Wednesday, January 7, 2015

Napping. I can relate. [MS Fatigue]

I had unresolved fatigue and excessive daytime sleepiness for years before my diagnosis and was even considered as a candidate for narcolepsy at one point (which didn't bear out... leaving me with the far more dubious distinction of being an idiopathic hypersomniac). My multiple sclerosis diagnosis allowed me the advantage of finding treatment for fatigue which has been a real life-saver. I can do my overnight shift work without worry and don't need naps so often anymore, though on occasion, my condition flares up and I find myself seeking places to sleep.

Hence, I give you this fun (but perhaps not so funny, if you struggle with fatigue) collage of images of public sleepiness with my own particular commentary. Why? I would rather lose my ability to walk than my ability to laugh.

From the Dose: 15 People Who Just Needed a Nap

For this to work, just click on the link to see the images, then follow along with my comments below.

1. I have slept in grocery stores. Not quite like this. I usually find the private area in the back by the pharmacy and pull up a chair, pull my hood over my head. I remember it took so much energy for me to walk from the car to the store that I immediately napped before I even started shopping.

I have also slept in those overstuffed chairs at the mall. And whoever decided these were a good idea deserves eternity in nirvana.

A word about those handicapped parking places. They aren't reserved only for the elderly. Many MSers are quite young and do not show outward signs of their disease (I am middle aged, but still, you wouldn't know it to look at me). I know many young people who use these parking spaces legitimately because they have even worse fatigue problems than I do, and they get treated like common criminals almost entirely by elderly people who don't even use these spaces. Stop it already with the reverse ageism. Rant over.

2. I had a 2-hour drive down the I-5 corridor one afternoon and, halfway down, I pulled over at a casino, parked in the way back and napped until some guy (not security) knocked on my car window and scared the holy shit outta me. Oh, and I have pulled over in traffic on the Kennedy expressway in Chicago during afternoon commuter hour and napped as my car was buffeted by semis speeding past at seventy plus. The need to sleep can be that irresistible.

3. I have fallen asleep in yoga classes, but only in the corpse position. And snored. I am not ashamed.

4. I have yet to fall asleep on the job during my overnight shifts, but that is because I take modafinil. However, I used to faceplant, asleep, into my laptop during live Skype teleconferences in which I was actively engaged. In fact, that was why I finally saw a doctor. I realized, "This can't just be the life of a working mom."

5 and 6. I have not hidden inside a box to sleep. I might have slept in a fruit crate as a baby, not that I think about it. But that was my crib while camping.

7. I do not recall ever falling asleep in class except on two occasions: I was at a sleep conference (ironically) and the ballroom we were in was overly warm and too dark and all the coffee in the world
was not keeping any of us awake. The second time, I was (also ironically) taking my sleep health educator's credentialing exam (a 450-dollar test) and, as I was going back over my answers upon completion of the test, I kept falling into what are known as "microsleeps." Yes, that's right. I fell asleep during my sleep educator's exam. And yes, that's right. I passed.

8. Who hasn't slept while using public transportation? Trains, planes, ferries, automobiles. Yes, yes, yes, and yes.

9 and 10. See #4 anecdotes.

11. This girl would never fall asleep in any place where food would be readily available and deliverable.

12. Of course. Who hasn't slept in a park? Don't be suspicious, it was during the day, I was on a blanket and I did not use any floating newspapers as a comforter.

13. This is why I don't go the library. Either I fall asleep in the carrels or the noise of other people (their damn cell phones, their damn kids or the general urban hooliganism at the city branch) keeps me from getting my work done. Either way, it's never a productive visit except for the act of selecting media.

14. That is just too adorable. That is all I have to say on that matter.

15. I'm pretty sure I wouldn't be able to do this. Still, I am impressed.

Thursday, January 1, 2015


I used to do resolutions which were top 10 lists for personal, career, health, writing life, etc. (see below). I was way too ambitious then, or maybe I really *could* do all those things then that I can't do now... Who knows? All I know is these long lists create too much expectation now. I'm thinking of a new strategy: one new thing to accomplish for each of these categories of my life, then check in on July 1 to see if I can sneak in another goal for the second half of the year. Who's with me?
And because I'm serious, here are my top 1 lists (2 different categories for body, mind or soul). You can create your lists according to your needs. This just works best for me.

1. Health (body) -- Exercise more regularly, even if it's easy. Just make it regular. MS means I shouldn't overdo it because of the risk of overheating, but while I'm in remission, I need to get my ass moving again. My arthritis, carpal tunnel surgeries and stomach issues have stopped me cold in 2014 and I need to overcome that.

2. And on the Multiple Sclerosis front (body) -- Drink more alkaline water. (Why alkaline? The normal diet of most people is far too acidic. Drinking alkaline water, like San Pellegrino sparkling natural mineral water, may be one way to achieve a more balanced pH. Or maybe not. Why does this matter? An acidic system is also inflammatory, and inflammation is a key problem for systemic diseases like MS. Here's more if you want to read up:
The more I can do to focus on anti-inflammatory food, supplements, even water, the better I can maybe help myself with the constant challenge of inflammation (which also impacts my arthritis). So I am hoping to keep a water journal and use my phone to remind me, if I have to, to hydrate. If not with San Pellegrino, then with electrolyte water. I always feel so much better when I do! Maybe it is all a panacea but I hardly think I can hurt myself by drinking more water. And hey, if nothing else, this study shows it might help me with my reflux:

3. Career (mind)-- Develop my career down a path that allows me to work days only so I can slough off third shift. As much as I love the lab, I don't love how shift work impacts my health. For healthy people, overnight jobs can take a toll on the circadian system, and that leads to imbalances across the entire body of systems. This switch will involve more networking with my website and some entrepreneurial effort, which begins on Jan 2 when I get a business license. I'll keep working in the lab until I can find a suitable alternative that pays close to the same thing, but I've made it my goal to start the migration back to the 9 to 5 lifestyle. It could mean shifting slightly from sleep technology to health literacy or sleep health education. goal was never to be Queen Sleep Tech.

4. Intellect (mind) -- Go back to reading for pleasure daily. Started doing this in November and I'm on a roll. I read a lot for work but never for fun. I have struggled to read for pleasure because of blurred vision from fatigue and failure to actually be able to comprehend words during a flare (which is why I left my editing life). I still read very slowly but that matters less than the escape I can achieve riding the waves of someone else's words.

5. Personal (soul) -- Practice more meditation and pranayama for health, relaxation and wisdom overall. What used to be criticized for being New Age snake oil now has some scientific evidence behind its efficacy for those with neurological disorders. 

6. Writing life (soul) -- Copy everything I have ever published and bind it into a single notebook; I find that going back and looking at my previously published work can be motivational for generating new writing. I hope to be motivated to do more nonfiction writing--about MS, about sleep, about mental illness--and having this piece of external "proof" of my validity as a writer is no small thing. Living with being a stay-home mother for most of my kids' lives, working as a writer: these are all ways to become isolated, and in isolation, we can lose sight of our presence out in the larger world.