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.

RESOLVED FOR 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: http://www.jleukbio.org/content/69/4/522.full. 

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: http://www.ncbi.nlm.nih.gov/pubmed/22844861

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. Fine...my 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. 

How I am feeling at the end of 2014

Quarterly Gratitudes from an MSer: December 2015 edition

First of all, I'm grateful you are all reading this since I have not posted at this blog since September 1. One of my goals for 2015 is to get into a regular pattern with the CraterBrain blog again. More on that later. 

Second, I'm happy to wish everyone a fabulous holiday season!

Third, I'm gonna get right to it because it's redundant to start a list with a list, no? 

Just one of many
great resources

1. Gratitude always goes to my online MS cohorts who are true champions for the cause. A lot of people with MS barely understand the disease, but there are some bright lights in the mix who know how to interpret the research, know how to differentiate snake oil from real science, know how to share their experiences and help others in a way that is not at all self-serving, but rather a gift to so many others who are still finding their way in the MS wilderness. I'm talking especially about you DK, and SS, and AG. 

2. I attended an MS "road show" this fall that was inspiring on multiple levels. I learned a bit more about things like lesion load and was able to get to the bottom of some unfounded rumors about the main disease modifying therapy I'm on. I almost didn't go to this event but am so glad I did now. 


3. We bought ourselves a really nice RV over the fall that we have already used twice and I'm making plans to use it regularly in 2015. The long-distance traveling by plane is really becoming less and less of an option... I really don't tolerate the experience well anymore and dread the possibility of flying in the future. It takes too much energy, it is overstimulating and fatigues me, I always get overheated, and the unpredictability of flight travel just adds to the stress bomb. I need a vacation once I get home because of it. Not so much with the RV; we live in a part of the world when I can go just one hour from home and feel like I am halfway across the continent. The simplicity, the comfort, the fresh air... my kind of vacay!

4. A repeat from my last two gratitude check ins: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them. I had to drop them briefly, twice, to get carpal tunnel surgery, and it was made obvious by their absence that my body needs them to operate at maximum. 

5. I've had two carpal tunnel surgeries. The first, in September, took longer to heal than I expected but the numbness is gone. I'm recovering from my second (operation was just last week) more quickly this time, and will be glad to get back to things like yoga again, which probably won't happen until January as I won't be able to put weight on my recovering wrist for a few weeks yet. Still, glad to have a great surgeon, and the hospital system I am a part of was pure excellence.

6. I'm grateful for more time for reading than I've had in the past. Deeply involved in an epic novel by Ann Rice right now. Hoping for more of this in 2015. It feels good to be able to read and not struggle with migraines or weird cognitive hiccups that make it difficult to comprehend.

7. Grateful for nary a symptom, most days. When I was first diagnosed, I kept a daily journal that filled two or more pages with details of symptoms and side effects. Now, I might have 1 or 2 slight symptoms a week, not even worth cracking the journal for. I live in constant amazement of this reality and do treasure my sense of "normalcy" now, as it so much resembles my "normal" life before diagnosis.

8. A key symptom of multiple sclerosis is something called an "MS hug." This is a deep cinching feeling at the torso which makes it difficult to breathe without great pain. I have not experienced this as an adult, that I'm aware of... but when someone described this experience recently, I realized it was something I used to have when I was a kid, age 10 or 11. It's funny how you have certain physical sensations and just think that is "normal." Certainly, nobody raised an eyebrow when I complained about this vice-like grip around my ribcage and the inability to take a deep breath when I was a kid. I remember my mom, or maybe it was my grandmother, telling me I had a touch of "the pleurisy." What I'm grateful for, here, is the fact that somebody online took the time to accurately characterize the sensation so that I could relate to an experience I had which had been previously lost in memory. And also grateful, weirdly, to realize I've probably had MS to some degree for nearly 40 years. This means that my disease progression is on a very slow course, and that, indeed, is very good news.

Tesla 3 MRI: Extra roomy!!! 

9. I am still so happy for the kind of care I receive from my doctors. My primary care physician is amazing. I went in for concerns about pulsate tinnitus, which may be symptomatic of intracranial hypertension (which we have not yet ruled out as a separate condition). The sensation was so extreme that the doc sent me in for a Tesla 3 MRI to take a look at my cranial arteries to rule out aneurysm. Gratitude part A: no aneurysm! Gratitude part B: having a Tesla 3 MRI and learning that MRIs were first developed as a technology to help diagnose MS, specifically. 

10. Finally, I'm glad for the end of 2014. For me, it was mostly a great year, but I know that it has been hell for many of my closer friends. I want 2015 to be a year of mindfulness, creativity and restoration, not only for me, but for them. I would love to be able to pay it forward for all the wonderful people who have helped me along these last couple of years. 

Quarterly Gratitudes from an MSer || Top Ten GOOD THINGS in my life right now

Burning Bush, September 1, 2014. 

Welcome to my front porch!

Plumbago blossoms

Wow, where did the summer go? Wait, it's still here. Sunny and beautiful in the Pacific Northwest and more to come. I love September.





1. I know, I am a broken record (and I'm antiquated too, since I'm using that phrase)... but I have amazing children. Beautiful, smart, strong, funny. Focusing on them means less time to focus on my MS.

2. I'm also gifted with some amazing friends. Not only do I feel like they are right there with me when I'm on a trip across the country (thanks to Facebook!), but sometimes I even run into them live and in person in faraway places (Loretta!) and that's a real pleasure. They are my major source of laughter, intellectual stimulation and advocacy.

Rose of Sharon

   3. I just spent 10 days in New York and I lost weight. 
   Not a lot. But enough that I can sigh with relief and 
   know I won't have yet another 5-10 pounds to add to 
   my list of things to take care of. It wasn't all hearts
   and flowers, though: the heat got to me on two 
   separate occasions, and I had a violent tremor 
   that I'm sure was my body's response to muggy high 
   heat and the stress of travel. But I'm feeling much 
   better now that I'm home. 

False spirea

4. A repeat from my last gratitude check in: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.

5. A shift in my schedule. With one kid off to college, it will be a little more quiet around here and a lot less busy (and with way less laundry to wash). I'm excited for my daughter and know these next few weeks without her will be spooky, but I'm grateful for a lighter load of parental duties at the home front. And she's gonna be just fine where she's at. I feel like I can really hunker down and get back to some meditation, yoga, walking, and even some trips to the gym, as well as eating better, drinking more water and just taking time to be with friends.

6. Loads of DVR recordings to catch up on. It's how I get my chores done. Old stuff, new stuff, movies. And (see #5) there's potentially more time for more books. I'm reading several right now in fits and starts. I'd like to make that more consistent. My fatigue is more or less under control, so it's doable.

7. I have a whole new pot of gold to develop into essays, stories, poems etc. thanks to time spent at a writer's conference in July and the purchase of numerous small journals which I have tucked into every nook and cranny so as to capture fleeting genius whenever it strikes. (Once captured, it may not be genius anymore, but that is beside the point!) I'm thinking about writing about my MS now, more formally, as well as other topics. 

Pansies popping!

8. My neighbors stepped up and helped my husband throw our annual neighborhood bash while I was out of town. Who can claim to have such awesome neighbors?? I've never known this kind of community, having moved so often as a kid. It's pure gold. I know that, were my MS to take a turn for the worst, my neighbors would be the first line to help out my family and I.

9. I planted my yard to be awesome in the fall. And it is. The false spireas and the plumbago are just absolutely gorgeous right now, as is the Rose of Sharon. New pansies are bursting from the pots as well and will keep doing so into the late fall. Burning bushes are tipped in red as well. Fall is here! Yay! MS has enhanced my appreciation for the little things: the flowers in the yard, the birdsong outside my bedroom window, the cool breeze through the trees, the brightness of stars outside the airplane window.

10. Recognition for my writing. I recently won a literary prize for an essay I published last spring. It came with some cash-money as well. It's no small thing to be validated in this way, and I can probably squeeze a whole year of encouragement out of that single attagirl. Again, like in #9, it's the small unexpected surprises of life that can keep a person moving forward.

New MS drug approved!

This one's from the maker (Biogen Idec) of the drug I use (Tecfidera). From the MSAA article: 

"On August 15, 2014, Biogen Idec announced that the United States Food and Drug Administration (FDA) had approved Plegridy™ (peginterferon beta-1a) for the long-term treatment of relapsing forms of multiple sclerosis (MS). Manufactured by Biogen Idec, this new medication is the 11th disease-modifying therapy (DMT) to be approved for MS since the early 1990s. Plegridy is given once every two weeks through a subcutaneous self-injection."

Yet another injectable, but at least it is every two weeks, so much better than daily. People who takes injectables for MS suffer from "injection fatigue" as well as a beesting-like pain and scar tissue at all the various injection sites on their bodies. This new form of the interferon therapy should be a boon for many. It still has the flu-like symptoms as a potential side effect, but that is nothing new with MS patients taking injectable disease modifying therapies (DMTs). 

Keep in mind, this is yet another treatment for the relapsing remitting form of MS (RRMS). For those progressive forms of MS (primary progressive or PPMS, secondary progressive or SPMS, and progressive relapsing or PRMS), there are still NO treatments for halting progression. (There is no cure for any form of MS, only DMTs which show a slow-down or halting in disease progression.)

FOUND! My mind

I know, this is a very short post, coming from me! But I wanted to share some good news... I was able to access the results of my neurocognitive tests from July 3 and am encouraged and relieved to find my results are very good. In effect, I'm not losing my mind! So today... a celebration. More about this fascinating experience in a future post, I promise.