The last few weeks have not been rosy for me. How about you?

I’ve been in a flare for almost 2 months now. One of my oldest friend's Kiki, who’s been through the thick and thin of it with me, made me realize it happens every year at around this time. We blame the change in weather and seasons, even though the fall is my favourite. I get flares year round, but they’re usually pretty tame in comparison, only lasting a couple weeks at most. These autumn flares are monsters of a different class.

But before I get into the flares, I should tell you a bit of why I get them. I have three main rare conditions that affect me on the daily and that cause and/or intensify these flares. I have a systemic auto-inflammatory illness called Familial Mediterranean Fever (FMF), a neurological disorder called Narcolepsy Type 1/with Cataplexy, and ongoing work up for connective tissue disease.

What do my flares look like? Well, it varies…

In general, it means the pain is no longer a semi-manageable 6 out of 10, but a constant 8 or 9. That includes joint pain in most of my joints, neurological pain (sciatica, migraines, neuropathy), and abdominal pain.
The nausea is killer, completely destroying my appetite, causing me to vomit daily, struggling to keep food down. When prolonged, it causes me to lose an unhealthy amount of weight and fast. It’s scary.
The narcolepsy goes into overdrive, causing me to be intensely fatigued. Sleeping between 14 to 18 hours a day erratically and struggle to accomplish basic tasks like cooking, bathing, etc. It gets to me, and tends to have an impact on the cataplexy too, causing more frequent episodes where my body rag-dolls and buckles to the ground as I wait for it to pass and regain control of my body.
And the fevers… They are the worst. Either I have a persistent one that doesn’t let up all day, or it cycles every hour and last’s for better part of it. I savour the fleeting moments where the fever ebbs away momentarily. The respite is almost blissful.

Yep... It’s rough!

My productivity is low and so are my social engagements. When it’s been weeks, it really takes its toll on my mental and emotional wellbeing. I realized I’ve slipped into a bit of a depression, and all I want is just one ‘good’ day. I feel unfocused, unmotivated, uninspired, lonely, frustrated, worn out…

There has been some light though, and the source this time around was last week’s release of the podcast episode I was a guest on called Once Upon a Gene Podcast. We recorded it before the flare, thankfully. I shared parts of my story that some may never have heard before. Sharing vulnerable parts of myself is so scary for me, but it’s a big reason why I started this collective and why I’m actively working on being genuinely and unapologetically authentic. And this was a good step in that direction, so I’m left feeling a little more accomplished and accepting.

Once Upon A Gene Podcast was created by the beautiful and magical Effie Parks. Her courage and vulnerability are some of her superheroess traits that I deeply admire. She created the podcast to connect with others in the rare disease community after her son was diagnosed with a rare genetic condition called CTNNB1 syndrome. She’s doing important things over there and is a bright light in our rare and chronic disease community.
We’re lucky to have her!

UPDATES

Once Upon A Gene — Episode 48 What is Chronically Surviving with me, Marcelle Longlade

Our Odyssey Topic Specific Meet Up — Accessible Mindfulness
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Our Odyssey Blog Outreach — Want to share your story?
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