Myasthenia Gravis Update 2 years Later.

Hi there, lovely reader!
My name is Fleur — I posted here almost two years ago now (can you believe it’s been that long?).

Back then, I was just a week into my diagnosis with myasthenia gravis. I felt completely lost, overwhelmed with anxiety, and unsure how to move forward.

Now, nearly two years later, so much has changed.

I’ve come to understand who I am with this condition. I’ve learned how to navigate life with more awareness — what helps, what doesn’t (Mestinon and I have a complicated relationship), and how to listen to my body.

I’ve discovered new hobbies, spend more time with loved ones, and truly enjoy the little things — like sitting outside, listening to the birds, or creating delicious meals in the kitchen (cooking has become a true passion!).

Of course, I still have days where I overdo it — like now, while typing this during a flare. But that’s okay. I had a beautiful week, I made memories, and that’s what matters.

One major shift for me was receiving support through the Invalidity Insurance Act (for young disabled persons). It’s been life-changing. I was even able to buy an electric bike, which gives me the freedom to go out and enjoy the world a little more.

I’ve also found an incredible therapist, who’s been guiding me through self-acceptance, pain management, and emotional healing.

If you're just starting out on this journey, please know it gets gentler. Not easier every day — but softer, more familiar, more yours. Keep going, even if it’s just one tiny step at a time. 🩷

- Fleur.