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.
Last 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
I 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.
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
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.
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
Holy shit it’s been a crazy week. I’m not even gonna be PG and pretend that it hasn’t. The seizures started to come back due to stress and lack of sleep. I started to feel myself slipping back into my old mindset of feeling hopeless and helpless and like there was no way of pulling myself out of this hole of depression and anxiety.
Thank god I have amazing supports in my life. I don’t know what I would do without them! I was talking to a friend on the phone this past Friday, and I was telling her how I was feeling upset about the seizures and some other stuff that had happened this past week. She validated my experiences by saying that it sucked that they happened to me, but then she said something else that completely blew my mind. “You know what Sita? Feelings aren’t facts. Even if you may be feeling kinda down or stressed right now, remember that those feelings are not who you are.” Whoa. I never thought about it like that before. Who I am as a person could be separate from what I was feeling? And even if there are some things that I am stressed about, I don’t have to let it ruin my weekend! Amazing!
Maybe you have heard this before or it seems obvious to you, but I had never even considered this before. I feel my feelings very intensely and I see it as being very tightly bound with who I am as a person. Some people would describe me as a sponge, because I observe everything that’s going on around me and pick up on the subtleties of other people’s emotions and their energy. This can be very useful, because I can pick up on when someone is upset and I know how to adjust myself accordingly. On the other hand it can also be very annoying because I absorb the energy that’s around me and it’s hard to not feel affected by it.
Anyways, what my friend said to me stuck like glue and I haven’t stopped thinking about it since. So, I did what any crafty person would do: I got some bright coloured paper, a pair of scissors, and a black sharpie and I created a little art project for my closet door to remind myself that I am doing okay and that I can choose how I feel about what’s happening in my life.
It’s one thing to have people tell me that I am going to be okay and everything is going to work out, but since I created these messages myself, I actually believe it.
Thanks so much for reading! I hope I inspired you to think of some positive mantras for your own life! Love you all xox
The other night I was hanging around at home, waiting for my friend to arrive so we could hang out before we met up with some friends for a night of karaoke. It was the end of a long day of running around for me, and although the day turned out to be really good it had to turn itself on its head before it got there. I was just pulling together some ‘breakfast for dinner’ when my friend called and told me that he was running late. Now I am used to people running late. I mean, I am not infallible; I have run late for events on more than one occasion. It happens! You get caught up in a tv show and lose track of time and then suddenly you realize you were supposed to be somewhere ten minutes ago.
For some reason this moment brought me back to my childhood days where I would spend a great deal of time alone. Now if you know me today as a young adult, you are probably going to try and call my bluff. I’m sure that some of you are thinking that there is no way that I could have been a lonely child at times. Based on how I live right now, I would understand that disbelief because I have many friends, and many people seem to believe that I flit from one social gathering to another. (Which, in all honesty is true in some cases).
I have one concrete memory of feeling lonely as a kid where I am lying under my Mom’s Desk (much like a dog would do), and I would lay there as she worked. It seems almost ridiculous, but I know for sure that I would lie on the floor and listen to the tap tap tap of my Mom’s fingers on the keyboard, keeping my ears alert for when she would finally stop tapping and call it quits for the day.
It’s not like my parents were mean and neglectful, they were just running their business and making a living, as the majority of parents tend to do. I think I would have spent less time alone if I wasn’t so shy as I needed some prodding to make new friends and put myself out there. Since I have spent so much time alone over the years, I have gotten used to it and I most certainly don’t mind my own company. Sometimes I find I need that time to unwind and relax after spending a lot of time with my friends. When I’m alone I can just focus on my own silent musings and re-charge the motivational self-talk that constantly runs through my head. Without this I feel sucked dry and I’m practically going through life like a friendly Zombie: I’m present but it’s easier to sit quietly and listen than be entirely engaged with my surroundings.
On the other hand, I have also learned that having epilepsy can make me feel very lonely at times. I say this because when I have seizures it can be unsafe for me to leave my house to do the simplest of tasks such as going grocery shopping, visiting a friend, or going to the gym. For me one seizure can be a warning sign of more to come, which is not what you want when you are out and about in your community. The last thing you want is to be carrying your groceries down the street and then WHAM! You hit your head on the pavement by this annoying and unexpected affliction.
The past week has been crazy busy for me, and even though I have enjoyed the social gatherings that I was part of, its a pain in the ass to have seizures as a repercussion of being out late too many nights in a row. I guess the most relatable way of describing it is the day after a heavy night of drinking: a hangover and extreme exhaustion. I guess the loneliness comes into play when I am required to stay at home and there’s no one around to talk to. Despite enjoying my solitary days, it can be tough when you have no choice but to be alone. Plus the prospect of having a seizure and falling on a hard surface or whacking my head makes me a little more than panicky.
This part of having epilepsy sometimes makes me feel angry because I get mad at myself for staying out too late too many nights in a row. It makes me feel like I should I have controlled it better. The idea that I should have ‘controlled’ something makes sense at first, but when you’re looking at something like epilepsy, seizures can be hard to control even when you’re on a good dosage of medication and you eat healthily, exercise regularly and get enough sleep. Sometimes you have to go with the flow of things, which is hard for me because I am trying really hard to get out of this ‘all or nothing’ thinking. When I have a seizure after a long span of no seizures I start to worry that they’re coming back for awhile. (As described in this post https://sitagaia.wordpress.com/2012/07/31/tuning-in-when-the-body-says-enough/) I am trying so hard to retrain my brain and think about it one day at a time, but let me tell you it’s flipping hard.
Additionally, I want to see my friends and feel like a ‘normal’ twenty-something year old who can stay out late and doesn’t need to call it a night at 11:30. Anti-Epileptic Drugs often come with a side effect of exhaustion, and I can tell you with certainty that both of my medications cause me to feel tired all the time. I have nick-named myself ‘the old lady’ in fun, but sometimes I do feel old because I feel tired out and exhausted. I see some of my friends working a job, going to classes, doing volunteer work, plus they have an active and bubbling social life. I don’t know how they do it!
I was talking to my boyfriend about this the other day, and he told me that I shouldn’t compare myself to what other people are doing. I guess i don’t give myself the credit I deserve because I always feel like other people are out there doing way more than I am. But if I’m not living other people’s life, how would I know? My boyfriend kindly reminded me that I go extra lengths to take care of myself, work hard at school, and go to the gym more often than anyone he knows. (When I’m having non seizure periods, at least). Hmm I guess he has a good point.
This post wasn’t meant to be a pity party, but more of a way for me to work out my feelings of how I feel about being alone with regards to when it’s by choice and when it’s out of necessity. I guess like many things in life it’s something that I need to keep reflecting on and I need to remember that no one leads the exact same life and has the same experiences so it’s useless to compare yourself to others. Sometimes it’s a hard journey, but I got to remember to not let myself fall back into that hole of despair and look on the bright side of having to stay at home. On that thought, I think I’m going to crawl into bed and watch some tv on my laptop. 😉