The holidays have arrived, and some of us may be feeling a range of emotions, and most likely, some level of stress, especially since we're still amid this global pandemic. I had the pleasure to be invited to present for the monthly Mito Expert Series a couple of weeks ago to discuss accessible ways to relieve stress during the holidays. MitoAction provides support, education, outreach, advocacy, and research support for those affected by mitochondrial disease.
During the presentation, I provided concrete tips to help cope with the stress of the holidays. It was so well received, I decided to write this blog as it may be helpful for others to manage stress during this chaotic time of year. At the end of this blog post, I've also provided links to my talk's audio and video recordings. I urge you to check it out as you might find new ways of reducing stress during the holidays.
Read moreHave you ever walked into a room and forgotten what you came in there for? Was it to grab something, or to do something… whatever it was, poof, it’s just gone, forgotten. It happens to all of us once in a while. Now, imagine this happening all day, and sometimes for days on end. Instead of random blips, it happens often and disrupts your life. Welcome to the elusive symptom known to most as brain fog. The inspiration for this blog is because it’s been my basic mode of operation the last month while being in a flare-up (sudden worsening of symptoms). It’s been cloudy with a chance of staring off into space. Thankfully the clouds are parting and I got clarity enough to write this post.
Read moreI spent my days on as strict a schedule as I could manage, ensuring that I remained in complete silence. I disconnected from all electronics. I even turned off all of my clocks. Most of the time was dedicated to specific meditation practices and prayer, reading The Bhagavad Gita, spending time in nature, and resting in mindful reflection. My goal was to slow my thoughts and abstain from as many external influences and inputs as possible. Hoping it would allow me to gain some peace of mind…
Read moreI also enjoy dancing and miss the days when I was able to dance every week. I dance any time I get a chance to do so. Sometimes I will take a class with my friends, or we go out dancing somewhere. I have done all these things while learning how to live, love, and manage to live with a urea cycle disorder. As someone who has a rare disease, I want to share my story with others to help others going through similar struggles and strides. Even though we might have to climb these rare-disease-mountains that does not mean we have to climb them alone.
Read moreThe sad thing is that I was going so far out of my way to accommodate others, that I was putting my own mental and physical health in jeopardy. This was when I began to realize something. The only person who has any say in the validity of my life experiences is me. People may be “uncomfortable” hearing about what I’m going through, but I guarantee they’d be far more “uncomfortable” actually living through it. I also realized that as an individual suffering from a rare condition, I have a unique opportunity to change the narrative and stigma surrounding this community. But the only way to do that is to stand with courage in your convictions and speak your truth. If people, in turn, choose to judge you… guess what? They are not “your” people.
Read moreRare Disease Day is an opportunity to enlighten the public about issues affecting rare disease patients such as overcoming health inequities - including the lack of understanding around rare conditions and challenges patients must face to even get an accurate diagnosis.
Read more“Healthy” is not a one-size-fits-all. It has taken me years to accept that when I go into crisis I will have to do certain things that society considers “unhealthy” in order to stop long-term damage to my muscles. As the patient, it’s important to remember your worth, and trust in yourself and your care team to know what is best for you—not your co-worker who swears by intermittent fasting. I’m grateful that I have stopped trying to blend in and hide my quirks and instead welcome the questions from others, even if their approach could use a little work because that is best for me.
Read moreWe all deserve this magical life we have been given, regardless of our differences. Everybody lies, to others and to ourselves, but we can choose not to, and instead let the truth tell us who we are.
Read moreWhen I hit over 200 days of being alone in my bachelor apartment in Toronto, I decided that I would carefully make the trek up north to my parents house and quarantine with them for the holidays. My mom has a similar illness as mine, so they’ve been isolating just like me. I felt comfortable and safe making the temporary transition, if it meant being around other humans for a little while. I’m happy to have had hushed holidays just the three of us. No one was stressed.
Read moreGrief has been a constant whisper that has come over me since March. I feel it in my chest. My heart aches subtly with despair. There’s a weight on my shoulders that wasn’t there before.
Collectively and personally, we are all grieving in some manner. I know we are all craving the normal that is receding further away into the review mirror that is the past; slipping away from us. It’s hard to let go…
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