Jump to content


Photo

Wide Awake And Dreaming


  • Please log in to reply
13 replies to this topic

#1 dormir

dormir

    Member

  • Members
  • 89 posts

Posted 01 January 2013 - 09:33 PM

I wasn't sure where to post this thread so I'm sorry if this is in the wrong place.

I was on Twitter earlier and "Narcolepsy News" posted a link to this book. It is free through Amazon Kindle or another version of Kindle (I have Kindle for Android which is free) today and today only.

I have read about 80% of the book so far. It is well written and a fast read. I cannot believe how much I identify with her experiences, especially the sleep paralysis and HH. It's crazy. She has really severe cataplexy and I don't know how her sleep is at night, but I identified with many of her experiences and the struggles involved with being diagnosed, finding people who understand, and even some of the weird "am I dreaming or did that just happen?" types of experiences. If you still have time today to download this book, I recommend it.

#2 lkl

lkl

    Member

  • Members
  • 61 posts
  • Gender:Female

Posted 02 January 2013 - 03:22 AM

Thanks for mentioning that. I just downloaded it, and will read it when I am less sleepy. :rolleyes:

#3 dormir

dormir

    Member

  • Members
  • 89 posts

Posted 03 January 2013 - 07:36 PM

I finished the book and it is a good book. It sounds like she had a somewhat privileged life, had a fast diagnosis, and was able to connect to a strong community after the diagnosis, so I have to admit that makes me a little bit jealous, but there were a lot of good stories and things I could identify with.

#4 munky

munky

    Member

  • Members
  • 213 posts
  • Gender:Female
  • Location:near Little Rock, Arkansas
  • Interests:Too many to list. It takes up too much space.

Posted 12 January 2013 - 11:49 PM

I finished the book and it is a good book. It sounds like she had a somewhat privileged life, had a fast diagnosis, and was able to connect to a strong community after the diagnosis, so I have to admit that makes me a little bit jealous, but there were a lot of good stories and things I could identify with.

 

I know what you mean! I read it this week, while I was off work.

 

I haven't had to deal with the cataplexy issue, but when she wrote about deciding she wasn't going to let it change her life, and she went ahead and went out drinking despite knowing it'd make the cataplexy worse, and the results of that ... I saw the similarity in the trouble I've been having making myself take the stupid scheduled naps. I hate them because I HAVE to have them ... tell me I can have them if I want, and I'd have no problems. And I've been neglecting those naps despite being able to see just how much worse off I am without them. Now I have to come around to accepting them, like she did the "no drinking" rule. Especially now that I'm on 12-hour shifts! I barely managed to make it through 8-hour shifts when I refused to take my naps. It was good to read how she came to grips with it. It really helped a lot. I'm almost looking forward to my first nap tonight!



#5 Megssosleepy

Megssosleepy

    Member

  • Members
  • 444 posts
  • Gender:Female
  • Location:DreamLand USA

Posted 14 January 2013 - 03:28 PM

I came on this afternoon to figure out where to write about this book!  Glad someone else put it somewhere.

 

Its a quick read and was nice to hear someone else's journey, but like a couple of you said I was rather jealous of her.  I mean she went to undergrad and grad school and didnt have to work... but still had her own apt, car, money to buy yummy beer, and throw parties.  She had a wonderful understand family and a large group of great friends.  While I don't envy her cateplexy... her N didnt start till she was what like 22? Then had a Dx as soon as she started looking for answers!

 

I did enjoy the book though.  It was a quick and easy read.  I liked the way she described some of the emotions she went through while starting Xyrem and then when dancing at that basement.  I could relate to a lot of it... and definitely shed some tears hear and there.  I wish I had book club of PWN who read this book because I would like to talk about it more!



#6 munky

munky

    Member

  • Members
  • 213 posts
  • Gender:Female
  • Location:near Little Rock, Arkansas
  • Interests:Too many to list. It takes up too much space.

Posted 14 January 2013 - 09:01 PM

"Like"



#7 sk8aplexy

sk8aplexy

    Member

  • Members
  • 355 posts
  • Gender:Male
  • Location:IN
  • Interests:Balance & Proportion of Tacos. Care & Respecting. Pools & Concrete Skateboarding. Observing & Contemplating. Future & Traveling. Technology & Evolving. Philosophy & Words...

Posted 15 January 2013 - 11:12 AM

The book is very well written and was extremely easy to read. It was pleasant and there was a lot in it, which I could directly relate to in regards to similar experiences, or thoughts, pertaining to Cataplexy and other Narcolepsy symptoms. It is inspiring in the descriptions of what she went through in adjusting and learning, what Narcolepsy with Cataplexy was, and what the impact of such for her would be (or become over time). Then, as well was inspiring, the difficult preparations for the Boston Marathon; and her success in completing the Boston Marathon.
She seems to have found medications which help her, it seems she's also found content-ness and comfort with the condition, and she is doing good by telling her story.
Thank You Julie Flygare, I hope to perhaps join you in the fight to educate.
Although, as was perhaps similarly stated, at one point in the book by her; anonymity is for me, slightly desire-able, at least still at this point in time.

 

A Comment:
The only aspect that I sort of wasn't really in complete agreement with, is pertaining to everyone being able to gain something positive from the available medication/s. I must admit, that wording perhaps wasn't really, specificaly, stated within the book. And, please understand that, that statement is very much due to 'My own, having difficulties with the common medications for reasons related to other health matters that I live with, and have lived with throughout my 'roller coaster ride' (in life).'



#8 dormir

dormir

    Member

  • Members
  • 89 posts

Posted 17 January 2013 - 03:19 PM

LOL munky.  That "like" comment made me smile.

 

It is interesting to hear everyone's insights about this book.  The medication and diagnosis journey sound like they have been more frustrating for you all than what the author wrote about.



#9 exanimo

exanimo

    Member

  • Members
  • 218 posts
  • Gender:Female
  • Location:Alaska
  • Interests:Snowboarding, reading, writing, poetry, hiking, camping, college, art, anthropology, history, biology, anatomy &physiology...

Posted 09 March 2013 - 04:07 PM

I loved this book! 

 

I could definitely relate to a lot of what her feelings and thoughts were. I found it to be very insightful as well. I thought I'd come to terms with my N, but after reading this, I am not so sure. I may be dealing with it, but I have not scratched the surface on the emotions I feel regarding N.

 

I love that she is so inspiring! I tweeted her about her book, and she was very nice and tweeted me back. It's nice to feel connected to someone about N and such. 

 

I would love to see more books about N, as everyone's story is so different. So I encourage you all to think about it! Even though my story is similar to Julie's, becauseI was diagnosed about 21, and didn't go through too much hassle in receiving a diagnosis "textbook Narcolepsy" << here. But I also had a much earlier onset of symptoms (probably as young as 10). I went those years thinking that I was lazy and just tired. I knew it wasn't normal, and by the age of 17 or 18 I think I began to look in to Narcolepsy. I kept trying to tell my Mom that I needed to see someone about it, but she shrugged it off. Finally told me that if I wanted to do it, I could set it all up myself. So, I was my own advocate and I did just that. 

 

But anyway. It would just be great to see more stories about the experience of N. It's so interesting to know that we all have N, but we all experience it so differently. It would also bring a lot more awareness to it, and maybe people wouldn't shrug it off so easily. Or look at us like we're "lucky" to be able to sleep whenever we want. PSh. I wish I could stay awake when I wanted!!

 

Great read, would definitely recommend it to anyone interested (whether that be PWNs, or family or anyone else!).



#10 sweetest_shone

sweetest_shone

    Member

  • Members
  • 98 posts

Posted 09 March 2013 - 05:37 PM

This book is still free. I went on and got it today. Again, that is for the Amazon Kindle or for the Kindle apps. Just wanted to let everyone know. This book is getting great reviews so if you have a kindle or smart phone there's nothing to lose!! :).

#11 dormir

dormir

    Member

  • Members
  • 89 posts

Posted 12 March 2013 - 08:41 PM

Wow!  That's awesome it is still free!

 

 

I have had symptoms as long as I can remember and now I'm stuck in a diagnosis circle because I don't have insurance, can't afford to get a second opinion or have a second sleep study, and the pulmonologist definitely seems to go by textbook narcolepsy MSLT results only, though so far, he can't explain what other sleep disorders would cause EDS, HH, SP, falling asleep at inappropriate times, vivid nightly dreaming/disturbed sleep, and possibly cataplexy, though the jury is still out on this.  He was the one that initially suggested narcolepsy and once I read about it, I felt like, "Wow!  This is it....or not really?!"   

 

 

It was frustrating because I identified so much with so many of the author's experiences, though if I have cataplexy, it is nowhere near as severe as her's, but if I can encourage anyone, don't stop seeking a diagnosis if you feel the first one is wrong.  I will continue to try to get a diagnosis for something (even if it ends up not being narcolepsy) as I slowly walk this path.  I just want peaceful sleep and no more SP, HH, EDS, and I will not miss my dreams for a minute if I can find a way to get them to go away.



#12 sk8aplexy

sk8aplexy

    Member

  • Members
  • 355 posts
  • Gender:Male
  • Location:IN
  • Interests:Balance & Proportion of Tacos. Care & Respecting. Pools & Concrete Skateboarding. Observing & Contemplating. Future & Traveling. Technology & Evolving. Philosophy & Words...

Posted 12 March 2013 - 10:40 PM

The title I'd go with for my own story, not that I would likely do such, but who knows maybe somehow one day; yet this wouldn't actually be the title, as fitting as it would be, it would only be fitting to an extent and may seem a bit too much considering it is only temporary... (Also, please 'know' I mean, no disrespect...):

'Wide Awake and [temporarily] Paralyzed'



#13 Alysha1027

Alysha1027

    Member

  • Members
  • 2 posts
  • Gender:Female
  • Location:Minneapolis, MN

Posted 24 March 2013 - 01:59 PM

I thought this book was great in describing how debilitating N can be. I do agree her diagnosis seemed fairly quick in comparison to what others have gone through. I am 23 now and have been having these issues, according to my father, since about 4th grade. Drs just assumed it was depression, bipolar, drug use, trauma from abuse, etc etc (the only one which was true was the depression).  However I do not have cataplexy and I do hope that doctors begin to recognize and diagnose quicker in the future for patients. I read an article that said the onset to diagnosis period is estimated to be about 10 years!! I gave this book to my fiancé so he could get a better understanding of the disorder and some of my behaviors, blackouts, hallucinations, etc. I am still trying to convince my mother to read it also.



#14 Rachel_Moron

Rachel_Moron

    Member

  • Members
  • 9 posts

Posted 24 February 2014 - 01:57 AM

My mom and I read it together and were blown away by her vignettes of the phases of diagnosis and her struggle to overcome each obstacle narcolepsy gave her. This book is all about rising above an illness and acquiring what once was the unthinkable, When we have started reading this book, I found myself relating to every single questions, she raised on her pursuit to a diagnosis. The detail and the description what Julie writes with had me questioning if in fact I wasn’t reading my own memoir. Whether she was sleeping in class or thinking up absurd ways to stay awake I was right there reminiscing my High School days. Julie sent me on a roller coaster of emotions; her words brought laughter, but they also brought tears as I was reminded of some of my own darkest day. It’s a book of struggles, lost dreams, uncertainty..I suggest all Narcolepsy patients to read this real life story book and get power to fight with it.