I took my first dose of Xyrem 365 days ago TODAY. Am I better? YES! Am i still sleepy? Yes. About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day. You might think - “Well, yeah. You have narcolepsy. … Continue reading Xyrem Vol. 6: One Year
Tag: spoonie
Community and Connection in Chronic Illness
Happy Tuesday, friends! I'm trying to get into a Tuesday/Thursday/Saturday publishing cycle, instead of posting at random times throughout the week. This is the second post in that effort. Do you have your people? The ones who help you reset and keep things in perspective? Over the weekend I went to my first narcolepsy support… Continue reading Community and Connection in Chronic Illness
On Hallucinations
“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.” -Bertrand Russell #tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis… Continue reading On Hallucinations
Half Birthday
SLEEP&SPARKLE is my life right now. I'm trying to build my brand and grow my company into something fabulous. I've cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can… Continue reading Half Birthday
Xyrem Vol. 5
Head burns, stomach aches, But nightly you give me sleep. Thank god I forget.
This is us these days. 