Hi, my name is Sleepyscandre. I'm here because I am curious to know about people’s journey with this condition. I am really feeling the effects on my memory and impaired judgement in my later 40s, getting worried how its going to affect the rest of my life (& my family’s).Also, curious about treatments; like Xyrem and if anyone has found it truly helpful to quality of life.
Lastly, any single parents out there? Wth 🤦🏻♀️ was I thinking, these poor kiddos. I feel like their entire lives have been a struggle bcuz of this damn sleep disorder and cant stop feeling guilty about it all & even doubting that my diagnosis is even accurate(I had the whole day and 1/2 sleep study & was diagnosed 14 yrs ago, been sleepy like crazy since I can remember ).I really do work on this and try to be better in other areas of parenting to show up for my kids, like the Mom they need. Sadly, i didnt choose a father who is near and/or terribly helpful at this point either.
Okay, enough about me..I just hold this in most of the time because let’s be honest friends, most peopledon’t understand how truly shitty narcolepsy can be. I am not going to try and convince anyone, what would be the point?
Thanks so much for letting me vent and I apologize to be such a downer..Im really not always this sad and depressing. I hope and pray that you all have found ways to cope better than I have, if so please share them.
Yours truly, Andrea
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I started showing symptoms of Narcolepsy when l was twenty-six. I am now approaching 68 and, fortunately, don’t have cataplexy. Every day is a struggle to appear normal. I have tried every narcolepsy medication available, and there hasn't been one with long-term benefits. I was in the modafinil trial, and it has never worked since it has been available. Xyrem worked well until I started sleepwalking and broke several bones. Now I need a shoulder replacement because of my last sleepwalking fall.
I have so much empathy for all of you who struggle through life. My life is more challenging now than it has ever been. I experience the depression, sadness, and grief many of you share. I wish I could say things will improve, but there is no guarantee.
For those of you wondering, yes, I have tried everything through the years. Acupuncture, well, you name it, and I have tried it