Tuesday, June 02, 2020

TV Tuesday: Snowpiercer

In this time when Hollywood production has come to a screeching halt, and some of our favorite spring TV shows had to end early because they ran out of episodes, a new show premier is something to get excited about! We recently started watching Snowpiercer, a brand-new TNT show that began on May 17. From the creator of Orphan Black (one of our all-time favorites), it is based on a series of graphic novels published in France over 30 years ago (and the resulting movie adaptation that was released in 2013). We've only just begun watching it but are already hooked on this suspenseful, original post-apocalyptic mystery drama.

In this world, global scientists trying to stem climate change inadvertently went too far and created a new Ice Age, with temperatures plunging down to -120 degrees Fahrenheit and below. With the planet now unlivable for humans, a mysterious, wealthy benefactor named Mr. Wilford created a 1,001-car supertrain that circumnavigates the globe (no word on how all those tracks were laid...). The show begins almost seven years after the train departed. Since it never stops, the train is an intricate and ingeniously-designed closed system, where everything is re-used and recycled and nothing is wasted. Within the train's confines is a strictly regulated class society, with official first through fourth classes. As it left the station more than six years ago, though, a group of people pushed their way onboard into the storage areas at the back, creating an inadvertent fifth class, now known as the Tailies. One day, Melanie, played by Jennifer Connelley, who is the ship's "voice" in its daily announcements, appears in the Tail with a shocking request. She pulls one member of the group, Andre, played by Daveed Diggs, out to come up-train with her. In his pre-apocalypse life, Andre was a police detective. They need him now to solve a particularly brutal murder, in order to keep peace among the rest of the train. Another murder with a similar M.O. was committed years ago, and they now realize they pinned it on the wrong person (she's been serving her sentence frozen in a drawer and will now be thawed out and released).

The show has cleverly created a multi-layered story: that of the train itself and its residents and that of a murder mystery which must be solved. In bringing the detective up from the Tail, the inequities of class are highlighted for the audience, as we see the different classes on the train through Andre's eyes, for the first time, as he travels up-train to solve the murder. Every aspect of life on the train is unique and fascinating, from its nightclub cars to its first-class dining rooms to its internal "ocean," where fresh sea urchin and other delicacies can be harvested. The sci fi aspects are intriguing as well, as the train's closed systems are explored, though the main focus of the show is as a drama of humanity and a murder mystery. The supporting cast is great, and both Connelly and Diggs are excellent in their leading roles, with some intrigue introduced right from the first episode. We have only watched two episodes so far, but we are enjoying it and finding it a gripping story with interesting characters and an engaging setting. We can't wait to see what happens next!

Snowpiercer is currently airing on TNT, with three episodes (out of ten) shown so far, and a second season already approved. You can find it On Demand, if you get cable, or for free on the TNT website (the website also includes a cool video tour of the train's 1001 cars). You can also watch it on Amazon, where the first episode is free and subsequent episodes are $1.99 each or $17.99 for the entire season. Both Netflix and Amazon also carry the movie, which I have heard is quite different than the TV show (darker and more violent, without the murder mystery aspect).

Have you watched Snowpiercer yet?

Sunday, May 24, 2020

Weekly Inspiration: 2 Uplifting, Supportive Podcasts

Hi, all! I'm still here! The blog has been so quiet lately, with just a few posts this past month (though some good TV recommendations!), because I have been pretty badly crashed and unable to muster the energy for longer or more frequent posts. I've been worse than usual for months, but it got really bad the last 2-3 weeks. It feels to me like what we call a virally-triggered crash, which has become pretty rare for my son and I in recent years, thanks to immune system treatments. My ME/CFS specialist agreed to test me for a few viruses, including an antibody test for COVID-19 to see if exposure to that triggered this downturn and tests for EBV and HHV-6, two latent infections that most of us have that sometimes get reactivated and need antiviral treatment to calm down again. I should hear back on those test results next week. In the meantime, I've had a few good days at the end of this week, so I am cautiously hopeful (and still taking it very easy). By the way, you can also follow me on Twitter or like my Facebook page for this blog--those both take far less energy, so I can interact and post there even when feeling poorly.

Anyway, today, I am bringing you two podcasts that I recently discovered and have been enjoying/binging! One is focused on ME/CFS, and the other is about the coronavirus pandemic, from the perspective of someone with an immune disorder.


It's Not All About ME
Paddy, in Ireland, hosts this podcast focused on ME/CFS. Here's his own description of the show:
"A guy with ME and a mic. Chat and frequent guests sharing experience of chronic illnesses such as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome."
He alternates between interviews with guests--mostly other people who have ME/CFS--and solo podcasts, with an easy-going, relaxed style that is comforting and fun to listen to. He's an excellent interviewer and quickly builds a rapport with the people he's talking to, bringing listeners into the circle. There is a special kind of comfort and support that comes from hearing other people describe your own experiences and realizing you are not alone.

I've listened to three episodes recently (one solo and two interviews) and enjoyed them all. And guess who one of his upcoming guests will be? Me! He's enjoying my new book and has invited me to be interviewed for the show--possibly for multiple episodes. I can't wait to talk to this interesting, intelligent, and engaging man. I couldn't find a separate website for the podcast, but you can find episodes of the podcast both at Soundcloud and on Apple Podcasts.



Staying in with Emily and Kumail
Emily and Kumail are Hollywood writers (and Kumail is also an actor) who live a life that has some similarities to most of us. You already know their story if you've seen the hit movie The Big Sick, which they co-wrote. The movie tells the story about how the couple met and began dating just as Emily became extremely sick and was hospitalized and ended up in a coma. Obviously, they end up together, but it's a different kind of rom-com that deals with chronic illness. So, switching back to the real world...Emily and Kumail are married and living in L.A. (Kumail stars in a new movie, just released this weekend, The Lovebirds--we enjoyed it last night, so watch for a review here soon!), and Emily still has a serious immune disorder. She seems to be mostly symptom-free with monthly infusions, but the coronavirus hit, with strict stay-at-home orders coming early to California. They are being extra-careful because of Emily's condition.

The podcast is the two of them recording from home. They talk very openly and honestly about the challenges of isolation, stress, and fear during this time (which they call The Weirds). They have a regular feature called "What weird thing made you cry this week?" If that sounds depressing, it's just the opposite! They are both very, very funny (he started as a stand-up comic and they both write comedy) and even funnier together. They often go off on crazy tangents that get me laughing out loud so that my husband gives me strange looks! On one show, Emily said the new Charmin commercial with the family of bears gathered around the TV made her cry (I could relate), and they went off on a discussion of why Charmin uses bears to sell toilet paper, whether bears poop while hibernating, and more. They talk about what they're eating during the pandemic (including a regular feature on "what weird things have you been eating while at home?" - sensing a theme here?), and how they're coping. They also have lots of great recommendations for TV and movies to watch (since they're in the industry) and video games they're enjoying. I love every episode for its comfort and kindness ... and also that they always make me laugh hysterically and forget whatever I'm upset about that day. They feel like good friends by now!


This article about Staying In includes links to all the different ways to listen to it.

Hope you enjoy these two podcasts. Watch for my own interviews on It's Not All About ME, probably coming up in a month or two. I'll let you know what they are scheduled.

What podcasts or other media are lifting you up and providing comfort these days?

Tuesday, May 19, 2020

TV Tuesday: Dublin Murders

When I saw that our cable company was doing a Watchathon week, offering the usual-for-pay channels Starz, Showtime, Hulu, and Peacock for free, I knew immediately what I wanted to binge in that one week: Dublin Murders. This new BBC TV show, which aired on Starz in November 2019, is based on the first two books of Tana French's Dublin Murder Squad series: In the Woods and The Likeness. My husband and I are both huge fans of the author and the book series, and we both enjoyed those first two books. In fact, I just read the second book, The Likeness, last fall and was blown away by its unique plot with its unexpected twists. We watched the 8-episode series last week and both loved it. I will write the show description assuming you have not yet read the books.

When a young girl is found murdered in the woods outside of Dublin, with her body arranged on a rock altar, two detectives in the Dublin Murder Squad are assigned to the case. Cassie Maddox, played by Sarah Greene, is a recent addition to the Murder Squad. Her partner, Rob Reilly, played by Killian Scott, is a relatively new detective, but the two of them work well together. They answer the initial call to the scene of the crime, but we soon find out that Rob is hiding an enormous secret. Back in 1985, in these exact same woods, Rob was a young boy named Adam and the sole survivor of three friends who went into those woods and were never seen again. The experience was so traumatic and the other parents and neighbors so cruel to young Adam that his parents shipped him off to boarding school in England, where he changed his name and started a new life. Rob remembers nothing of the crucial 90 minutes between when he and his friends went into the woods and when he was found, alone and screaming with blood in his shoes but unhurt, by the police. Cassie knows Rob's secret and insists they pass the case to other detectives, but Rob soon gets caught up in it and refuses to give it up. Cassie reluctantly agrees. As the case moves forward, past and present mingle, and Rob becomes obsessed, not only with solving the present murder but with finding out what happened to him and his two friends 20 years ago.

Meanwhile, a second case crops up that personally involves Cassie. A young woman is found murdered who not only looks like Cassie's twin but is carrying ID that identifies her as Lexie Mangan, an undercover alias that Cassie created and used in a drug case, pretending to be a student at the nearby university. This new Lexie is a grad student at the university, living with four other grad students in a big, old house in town. Believing the fake Lexie's murder must be connected to their old drug case, Cassie's prior boss in undercover work convinces her to resume her Lexie alias. They tell the housemates that Lexie barely survived her knife wound, and Cassie moves into the house, pretending to be Lexie, in order to find out who actually murdered Lexie, now a Jane Doe. What could go wrong?

Readers of the books will immediately recognize that the TV show combines the timelines for both books 1 and 2 into a single timeframe and TV season. This was a bit disorienting to us at first ("hey, why is Lexie showing up already?"), but we soon adjusted. The cast and crew have done a great job of recreating these outstanding novels. The show has a sinister tone with a constant undercurrent of tension. Both Rob and Cassie have dark histories that interfere with their jobs, though both of them are completely committed to solving these crimes, whatever it takes. The mysteries of both past and present are slowly revealed, with plenty of twists and unexpected turns along the way, creating fabulous suspense that will keep you watching to find out what happens next. As in the books, not every question is neatly answered, and both Cassie and Rob are further damaged by their dark secrets and compulsion to solve their cases, no matter what the cost. Given our 1-week timeframe (more like 6 days when we realized it was temporarily free), we eagerly watched all eight episodes last week and absolutely loved the ride it took us on. Whether you have read the books or not, this is an excellent mystery/suspense series to sink your teeth into.

As of May 1, the show had been neither cancelled nor approved for a second season yet, but we are hoping they continue the show. I am about to read the third book in Tana French's series, The Faithful Place, so I will be ready if the show comes back next year!

Dublin Murders is currently available on Starz and Hulu, with a subscription (or do as we did and check your cable company for a free week promotion). It is also available on Amazon for $1.99 an episode (8 episodes total) or you can sign up for a free Starz trial through Amazon at the link.


Tuesday, May 12, 2020

TV Tuesday: The Good Fight

My husband and I have recently been enjoying some new-to-us streaming TV shows, including The Good Fight. This spin-off of The Good Wife is a legal drama that tackles timely issues but is also hilariously funny, with an outstanding female-centered cast.

Christine Baranski stars as Diane Lockhart, a character from The Good Wife. In the first episode here, Diane has announced her retirement from her law firm when she discovers that she no longer has a retirement fund, thanks to a Ponzi scheme run by her financial advisors, the Rindells, who also happen to be good friends of hers. In fact, Diane is the godmother to their only daughter, Maia (played by Rose Leslie), who has recently started at the firm as a new associate. Diane asks to be reinstated as partner, but since her firm is run by the ruthless David Lee (infamous from The Good Wife), she is forced to find a new job. She hires on with an all-black firm run by her good friend, Adrian Boseman, played with great style by Delroy Lindo. Diane asks if Maia, who is suffering from her parents' wrong-doing, can come with her, and Adrian agrees. Several other lawyers at the firm are familiar from The Good Wife, including Julius Cain (played by Michael Boatman), the only Republican in the left-leaning firm, and Lucca Quinn (played Cush Jumbo). One of our favorite characters is back, too: Marissa Gold, played by Sarah Steele, the sassy, go-getting, intelligent assistant/investigator, who also comes along to the new firm with Diane. In later episodes, Audra McDonald joins the cast as Liz Reddick-Lawrence, Adrian's ex-wife and a top-notch lawyer in her own right. Adrian's firm is very different from David Lee's cut-throat one that Diane is used to, with a focus on social justice and doing the right thing (though they are still a very high-level and successful law firm).

We both loved The Good Wife but weren't so sure about trying The Good Fight--it just wouldn't be the same without Alicia Florrick--but this show is just so much fun! Its creators have captured a kind of magic formula with the excellent cast, the outstanding writing, and the interesting, twisty plots. Each episode usually revolves around a new legal case, but there are plenty of continuing storylines about the main characters, including Diane's now-shaky marriage to conservative firearm forensics expert, Kurt McVeigh (played by Gary Cole); Maia's ongoing problems with her parents' ruinous financial scheme; and Lucca's steamy affair with the Assistant DA, which makes for some awkward courtroom moments. Familiar faces from the original show--like judges and other lawyers--keep popping up to our delight, though you absolutely do not have to have watched The Good Wife to enjoy The Good Fight--it stands on its own. Every single episode is interesting, gripping, and usually hilariously, laugh-out-loud funny. We often watch some sort of darker mystery/thriller show first in the evening, but I love to end our TV session with a humor-filled episode of The Good Fight. We are into season 2 now, and it just keeps getting better and better!

The Good Fight is a CBS All Access (CBS' streaming service) original show, so it is available there, as well as through Amazon (where you can also sign up for CBS All Access). Though we resisted signing up for new streaming services, we did sign up for CBS All Access this winter, for just $5 a month, so my son and I could watch NCIS, but we are finding that their original shows, like this one and their Star Trek shows, are excellent and well worth the price.

The trailer outlines the premise of the show but doesn't capture its humor:


What YOU Can Do for ME/CFS (and Lyme) Awareness Day/Month!


May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

  • Check out the #MEAction website for their virtual #MillionsMissing2020, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics, and more. Check out all the options at the link.
  • Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
  • Edit your profile pics on social media with a frame or a #millionsmissing filter. I am changing my Facebook profile to this one below, with an explanation of the things I am missing due to ME/CFS (including backpacking!). Here is this year's #MillionsMissing profile pic frame or this frame from a few years ago. Twibbon also has a bunch of other options, including blue ribbons, from previous years (I couldn't find the one I used still available).

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 18 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today (flu-like aches, sore throat & exhaustion) from a 1-hour Zoom meeting and a short walk yesterday! A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."
Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Tuesday, April 28, 2020

TV Tuesday: Better Call Saul

As many of our favorite network shows are wrapping up for the season (some earlier than planned because they ran out of new episodes), we have turned to streaming services for some old favorites, like Bosch (on Amazon), and are trying some new shows. One that we liked immediately is Better Call Saul, a funny, suspenseful Breaking Bad prequel spin-off that stands on its own.

Jimmy McGill, played by Bob Odenkirk, is a two-bit lawyer, struggling to make an honest living. His office is in the backroom behind a nail salon, he drives an old car that is literally falling apart, and he works hard as a public defender to earn a measly $700 per defense. Jimmy puts on a good show in front of others, but it's clear he is a decent guy who cares about his clients and wants to succeed. He also cares deeply for his brother, Chuck, played by Michael McKean. Chuck is a partner in a high-powered, slick downtown law firm, but he's currently trapped in his own home, helpless, as the victim of his own mental illness. After a lifetime of big brother Chuck bailing out (sometimes literally) screw-up baby brother Jimmy, their roles are now reversed. As Jimmy scrambles to make a living, sleeping on the pull-out couch in his tiny office, he also takes good care of Chuck, bringing him newspapers and groceries and following his rules to keep all electromagnetic radiation away from him. But life is never easy for Jimmy: even as he leaves the courthouse where he toils so hard for so little, he always gets stopped by the parking attendant, Mike (played by Jonathan Banks and delightfully familiar to Breaking Bad fans), for not having his card properly validated. Through a complex scheme-gone-wrong to earn a few extra bucks, Jimmy ends up tangled up with criminal Nacho Varga, played by Michael Mando. Somehow, eventually, Jimmy will end up transformed into slick lawyer Saul Goodman, who plays a role in Walter White's drug business in Breaking Bad.

First, you do not need to have seen or know anything at all about Breaking Bad to enjoy Better Call Saul. The show completely stands on its own, as the prequel story of one side character from Breaking Bad, but fans of that huge hit will delight as familiar characters (like Mike) show up here and will wonder how Jimmy eventually becomes Saul. We were reluctant to watch this spin-off for a while, in part because we didn't really like the Saul character all that much, but Jimmy in this earlier incarnation is great fun to root for and a much more complex character. He's smart and hard-working and caring but clearly the underdog. It's a fast-paced show with plenty of intrigue and suspense through the cases that Jimmy gets involved with, and it's got a great sense of humor that keeps things light. So far, we haven't seen any of the darkness that so permeated later seasons of Breaking Bad (which was still funny). We're loving this show so far and are looking forward to seeing where Jimmy's career takes him and how he will eventually make the transformation to Saul Goodman.

We've watched just the first six episodes of season one so far, but there are five seasons out, with more planned, so this is a great one for binging! Season five just finished airing on AMC, so it is available On Demand through your cable provider or you can see some episodes for free at the AMC website. The first four seasons are available on Netflix, so season five will probably end up there, too, in due time.


Sunday, April 26, 2020

Weekly Inspiration: Advice and Tips for Daily Living in the Pandemic

Although "staying home" is nothing new to many of us, and personally, I am kind of relieved to see everything on my calendar crossed off (no worries or pressure about what I'll be able to manage), the current global pandemic does bring some challenges, even for those of us who are used to isolation and our own kind of quarantining.

For one thing, there is lots of anxiety, especially if you watch/read a lot of news. You want to know what's going on in the world, but it's frightening to read of the ever-rising death toll and causes apprehension to hear the latest political in-fighting or medical controversies. A quick trip to the grocery store is nerve-wracking, with not everyone wearing masks or following the social-distancing rules. And, of course, there is the ever-present worry about what will happen if we or someone we love is exposed to the virus.

Beyond that, though, I am also hearing a lot of anger and resentment from the chronic illness community on social media. After all, we've been living this sort of life quietly in the shadows for years, some of us completely housebound, and no one has ever seemed to care before. Now, suddenly, healthy people are experiencing some of what we live with every day, and there are all sorts of programs, support, and assistance for those stuck at home. Where was all of this empathy and support when we needed it? It's a common complaint.

All of these stressors--and more--not only make us feel worse emotionally but will probably worsen our physical conditions, too. Anxiety, anger, resentment, and other negative emotions have all been shown to worsen fatigue, pain, and other symptoms.



To counter that, today I am sharing some excerpts from my new book, Finding a New Normal: Living Your Best Life with Chronic Illness, that I think can help right now--some things to think about, advice, and practical tips to ease the stress and make this time of crisis easier on both your mind and body:

Through the years, though, we realized that our new lives are not just about restrictions. In fact, we have discovered benefits to our new, slower lifestyle.”
While many of us may have realized this years ago, taking the time to really think about this idea, what you are grateful for, and the benefits of this extra-restricted time can pay off. This week, I started a #silverlinings hashtag on social media, and lots of people (both chronically ill and healthy) came up with some great thoughts, from more time with family to friends and family being in the same boat and thus more understanding to that empty calendar that I am relishing.

Along similar lines:
“I find that the worse I feel, the more I gain from forcing myself to think of something I am grateful for, so I try to make a practice of it.”
Again, the benefit comes from the conscious act of thinking about gratitude and making it a daily practice. Every day, on this blog's Facebook page and Twitter account, I post a #GratefulToday hashtag and others join in with what they are grateful for. Another chronic illness blogger uses #DailyThankYou. Either way, practicing gratitude makes you more aware of the good things in your life.

And this is one I have to keep reminding myself of these days:
“If you are going through a bad period emotionally (or physically), don’t try to be productive and get things done or push yourself in any way. Indulge in comforting rituals, like a favorite herbal tea, a piece of dark chocolate, staying in bed.”

“I have to remind myself that giving in to what my body needs is not the same as giving up. Giving in is a healthy response. It’s listening to my body, allowing myself to rest, and admitting to myself that “I’m right where I need to be.””

I've had a lot of ups and downs these past couple of months, mostly due to my Lyme treatment, I think, and I've struggled so much with guilt over not being productive. It seems that many people are dealing with some form of this right now because living in a global pandemic is just plain distracting! It's hard to concentrate on anything, so we all need to cut ourselves a break, listen to our bodies, and take extra good care of ourselves.

Along those lines, here are a few thoughts about the benefits of being present and living in the moment:

“We discovered that we could reduce our stress by living in the moment.”

“When you set aside worry, anxiety, and things outside of your control to live in the moment, you automatically slow down and start to notice the good things in life.”

“Teach yourself to recognize small moments of happiness in your life and to feel grateful for what you have.”
It can be tough to live in the moment; it's a skill that takes practice. But by consciously setting aside what is out of your control and focusing on the birdsong out your window or your favorite music or an uplifting book or movie, you can begin to train yourself to focus on now

Finally, for the very common issue right now of feeling angry or resentful toward "healthies" complaining about the current situation, consider this advice, for your own health:
"When you suffer from serious illnesses that severely limit your life, it is easy to feel resentment or bitterness when someone else tells you about his or her challenges, which might seem to you like nothing compared to yours. Reject that inclination and dig deep for empathy. Listen attentively and compassionately when someone else shares a challenge with you. It will enrich your relationships and help you feel less isolated."

“Avoid comparing suffering; that’s a contest no one can win. Show others that you care about what they’re going through, and you will usually receive caring back.”
Again, this can be hard to do, to replace resentment with empathy, and can take some conscious effort and practice. But the benefits are huge, both in strengthening your relationships and in increasing the caring and empathy you receive in return.

I hope that these brief excerpts will give you something to think about and help to improve both your everyday life and this strange world we are currently living in.

What has been helping you to cope and feel better during the pandemic?



Sunday, April 19, 2020

Weekly Inspiration: Some Good News During the Pandemic

Since the pandemic started, and our lives got even more strange and anxiety-riddled, I have shared several posts to help:
  • Coronavirus and ME/CFS - some basics, theories about how those with ME/CFS might react to the virus, and treatments to try now to improve your immune system and later, if you are exposed.
  • Info and Resources on COVID-19 and ME/CFS - all the up-to-date details you need, from the top experts in ME/CFS, as the pandemic grows.
  • Coping in a Crisis - the emotional support side of all this, including inspiration, dealing with stress, compassion, and even some recommendations for uplifting or funny books, movies, and TV shows.
So, with all of that serious preparation available, today, I'd like to turn to something that is guaranteed to make you laugh, tear up (in a happy way), and smile until your face hurts!

John Krasinski (who famously played Jim on The Office and directed and starred in The Quiet Place) has launched a new, homemade show on YouTube called Some Good News (SGN). It features John "reporting" from home (with a sign made by his daughters) about all the good things that are happening in the world today--people reaching out to others, entertaining themselves and others, kindness, humor, and more. He has four episodes out so far, and they are AMAZING! He often has special guest stars on video chat (including his The Office co-star Steve Carell) and highlights regular people making a difference, doing wonderful things, and making us laugh.

Here's episode 1:



And you can not miss Episode 2 - I promise you, it is really special and will leave you grinning from ear to ear (especially if you are a Hamilton fan)!



We haven't watched episode 4 yet, but I see that it includes a virtual prom for high schoolers missing out this spring - should be a good one!

And if you are more in the mood for just plain funny silliness, then check out the Family Lockdown Boogie, which is hilarious! (and really well-made) (I asked our son if we would be making a family dance video soon--I'm guessing from the look on his face, the answer is no!) But this family is having a blast:



What have you found during this crisis that has helped to lift your spirits, make you laugh, or left you smiling?

Everyone stay safe and healthy ... and keep smiling!

(P.S. For more uplifting shares and social interaction, follow me on Twitter or "like" my Facebook page--there are kind, supportive communities of fellow patients in both places).

Tuesday, April 14, 2020

TV Tuesday: Miracle Workers: Dark Ages

In need of some good belly laughs and all-around silliness? Who isn't right now! We are finding that Miracle Workers: Dark Ages is the perfect answer when we need a lift, with an all-star cast and a sense of humor that reminds us of Monty Python or Norsemen. First, a quick explanation (it's a bit confusing and I had to look this part up!). The first season of Miracle Workers was an entirely different premise; the one we are watching, Dark Ages, is season 2. Apparently, the overall show is based on the writings of humorist Simon Rich. Season 1, just titled Miracle Workers, was based on his novel, What in God's Name, and is about two low-level angels that must save Earth by helping two humans fall in love. Season 2, Dark Ages, is an entirely different story, with the same cast playing different roles, based on Rich's short story, Revolution, and set in Medieval times.

In season 2, Daniel Radcliffe (of Harry Potter fame) hilariously plays Prince Chauncley, the very clueless son of a cruel king in a small town in the Middle Ages. Karan Soni plays Lord Vexler, the king's top advisor. Out in the village, the focus is on the Shitshoveler family (you see, people are named after their occupation). Steve Buscemi plays Edward, the head of the Shitshoveler family, and the town's ...you guessed it ... shit shoveler. His younger son, Mikey, is played by Jon Bass, and his daughter, Alexandra, is played by Geraldine Viswanathan. The first episode opens on graduation day, when Al and her friends are talking about what they will do next. Al is super smart and one of the few townspeople who knows how to read, but she must follow in her father's footsteps and learn the shit shoveler trade. Her best friend, Maggie (played by Lolly Adefope), joins the local convent, but the two young women remain close and often end their days up on a roof overlooking the town and drinking mead. Prince Chauncley is pretty much a screw-up because he's never had to do anything for himself, but he has eyes for Al and wants to be a better person to impress her. That's the basic set-up, but of course, each episode presents a new problem and digs deeper into the characters.

It's impossible to describe the humor of this show--you just have to watch the first episode to see for yourself! If you are a fan of Monty Python and the Holy Grail, you'll love this show. The approach of the show is also very similar to Norsemen, a Viking comedy. Both shows are set long ago but include hilarious references to modern times planted here and there, ready to surprise a laugh out of you (to see what I mean, check out the trailer below; the last scene in it features Chauncley setting out on a road trip). Each episode is just 30 minutes long, so it is perfect when you need a short escape from the sobering news ... or for binging, if you prefer! The cast is amazing; all of them are perfect in their roles, acting straight while making you laugh. The show also has plenty of heart. Radcliffe as Chauncley has this adorably vacant stare, as he fumbles through his life, trying to attract Al's attention. Viswanathan is smart and clever, and Buscemi as her father plays the straight man hilariously. Are you getting the idea? This show will make you laugh!

Miracle Workers: Dark Ages just wrapped up season 2 on TBS, so all of the episodes are available On Demand or at TBS's website (as are season 1 episodes). We are up to episode 6 of 10 in season 2 (and still need to watch season 1). I believe it is also available on Hulu.

Thursday, April 09, 2020

Info & Resources on COVID-19 and ME/CFS





I've been meaning to put this post together for two weeks, but I haven't been feeling well. As I explained in my Weekly Inspiration post, we're playing the guessing game--with a new, scary twist--with my recent downturn: allergies messing with immune system? changes in Lyme treatment/Herxing? exposure to COVID-19?? Hard to say. Most days, I feel fine, just not quite up to my usual "normal"--a bit achy and low stamina (I can normally be quite active now without crashing; not so much lately). And every 3-5 days, I have a major crash day, with severe aches and exhaustion, which is normally very rare for me now. I rest a day and am back to "fine but not at my normal baseline." Otherwise, we are all managing well and handling the stay-at-home orders pretty easily. As for many of us, this isn't all that different than my normal life, just no doctor's appointments and far fewer errands. Since I haven't had my usual stamina, the downtime has been good for me, and I am trying hard to listen to my body.


But, enough about me! I know all of us with ME/CFS still have plenty of questions--all the stuff regular people are wondering, plus much more! So, here I have collected a bunch of useful information, articles, videos, and other resources from the top experts in ME/CFS.

First, my own earlier post on Coronavirus and ME/CFS explains the specific ways that our immune systems are dysfunctional and how the virus might affect us, with some suggestions for ways to improve your immune system now and extra treatments to try if you are exposed. We've been doing all of these things here at our house! If I was only able to do one thing right now, my choice would be to begin taking inosine (also sold as Imunovir), which is super-cheap, readily available, and very effective at improving the immune system (thus, improving all ME/CFS symptoms), reducing exercise intolerance, AND it also acts as an anti-viral. For more information, see Imunovir and Inosine for Treating ME/CFS.

Dr. Nancy Klimas's excellent video on Coronavirus (COVID-19) and ME/CFS includes lots of great information for patients:



Most of what she recommends has been covered previously here on the blog, so for details refer to my posts on: 
There has been some discussion on whether an herbal supplement used as a histamine blocker, quecertin, might be helpful against the coronavirus. My son and I take it every day for allergies/MCAS. It's explained in this blog post on Mast Cell Disease and Coronavirus. Here's more information from my own blog on Mast Cell Activation Syndrome (MCAS) and quecertin.

ME International Blogs (from the UK) provides a good collection of information on Coronavirus (COVID-19) and ME, including basic tips on sanitation, symptoms, and more, plus a minute-by-minute summary of Dr. Klimas' video (above).

Finally, as always, Cort Johnson's blog HealthRising (Cort is an ME/CFS patient and an excellent journalist) is providing outstanding coverage of the coronavirus crisis, as it happens, with a specific focus on how it affects (or could affect) those with ME/CFS. Cort's research and reporting are always thorough and easy to understand. Here's most of his series on the virus (keeping in mind that he reported as news and studies became available, so some information changed over time):
I hope you find all of that helpful.

If, on the other hand, you have information overload and need to STOP reading about coronavirus to reduce anxiety levels, then check out these two recent Weekly Inspiration posts: Coping in a Crisis and You're Right Where You Need to Be for lots of ideas for relaxing, de-stressing, and taking care of yourself.

Sunday, April 05, 2020

Weekly Inspiration: You're Right Where You Need To Be

We had a little scare this past week. Normally, I manage pretty well these days and can even be fairly active. Crashes from over-exertion or even from exposure to colds, etc. have become rare for me. But I have been achy and run-down all week. I sort of took it easy but sort of kept going with my normal life, too, even going to the grocery store on Thursday. By Friday, there was no ignoring it: I was fully crashed. I could hardly get out of bed, had severe aches, was worn out, and even had a mild sore throat. By my normal standards, I hadn't done anything that would usually result in a crash, so my husband and I got a little panicky: what if this was coronavirus? (though my husband also pointed out there are still plenty of ordinary viruses around that could trigger a crash). I listened to my body and rested, something I'm not always very good at!


I felt much better on Saturday, though I still took it easy. Today is still questionable--I woke up feeling great but am a tiny bit achy now, a couple of hours later.

This past week, what helped get me through was remembering a line from a friend's book, "You're right where you need to be" (from Seven: In the Lane of Hope by Michael Marini). His whole memoir is inspirational, but this one line struck me so deeply that I wrote a chapter in my new book about it. At times like this week, when I am frustrated by not being able to do what I want to do, it helps remind me to live in the moment, be present, and listen to my body. Coincidentally, this is advice we can ALL use right now, healthy or sick, during this time of extreme restrictions.

So, I thought I'd share this chapter excerpted from my book, Finding a New Normal: Living Your Best Life with Chronic Illness, here. I hope you find it helpful, too:


You’re Right Where You Need to Be

In autumn of 2018, during a severe, three-month–long crash triggered by a relapse of Lyme disease, I was frequently frustrated by my inability to be productive. With a wide variety of treatments, I normally function fairly well now, and this unexpected infirmity seemed to go on and on.
During that time, I was reading an inspirational memoir, Seven: In the Lane of Hope, written by a friend of mine, Michael Marini. One line in Michael’s book especially resonated with me. His dad, who was a running coach, frequently told Michael and his 10 siblings “you’re right where you need to be” while they were running a race. In the book, his dad repeats this familiar phrase when he is in the hospital and incapacitated by health problems. That phrase struck me and helped me recognize that I needed to relax, let go of my normal expectations for myself, and live in the present.
Sometimes, you hear something at exactly the time you need it, and that was the case for me with this simple phrase: you’re right where you need to be. It reminded me that during this crash/relapse, my job was to take care of myself and everything else could wait. It’s hard to get out of the must-do mindset so prevalent in our modern world. Yet, this one line did that for me, making me stop and think instead of just reacting.
With respect to living with chronic illness, I’ve found that “you’re right where you need to be” means the following.

Giving in Versus Giving Up
Although severe relapses have become rare for me, thanks to treatments, when they do occur, I always struggle with accepting my limits and resting completely. For instance, I might lie down on the couch but still try to work on my laptop. I have to remind myself that giving in to what my body needs is not the same as giving up. Giving in is a healthy response. It’s listening to my body, allowing myself to rest, and admitting to myself that “I’m right where I need to be.” That can be difficult, though, in a culture like ours, in which we feel like we must always be in control. When I do finally give in, set aside any work, and completely focus on resting, it’s always a huge relief.

Accepting Where You Are
You can accept that you are right where you need to be now without giving up hope of a better tomorrow. Living with chronic illness requires a careful balance of acceptance and hope as well as an understanding that acceptance does not mean giving up. Constantly fighting against your illness is stressful and exhausting, requiring mental energy most of us don’t have. It’s better for your body—and for your long-term health—to try a Zen-like attitude and accept where you are today. You can continue to look for and try new treatments while acknowledging what you need right now. During that challenging autumn of 2018, once I accepted my need for rest and let go of thinking I had to be doing something, I was able to fully rest and give my body what it needed.

Different Seasons
There are different seasons in every life and in the course of a chronic illness. “You’re right where you need to be” means recognizing that where you are today is simply where you are today; tomorrow or next month or next season or next year might be different. A principle of Buddhism is that everything is in a constant state of change. When living with chronic illness, it may sometimes feel like every day is the same, but over the course of a life, there will always be changes and other seasons. Recognizing this truth can help you to accept where you are today and give yourself the care you need.

Live in the Present
This is a tough one for most of us, but living in the present is far less stressful and better for your physical and mental health than looking back or ahead. Obsessing over past hurts or “the old you” can set up a painful and self-destructive mindset, wherein resentment and pain build and worsen, poisoning your body and mind. Worrying about the future can be just as detrimental and make you miss what is going on today.
As hard as it is to do, it’s best to let go of the past and live in the present. That’s what “you’re right where you need to be” means. It’s fine to plan for the future in a positive way—without worrying about what will happen and about those things that are out of your control.




All of these strategies require intentional thought (at first) and some practice. Over time, though, acceptance, living in the present, and focusing on your needs become habits that can improve your life. Wherever you are today in your life and your illness journey, you’re right where you need to be.