Weekly Inspiration: Under Pressure

I had a rare day to myself on Friday (my son left early for a weekend away) that I had been looking forward to, but within a couple of hours I was feeling stressed, overwhelmed, and out of sorts. I stopped to consider why I was feeling like that and realized it was due to several different sources of pressure all converging on me at once.

I have spent the past few months rushing to finish editing my book, Finding a New Normal: Living with Chronic Illness, and now that I have one last review of the 5th and last round of edits from the editor I hired, I am suddenly realizing that the timing isn't right for publishing it now. We have a week-long vacation coming up, and I don't want to publish my book and then not be around to promote it and market it. At the same time, my mom had surgery recently, and I had planned to visit and help her out this week, but her husband will be there this week, so she actually needs my help next week ... and we leave on that trip at the end of next week! She wanted me to stay for longer than I thought I could manage, with needing to prepare for (and not be exhausted for) the trip. And, silly me, I was hoping to walk a 5k on Saturday! It's a goal I have been working toward for years, and--thanks to a variety of treatments for exercise intolerance and a lot of hard work--I am ready for it. But squeezing it in this weekend, with everything else going on, was just too much.

I was feeling pressure from all of these different sources and thinking of the David Bowie/Queen song, Under Pressure (which is a fabulous song!):



With all that going on in my life, no wonder I was feeling out of sorts and stressed! Once I had pinpointed the sources of tension that were bothering me, I realized it was not all out of my control. I could take steps to reduce my own stress and relieve some of that pressure. So, Friday afternoon, I decided to:

• Postpone publishing my book until after our vacation, in December. That deadline was completely self-imposed. That's one less thing to deal with before we leave!
• Cancel plans to walk the 5k this weekend. Again, it was a self-imposed deadline because I really wanted to meet my goal before the end of the year, but it was just plain stupid to attempt such a big milestone (and heavy exertion) with so much else going on. Besides, it ended up being in the 20's (F!) Saturday morning - definitely a good decision.
• Hardest of all, I told my mom I could come from Sunday through Wednesday but would have to leave after breakfast Wednesday, as I had originally planned, in order to get ready for vacation and not end up crashed for our trip. I so want to be there for my mom, so this was the hardest step of all, but I realized I have to take care of myself, too. This is our dream trip that we've been planning and looking forward to for ages, and I don't want to spend the first few days in bed. The travel days will be hard enough, without exhausting myself ahead of time.

With those decisions made, I felt like a weight had been lifted! Next, I embarked on Part 2, leaning into that release of pressure and relief of stress by relaxing. This weekend, I:

• Went to my massage therapy appointment on Friday afternoon. This therapy is more painful than relaxing, but I really needed my massage therapist to work out some trouble spots and loosen up my muscles (hmmm...another result of all that stress?).
• Came home and told my husband we were ordering pizza for dinner! This is a BIG treat for us, since I am intolerant to dairy and don't usually eat grains, either. Plus, we had no cooking and no dishes. The pizza was amazing, and we watched an extra TV show while we ate it.
• Had a date night with my husband Saturday--went out to dinner with our oldest friends and watched a fun movie at home.

So, now it is Sunday, and I am feeling better all around. My husband and I thoroughly enjoyed our "empty nest" weekend together and also got caught up on some long overdue stuff at home. I still have a lot to do in the next two weeks, but it feels more realistic and possible now.

I realize it is ironic that I am writing a book about emotional coping and daily living with chronic illness, yet I got into a situation where I felt out-of-control and stressed! In the end, though, I applied some of the tenets from my book--like considering what I can control, adjusting my plans to meet my needs, and allowing myself some downtime--and it worked. I am feeling better now and am ready to tackle these hectic couple of weeks ... and then enjoy a much-needed vacation with my family.

How do you handle pressure? 

What do you do when stress becomes overwhelming?

Clearly, I am still learning, so I would love to hear about your experiences in the comments below.

Weekly Inspiration: Resilience

Plenty of research has shown the importance of resilience in health and happiness. Resilient people have more joy in their lives, can better bounce back from challenges, and deal with daily stress better. Those of us living with chronic illness certainly need plenty of resiliency, to deal with both day-to-day symptoms and stresses, as well as unexpected relapses and other crises. But, how do you become more resilient?

Dr. Raphael Rose, a clinical psychologist, talks about resiliency in this TED Talk, How Failure Cultivates Resiliency:



He describes several different ways to increase resiliency, all of which are relevant for (and adaptable to) those with chronic illness:

Seek Out New Experiences
True, many of us are now quite limited by our illnesses. Perhaps you can no longer learn to dance, start playing a new sport, or travel to other countries. But, there are still plenty of ways for us to seek out new experiences. One way is to meet new people, whether online or in-person. This has been one of the silver linings of chronic illness for me, meeting so many amazing people, both in my town and from all over the globe. This blog post on Finding Community links to an article I wrote for ProHealth with specific tips on how to find others like yourself (online and in-real-life), as well as links to some of the places where I hang out online with others dealing with chronic illness. There are lots of other ways to seek out new experiences, too: learning a new skill like knitting or programming, starting a new hobby like video games or crafting, or even starting a business from home.

Pursue Meaning
Dr. Rose also talks about the importance of seeking meaning and how it can be an immediate salve to stress. That's what this weekly inspiration post is all about! Read inspiring books, watch TED Talks and other inspirational speakers online, and listen to podcasts on meaningful topics. You can also look back at past Weekly Inspiration posts here for more ideas and inspiration. You can find more inspiring blog posts on the Chronic Illness Bloggers Facebook page.

Slow and Gradual Behavior Change
Dr. Rose discusses how failure and stress can provide the impetus for change, but that small, gradual changes are far more effective. I wrote about the same thing, specific to those with chronic illness, in my article for ProHealth on Strategies and Tools for Changing Habits.

Be Compassionate with Yourself
Finally, in this talk Dr. Rose emphasizes the importance of treating yourself with compassion, something that many of us probably struggle with the most. When you live with restrictions and are unable to do so much, it is easy to blame yourself and feel like a failure, thus increasing stress. Dr. Rose says that being compassionate with yourself helps to build resilience.


We could all use more resiliency in our lives. Check out Dr. Rose's talk and his tips for being more resilient.

Have you tried any of these approaches yourself? What role does resilience play in your life?

TV Tuesday: Unbelievable

My husband and I recently finished watching the Netflix series Unbelievable. It is based on a true story, described in a Pulitzer Prize-winning article, about a young woman who is charged with lying about being raped and the two female detectives who manage to track down a serial rapist. This powerful and compelling series kept us rapt.

The story begins with Marie, played by Kaitlyn Dever, a young woman in Washington state who recently "aged out" of the foster care system, after being bounced around from one home to another. Marie is trying hard to establish an adult life for herself, though her difficult upbringing makes that challenging as she tries to gain self-confidence and learn to support herself. In the first episode, Marie is raped when a man breaks into her apartment in the middle of the night. Shaken and terrified, she calls the police, but they can't find any forensic evidence. Two male detectives interview Marie about the details of her horrifying experience over and over and pressure her until she finally agrees that maybe she's mistaken, making her a pariah in her community for "lying" about being raped. Meanwhile, that same year in Colorado, another young woman, a college student named Amber, is raped in her apartment, and the details are remarkably similar to those of Marie's case. Detective Karen Duvall, a female detective in her small town played by Merritt Wever, becomes obsessed with Amber's case, wanting to help the now-terrified young woman, and begins looking at other nearby towns. She meets Detective Grace Rasmussen, played by Toni Collette, a more experienced detective who has a case in her city that could be the same rapist. The two women team up and find other potential matches across Colorado, but this perpetrator is very careful and leaves little or no forensic evidence. The two detectives are certain, though, that they are on the trail of a serial rapist who has ruined many women's lives, so they work hard to get to the bottom of the cases.

Unbelievable is a super-suspenseful detective show, but it is also so much more than that. It delves into the victims' lives and takes a close-up (and horrifying) look at the way that rapes are often not taken seriously, especially when the victim "seems" unharmed physically. Even if the women do report their rapes - and many do not - they are subjected to hours-long physical exams that are humiliating and traumatizing, on top of the assault they already endured. And then, if there is no obvious evidence, some of them are further damaged by disbelieving police officers, as Marie was. Obviously, given the subject matter, parts of this show are disturbing, though there is nothing too graphic shown. The rapes themselves are mostly seen in victims' flashbacks, as brief memories. As a police procedural, the show is riveting, and the team of Wever and Collette completely pulls you into the story, showcasing the detectives' determination and commitment, as they ignore their families and their own health to try to solve the cases. The fact that all of this is based on a true story just makes it even more gripping. All of the actresses playing victims do a great job, but Dever, as Marie, is particularly moving n her portrayal of this young woman who feels she has no control over her life. We were rooting for Marie to not only be vindicated but able to heal and move forward. The entire series is just eight one-hour episodes, but there is a lot of emotion and power packed into this high-quality show.

Unbelievable is a Netflix original program, so it is available exclusively on Netflix.

Movie Monday: El Camino: A Breaking Bad Movie

Saturday night, after a nice dinner out with friends, my husband and I settled onto the couch and recliner with our hot cups of herbal tea (me) and decaf coffee (him) and enjoyed a new movie on Netflix called El Camino: A Breaking Bad Movie. We were big fans of the Breaking Bad TV show (though very late to discover it, just last year!), and we enjoyed this sequel that shows what happened to Jesse after the end of the TV finale.

If you haven't yet watched the Breaking Bad series or seen the finale (and you want to), then go finish that before reading this review. It's impossible to describe the movie without spoiling the show's ending a bit. On the other hand, if you are not interested in watching Breaking Bad, I've heard some reviewers say that this movie still works as a stand-alone.

This movie is an immediate sequel to the TV show, beginning just seconds after the finale of the TV show ended. Jesse Pinkman, played by Aaron Paul, escaped an absolute bloodbath of criminals at the end of the finale. As the sole survivor, Jesse flees the scene of the massacre in an old El Camino that was owned by one of his captors. A group of Neo-Nazis kept Jesse prisoner in an underground cage, letting him out only to cook that special blue meth that he and Walter were famous for, keeping him chained up even as he worked in the makeshift lab. As the movie opens, Jesse is finally free, but the police are after him, knowing he was the sole survivor. Of course, Jesse begins by heading to the home of his two best friends, Badger (played by Matt Jones) and Skinny Pete (played by Charles Baker). Jesse looks...well, like he's been kept chained up in a cage for many months, and his friends let him in and help him out. Once Jesse is cleaned up and rested, he trades cars with Badger and heads out, to keep his friends from getting in trouble. Jesse wants to disappear, like he's previously planned before everything went wrong, but first, he needs money. He's searching specifically for money hidden by one of the criminals, Todd, played by Jesse Plemons. Todd is the coldest, scariest psychopath you will ever come across! (Well, hopefully, you and I won't ever come across a psychopath, but you know what I mean.) Flashbacks fill in details of some of what happened between Jesse and Todd, painting an even creepier picture of the violent criminal. Much of the movie is about Jesse trying to get enough money and set up his escape, with flashbacks to previous events new to the viewer.

We thoroughly enjoyed this movie, especially getting to see what happened to Jesse after Breaking Bad ended. It's a satisfying ending to his story. I've heard others say that you don't need to have watched Breaking Bad at all to enjoy the movie, but I think you would miss a lot of references without that background. Aaron Paul is wonderful in his role as Jesse, not only bringing all the talent he brought to the TV show but also showing how deeply damaged Jesse is from his experiences, while still holding onto his humanity. Jesse Plemons, on the other hand, shows not an ounce of humanity in his role as the freakishly cold Todd, an odd combination of ordinary guy and stone-cold killer. He is completely void of emotions, and the scenes when he takes Jesse on a "field trip" from his prison to help him with something are powerful. Just wait until you see Todd's apartment! Beaver and Skinny Pete provide a sense of humor, as always, and show the depth of their friendship with Jesse. As with Breaking Bad, there is plenty of action in the movie but also plenty of thoughtfulness. There is even a touching flashback of Walter and Jesse, before Walter got so crazy. It's a perfect wrap-up of Jesse's story, and we thoroughly enjoyed it. A must-see for any Breaking Bad fans and probably entertaining for non-fans, too.

El Camino is a Netflix original movie, so it is available on Netflix, as are all seasons of the Breaking Bad TV show. Breaking Bad is also available for streaming on Amazon, starting at $2.99 an episode or $9.99 a season. It is also available on DVD, including the complete 6-season series.

Weekly Inspiration: Joy in Autumn

Fall is my favorite season! There are so many things that I love about this time of year that I wanted to share them with you and inspire you, too, to celebrate the changing seasons.

I wrote an article for ProHealth on The Joy of Celebrations (and included it in my forthcoming book, Finding a New Normal: Living with Chronic illness). It's all about finding small ways to celebrate to add joy to your life. While the article focuses mainly on smaller holidays, the changing seasons are a great excuse to celebrate as well. Here are some of the ways we've been enjoying the autumn season so far:

Changes in the Natural World
Of course, the first thing most people think of with autumn is the changing colors in the trees, and it is one of my favorite parts of this season. Spotting a brilliant red sugar maple makes me happy.

Red leaves on a sugar maple always make me smile!

If you are able, this is a great time of year to take a short walk in your neighborhood or a local park or nature center. If you can't manage a walk, ask a friend or family member to push your wheelchair along a paved trail. The eye-popping colors will lift your spirits, especially on one of those perfect fall days with a bright blue sky as backdrop. This photo was taken at our local nature center - still lots of green there but with plenty of pretty yellow to brighten up the landscape:

Greens and yellows at our local nature center last week

Even if you are unable to leave the house, look out the windows to watch the leaves changing color, bit by bit - it's amazing how much things can change outdoors in just a day, especially if you get some wind or rain. If the leaves don't change color where you live, check out some photos online of the fall colors. Another ME/CFS blogger, Not Just Tired, started a changing seasonal hashtag. Currently it is #JoyinAutumn. Use it on Twitter, Instagram, Facebook, or your own favorite social media platform to view some gorgeous fall photos and to share some from your own world! I love to share and see others' glimpses of natural beauty (or perhaps your favorite sweater or pumpkin spice latte!).

Changing Temperatures
Ahhh...finally, some comfortable temperatures! I love the weather in autumn. ME/CFS makes me especially heat-intolerant, and we still had temperatures up to 95 and humid in the first week of October here! So, when it finally does cool down, it is a huge relief! I also love being able to wear jeans again (my favorite comfort clothing), along with socks and sweatshirts. That crisp, cool fall air just feels so wonderful after the brutal heat of summer.

Fall Food
Of course, pumpkin spice is everywhere this time of year! That signals fall for a lot of people. I made Paleo Pumpkin Pancakes (recipe at the link from Against All Grain) this morning, with crumbled bacon and chopped pecans (and maple syrup, of course) on top. Yum!! So delicious and definitely tastes like fall. You can find lots more wonderful pumpkin recipes at Against All Grain.

For my family, October means it's time for our annual visit to a local farmer's market, Northbrook Marketplace, for hot cider and freshly made apple cider donuts. This favorite spot of ours used to be a huge farm, with apple orchards and pumpkin patches, hayrides, and even a petting zoo. They sold off most of the land, so it's just a little country store now...but they still have those amazing donuts (which are definitely NOT Paleo!), and we still go every fall!

We went early this year since our sons have very busy calendars. We still buy our pumpkins there, too, which brings me to...

Halloween
Halloween is one of my family's all-time favorite holidays! It's such a low-stress holiday - no big family gatherings or gifts to buy. It's just a few weeks (or a month!) of fun, spooky themes and one night of costumes and candy - what's not to like? I will be putting up our Halloween decorations today - pumpkin-, skeleton-, spider-, and ghost-themed stuff we have collected over the years (a few examples from past years below). That will get us all in the spirit!

We'll carve pumpkins next weekend, a tradition we all look forward to, and roast the pumpkin seeds while we play a fun Halloween album we've had since the kids were small.

 

My husband and I do miss the days of trick-or-treating with our sons. We always dressed up with the kids - often with a family theme - and all four of us went out trick-or treating together. I usually only managed our cul-de-sac and the next one over, but it was still a blast to bring to life all those childhood memories of running around the neighborhood in costume on a cool fall evening. Halloween is definitely the best night of the year when you're a kid! So, no more costumes, class parties, and trick-or-treating at our house (our sons are in their 20's), but we still get to answer the doorbell and hand out candy to the adorable neighbors' kids in costume. I also enjoy watching all the Halloween-themed TV show episodes this time of year. And I may not dress up in costume, but I still enjoy wearing my Halloween socks and earrings and some orange and black this season! Hmm...maybe I'll paint my nails orange next week...

Halloween 1979 - I'm the old lady!

Our Star Wars theme with our sons!

Ah, fall! I love it!

What are your favorite parts of autumn? How do you celebrate the changing seasons? Share your ideas in the comments below!

ME/CFS In the News & Advocacy

I'm back! Please excuse my absence from the blog (and from much of social media) the past few weeks. I have been furiously working on editing my forthcoming book, Finding a New Normal: Living with Chronic Illness. The last time I wrote a book was more than 20 years ago, so I had forgotten what an arduous job editing is! Besides, I wasn't yet sick back then and it was all done with pen and paper (!), so this was a different experience. It was worth the exhaustion and stress, though, because I turned it back over to my editor yesterday, and the hardest part is finished now. I've got a great editor who is helping to make the book the best it can be. I hope to publish it before the end of the year!

So, for today's post I have a catch up...a bunch of videos about ME/CFS in the news recently and some advocacy efforts. It's exciting to see how much is happening - word is finally starting to get out!


ME/CFS Featured on The Joe Madison Show

Joe Madison, a "tireless advocate for African-Americans and other minorities" hosts a show in Sirius XM Radio Urban View. Last month, he invited Llewellyn King, creator and host of White House Chronicle and frequent ME/CFS advocate, and Linda Tannenbaum, founder and CEO/President of Open Medicine Foundation, on the show to discuss ME/CFS and its impact on minorities. You can watch the video of the show here:



 (the audio-only link is not available right now).


Dr. Ron Tompkins on PBS' White House Chronicle

Llewellyn King has been busy lately! On his own show on PBS, White House Chronicle, he hosted Dr. Ron Tompkins of Harvard Medical School in an episode titled "Medicine and Engineering." In this discussion of new frontiers in medical engineering and the need for medical research, Dr. Thompson mentions ME/CFS. You can watch the episode here:


White House Chronicle 11039: Medicine and Engineering from White House Chronicle on Vimeo.


ME/CFS Benefit Concert with Marian Call

In California, a musical and awareness-building event was held to benefit ME/CFS, featuring singer-songwriter Marian Call. The talented artist is originally from Alaska and has friends and family with ME/CFS. The evening included moving talks by several advocates, including host Emily Taylor, who is Director of Advocacy and Community Relations at Solve ME/CFS Initiative and whose mother has ME/CFS. You can watch the entire show here, enjoy the beautiful music, and listen to the moving words of the speakers:




Wow, so much has been going on in the ME/CFS world lately! We are fortunate to have such tireless advocates helping to spread the word about ME/CFS. I'll try to get to a Research Update next week, as I continue to catch up.

Movie Monday: The Crimes of Grindelwald

This weekend, we ended our all-day family day with a movie for me, my husband, and our oldest son (25): Fantastic Beasts: The Crimes of Grindelwald, the sequel to Fantastic Beasts and Where to Find Them, which the three of us enjoyed watching last year. Our reactions to this second movie, spun-off from the Harry Potter series, were mixed, though my son and I both ended up enjoying it.

This sequel picks up in 1927, after (a few years, I think?) the events of the first movie. Grindelwald (played by Johnny Depp), a wizard criminal who was imprisoned in the U.S. at the end of the first movie, is being transferred to Europe to stand trial there. Despite all the magical security measures put in place, Grindelwald manages to escape. Meanwhile, the Ministry of Magic in London wants to locate Credence Barebone, another character from the first movie who is a wizard brought up by a non-magical adopted family. Newt Scamander, played again by Eddie Redmayne, won't work with the Ministry to find Barebone, because they want to send a bounty hunter with him. However, when his old Hogwarts professor, Albus Dumbledore (played by Jude Law), asks him to go to Paris to find Barebone in order to save him from both the Ministry and Grindelwald, Newt agrees. Newt's American friends from the first movie, Jacob Kowalski and Queenie Goldstein, are also featured again in this movie and are still very much in love, though not allowed to marry since legal marriage is not allowed between wizards and Muggles (non-magical people). At the same time in Paris, an old school friend of Newt's named Leta Lestrange (played by Zoe Kravitz), who is now engaged to Newt's brother, is also looking for Credence Barebone, on the suspicion that he might possibly be her long-lost, long-thought-dead brother. Grindelwald's evil plan is for pureblood wizards to band together and take control of the entire world, wizards and non-wizards alike. All of these people and situations come together in Paris, along with a fun collection of Newt's magical creatures, ending in a climactic clash between good and evil.

Confused? So were we! It is a very complicated plot with a lot of different characters to keep track of. It would probably help if you watched this sequel soon after watching the first movie, but it's been almost a year for us. We enjoyed seeing some links to the Harry Potter books/movies, which take place about 80 years later, with familiar characters like Dumbledore, here as a young man, and well-known wizarding family names like Lestrange popping up here and there, as well as scenes of familiar Hogwarts. Law does a great job as a young Dumbledore, Depp is spooky as the criminal Grindelwald, and Redmayne is as charming as ever as kind, unassuming Newt. This second movie is far darker than the first, with much less fun whimsy and more evil. All three of us felt it was far too complex and difficult to keep us with, especially the first half of the movie. My son and I got into it in the second half, with lots of pressing pause to confirm what was going on and who was who, but my husband really didn't enjoy it. This movie is probably best for major fans of the Harry Potter universe and/or those who've watched the first Fantastic Beasts movie recently. There was clearly a set-up for another sequel, with an upcoming battle between Dumbledore and Grindelwald (that my son said was mentioned in the Harry Potter books as a major point of wizarding history). I'm not sure if we'll watch it or not. Perhaps if it comes out soon, while we still remember all the complicated details of this one!

NOTE: IMDB lists not only a Fantastic Beasts 3 but also a #4 and #5! The next sequel, #3, is due out in 2021.

Fantastic Beasts: The Crimes of Grindelwald is available on streaming and on DVD. It looks like HBO owns the rights currently, so it is included with HBO subscriptions, available to buy on streaming through Amazon for $14.99 or on DVD (the way we watched it). The first movie, Fantastic Beasts and Where to Find Them is available for streaming on Amazon for just $1.99 or on DVD. Definitely watch them both together, to avoid getting too confused!

I have to admit, the trailer is pretty enticing:

Weekly Inspiration: Slow Down and Enjoy Time Off

Today's post is about how to slow down, relax, and occasionally take time off from the fast pace of modern life. Yesterday, all of our immediate family - my husband, two sons, father-in-law, and me - spent the entire day together, relaxed and just enjoying each other's company. It struck me how rare that is now, not only to get both of my sons home at the same time (they are in their early 20's), but to be able to spend an entire day without the pressures of getting things done and responding to the online world. In the morning, we made our annual trip to a farmer's market where we go every October to pick out pumpkins and indulge in hot cider and freshly-made donuts, rested/napped in the afternoon, and then had dinner, cake, and presents for my husband's birthday. Ironically, we had to do this all in one day because there was not a single day the rest of the month when we could all get together...because we are so busy!

All 5 of us at home together - a rare treat!

Now, you might be thinking, "Slow down? ha! This illness slowed me down years ago. I have no choice." For me, that's the real irony. In spite of the fact that I need to spend at least 12 hours in bed sleeping (on a good day), I rarely get up before 8 am, and I need to be lying down by 7:30 pm, my life still feels very rushed and overly busy. For starters, I have to squeeze all of my productive time and to-do's into a much smaller period of time than most people. Even more pressure comes from the online world these days: keeping up with social media, replying to e-mails, participating in online support groups, and more. A day like yesterday when we are all together and just "hanging out" is so rare that it reminded me of Christmas Day, a once-a-year phenomenon!

Here is one of my favorite TED Talks: In Praise of Slowness by Carl Honore. In spite of the fact that this talk is from 2005 (he mentions Blackberries instead of smart phones!), it's message is even more appropriate and powerful today, especially the parts about his time with his son:

I would really love to hear Carl speak again TODAY, in light of how much faster the digital world - and hence, our entire world - has become.

I have a hard time slowing down and especially, taking time off to relax. I wrote about this difficulty and some great ideas for encouraging free time in my ProHealth article, The Importance of Play. Even if you are more limited than I am and mostly housebound, it is still easy to fall into the trap of living a fast-paced life, where your brain is constantly jumping from one thing to the next, even if (or maybe especially if) most of your "activity" is online. Those connections we make with each other in the virtual world are so important, but we also need to take time out, away from the electronic devices, to just relax and enjoy our families, friends, or some alone time.

How will you take time out today and slow down?

Webinar: Advances in ME/CFS Research and Clinical Care

Solve ME/CFS Initiative has an awesome on-going series of webinars on a wide range of topics for ME/CFS patients and their doctors, and the one scheduled for next week sounds especially good:

Dr. Kenneth Friedman will be hosting a webinar on Thursday, October 3, 2019, on Advances in ME/CFS Research and Clinical Care, starting at 10 am Pacific Time and 1 pm Eastern Time. You can read all the details about the webinar here. And you can register for the webinar here.

I'd really like to catch this one, but they are always scheduled during my nap time! Luckily, Solve ME/CFS posts videos of past webinars on this page - topics include genetics, brain inflammation, school accommodations, the disability process, and more. What a wealth of knowledge! That same link also describes upcoming webinars, so you can plan ahead.

I'll have to watch this one after it airs, but maybe you can catch it live - sign up today! It's free and sounds like it will be very informative.

TV Tuesday: Fall 2019 TV Preview

Yay! It's officially fall! That means cooler weather (thank goodness), jeans and sweatshirts, beautiful foliage, and...a new TV season! Even though streaming has made new shows (and old favorites) available all year round now, my husband and I still enjoy a bunch of shows on network TV (watched On Demand, according to our schedule) as well as on streaming. This is the time of year when the networks begin to premier their new shows, being back more seasons of old favorites, and yes, the streaming services do, too.

Network Old Favorites Returning - 
 
First, some of our old favorites on network TV that we are looking forward to this fall, in order of release date (my reviews, with trailers, are at the links):

The Resident - We really like the cast of this medical show, though in the first season, it seemed like all of the older doctors were evil...not just bad, but pure evil. They've tamped that down a bit now (only one of the attendings turned out to be truly evil), we enjoyed season 2, and we are looking forward to season 3, starting September 24 (tonight!).

New Amsterdam - Yes, another medical show! Somehow we always get hooked on them. This one just started last year, with Ryan Eggold (an actor we liked on The Blacklist) as Medical Director Dr. Max Goodman, who is battling cancer while trying to fight against the medical bureaucracy and put patients first. The entire cast is great, and it's nice to see the good guys win. It also starts tonight, September 24.

Grey's Anatomy - Why do all the medical shows start the same week?? No idea, but Grey's is, of course, the gold standard in this category. My husband says he is starting to get sick of it, but I'm not! Never. And he's a good enough sport to continue watching it with me. I still love it and look forward to it every week. It's 16th (count 'em!) season kicks also kicks off this week, on its usual night, Thursday, September 26.

The Rookie - This newcomer turned out to be one of our favorite shows last year! Nathan Fillion stars as John Nolan, the oldest rookie cop in LAPD's newest class. As always, he brings his considerable charms to this role, but what we like best is the way this action-packed, suspenseful police show also blends human stories and humor into its mix. Its second season starts next Sunday, September 29, and we will be watching it On Demand Monday!

The Blacklist - We have stuck with this show through six seasons of twists and turns, main characters' deaths, and more. This unique show has an elite FBI black ops group working with renowned (and Most Wanted) criminal Raymond Reddington, played masterfully by James Spader (he's come a long way from the pirate outfit in Fast Times at Ridgemont High). We still enjoy this fast-paced thriller, and its seventh season begins on Friday. October 4.

Madam Secretary - I think this is another one my husband is getting a little bit tired of, but he keeps watching it with me...and I still love it! Tea Leoni is fantastic as Secretary of State Elizabeth McCord, with Tim Daly by her side as her husband, religious expert, and sometime CIA employee. Each episode, Elizabeth solves some unsolvable and complex international problem with wisdom and compassion. Ahhh...if only she and Keifer Sutherland's President Tom Kirkman on Designated Survivor were our leaders in real life! A girl can dream. Its sixth season premiers on Sunday, October 6.

I will also hopefully have the time to watch This Is Us and A Million Little Things on my own...though my TV alone time is severely limited these days.


New Network Shows I Want to Try -

Bluff City Law - This new legal show on NBC premiered last night on September 23 (my husband is away, so I have to wait!). Jimmy Smits returns to the law (he starred on L.A. Law for 6 years) in this father-daughter legal practice.



All Rise - Another legal show, premiering on the same day. Seriously, what is up with the confluence of medical and legal show premiers?? Anyway, this one looks intriguing, about a newly appointed judge who wants to make a difference. I'm a bit more interested in this one than the previous one, but we'll see. Also started Monday, September 23.



Emergence - Whew. For a while, I didn't see any new sci fi or paranormal thriller on the docket for this season, but this one looks right up our alley! I can already see similarities to The Crossing and Manifest (which returns for a second season this winter). It premiers tonight, September 24.



Stumptown - The new detective show starring Cobie Smulders (of How I Met Your Mother fame) as a P.I. has been described as similar to the classic The Rockford Files. I like the lead actress and loved the trailer - action, suspense, great sense of humor, and an awesome soundtrack! It premiers Wednesday, September 25. Check out this hilarious trailer:



Evil - And one more paranormal entry for this new fall season! A logic-driven clinical psychologist teams up with a representative from the Catholic church to investigate strange cases to determine, among other things, if someone is possessed or a psychopath. Looks intriguing - could be good. It starts Thursday, September 26.




Favorites Returning to Streaming - 

And, finally, we have several of our favorites returning to streaming services later this fall. Yes, I realize this is a LOT of shows - we probably won't dive back into those on streaming until the network shows go on hiatus for the holidays.

Shameless - We don't get Showtime, so we have always watched this hilarious family drama on Netflix, and season 9 just arrived on Netflix - hurray! This is our "watch during lunch on weekends" show, and it never fails to amuse us. Those crazy Gallaghers!

Goliath - OK, so this show starring Billy Bob Thornton as a disgraced, alcoholic lawyer had an excellent first season and a seriously bizarre, warped, graphically violent second season. Thornton is so good, though - as well as the rest of the cast - that we're willing to give it one more try. It returns for its third season on Amazon Prime on October 4.

Tom Clancy's Jack Ryan - This adaptation about the famed character from the Tom Clancy novels stars John Krasinski (Jim on The Office) as a deskbound CIA analyst who gets dragged into field work unwillingly. The first season was excellent and very movie-like (no surprise since there have been countless Jack Ryan movies), and we are very much looking forward to its second season on Amazon Prime, which begins on November 1.

The Man in the High Castle - This alternate history about a world where the Nazis won WWII has been fascinating and twisty, with some sci fi/time travel elements added in. We're looking forward to seeing what happens in season 4, which begins on Amazon Prime on November 15.

The Marvelous Mrs. Maisal - I watched season one of this fabulous show about a wife and mother who wants to be a stand-up comic in the 1950's on my own, but my husband caught up, and we watched season two together. We are both excited for season 3 of this original, color-saturated, funny show, starting on December 6 on Amazon Prime.

(I see my streaming looks biased toward Amazon Prime, but that's just because we've been watching a bunch of Netflix shows all summer, some of which I will be reviewing here in coming weeks).

WHAT FALL SHOWS ARE YOU LOOKING FORWARD TO??

Movie Monday: Smart People

Miracle of miracles, last month, I had a few evenings all to myself! My husband was traveling, my son was working or out with friends, and I had a little much-needed quiet solitude. I also happened to be sick with bronchitis at the time, which prevented me from my usual problem of working too late into the evenings when I am alone. Instead, I indulged in a couple of movies. My favorite from that week was Smart People, a movie with an excellent, all-star cast that was funny and well, smart.

Dennis Quaid plays Professor Lawrence Wetherhold, a cranky, unpleasant English professor at a local college. This guy is a real...uh...let's just say, jerk. His wife died years ago, and he has two kids, a son named James, played by Ashton Holmes, who's attending the same local college and a precocious but cool-seeming daughter named Vanessa, played brilliantly by the talented Ellen Page. Vanessa is in her senior year of high school and clearly very smart, but she seems to have all the social graces of her cantankerous father. When Lawrence suffers a concussion caused by an unexplained seizure, Vanessa is annoyed to have to take time from her tight schedule of academics and activities that look good on college applications to go to the hospital. Sarah Jessica Parker plays Janet, the ER doctor caring for Lawrence. Unable to drive temporarily, Lawrence is saved (though he would argue that) by the unexpected appearance of his adopted brother, Chuck, played amusingly by Thomas Haden Church, who is the complete opposite of Lawrence in many ways. With a rocky start, Lawrence and Janet begin to date. The appearance of both Janet and Chuck into the dysfunctional family's lives shakes things up...in a good way. Hijinks, hilarity, and - in spite of their best efforts - growth ensue.

I really enjoyed this movie. The writing is clever, funny, and entertaining, and the cast is outstanding. Lawrence is truly obnoxious and unlikable at the start of the film, and Vanessa isn't much better, though it's clear that they are both isolated and lonely. Janet - though that relationship has its own problems - and Chuck inject some much-needed life and laughter into their dull, solitary lives. Along the way, there are plenty of laughs, even when things are sad. There are some unexpected twists here, too, but ultimately, things turn out far better than how they started - and I like that in a movie, too. It was a very witty and entertaining 90 minutes.

Smart People is currently on Netflix and is also available for $3.99 streaming on Amazon.

Check out the warmth and wit of this movie in its trailer:

September 2019 ME/CFS Research Update

I am WAY overdue for a research update here because I have been spending much of my writing time on articles and my upcoming book, Finding a New Normal: Living with Chronic Illness, which is a collection of my articles and essays (from this blog and articles I wrote for ProHealth) on emotional coping, managing daily life, and living your best life with chronic illness. I am feverishly reviewing edits from my editor now and hope to publish the book later this fall.

I've recently published two articles for ProHealth that should be of interest to my blog readers:

Using a Heart Rate Monitor to Prevent Post-Exertional Crashes

Treating Sleep Problems in ME/CFS

I've written about both of these topics here on the blog in the past (in some cases, a very long time ago!), but these articles include the latest research, lots of new information, and a list of references to scientific studies and articles at the end, which makes them great for sharing with your doctor.

Here's what else is new in the ME/CFS world:

New Clinician's Guidelines
A group of the top ME/CFS experts in the United States has been working together to come up with guidelines for other doctors for diagnosing and treating ME/CFS. You can read and print the results of their work, Diagnosing and Treating ME/CFS. It's a brief 6-page document, suitable for taking to your doctor. I was at first disappointed by the final product, though I can see its purpose now. I knew this group of the best-of-the-best ME/CFS specialists was working on clinician guidelines, and I had hoped for something like Dr. Rowe's Pediatric Primer (he was on this group, too). Instead, this brief document provides some good guidelines for diagnosing ME/CFS for other doctors, but only a paragraph on treatments, with a list of some of the options but no explanation. However, a note after that paragraph does refer to both the Pediatric Primer and a Primer for Clinical Practitioners (2014) that I was completely unaware of. This is a 51-page document that DOES get into the details of many different treatment options. While this primer does not include all treatment options, it is fairly complete and would be helpful for primary care doctors or GPs who may know very little about ME/CFS. So, maybe start with the 6-page document to help your doctor with diagnosis and then offer the longer ones!

3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University
This wonderful annual symposium on ME/CFS research and science was again held at Stanford earlier this month. I missed the live-cast, and it doesn't look like they've posted the videos yet. In the meantime, you can read about the symposium, the scientists that attended, and the agenda. You can also read Reflections of the Symposium from Open Medicine Foundation's founder and CEO here. And you can watch the videos of last year's Symposium (plus a number of other informative videos) on OMF's YouTube channel. I'll post a link to the 2019 Symposium videos as soon as they are available.

Solve ME/CFS Initiative Second Quarter 2019 Research Review
Solve ME/CFS, another excellent research and support organization for ME/CFS, just published its second quarter 2019 research review, which you can read at the link. There is so much exciting research going on in every aspect of ME/CFS! Between this and the Symposium, there is a lot to be hopeful about - the pace of science in this field just keeps advancing faster and faster. I received this review in the mail, and you can also sign up to receive their newsletter here (at the top of the page).

That's all for today - my husband just got home from playing golf, so I guess I need to make dinner. The good news for me personally is that I finally got rid of a nasty case of bronchitis that hung on for a month and wiped me out, so I am back to my normal baseline...which is pretty good!

Take Action NOW!

U.S. Patients:

 

Take a few minutes NOW to send an important message to your Senators, asking them to vote for a current action that would almost DOUBLE the money appropriated for ME/CFS - a much-needed increase of our meager funding. It only took me moments (and I added a brief personal statement, which is not required), so act now! The vote is later this week - let's all let our elected officials know how important this is.

 

Use this link for a simple form that will look up your Senators for you and quickly send them a message, with all the pertinent information included (and an option to add a personal message).

This is a chance for our voices to be heard, even from our beds and couches!

Weekly Inspirations: Nature Provides Peace and Healing

The blog has been quiet for awhile because I had a nasty bout of bronchitis that wiped me out and lasted four weeks, and...we spent last week on a camping vacation. It was the first full week of vacation we've had all year, due to illness, family crises, weather, and family funerals out of state, so we REALLY needed a break! Our camping vacations are more than just a break from normal routine, though. My husband and I both find that time spent in nature is rejuvenating and healing. It provides a sense of peace and tranquility we just can't find in the midst of our busy lives and the ever-connected modern world.

I've written here many times about the positive effects of spending time in nature - because it is a truth I keep rediscovering! I also wrote an article for ProHealth, The Restorative Power of Nature, that includes the research on the benefits (both physical and mental) of spending time in nature and how YOU can manage more time in nature, even if you are severely limited by your illness - even if you can't go outside! My article seems to have gotten missed when ProHealth redesigned their website recently, but you can read the full text at the link, in a previous blog post.

This past week, we spent almost all of our time outdoors, since we were camping, and both campgrounds we visited were mostly quiet (we did get some rowdy neighbors one night!). We stayed at Clarence Fahnestock State Park in New York's Hudson River Valley - a huge eye-opener for us! We'd never visited this beautiful region before, and we were stunned by how picturesque and undeveloped the Hudson River is (north of NYC). Our second stop was at North-South Lake in the Catskills, which is so far up into the mountains and remote that there was no cell service for miles!

Best part of camping - reading by the campfire

I find that there are two different ways to experience nature. One is in the larger sense, when you appreciate a stunning view of a natural landscape, and it stops you in your tracks. We experienced that this week both in the beauty of the Hudson River from overlooks and a pedestrian bridge and in the peace and tranquility of North-South Lake, especially at dusk and sunset, with almost perfect silence, other than sounds of nature, and heart-stopping natural beauty.

View of the Hudson River from Walkway Over the Hudson in Poughkeepsie, NY

View of the Hudson River from an overlook (West Point is downriver on the other side)

Breath-taking view of the surrounding landscape from an overlook in the Catskills (can see 4 states!)

North-South Lake at sunset - perfect peace

The other way to experience nature is in a smaller sense, up close and personal. Listening to bird song, crickets, and the wind in the trees brings instant calm and allows you to slow down and tune in to the natural world around you. When we are camping, we notice everything around us - wildlife, plants and trees, blue sky and clouds, and the star-filled sky at night. Although we notice a lot when hiking or even just sitting around our campfire, we both find that kayaking is one of the most peaceful, nature-soaked things to do. Floating out on a calm lake with nothing around but nature makes you notice the birds flying by, reflections in the water, cloud patterns above, and the flora and fauna both in the water and on the surrounding shores. It provides a perfect calm, especially at the end of the day. if you can't manage kayaking yourself (I can now, after treating OI), ask a friend or family member to take you out in a tandem (for 2) kayak, canoe, or other boat.

Floating on the lake at dusk, soaking in the peace & tranquility

First signs of fall color

Water lily and lily pads

A duck friend floating by

If you think you can't enjoy any of this...you can! First, check out my tips for Camping and Enjoying the Outdoors with ME/CFS, based on our almost two decades of continuing our outdoor time in spite of my illness (when our sons were younger, three of us had ME/CFS, but we never gave up our camping traditions). There are lots of ways to accommodate your limits so that you can enjoy time outdoors. And, you can also do what we did and work to improve your condition so that you can do even more outdoors. Here is a summary of the treatments that have been most effective for me and my sons over the years, allowing us to be more active and feel better, with fewer crashes.

And, as I explain in that ProHealth article above, even if you are so severely affected that you can not leave your home, you can still enjoy the benefits of nature. On my bad days, I lie in a zero-gravity chair out on my back deck or porch. Leave the electronics inside and just tune in to what you can see, hear, and smell around you. The physical and emotional benefits are real. Even if you can't go outdoors, studies show similar physiological benefits from looking out a window (open, if possible, so you can also listen, but through glass works, too), or...just looking at photos of nature on a screen has similar benefits! So, I hope you have enjoyed the photos I included here (click any of them to enlarge). You can also try this playlist from TED called Sounds of the Wild, a collection of talks filled with pictures and sounds of nature. This TED Talk, Nature. Beauty. Gratitude. includes gorgeous nature photography. And this TED playlist, Reconnect with Nature! provides lots of inspiration on ways to enjoy nature, along with more beautiful photographs.

We are back from our trip now, reconnected to the world (and with 500 unread e-mails waiting for me!), but this morning, I am writing this in my reclining chair out on our porch, listening to the sounds of the birds and the breeze through the surrounding trees. Give it a try - even just 10 minutes in nature (or looking at nature!) will make a difference in your life. I am newly committed to getting outdoors every day, even if it's just to my back deck.

My back deck provides close-by nature (but leave the laptop inside!)

Movie Monday: The Art of Racing in the Rain

Although I didn't remember all the details of the plot, I remembered reading The Art of Racing in the Rain by Garth Stein about ten years ago and loving the novel. In preparation for the movie adaptation, my husband read the novel last month, and we invited our good friends (who had not read the book) to come with us to see the movie version, The Art of Racing in the Rain, in the theater a couple of weeks ago. All four of us loved the movie, and - like the book - it made us both laugh and cry (yes, all of us!).

This unique story is narrated by a dog named Enzo. Now, stick with me here, because this isn't my usual kind of thing, but this is an extraordinary dog and an extraordinary story. As Enzo, voiced by Kevin Costner, explains early on, he believes that dogs that are ready and have learned enough will be reincarnated as humans (he saw this on a documentary about Mongolian beliefs), and so, his goal is to learn enough about being human to take this important next step. As a puppy, he was adopted by Denny, played by Milo Ventimiglio, and named Enzo (after the Italian racer and founder of Ferrari) because Denny is a racecar driver. The two immediately bond, and Enzo often comes to the track with him and watches racing on TV with Denny, both televised races and recordings of Denny's own races, as Denny imparts his wisdom about racing. Enzo's not too sure what to think when Eve, played by Amanda Seyfried, comes along, but soon they are a close-knit family of three - and eventually, four, when Zoe is born. Life is idyllic for all of them for a while, until tragedy strikes. Through it all, Enzo remains loyal and steadfast to Denny and the rest of his family. It's no spoiler to say that Enzo does die in the end because of course, dogs don't live as long as humans do and also the movie begins with Enzo's imminent demise, as Enzo looks back and tells the story of his life.

So, let's deal with that first. When I told our friends it was a movie about a dog, knowing they are dog lovers who own two dogs themselves, my friend asked, "Is it sad?" I explained that, yes, there are some sad parts in the movie but that it also has moments full of joy and plenty of laughs, too, so they agreed to come see it with us. As I said, all four of us loved the movie, and yes, all of us cried, but we all laughed a lot, too. It's a story about life, with all of its ups and downs, joys and sorrows, so it makes you feel, and what more can you ask from a story? My husband and I thought the movie adaptation was very well-done. He had read the book much more recently and pointed out a few minor changes from book to movie, but overall, the movie sticks pretty closely to not only the plot points of the book but also its emotional feel. The all-star cast did a great job, though, of course, Enzo is the real star of the show. This is a wonderful movie for most ages, though I would be cautious with younger kids who might not be comfortable being confronted with the realities of death. But for teens and adults, it's the perfect movie for different generations to enjoy together - or friends, as we did. Any movie that can make you soar with joy and sob with sorrow, all in less than two hours in a darkened theater, is a winner in my book.

The Art of Racing in the Rain is currently playing in theaters, though probably not for much longer. You can look up local theaters and times (go for recliner seats!) and/or buy tickets at Fandango:




It is tentatively scheduled for release on streaming through Amazon and on DVD in November 2019. It can be pre-ordered now.