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.