Weekly Inspiration: The Joys of Community

I only have a few minutes this morning (leaving on a trip later today and then another one later this week!), but I wanted to share our wonderful evening last night. Our family hosted a potluck dinner for our local/regional support group.

Some brief history: this group began with some "mom's lunches" back in 2010 with five of us moms whose kid(s) had ME/CFS and an assortment of other diagnoses. That led to a potluck dinner where our families met ... and our group was born! Since then, we have to grown to about 40 families in our region (DE, NJ, MD, and PA), with both sick adults and sick kids and a variety of related medical conditions, like ME/CFS, EDS, fibro, Lyme, and POTS.

Last night, we had 13 people here. Some were old friends (including two from that original group), but we also had three people who were completely new to our group: one who's had ME/CFS for over 20 years, one who's not only living with ME/CFS but also researching genetics in grad school to help find answers for us, and another who has no solid diagnosis yet but whose multiple symptoms were familiar to all of us. Old friends and new ones caught up, got to know each other, and traded information. With plenty of seats, lots of options for those with food intolerances, and a heaping scoop of empathy all around, everyone talked for hours. Information on local doctors, effective treatments, school issues, and more flew back and forth, with lots of note-taking and promises to text or e-mail details.

Yes, in case you're wondering, it was exhausting ... but well worth it! Even my husband, who is the healthy one here, is tired this morning, but it means so much to us to be able to help others--and to make such wonderful new friends, too. We keep learning new things, as well. Being around others who so completely understand your crazy, unusual life is so comforting and affirming. Toward the end of the evening, one guy said he needed to leave, and a bunch of us said, "Oh, yeah - we can see that! You're definitely going downhill. Take care of yourself." He said it was such a strange experience, for everyone else at a gathering to "get it" and understand instead of pressuring him to stay or saying he'd be fine.

So, once again, I want to encourage all of you--wherever you are-- to find your people! Whether you can interact in person like our group last night (and again, this was a rare outing and social interaction for many) or only online, it is SO rewarding and supportive to "meet" others like you. And, it might just help you to improve your physical condition, too--much of our talk last night was telling each other about the treatments that have helped the most. Our original group of five families included seven kids and teens who were all moderately to severely affected by ME/CFS; thanks in large part to the advice and support from this group, four of those kids are now young adults either in college or graduated. Many others have come and gone as they've improved and been able to live their lives again. The benefits of community are both physical and emotional.

How do you find your people? Check out this article I wrote for ProHealth, Birds of a Feather: The Joys of Community, that details some ways to find others in your local area, for in-person or online interactions.

Double or Triple Your Giving This Season!

In this season of giving, there are two great deals going on right now to double or triple your contribution to ME/CFS research:

• Open Medicine Foundation Triple Giving Tuesday - from October 22 all the way until December 3, OMF will TRIPLE your contribution to ME/CFS research, thanks to several generous donors who offered to match donations up to $666, 666! The name refers to the annual tradition of Giving Tuesday, December 3 this year, the day after Cyber Monday, but donations will be tripled EVERY day between now and then. Just click the link to make your donation. It doesn't have to be a lot - every little bit helps, especially when it is tripled!
• Solve ME/CFS Initiative Double-Your-Impact Challenge - thanks to several anonymous donors, any donation you make to Solve ME/CFS from now until December 31 will be doubled, up to $750,000! They are hoping to meet a goal of $1.5 million in total donations by the end of the year. Just think of all the great research that can be done with that money!

These are two outstanding opportunities to make your money go further and give a gift that will help all of us this holiday season! Click the links to donate TODAY, watch your donation get doubled or tripled, and contribute to important ME/CFS research. You can even share the link with family and friends and tell them that THIS is what you want for your holiday gift.

Almost all of the amazing research breakthroughs in ME/CFS in recent years have come from private donations (and much of it from these two excellent organizations), so this is a great way to keep the science moving forward...for a happier New Year for all of us!

Happy Holidays and Happy Giving!

TV Tuesday: Stumptown

One of the new TV shows I mentioned in my Fall 2019 TV Preview was Stumptown on ABC, and it has turned out to be our favorite new show of the fall and one of our overall favorites this season, new and old. We are loving this action-packed, suspenseful, yet warm and funny show with a great cast.

Cobie Smuldors (of How I Met Your Mother fame) stars as Dex Parios, a Marine vet in Portland, OR, with PTSD. She cares for her adult brother, Ansel (played by Cole Sibus), who has Down Syndrome. The two of them often hang out (and Ansel works at) a bar called Bad Alibi, owned by their good friend, Gray, played by Jake Johnson (familiar as Nick from New Girl). In the first episode, the head of the local Indian casino asks Dex to track down her granddaughter who's been kidnapped. Its a twisty, convoluted, and dangerous case, and along the way, Dex works with (and hooks up with) Detective Miles Hoffman, a cop played by Michael Ealy (who we enjoyed in Almost Human and The Following). By the start of the second episode, Dex has decided she wants to be a private investigator. Although trouble seems to follow her everywhere, she is scrappy and determined and feels like she could be good at being a PI. The rest of season one (so far) follows her as she trains, gets her PI license, gets in way over her head, and tackles bad guys.

Stumptown is based on a graphic novel series by Greg Rucka, and we are loving the TV adaptation so far! Yes, it's a detective show with mysteries and action in every episode, but it is also warm and very, very funny. Even better, it is accompanied by an '80's soundtrack with hilarious timing, since Dex's old Mustang has a mix tape stuck in the cassette player that starts playing at the most inopportune (and funny) moments. Smulders is outstanding in this starring role, as a bad-ass Marine who always gets into trouble but still solves her cases. The rest of the cast is great, too, also including Camryn Manheim as the police lieutenant. Dex seems tough on the outside, but her loving relationship with her brother and friendship with Gray show her softer side. There is at least one big fight in each episode and often a car chase, too, which are not typically my cup of tea, but it is all done with a sense of humor and fun. You can see what I mean in the trailer below. The bottom line is that Stumptown is one of our favorite shows on TV right now, and we look forward to each new episode and watch it as soon as it hits On Demand.

Stumptown airs on ABC Wednesdays at 10 pm, and is available On Demand and on the ABC website (looks like the first five episodes are available there right now for free). It is also available on Amazon for $1.99 an episode or $19.99 for the first season.



I've seen this trailer several times, but it still makes me laugh every time!

Movie Monday: Shaft (2019)

Saturday night, my husband and I watched the 2019 release, Shaft, which is a sequel to the original 1971 movie of the same name (and there were three other Shaft sequels in between). If you are as old as we are, you may remember the original movie, starring Richard Roundtree in the title role as a kick-ass black private investigator in Harlem. I never actually saw the original (since I was only six years-old at the time), and my husband doesn't remember much about it, but we are both very familiar with its funky theme song (hang on until 2:50 to hear those unforgettable lyrics) and its famous (or infamous?) main character. We thoroughly enjoyed this fun modernization of the classic. Can you dig it?

The movie opens in 1989, with John Shaft, played by Samuel L. Jackson, and his girlfriend, Maya (played by Regina Hall), caught in a shoot-out on the streets of Harlem. Shaft is cool as usual and unperturbed by the violence, but we see a baby in the backseat. That's the last straw for Maya. She cares about Shaft, but her son's safety must come first. She moves upstate with the baby and asks Shaft to stay away, for his son's protection, to prevent the violence in Shaft's life from touching him. The action then moves forward to the present, where John Jr. (JJ), played by Jessie T. Usher, is an adult, working as an FBI analyst in NYC, and meeting up his best best friends from high school, Karim, a vet and recovered addict who started a charity to help other vets, and Sasha, a doctor. When Karim is discovered dead of an overdose in Harlem the next day, JJ knows there is something more sinister going on. His friend was clearly still clean and happy with his life. JJ begins investigating Karim's death but soon finds himself in over his head. Reluctantly, he seeks out his dad, the infamous Shaft, to help him find out what happened to his friend. As the two of them team up to find out what happened, they get pulled deeper and deeper into larger conspiracies involving drugs. At one point, just before the big showdown with the bad guys, they visit Shaft's father, played by Richard Roundtree (who you'll recall played Shaft in the 1971 movie), and grandpa comes along to help with the climactic shootout.

This movie is just plain fun. Samuel L. Jackson is his usual charismatic self as the foul-mouthed, violent, self-assured Shaft. Usher does a great job as his nerdy but determined son, and the clash between the two of them provides lots of funny moments. This is, without a doubt, an action movie, and there is plenty of shooting, fighting, and other violence. That is usually not my thing (at all!), but in this case, the violence is balanced out by warmth, family relationships, and a hefty dose of humor that left me smiling and laughing for almost two hours. It was just plain fun, with a touch of nostalgia, and we both enjoyed it.

Shaft is currently out on DVD and on streaming, available through Amazon starting at $4.99. You can also stream the original 1971 Shaft for just $1.99.

I guarantee this trailer will make you smile:

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?