Mary Murray's Idiopathic Hypersomnia Story Sharing Session

Please share! Mary Murray is a teacher, mother, avid reader, and lover of travel living in Los Angeles. She was diagnosed with idiopathic hypersomnia at the age of 36. As a Rising Voices of Narcolepsy advocate, she hopes to help others understand what it’s really like to live with this rare disorder.
To improve public understanding of narcolepsy, Project Sleep’s Rising Voices of Narcolepsy program trains people with narcolepsy to share their stories through public speaking and writing with local communities, healthcare providers, news outlets, blogs and beyond. Combining the power of real-life stories with expert communication strategies, our Rising Voices of Narcolepsy trained speakers and writers are effectively raising awareness and reducing stigma for all those facing narcolepsy.

[@CuteCatsofIstanbul]

I've been always so sleepy and so exhausted that I never ever could think of having a child. Every morning I lay in bed, half asleep, half awake, I hear the noises of the world start up; garbage truck, school buses, trains, kids waking up in our apartment, babies crying, parents talking, doors banging - I cry because I was never given the option to be a part of that, yet I'm grateful I'm in a position where I can rest and sleep whenever I like, I don't have to leave the house most days, I have my cats to keep me happy, but the grief of what my life could've been with a job, a career, more money/freedom, with hobbies, with friends, a bustling social life ... they haunt me.

[@JanetteMacias-rn9sz]

It gets me really sad but yes good sens humor is a plus.

[@MsShellybell12]

Thanks for this I was just diagnosed today after a sleepy study I am a tired busy body I have RLS which doesn't help but I play games too with my health I knew I was always tired and I couldn't figure out why I have to schedule naps 🤣🤣🤣I go out have fun I care for my grandma and husband I decorate my home love to shop and play with my dog I am very tired everyday but I can't let my depression and all of my conditions get me down I love life and helping people including myself thanks for your encouraging story.

[@Ninabnina711]

I wish the people sharing their stories would also share the names of the medications they are taking. It would help a lot, especially to people who are newly diagnosed and are looking into different meds for treatment options. Thank you for this wonderful channel.❤

[@debklug9571]

Has anyone had fMRI to see if there’s something that’s different going on with the Hypersomnia brain? And has anyone tried Hyperbaric Oxygen Therapy?

[@altinfamily]

Can u give me your dr name who helped u?