind

A Blog about Living a Whole Life With Epilepsy