Tuesday, February 9, 2010


I am having sleep issues right now. Spent most of last week in bed (probably sleeping at least 14 hours a day and actually in bed for about 22 hours most days). Was finally up Saturday morning, back in bed Saturday afternoon and through the night. Up Sunday, and even had friends over for a couple hours after church, then only slept a frustrating total of only 4 1/2 hours Sunday night (not for lack of trying - I went to bed around 9 and stayed there until daylight, but insomnia and pain had other ideas).

Yesterday I was "OK" through the day, out of bed most of the day, and even made it to my writer's group last night, a special treat I had not expected to feel well enough to be able to attend. But I could tell on the ride home that I had overdone because I found myself driving 50mph and still feeling like the world was whirling around me. I was actually getting quite scared about my ability to safely drive myself home even though it was less than 15 minutes from the bookstore to our driveway, but at that point my only other alternative would have been to pull off onto the freeway shoulder and that didn't feel very safe either as I was fearful I would plow right into the guard rail or not be able to navigate well enough to get fully out of the lanes of traffic. I am very thankful for God's protection of both me and the drivers around me and I will try very hard not to get myself into that kind of situation again, though that's part of the frustration of this illness, never knowing when my body will fail me. :(

There are an assortment of links I wanted to share today. First, Dr. Donica Moore, who has recently named as a spokesperson for the Whittemore Peterson Institute, wrote a great article last December about how XMRV Sheds New Light on Chronic Fatigue Syndrome, telling simply what CFS is and is not. For anyone looking for the basics, this is a great place to start.

Another couple of links deal with the story of Louisa Ball, a 15-year-old young lady living with "Sleeping Beauty Sickness" or Kleine Levin Syndrome. I share these not because there is any known link between Kleine Levin Syndrome and CFS or XMRV (though I would personally be fascinated to see if Louisa could be tested for XMRV), but because it pretty clearly describes my life in 1991/92 when I dropped out of college after struggling through 2 semesters where I basically just attended classes and slept. I moved back home, sleeping anywhere from 18 to 23 1/2 hours out of every 24 for several straight months. I have very few, very sketchy memories of that year and, like Louisa describes, even when awake, I wasn't truly engaged in life happening around me. My parents describe shaking me and yelling in my ear and being unable to wake me, my mom even near to calling 911 more than once, unable to tell if I was even breathing.
Even now, when I am in sleep mode, I can sleep for 14-16 hours, trying desperately to wake myself up, and unable to open my eyes, dreaming over and over that I have finally struggled to wakefulness, only to realize I'm still asleep and have to begin all over to force my eyes to open. The process of trying to awake can itself become exhausting! The only thing significantly different from my story and the bit Louisa describes in her interviews is that while Louisa struggles with weight loss, I gained weight rapidly during my year of near-constant sleeping and I am again struggling with weight gain right now, during this season where I'm in bed so much.
Here is Louisa's story:
MSNBC - Sleeping Beauty
Yahoo - Girl is a Real Life Sleeping Beauty

And finally, here is a link from K-Love radio about Chronic Pain and Illness. The brief radio interview and linked sites are all very helpful, and while I welcome you to explore them, I'm primarily tacking the link here for myself for future reference as I know I will want to explore these again. :)


Joy said...

Hi Jenni, thank you so much for visiting my blog and for your kind comment. Just from glancing quickly at your blog, it sounds like you've had quite a difficult road yourself. There's nothing quite like meeting another kindred spirit, though I hate that others have grieved losses too.

Triumph said...

Hi Jenni, I read your blog from time to time and find that you are an example of a strong and resilient woman.

I have nominated you for a beautiful blogger award, go to my blog and check it out.

Lori said...

Prayers for you...my sister suffers from CFS, though it is co-morbid with Lupus among a million other things she has) so there are times where she doesn't know if it is the CFS, her fibromyalgia pain and fatigue or a lupus flare-up. I know how hard it is for her.
My heart goes out to you for strength and for others to understand.