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. 😉
Hey guys! I have amazing news! I have officially reached over 700 views overall on my blog! This could only be possible thanks to people like you who check in regularly and read my posts! Thank you so much for your continued support and keep your eyes peeled for upcoming posts! xox
Hey all! Sorry I’ve been a little MIA, life is crazy with school and other things that gobble up time, but I’m back! Enjoy.
Do you ever have those days where you catch yourself in the mirror and you’re all like “Oh god when did I get this hot?” Well, I was having one of those days today when I caught myself in the mirror of my elevator while I was hauling groceries back to my apartment. Now, I’m generally not shy about looking in mirrors, but today I was caught off guard. I think I’m a prettty good looking lady, but I didn’t expect to look so good after hauling my groceries down the road and into the lobby. I imagined sweat stains at the pits of my shirt and that my long dark hair was in distress after being out in the sun and being blown around by the wind. Neither were true! My outfit was still perfectly put together, and dare I say that I even looked smaller than I remembered myself?
I think this awesome feeling was due in part to the fact that I was wearing my amazing ‘Bitch Boots’. My Bitch Boots are this amazing pair of lace up boots that have zips on the side (so you never actually have to tie them up), and look totally rocking with a pair of skinny jeans tucked into them. I even remember buying them: I was with my friend Sam looking around in Aldo. Before going shopping I promised myself that I wouldn’t buy anything and that it was simply to be a window shopping excursion. But no! Everything changed once I lay my eyes on my boots. Made of black leather (or probably fake leather, but shh) they were all hot, feminine, powerful and dare I say hipster all in one! Plus they were on sale, so that was a major bonus. Before I knew it I found myself trying them on, modelling them in one of those tiny little mirrors that make it so you can see only your feet.
They were amazing! I had to have them! Sam didn’t discourage it. I figured I would get a good bang for my buck, as they would last and wouldn’t go out of style for a while. Even though I loved them, I wondered what the boyfriend would think. I imagined him making fun of me, accusing me of being a hipster. Not like he can talk; he loves bands that no body knows and he just emulates that vibe sometimes. (Sorry bf, but remember I have leftover chocolate cake that you want!) Regardless, I was gonna buy them and wear them even if no one else liked them.
This idea of feeling powerful regardless of what other people think of you is essential for good self-esteem and confidence. However, it’s easy to let other people’s ideals of beauty rob you of this power. You can totally forget about your natural beauty by absorbing some bullshit mainstream idea of what is hot and what is not. Fuck those bastards! You should be the only one who decides what features of yourself make you hot.
Just yesterday I was at the grocery store buying some groceries for a little get together I was having with some friends. Since it was a Saturday afternoon (prime time for grocery shopping) I spent some time in line waiting to check out my groceries. Now, while I was waiting it was absolutely impossible to ignore the headlines on all the magazines. That 5 to 10 minute wait in a grocery store line is how I get updated in the ‘pop world’. (Oh and www.jezebel.com).
The tabloids on Star Magazine (I think it was Star) are what caught my eyes first. Headlines such as: Too Skinny and Starving to be Perfect leaped out at me. There were images of celebrities such as Kim Kardashian, Gwen Stefani, and Jessica Simpson, and there was something critical to say about each of their appearance. Jessica Simpson was criticized for her baby weight and recent weight loss. How can you criticize someone for their weight gain during pregnancy? They just had a baby for gods-sakes! Kim Kardashian’s picture was accompanied with something along the lines of Still wanting to lose some more pounds, while Gwen Stefani’s picture had a quote with something along the lines of I practically starve myself to stay skinny. Oh, did I also mention she was wearing a crop top and you could practically see her ribs?
What. The. Fucking. Hell. This magazine is criticizing female celebrities for being too skinny, but at the same time these types of images are what perpetuates poor body image, crash dieting, and excessive exercising. Of course it goes in the opposite direction too: some people may binge, deprive themselves of food, or follow extremely rigid excercise and eating plans. I couldn’t help but feel a little bit angry. It seems as though there is no such thing as ‘good enough’ when it comes to bodies and appearance. If a woman is too skinny, she is accused of having an eating disorder. If a woman is too curvy, it must be mentioned all the time. This extreme idea of thinking in terms of being too skinny or being too heavy leaves little room for the development of positive body image and self-esteem. I would also argue that it leaves one in a constant state of worry and concern about their body. Er, let me rephrase that: sometimes it leaves me in a state of worry and concern.
Anyways, with all this scrutiny of women’s bodies in magazines, it’s great to have one article of clothing that always makes you feel awesome, no matter what the day. Even though the way magazine articles still anger me with regards to how they scrutinize female’s bodies, I have learned to separate myself from it and see it as realistically as possible. These women don’t get a break with how they look because they are under scrutiny all the time. I’m guessing this makes them need to look a certain way, because that’s what their manager wants, and it will help them sell more albums, or do better at the box office. Maybe they would actually love to be ten pounds heavier, but they are sacrificing it to follow their dream. I can’t judge.
I, on the other hand, don’t have the paparazzi following me, and I am the only person that passes criticism on myself. (Well other people do I’m sure, but I don’t notice and don’t really care that much). I have learned that I have power over how I feel about myself, so I am going to love the way I look, and love the way that makes me feel. So if a pair of awesome boots is what gets me there in the process, why the fuck not? These boots to me are more than just a pair of boots. I am reclaiming the word ‘bitch’ to encompass something strong and powerful, and it can be used as a compliment rather than an insult.
Life is too short to spend time worrying about all the little lumps and bumps. (Perceived or otherwise). Don’t let beauty ideals and ideas of perfection stop you in your tracks. You are perfect just the way you are, so keep on stomping in your bitch boots.
Thank you so much for reading. I would love to hear from you if you have any comments or suggestions for new topics or how I could improve. Love you all xox
So it’s 8:30 am and I just woke up from a long and deep sleep. I took the night time cold pill last night, and let me tell you it does wonders in helping one sleep. Not that I am advocating for inappropriate use of cold medication, but man it works if you have a cold.
For the past few days I have been lying in bed, surrounded by rolls of toilet paper and throat spray. Thankfully my roomie has been out most of the time, so I can test the progression of my voice depletion by saying random phrases and singing parts of pop songs. Losing your voice can be quite intriguing! An entire register of your voice is gone! When you try to use it all you can hear is air and the sound that should be there. I’ve been avoiding hanging out with friends, because I need as little encouragement as possible to talk. If you know me you know this is tough, because I love to talk! Sometimes I just can’t shut up, especially if I’m with good friends. So lately all of my conversations have turned into inner dialogues and silent monologues.
These many hours alone have left me to contemplate what it means to be sick, and how sickness has the potential to turn me into a selfish person. Having a cold is one thing: it usually hangs around for a week or so, or if you have a particularly bad one it clings on to the bitter end of thirty days. Even though its painful and annoying, there is usually a light at the end of the tunnel as you feel your mucus drying up and the cups beside your bed start to disappear.
Even though my voice may have been depleted over the past few days, I have gained a voice in talking about my seizures and how it impacts me. Since I have an actual diagnosis of epilepsy I will always have it, but some days are worse than others. When the days are good, I don’t have to be as cognisant of my day to day activities, and I can let my daily schedule be a little bit more flexible. (Now, it’s important to note that some people do outgrow their epilepsy, and they stop having seizures and there is no longer a need to take medication). I don’t believe this will be the case for me. Not because I am being a Negative Nancy, but my epilepsy developed as a result of an organic brain abnormality, so although the seizures may be well-controlled, I doubt I will ever stop taking medication. That’s fine with me. I have learned pretty well how to learn a ‘normal’ life despite this condition.
This past year I have had to become extremely dependent on my boyfriend, friends, and family for support and assistance. I have needed instant support for those days when the seizures would rear their ugly head, either through someone physically being with me or through an incoherent phone call due to uncontrollable sobbing.
At first I was hesitant to ask for support. My friends and family have lives of their own, and I shouldn’t have to ask them to drop everything to come be with me when I was in a state of crisis. Eventually I learned that I had no choice but to ask for help because I couldn’t do it on my own.
With this kind of condition where immediate support is needed it’s hard not to become a little bit self-centred. This year I have found that the issue of my seizures has infected all of my conversations with my friends and family. Some of them rightfully so, but some conversations continue to gravitate towards anything involving seizures or epilepsy. It’s insane! I want to pull my hair out and slap myself across the face when this happens. No! Everything isn’t always about you! My inner voice will scold me. You need to learn to listen and be kind to others, too. Okay, easier said than done. It’s not that I don’t consider myself to be a kind and compassionate person. It’s just that the seizures have taken over my life in a way that I have become so comfortable in talking about them that it kind of spills out over conversations, like a cup of coffee all over a clean rug.
A close friend of mine lives with chronic pain due to the multiple concussions she has had throughout her life. I know that she has brutal pain in her legs and back, and often has a bitch of a headache. Despite her chronic pain, she is one of the busiest and active people I know. She is always weeding or planting in her garden, cleaning her house, taking care of her dogs, or tutoring me and other students on a regular basis. She tells me that being active helps keep her mind off of her pain. Even though her pain has shifted her life in a very real way, I find it striking that we rarely talk about it. It’s only something that comes up when it’s really bad, or when we need to reschedule our plans because it’s out of control. I don’t know how to feel about this, because my seizures come and go and they aren’t affecting me every moment of my life, but I can’t help but blab about the trauma of the most recent seizure. Why should I have to talk about it all the time when it fluctuates so much?
Thankfully my friend and I are very close and she understands my need to voice my worries about the seizures. She gets it that having epilepsy is more than just having seizures. My worries and need to talk about them includes how it impacts my quality of life, relationships, schooling, jobs, and how I feel about myself as a person.
Asking for help and assistance on a regular basis can threaten to make a person seem or become self-centred. In some quiet moments of self-reflection, I’ve realized that this is the case for two reasons: First of all, I’m at an age where I am very focused on myself and my own goals and accomplishments in my life. I am not married nor do I have a family of my own. I have a boyfriend and friends, but it is not my sole responsibility to provide for them and put food in their mouths. Secondly, I have had to ask for help, whether I want it or not. To ensure my own safety I have had to ask for help in doing everyday tasks such as grocery shopping, walking to the bus stop, and getting off an airplane.
As a result, I always make sure that I show people gratitude when they help me. Even if they are walking me 10 meters! It doesn’t matter how small the act of kindness was. Even though people are keen to help, they always appreciate gratitude in return. In addition, it becomes a humbling experience, instead of a power dynamic. I believe that people want to help, and by showing gratitude it makes you more ‘real’, whatever that means.
Essentially I want to exercise the same care and compassion that others have shown me. My boyfriend has Type 1 Diabetes, and I find that I am still learning how to be compassionate about his condition. I’m not used to being the one without the chronic medical condition. I’ve always been the ‘sick’ one! (I use the term sick very loosely, so don’t get too upset about it). Even though our conditions are very different, Diabetes affects him on a regular basis. Everyone I have come across has wanted to know more about epilepsy so they could better understand it. I guess part of me is afraid to know more about Diabetes because I’m afraid to know how it could affect him in the long run. It pains me to think of him being sick in the future because I care about him so much. But I know that in order to be caring and understanding I need to know how I can best support him. This will be a good first step in giving back the help that I have received. I think he will appreciate it.
Thank you so much for reading my post! Please share your comments and questions in the comments section. I love you all! xox
P.S. A side note about the pictures: I love latte art and always take a picture of my latte when it has a cool design. I just think it’s so neat! Most of them were taken in Bridgehead, Ottawa, while one of them was taken at Waves Coffee Shop in Vancouver BC. I hope you enjoyed them as much as I do!
So it’s 12:45 am and I’m still awake. Now I’m sure for all you night owls out there that this is no big deal. For some this is just the beginning of their night time insomnia/creativity-whatever you want to call it. But for me I literally cannot sleep.
I have had the most exhausting week. I spent most of my time cleaning my old apartment and moving into my new apartment. I kinda forgot how much work moving is, as I was in my old apartment for two years. Two years! That’s a lot of time for a ton of stuff to accumulate. All those things on the shelf that you leave to deal with ‘some other time’ finally approaches, as that time is now. Many of my friends are moving to new apartments, new cities, and new university/job endeavours. Everyone is stressed and exhausted, so I know that everyone is feeling this way at this time of year.
Needless to say, moving in general is rough whether you have a medical condition or not. This week has kinda been rough for me though. The heat and exhaustion from moving has aggravated the seizures, which is not only discouraging but frustrating. It’s annoying to feel like I can’t go at the speed many other 22 year olds go at. I hate having to take breaks and just ‘take it easy’. Who wants to take things easy? Part of me despises relaxing and sleeping because it is something that I am required to do in order to help manage the seizures. But the heat and lack of sleep and proper eating has been getting to me. It’s too much to handle! I am trying to reassure myself that seizures are more likely to happen as it is a very stressful time of year, but it is hard not to wonder how I am going to get through the fall semester if I keep having seizures like I am right now.
This evening I was grocery shopping with my new roomie and his parents who were visiting from out of town. I was pushing my own cart as I had my own list of foods that I wanted to get. My friend (roomie) and I would play cart tag, randomly bumping into each other in various aisles and pretending to act surprised when we saw each other. We were shopping relatively late in the evening, which was nice because I didn’t have to manoeuvre my cart around other people rushing about to get their carton of milk or their carton of ice cream for a spontaneous movie night.
I was just heading to the check-out when I felt this funny feeling run through my body, and in that split second knew that I was going to have a seizure, but there was nothing I could do about it. It was kind of weird, because as I fell I saw myself falling in third person. Taken out of context, the fall actually looked rather comical. I was completely alert and standing one moment and then boom! There I was, crashing to the floor of the supermarket. I vaguely remember hitting my head on one of the bargain bins nearby, and it makes sense to me now as I feel and see a bruise appearing on my forehead. Its small, but tender to the touch.
Despite the shittiness of the situation, it was amazing to see the number of people that rushed to my aid. I could hear my friend conversing with other people, and giving them directions. “I don’t think you’re supposed to restrain her. Just let the seizure happen”. “Epilepsy”, said another guy. I am assuming he checked my medical alert bracelet. A guy stood over me and asked me if I knew my name. I definitely did know my name, I just couldn’t say it. I spluttered as saliva went down the wrong pipes and just looked at him dazedly. “Are you okay?” Hmm good question. Was I okay? “Umm, yeah I think so?” How should I answer that question. I didn’t even have an answer. I managed to instruct him how to help me up (Standing in front of me, pulling me up by holding both my hands)
As I got up people were still standing by, asking me if I was all right. They had genuine concern in their eyes. I reassured them that I was fine, and I thanked them for their help. One woman approached me with caution. “Does everyone have the same triggers for seizures?” She wanted to know. I explained to her that it varies from person to person, and that sometimes an imbalance of medication can cause seizures to occur. She seemed genuinely interested, but seened afraid to push any boundaries. I told her what to do if she ever saw someone having a seizure again. Man, when did I become the expert on this? I should be hired as an Epilepsy spokesperson or something. She nodded at my instructions, and to my surprise, said that she would pray for me. I was startled, yet oddly touched. A stranger cared enough to ask about the seizures and that she would send good wishes my way.
Based on today’s post, I thought it would be useful to add a list of first aid tips when helping someone who is having a seizure. Who knows? Maybe one day you’ll be at the grocery store minding your own business when you see someone collapse. Knowing what to do will make all the world of difference.
How to Assist Someone who is having a Seizure:
-Remain calm and reassure the person that you are there to help them
-Remove any dangerous objects out of the person’s way
-Loosen any tight clothing that may make breathing difficult (collared shirts, necklaces, etc).
-Do not restrain the person. Trying to hold the person down may make the seizure worse. It is often best to let the seizure run its course.
-Turn the person on to their side and put something soft such as a coat under their head. (This may only be necessary if the seizure causes the person to fall).
-Time the seizure. If it goes over 5 minutes, call 911 for medical assistance.
-Remain with the person until the seizure has passed.
-If the person seems confused and disoriented, remind them where they are and what they were doing when the seizure occurred.
-Call a taxi or assist the person in getting home if they seem unable to do so on their own
One crucial detail about first aid and safety for people with seizures is that it is physically impossible for a person to swallow their tongue. As a result of this myth, people who are being assisted while having a seizure sometimes have wallets shoved in their mouth to help prevent this. Do not do this! Let the seizure run its course, and try to remove any dangerous objects out of the person’s way. Sometimes it’s hard to move quickly, because seizures can occur in the blink of an eye. Don’t blame yourself if you don’t catch a person as they are falling. Just be there for them.
When I set out to write this blog post I was planning on ranting about how much I hate having seizures and how I feel worried and concerned. Okay, you caught me. I still hate having seizures, and I still feel worried. Basically, I was setting out to write a big angry post with a bunch of expletives.
But I surprised myself and focused on the caring nature of complete strangers. When I think about it some more, tonight’s incident has taught me that there are still nice people out there in the world. If I have a seizure when I am by myself in public, at least one person will come and help me out. This makes me feel more reassured that I can go out and do things, even when the seizures aren’t completely under control.
I know that no one can ever really understand (except for my fellow friends with epilepsy), but people are trying to understand. I still feel embarrassed about my epilepsy, but I am going to challenge myself to continue to talk about it. Maybe it will help other people with epilepsy feel less stigmatized, and they will feel as though they can talk to others about how it affects them. Also, I think this awareness will allow people to have more understanding about epilepsy, and will allow them to feel more at ease when assisting someone who is having a seizure. I hope you have found this post enlightening. Thank you so much for reading, I can’t wait to hear your comments! xox
As I was on my flight back to Ottawa yesterday I had somewhat of an epiphany. I realized that I had started to count ‘seizure free days’ in the same way that recovering alcoholics count their days of sobriety. Now I only realized this because I was reading a fabulous book, Ninety Days by Bill Clegg which is all about his personal recovery from a crack and alcohol addiction. I would highly recommend it; it’s extremely engaging, and shows life through the lens of someone who has struggled with addictions. It’s also a fast read, which makes it easy to get through.
Anyways, I digress. I realized that this method of counting seizure free days was contrary to my other methods of getting both mentally and physically healthy. Although this method may work for recovering alcoholics, I can tell you that it does not work for someone like myself who is coping with epilepsy. These are two different issues here, and one remedy is not meant to solve both.
This is how I see it: When I have an episode and I suddenly have zero ‘seizure free days’ under my belt, I feel like it erases all the hard work I have done in managing my stress, hours of sleep, exercise and nutrition. It’s this ongoing spiral that makes me feel like the victim, which makes me feel even more powerless and nervous about the brain activity in my head. It also makes me angry for being stressed, which does absolutely nothing to help the situation.
With this type of thinking I become ruled by the episodes that I have had, and the fear of (potentially) more to come. It also makes my life succumb to a structure that is completely filled with epilepsy, and makes little room for life. Augusten Burroughs, author of This is How, an anti-self help book, writes a chapter on how to live with chronic medical conditions and terminal illnesses. His suggestion in dealing with chronic medical conditions is to let your life make room for the illness, instead of the other way around. So if I apply this theory to my life, this is how it would look: The majority of my life would be focused on school, hobbies, my relationships and other things that I am passionate about. In contrast, a little slice of my brain would be aware of my epilepsy, but it wouldn’t dominate every corner, nook and cranny of my life. It would just be part of it.
As a young child I had about maybe two seizures a year, and always in my sleep. Epilepsy was just a label but I didn’t feel its effects. Because my seizures have changed so much, I find myself almost grieving the life that I used to have. I’m not complaining about the life I have now. I am grateful for all of my friends, family and opportunities that have been given to me. I carry around extra worry and anxiety about the danger that I could find myself in. To shed this weight would be better than anything else in the world.
Essentially, I don’t want people to feel sorry for me. I just needed to get this out in order to rid myself of the weight it holds. I’d like to sum this post up with a quote from Dodinksky:
“Our struggles can either build chains to enslave us, or provide lessons to assemble a character with purpose” – Dodinsky
Thank you so much for reading! Love to you all! xox