exanimo

Narcolepsy Blogs

26 posts in this topic

Hi all! I'm not sure where the best place to post this topic is, but I thought Advocacy seemed appropriate.

I wanted to know if anyone reads any blogs on Narcolepsy? I've seen a few of them, but it's really only a handful. Does anyone here have one that they would like to share?

And lastly, I wanted to know if anyone would be interested in starting one. I don't know if anyone is familiar with livejournal.com, but it's a blog site that I have used for many years. They have a huge community of private blogs, open blogs, as well as open and closed communities. They offer paid memberships as well as a free membership for those who want to use their site to blog. Or journal, as they call it. Besides allowing you to have your journal set to everyone, friends or private, it allows you to set individual journal or community entries to everyone, friends or private. I don't currently have a special blog through them for my narcolepsy, just my private one. But if anyone is interested that has a livejournal account, or who might want to start one, I thought I might make a community for people to join. Basically members would be able to post about whatever they want regarding their Narcolepsy, share information, research or articles. Vent about frustrations of daily life living with it, etc. But most importantly it would give those who may not have found a supportive group (such as NN) to join or read and feel like they're not alone.

I am in no way proposing this to somehow substitute for NN. I just thought it would open up another place for people to share. Whether it be in a community that we create or through a private journal on the site.

Also, if anyone else has any good blogging sites, please share!

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That's a good idea!

I started a blog really only for the purpose of writing a journal, and having a creative outlet about my IH. Sometimes I feel like my friends and family are tired of constantly hearing me talk about falling asleep. I haven't even told my friends and family about it because I'm self-conscious about it. I know nothing about writing or blogging. But if you're interested, you can check it out. It's pretty much just my randomly-updated stream of consciousness about my sleep disorder.

http://idontpassout.blogspot.com/

I'm going to try to put a prominent link to this forum on there, that was such a good idea!

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I have a blog that I'm just getting off the ground. The link is in my signature. I'm still trying to find the right tone for it, but there is plenty of time to work that out. I want to talk about the nuts and bolts of N but I also want to discuss the experience of the altered dream state, waking dreams, night terrors, lucid dreams, and other altered states of consciousness that I have experienced due to the condition. Unfortunately, it's not on Livejournal. I use Word Press. I used LJ years ago before the N took over. You're right- one thing LJ has going for it is its communities. I don't see that kind of integration with other blog services. What Word Press does have is the ability to follow blogs from any site. So 818sis, I have you followed! Everyone feel free to follow my blog, and if you want to share without posting here, just send me a message and I'll follow. Thanks!

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Well thank you both! I'll make sure to check out both of your blogs! And no worries - the main point of this thread was just to share blogs, and to maybe open others up to the idea. It's a great resource for anyone, and especially for those with N or others with any disorder that tends to be hard for family and friends to understand.

I think it's awesome that people are making them, and sharing their stories with the world. And even helping others who may not yet be diagnosed!!

I will have to check out wordpress in general as well - I like the idea of following anyone from any blog, not just the blog site you happen to be using (such as me, with my LJ!). :)

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I write semi professionally (i get paid to write part time for an international motor sport blog) so I have been thinking about writing about my weekly experiences with narcolepsy but attaching encouraging messages to it. In a sense, we are some of the toughest fighters out there. :)

We will see if I get around to doing that. It is good and bad in some respects because a lot of employers who do background checks may see your blog and find some bs reason to not hire you. I would suggest hiding the real identity as much as possible .

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Great thread, exanimo!

I checked out everyone’s blog links here.

818sis, I like your post about everything making you tired.

Ben L., great blog title! Your blog is so thought-provoking.

Great point, Wedge – I don’t worry about my privacy quite as much since the blog is about my husband, but I’m still cautious. I’m no Dooce – I have no interest in revealing every single detail of my everyday life.

Johnna, I love your blog! I’m now one of your followers.

I added each of you to my Blogs About Narcolepsy list – hope you don’t mind.

My blog has become quite a refreshing source of therapy for me. I’ve put more and more energy into it, and I think it finally reflects my efforts the way I want it to.

If any of you are ever interested in answering some interview questions by email, just let me know. I’ll add it to my blog and promote your site. The more resources there are out there for people, the better!

forgot to add... Oh, and my blog is in my signature. ;)

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Thanks for the kind words. I am trying Blogger. I want to try both and see if I like one over the other. Besides it's two different networks. I can see if one gets me more followers than another. Both are in my signature now. Feel free to use the one you prefer. I am following everyone and I'll follow anyone who adds one here in the future. Be prepared to hear some comments peeps! This shouldn't be about everyone just waiting for their turn to talk and no one listing. Let's interact. I hope a few of us find a rapport.

Don't worry, I behave.

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I have blogs, and I have blogged about Narcolepsy....but none are really specific to Narcolepsy....though I started one with the intent that it might be, but it soon wasn't.

I keep thinking that someday I'll sit down and pull things together or something....but, there's so many things I want to do when I finally get back to being able to... that it'll probably forget everything I've wanted to blog about, by the time I get around to doing it. Or maybe I'll just make a weak start after the NN conference, like I did after the last one....

The Dreamer.

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I have a blog. The link is in my signature. It's just one way we can all share our journeys and raise awareness at the same time. :)

I'll be checking out the other blogs in this thread as well!

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I refer to my website as my blah'g.

It is 'perhaps' quite heavy?  Actually, there's no 'perhaps'  about that. 

Within it, I dive into a lot of things, things from skateboarding to cataplexy and quite a bit more.

It is -->     http://Narcoplexic.com

 

"Feel free to come and see, what be my own chee.

Hopefully none of you disagree, but if be, no worry."

 

Another twist of wordles:

Rambling On
'This is a bubble, of perhaps my own troubles; yet the fumble is not mine that crumbles.
The broken, so often spoken; is annoying and destroying.
Interacting is distracting, for some such, causing collapsing.
Annoyed and/or near destroyed, while being tired beyond expired.
Some are numb and some act dumb; strum to become rather than slum with scum.
Existence is for instance, both dillusions and illusions.
Confusion and intrusion, is often amusion of anothers abussion.
People are equal, yet often distant as though, inexistant.
To care, is a dare, since often others dispair the care as some altered, affair.
Be it one's mistake, or often be it simply that they fake.
Honesty is not policy, nor modesty; today it is simply odyssey.
As today cheats, often result in treats.
Those that lurch in their perch, smirch whatever research.
Dillusions or illusions; confusions do not equal conclusions.
Percieve before you believe, or rather leave before you thieve.
To have perception requires attention, as well as, reflections upon connections.
The result should be affection, of the connections, not rejections of acception.
Assumption is presumption, and results often in corruption.
Being willingly blind is beyond unkind.
Regardless such is heartless.
Dots are to be connected, and perhaps disected.
Knots are to be corrected, as well as then accepted.
Wake up, don't shake up, nor break up.'

 

Please, don't copy and paste from here, nor there.  

Come, if you dare and don't despair; rather, simply care.

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http://itsmeeeeeejessica.blogspot.com/  

 

 

my blogs are on the left side.....   la la land is what it was like before i knew (it sounds like a bunch of weird paranormall jibber jabber, but i wrote it that way for a reason) its not finished yet though. its age 4-27(when i got diagnosed)

 

then coping with narcolepy is just random things i put in there about past and present things.

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Hmm, I like to jibber jabber too!

"One thing I an I tends to think is along the lines of this: that it may take a little crazy, to make a little smarts; yet smart is what, a dart or fart, upon the chart within some cart inside of a mart?"

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I've been thinking of starting one. If I can figure the thing out I'll try to follow you all!

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I've recently started a uk based blog, http://crazynarcolepsy.blogspot.co.uk I initially intended to use this as cathartic outlet, a platform for me to empty relevant thoughts; however I made a decision a few days ago to go public. It was quite a big thing for me to do, as for years I had attached quite a bit of shame to my limitations and taken great lengths to hide them. I questioned why I was keeping it anonymously and concluded it was pure embarrassment and fear, the two things I would now like to help prevent.

I'd like to focus on the issues that don't really get much attention. Things that perhaps at some point we've googled and not found much info on. Please feel free to suggest topics, I'm really interested in what people would like to read about. So far I intend to look into transport issues (driving licence applications), dating (groan!!), quality of medical advice and support, sex (that's gonna be a fun one!), peoples perception of time and feelings that get attached to an inability to work. I think its about time someone really got to the nitty gritty of how this condition affects us on a personal level, in order to break down misconceptions.

It would be great if people could have a look and give me some feedback :-)

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Hey, remove the . after the .co.uk within the link, to make it work...

Will scope it out.

Thanks for doing it, and the best, to you.

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I started a blog to document my pregnancy since I couldn't find any information about what it was like to be pregnant with narcolepsy. It's not very well done, but I plan to hopefully continue adding to it as I go from being pregnant to being a mom with narcolepsy....

 

http://sleepy-mwn.blogspot.com/

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I started a blog to document my pregnancy since I couldn't find any information about what it was like to be pregnant with narcolepsy. It's not very well done, but I plan to hopefully continue adding to it as I go from being pregnant to being a mom with narcolepsy....

http://sleepy-mwn.blogspot.com/

I think that is great! I am not having kids any time soon, but want to eventually! And I think I'd want to blog or vlog even.

Which reminds me there's a vlog on YouTube and I think she is awesome! She has N w/ C and I really like watching her videos about N.

Link to her YouTube:

Ther are other blogs there too. Sometimes video is a little easier to follow than blogs. I'm glad this thread has had so many responses! Connection is so important to support which is so important to our ability to raise awareness!!

Please keep posting any new updates. I have my LJ but I know I've only updated it a few times. I'll try a littl harder! I'd love to try vlogs as well!

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I have a website about my remission from narcolepsy using a gluten free diet.

Lots of scientific info about Orexin there too.

Hope you stop by.

 

my video.  Heh. 

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Hello,

My name is Bradley Mann and I am new to Narcolepsy Network.  It seems like a great place to share ideas with others whom can relate to our illness.  When reading through the forums and messages, I saw this posting about blogs.  I too was at a loss for similar blogs.  And although I have always been a very private person, a very dear friend inspired me to begin writing a new blog/column on Everyday Health.  Writing was a lifelong dream of mine.  My wife Robynn and I both writing a about our life with Narcolepsy, Multiple Sclerosis and raising a family.  I would be happy to discuss issues with others and would be honored if you would check out our column at http://www.everydayhealth.com/columns/brad-robynn-mann-sleeping-with-ms/getting-to-know-brad-and-his-life-with-narcolepsy-and-ms/

 

Thank You for reading my posting!

 

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Hi Bradley,

 

I just read your blog entry that you linked above.  It is helpful to know I'm not alone.  I don't have a formal diagnosis of narcolepsy, but have had symptoms of it for as long as I can remember.  I was diagnosed with MS a couple of months ago on my birthday so I still have a lot to sort out, but reading your story and other stories like your's is encouraging.

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