Holiday season is upon us! I love the holidays, despite that where I live we rarely get a white Christmas, it is still fun to put up your tree, buy gifts, and write Christmas cards.
I asked for addresses for so many Christmas cards, and since we are living strange and worrisome times, multiple friends asked why I could have their mailing address. Is sending Christmas cards that old school?! I guess so.
Since I have made multiple big changes in my life and I am still adjusting- my neuropsychiatrist told me I am not allowed to work. He told me I need to relax more, and I had to ask him what he meant by “relax”. I am not a relaxer by nature- I love gallivanting around, seeing friends, being in Starbucks, making new plans and cleaning the house. (OK it’s an apartment but it’s easier to clean than when I was living with my parents.). I also love Fri-dates and Satur-dates with my fiancee. It has been hard to relax, as I got all of my Christmas shopping done and sent out a million Christmas Cards. (OK only ten lol).
Like anything, there is always a downside to Christmas. My epileptologist told me that Christmas is the biggest time where his patients have seizures. Last year I was out with seizures for 5 days after Christmas day. I find it exhausting to do two back to back things on one weekend, and as much as I love my family, too much family time can be too much! Despite being an extrovert by nature, I get sleepy earlier than most people. I am grateful that I am in a family that understands when I need a nap. My fiancee also wants to make sure that I am not “over doing it” so for that I am eternally grateful.
If you have a personal friend or family member in your life with a chronic illness, or even mental health issues, please be mindful that we are doing the best we can. We don’t have tonnes of energy, and sometimes pain, or feeling overwhelmed gets to the best of us. The best gift you could give us is kindness and understanding that we are sometimes extra tired. If we have to miss out on something, such as due to having too many seizures, we don’t mean to.
Lots of love,
Sita & Jojo
P.S. Yup that’s the tackyaf tree that me and fiancee have. It was my idea, of course 😉
It is fitting, because I’ve had a scary awesome revelation about what I want to pursue in my life.
Last weekend, I did a workshop called “Find Your Why”. Some of the principles are based off of Simon Sinek’s thinking. -Check out some of his ideas here .The main idea being the golden circle. You operate from Why at the middle, then What and Where in the outer circles. If you think of it many of us operate from “what”. Through this workshop I learned that I wanted to empower women with chronic illnesses and make them feel amazing from the inside out through fashion and vlogs. Wow!! I had been stuck in such a rigid idea of social work, that I hadn’t allowed my mind to wander.
Through my new business, CHRONIC FASHION, I will give style makeovers, photoshoots, and someone else to step in with hair and make up. I can also act as a coach, since I am a Registered Social Worker.
Even though I have been seizure free lately (YASS!) I totally believe that if you have an illness, dressing well can make you feel better about yourself!
If you want to follow my new business and see how it progresses, join CHRONICFASHION on facebook, and ChronicFashion65 on instagram and Twitter!
Finally, what would you like to see as someone helping a person with a chronic illness through fashion? What would you want?
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!