Tag Archives: School

When Chronic Illness Gets too F*cking Real

Chronic illness got too f*cking real today.

crying galI have been having seizures on and off since Sunday, but today was good. Or so it seemed. I have a massive headache, hence why I am drinking iced coffee, and have taken a few Tylenol. My parents are in the US because my brother is doing his PhD defense….and they wanted to be there to witness that. I thought “Awesome! My parents will be gone and my aunty will be staying with me!”

Last night I ended up barely sleeping, and I cried and cried in bed this morning because I felt horrible and wanted my mom. I also felt like an idiot, because as a 27 year old, I should be able to cope without my mom.

My aunt consoled me, and I waffled back and forth as to whether I would go to my one class this week. It is unfortunate that it is on a Thursday, as Thursdays tend to be my “crash day”. Ultimately, as the stubborn Taurus that I am, I headed off to meet a few friends before class so we could review some of the material for our quiz today. I also told the professor that I wanted to review a mark that I got on a previous assignment, so I couldn’t put that off. The professor had some great examples as to how I could improve, but I couldn’t help but feel the frustration that I wasn’t doing well in the class, and why it was so hard to pick up the skills. I managed to (mostly) hold myself together while talking to the prof, and after she said that she would let me take the quiz at a later date, I headed to the classroom to say hi and goodbye to some of my peers.

One of my peers caught me in the hallway and everything fell apart. I hate to complain about having epilepsy, but the headache, frustration, and going home all came to a head and I ended up having an ugly cry. She was so kind and hugged me and told me that she was frustrated too- and that she would text me regarding what happened in class. She hugged me which made it feel a bit better.

Finally I went and walked to the class, where my friend said he would walk me to the subway. I decided to refill my iced coffee, and when the guy in line at Starbucks turned to me and asked “How are you doing today?” I was very Un-Canadian and said “awful”. He didn’t know what to do with this information.

So, chronic illness has given me a blast. I am exhausted, feel over committed and stressed out because of one friggen course.

Love you lots,

Sita & JoJo

My Biggest F*cking Aha Moment

Today I had the biggest fucking aha moment. I was standing in the kitchen with my mum, after a dinner that my dad had prepared.

I have been going through a rough patch recently, with constant low mood, which has put a damper on my every day quality of living. On some days it is an accomplishment if I make the 15 minute walk to the Starbucks near my house. The depression feels like it eats me alive sometimes…and although I don’t lie in bed and cry, my body feels numb. I can’t feel anything. I tell people that the mental health aspect of the epilepsy is harder to deal with than the epilepsy itself. I have burnt myself with hot tea due to a seizure. No problem. I was able to rise from the ashes like a phoenix with four months of bandage changes, and a period of time on morphine and Tylenol Arthritis. The physical pain was awful, but I could still get through my every day life.

I have gone into a tail spin when I saw that a peer has gotten their Master’s degree in Social Work. As I told my mum so many times, “This wasn’t supposed to happen!” I wasn’t supposed to have my diagnosis changed to Refractory epilepsy. I was supposed to be normal, able to go out without worrying about what people will think when I ask for the disability seat, and not feel like my soul is drowning in depression on the really bad days. You can tell it’s been a bad time when you see me in the same outfit multiple days in a row, or when I need to put clothes on the floor near my bed so I can easily reach them when I have zero motivation to do anything.

Regardless, while we were in the kitchen, my mum put her hands on my shoulders and said “You are doing so, so, well. For someone in your situation, I am so impressed.” I was flabbergasted. What? I was doing well? ME!? On the days that I hide under my covers? The fact that I am not independent? “Yes,” my mum said. “You still get out there and socialize, and you ask for help when you need it. You could just be in a hole, but you make the effort not to be.

WOAH. My mum is right. I could just hide and be in my own little world. I’m not though! I am taking a pre-requisite at a community college, am an active co-organizer of a queer women’s Meet Up group, see friends, practice yoga, ask for help when I need it,  and spend time with my family….to name a few things.

Holy shit guys, I’m not letting life pass me by! I am living it- chronic illness and all!! I am not a failure!!

Love,
Sita and JoJo xox

Living with Epilepsy: Daily Challenges

smails

So since I’ve been back at school, I’ve been super busy. I’ve been busy with school, adjusting with living a more independent lifestyle, and living day to day while having seizures in between the mix. I love what I am doing at school, and it makes me feel like I’m on a good path, career-wise.

But, I’m not going to lie: I tend to put on a good face even when I feel like crap. It just feels second nature to me. It’s easier to get through the bad days when I put on a good face because I hate burying my face under the covers for days at a time. Also, lets face it: I hate throwing myself pity parties. Also, I feel like I will feel like I am doing better than I am if I put on a good face. It’s kind of a mental mind trick. And I don’t like to focus on all the negative things that are going on in my life all the time. It’s just not fun.

But, since this is my blog, I can write about negative things all I want because I feel other people can benefit from it too. I also feel like it’s cathartic, because I’m actually a pretty private person, and don’t actually let on how much things are affecting me. I don’t know why. Maybe I just don’t want people to worry? Maybe I just don’t want people to see seizures as to completely encompass who I am? Mostly I think I don’t want people to pity me. I hate pity. Mostly I’m trying to understand what’s happening, because it’s very confusing and frustrating. I’m still having seizures every other day, whether in my sleep or somewhere on campus. It’s pretty stressful because besides the stress of being back at school, and the stress of increased seizures, I don’t know what is causing them. I also worry about hitting my head and getting a concussion. I had an incident last week where I came very close to getting a concussion, but thank god I had a Guardian angel who put her hand under my head as I fell during my seizure so I didn’t hit the tile during the seizure.

I find though, that being social helps me take my mind off my worries. Last night I met up with one of my friends and we went to the mall and tried on clothes. We chatted and laughed and then we went out for dinner. Just by socializing and laughing made the stress go away. Since I know that I always feel better when I see my friends (plus I love my friends!) I always make sure I see a few friends every week. That prevents me from feeling isolated, which makes me focus even more on the seizures.

Take away message: I am still doing everything I want to do despite these silly health problems. Some days I feel pooped, but that’s what tea is for. Or sometimes I go to bed early. Or, if I have a seizure mid-day, I just have to cancel plans and go to bed. It’s reality. I’m not giving up, just working at my own pace until things are under better control. I am so thankful that my University is so supportive and I have a network of supportive friends and family, plus an amazing boyfriend. **Deep Breath**. I feel better already. I hope you’re having a great day. If you’re ever having a tough day, look around you and remember your support networks, or the little things that make things beautiful. It helps to make life better. Hope you’re all doing well! Love you all! xox