Hypersomnia Foundation

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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

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Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

Caitlin Swinford
Germantown, MD

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Journey, Share the Journey Stories, Social Media, SomnusNooze

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NEWSFLASH!

With seating beyond planned capacity at the conference in Denver and to make the #BeyondSleepy conference more accessible, we will be streaming the entirety of the conference, including the question-and-answer portion. Thanks to a tech-savvy volunteer,Strike we will not only be livetweeting the conference from our Twitter account (@HypersomniaNews), but will also be able to accept your relevant questions. So tweet your questions using the hashtag #AskBeyondSleepy.

Please don’t wait until the last minute to register! Our website is a bit crotchety and slow, so if everyone tries registers at once immediately before the conference, you may miss part of the program!

We look forward to your participation in the conference!

Posted in: BeyondSleepy, Conference, Hypersomnia, idiopathic hypersomna, Kleine-Levin syndrome, narcolepsy, News, Social Media, SomnusNooze

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Put Your Napping Skills to Work and Win Prizes!

If, like me, you have hypersomnia, I’m sure you’re no stranger to napping wherever it’s convenient: in class, at a stoplight, under your desk, in a library, in a corner at the bookshop, at a table in the cafeteria, in an empty conference room… this is the reality for so many of us. Heck, as a child, I mastered napping on the mat outside my shower and nappingeventually transitioned to actually napping IN the shower before school. My mother couldn’t figure out what was taking me so long and why our water bill was so high. (Of course as an environmentally responsible adult, I feel terrible about all of that wasted water.)

Having finely honed our napping skills, we now have the opportunity to put them to great use and win some pretty cool prizes. Arianna Huffington’s Sleep Revolution has launched an Instagram contest called “Where Do You Nap?” To enter, simply:

  • Post a picture on Instagram of your favorite napping spot.
  • Include the contest’s TWO MANDATORY HASHTAGS#SleepRevolution & #Contest.
  •  To help raise awareness of hypersomnia, please also include the hashtag #BeyondSleepy. 

Eighteen people will win Marriott gift cards and a voucher for round-trip travel on Jet Blue. Drawings will take place on various dates, and only legal US residents are eligible to win prizes. To check out all of the rules and more information on prizes and how to enter the contest, visit http://ariannahuffington.com/contest-rules

By Jennie Murray

Posted in: Awareness, BeyondSleepy, Hypersomnia, idiopathic hypersomna, Instagram, Kleine-Levin syndrome, narcolepsy, Social Media, SomnusNooze

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Let Me Count The Ways…

Let Me Count The Ways…

Let-Me-Count-The-Ways

We all have our ways of supporting causes that are important to us.  When it comes to the Hypersomnia Foundation, for some it is volunteer work, such as for our conference, for our Board, or on our Board.  For others it is making donations, such as monetary or product gifts.  For most of us, it is doing something frequently that keeps the spirit of support strong.

There are many things we all can do on a daily basis that will honor our commitment to the work of the Foundation.  Ten free ones are described below. Which are your ways?

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Posted in: Awareness, Social Media

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2015 Hypersomnia Conference Registration is Now Open!

2015 Hypersomnia Conference Logo

 

The 2015 Hypersomnia Conference Registration is now open.  Won’t you join us at this special event?

The 2015 Hypersomnia Foundation (HSF) conference to be held Friday July 17, 2015 – Saturday July 18, 2015 at the Emory Conference Center Hotel

1615 Clifton Road, NE

Atlanta, Georgia 30329

HSF is dedicated to educating, advocating, and resourcing so that people with Hypersomnia can live optimal and fulfilling lives.  The goal for this conference is to play a key role in helping people with Hypersomnia, their supporters, medical professionals, and scientists in the field increase their understanding of Hypersomnia.  The Conference provides the opportunity to learn about the latest in Hypersomnia research and treatments and offers a forum for discussion among professionals concerned with Hypersomnia.

For more information about the conference and to register to attend this special event, click here.

Posted in: Awareness, Education, Research, Social Media

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The Hypersomnia Foundation’s 501 (c)(3) status has been approved!

We are so excited?! We have great news, and we want you to be the first to know. The Hypersomnia Foundation received a letter from the Internal Revenue Service stating that we have met all of the requirements to be a charitable organization. That’s right. The IRS has officially APPROVED the Hypersomnia Foundation’s 501(c)(3) status!  

Not only are we exempt from paying federal income tax, but contributions made to the Hypersomnia Foundation by individuals and corporations are deductible under Code section 170. You will want to check with your tax advisor, but, basically, this means that any donations made to the Hypersomnia Foundation on or after January 21, 2014, are tax deductible to the extent allowed by law.

See our recent Newsletter for more details

Posted in: News, Social Media

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The Hypersomnia Foundation has submitted our 501(c)(3)!

Working with attorney

 

Read our latest Newsletter by clicking on this link.

 

 

Topics included in this Newsletter include:

  • Our 501(c)(3) has been submitted
  • 2015 Hypersomnia Conference Announcement
  • The Hypersomnia Foundation’s current initiatives
  • Our social media links
  • 2014 Hypersomnia Conference DVD Order Form

Want to make sure you our next Newsletter comes to your inbox?  Subscribe to our Newsletter here.

Posted in: Awareness, Education, News, Social Media

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