News From Our House: Dec. 3, 2020 - Ups and Downs

Wow, it's been two months since I posted a personal update here! That was in part because I suffered a very severe crash in October, but we've also had a lot of other things going on.

 

My Update

As I explained in my last News From Our House post, I experienced an unexplained downturn starting in March of this year. One possible cause, based on lab results, was reactivated HHV-6 (a herpes family virus similar to Epstein Barr Virus), so I took antivirals (famciclovir or Famvir), beginning in June. I stayed on them until the end of October, though the whole time, I continued to experience worsened symptoms, especially fatigue and flu-like aches (signs of immune activation). As I reported in that last post, I was doing a bit better and even managing a little activity ... when an even more severe crash hit.

I spent a lot of time reading in bed in October!

I have no idea what triggered this one, but I was mostly couchbound/bedridden for almost three weeks in October. After 8 months of feeling somewhat worse than usual, this was an unwelcome surprise! I went from being run-down and achy to being almost completely non-functional. I know you all get it and have been there yourselves. It was awful.

Finally, I slowly began to feel better and regain some stamina. I stopped the antivirals at the end of October (that was the end of my prescription) and felt somewhat better in November. I was still having more crash days than usual and some mild aches, but I was able to begin to start walking and going to the grocery store again. 

Happy to be out walking with my husband again in November!

 

Two weeks ago, I ran out of my Lyme treatment (that I'd been on again since the beginning of the year) and decided to try going off it. After all, when my Lyme recurs (as it tends to do every few years), I usually just treat it for a few months. This year, I didn't want to stop treating Lyme while I was on antivirals (or vice-versa) because Lyme, like ME/CFS, can cause old viruses to reactivate. And I still felt about the same those two weeks off the Lyme treatment, though I began to notice some aches in my knees again (that is one of my Lyme symptoms). So, I ordered more treatment (I take A-L Complex from the Byron White protocol) and restarted it at the beginning of this week, and guess what? I've been feeling really good! I've walked every day this week, gone shopping, and even restarted (very slowly and while lying on the ground) some gentle weight work. I was a little achy today, but that's probably due to stress yesterday. So, the good news is that I am feeling better, but the bad news is that apparently, my Lyme infection is still active, after almost a year of treatment. I've decided to try seeing my son's Lyme specialist to see if she has any new ideas for me.

 

Big News at Our House

The really big news here is that our 26-year-old son (ME/CFS since age 10 and tick infections since age 12) moved out at the end of October! Though he lived on his own while he was in college, he hit bottom with his condition in spring 2019 and moved back home. He's been working hard (with two new medical specialists) to try to improve his condition and to find a job. His degree is in Environmental Engineering, but he has no job experience (which even entry-level positions require) because he used all his time and energy at school taking classes, with nothing left for co-ops or internships like other students. So, it's been challenging for him--and frustrating--but he found a job that is a good first step for him. It's not engineering, but it is in the environmental field, so that's a step in the right direction. He moved to his girlfriend's in another state, and they are renting a basement apartment from her parents, so there's a safety net there in case things don't work out for him or he can't manage the job. His first month was challenging, but he's doing well and is thrilled to be out on his own. For the parent of a chronically ill kid, this is like the Holy Grail!

 

Recent Blog Posts

While I haven't written one of these updates in awhile, I did manage some blog posts in the past two months. Here are a few that might be of particular interest to you, in case you missed them:

The October Slide - ME/CFS and Infectious Triggers - if you experience a downturn every fall and winter, then this post is for you! I explain why this is such a common occurrence for us, what you can do to prevent it, as my son and I mostly have, and what to do when it happens (as it did to me last month!).

Official Statement on COVID-19 Long-Haulers and ME/CFS - news media around the world have been reporting on so-called COVID-19 "long-haulers," who recover from the virus but are still debilitated by fatigue, other symptoms, and exercise intolerance. Sound familiar? The U.S. ME/CFS Clinician Coalition published an official statement, explaining what ME/CFS is and how to diagnose and treat it. Includes lots of scientific references--perfect for sharing with doctors.

Weekly Inspiration: Two Inspiring Podcasts - check out these two podcasts that I am enjoying - I especially love Everything Happens.

Weekly Inspiration: Busting the "Everything Happens for a Reason" Myth - this is also from my new favorite podcast! I shared an inspiring TED talk by the podcast host that made me both laugh and cry; she is wonderful and she truly "gets it."

Weekly Inspiration: Chronically Ill Holiday Gifts and Tips - a collection of posts from other bloggers, featuring holiday gift guides and tips for managing the holiday season - some great stuff here!

Giving Tuesday - Multiply Your Donations! - list of ME/CFS-related causes to donate to, plus easy ways to raise money for ME/CFS research (or other causes) without spending a dime, just by online searching and shopping. Though the post was for Giving Tuesday, the information and links are still valid (and some of the doubling and tripling of donations deals are still open!).

 

What We've Been Watching and Reading

First, if you are in need of some cheering up right now, check out Hunt for the Wilderpeople, a movie available on multiple platforms (links at the review). My husband and I loved this warm-hearted, very funny family adventure set in the New Zealand outback. Read my review at the link and watch the trailer to see what I mean!

For a very different, darker kind of entertainment, my husband and I have been enjoying the Western drama Yellowstone, starring Kevin Costner. We watched seasons 1 and 2 earlier this year, and season 3 was just released on Peacock network (which is free). This is basically a high-quality soap opera, set in the modern west on an enormous ranch in Montana. The scenery is gorgeous, the actors are excellent, and the plot is super-twisty. 

We also enjoyed a dark and suspenseful thriller, The Stranger, a Netflix limited series based on a Harlen Coben novel. It's a complex thriller where a stranger comes to a town and starts telling people secrets about their family or partner, etc. that they didn't know, basically ruining lives. It was very good and kept us riveted!

As for books, being so badly crashed in October meant a lot of extra reading time for me! As I like to do, I read for the season, focusing on darker books in the fall, like mysteries, thrillers, and more. I read some really outstanding books in October. You can see my monthly summary here, from my book blog, including which books I read, which were my favorites, and how I'm doing with my annual reading challenges.

Last month, I changed my reading focus to #NonfictionNovember (I enjoy theme-reading, as you can see!). Because I was so sick in October, I got way behind in writing books reviews, so I haven't reviewed any of my nonfiction books yet, but easily my favorite of the month was the latest memoir from Michael J. Fox, No Time Like the Future: An Optimist Considers Mortality, which I listened to on audio. Like his previous memoirs, this one was warm, thoughtful, moving, and very funny. He reads it himself, and it's a treat to hear that familiar voice telling stories from his own life. As with his previous memoirs, his life with Parkinson's Disease is a big part of it, so it's even more relevant for anyone living with a chronic illness, and in this one, he also talks about aging.

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.

Giving Tuesday 2020 - Multiply Your Donations!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy - all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this ambitious fundraising goal, and every donation is TRIPLED! It's a great opportunity to make your money go farther! The campaign has been going on since October 20, and they have already surpassed $1 million, which will all go toward scientific research into causes, treatments, and cures for ME/CFS. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - the Solve ME Board $1 Million Double Your Money Challenge - Members of the Solve ME Board have pledged to add an additional $500,000 if donations add up to $500,000 by December 31. Your gift of $10 or $20 or $50 can help reach this threshold and unlock a million dollars for ME/CFS research and advocacy! You can read their latest newsletter here and read more about the research this organization is supporting here.
  
• Simmaron Research - donate through their website and you can read all about their research results and programs here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutelt essential to increasing research funding. Read more about them here, and you can donate to their Giving Season Campaign here.
  
• ME Association - Big Give Christmas Challenge runs from today through Tuesday, December 8, and supporters have pledged to double donations up to 11,250 pounds. This is a UK-based organization that is focused on patient support and advocacy, as well as some research. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match $7 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in!

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $292 to them, and that they have earned a total of $6449 from all supporters! Isn't that amazing? Over $6000 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2020 says they sent a payment of $1006 to Solve ME/CFS for the quarter and that to date, the organization has received $11,388 from AmazonSmile! These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Movie Monday: Hunt for the Wilderpeople

We were scrolling through Netflix and Amazon this weekend, as one does, searching for a movie we both wanted to see. There were plenty I was interested in that my husband wasn't, neither of us wanted anything too dark, and it seemed like we'd already seen all "the good ones." Then my husband suggested Hunt for the Wilderpeople, which I had scrolled right past earlier; he'd read about it online and thought it sounded good. What a great choice! We both loved this funny, warm-hearted adventure set in New Zealand.

As the movie opens, a social worker named Paula, played by Rachel House, is delivering an overweight young teen boy named Ricky, played by Julian Dennison, to a new home in a remote, rural area. Bella, played by Rima de Wiata, welcomes Ricky warmly, in spite of the long string of previous problems that Paula recites to her. Hec, played by Sam Neill, also lives there, and Bella tells Ricky he can call them Auntie and Uncle, if he wants to. After being shuffled around for years and generally unwanted, Ricky is understandably doubting and distrustful. He even tries to run away, but Bella's warmth and kindness eventually win him over. Then tragedy hits, and through a series of events, Ricky ends up in the bush (wilderness) with Hec, who's been injured. The two of them work together to make a camp for themselves until Hec's ankle heals enough that they can walk back home. When they're on the move again, though, six weeks later, they discover that there is a national manhunt going on ... to find the two of them! As the authorities have completely misunderstood their absence and want to take them both into custody, the pair decide to just stay out there. Many adventures follow!

We loved absolutely everything about this unique movie! The pairing of a difficult teen and a grumpy old man might seem a bit trite, but it is wholly original here, with the actors playing Hec and Ricky both doing an outstanding job in their roles. The more time they spend together alone, the closer the two misfits become, as they help each other to heal. This is truly an adventure movie, action-packed with plenty of suspense, but there is wonderful humor woven into every scene and a warmth that made us both smile throughout the film. I think this is my favorite movie of the year! We both laughed and enjoyed every moment of this uplifting movie. I think we could all use a little Ricky and Hec right now.

Hunt for the Wilderpeople is currently available on Netflix or to rent on Amazon, starting at $2.99 (or $6.99 to own) - definitely worth it!

Weekly Inspiration: Chronically Ill Holiday Gifts and Tips

I want to put together my own gift guide for the holiday season, but I haven't had time yet (very busy this past week with Thanksgiving and still not quite back to my usual baseline from my 8-month-long crash).

Then I noticed that lots of other chronic illness bloggers have already put together some wonderful gift guides and holiday tips for those with chronic illness, so I thought I'd collect those here and share them with you! Gifts first ...

 

Chronic Illness Gift Ideas

Well, first, of course, I have to mention my own book, Finding a New Normal: Living Your Best Life with Chronic Illness, which includes all kinds of support and advice for daily living, emotional coping, relationships, and, yes ... tips for managing the holidays! 

From now until December 13, you can buy my book on sale for a reduced price: just $9.99 for the paperback and $6.99 for the e-book (available in all popular formats for Kindle, Nook, Apple, Kobo, and more). You can read more about it and find the links to all the different formats here.  

 

My Migraine Life blog has a wonderful new post, 20 Gifts for Migraine Relief: Gift Guide 2020, with some awesome ideas for the migraine sufferers (or others just needing comfort) in your life--or gift ideas for you to share with loved ones! She has some awesome gift ideas here. My son and I both use head ice packs/ice hats and CBD oil, and my other son just gave me a salt lamp for my birthday that I can't wait to try! 

Chronic Mom has a gift guide focused on those with chronic pain, though many items are perfect for anyone dealing with any kind of chronic illness/medical condition. How to Find the Best Christmas Gifts for People with Chronic Pain includes 10 great gift ideas, and some of them come from small business owners with chronic illnesses themselves, so that's a double-win! I've never heard of migraine glasses before, but they sound perfect for my son.

Me, Myself, and Chronic Illness Blog has a unique twist on the gift guide: Low Cost/Low Energy Gift Ideas for Others. If money is tight and energy is low, she's got five great gift ideas that cost very little but will provide a thoughtful gift for your loved one. Some involve some simple, low-energy crafting and some are even simpler than that! Loads of creative ideas here to get you started. These kinds of personal, thoughtful gifts are often the most appreciated.

 

 

The Pain News Network published a list of 12 Holiday Gifts on Life with Chronic Pain. This is a list of books, and my own book is the first one on the list! Others also deal with emotional coping or personal stories, some with specific approaches to pain management, and some to specific conditions that cause chronic pain. I am honored to see my book included with such an outstanding list of books!

Holiday Coping Tips for the Chronically Ill

Besides my own book, there are a couple of excellent blog posts that provide tips on managing the holiday season, a significant challenge for all of us with chronic illnesses:

 

Navigating the Storms: Thriving in the Midst of Invisible Disabilities has a new blog post, Advent Begins, that answers the question, "How can we prepare for Christmas when we deal with so many limitations daily?" She includes some excellent, supportive tips that we can all benefit from, plus a few more resources to help.

 

My Medical Musings offers a focus on enjoying the season in our own way in Decking the Halls and Creating Comfort and Joy at Christmas. She talks about her own experiences and tips on creating new or revised traditions that fit within our restricted lives. It's a lovely post with some great, creative ideas for celebrating the season in our own way.

 

I hope these excellent blog posts help YOU to get ready for your best holiday season ever!

TV Tuesday: Yellowstone

After hearing several friends rave about the TV series Yellowstone, my husband and I decided to try it. We loved the first two seasons of this modern Western drama and can't wait to see season 3 when it starts this week!

Yellowstone is the name of an enormous ranch in Montana, headed up by patriarch John Dutton, played by Kevin Costner. John has three grown sons and a daughter but lost his wife tragically when they were still kids/teens. He is getting older but is still fiercely committed to protecting his huge ranchlands, from the constant threat of land developers and the local Native American tribe. John's plan is for his oldest son, Lee (played by Dave Annable), to take over the ranch eventually, and Lee's been training for that. His next son, Jamie (played by Wes Bentley), was sent off to Harvard to become a lawyer so that he could protect the ranch legally, so he works in town. The youngest son, Kayce (Luke Grimes), was in the military--which clearly left some emotional scars--and is married to Monica (played by Kelsey Asbille), a beautiful Native American woman. They live in a small house on the reservation with their young son, Tate, and Kayce is trying to make a living training horses, which is a special talent of his. John's only daughter, Beth (played by Kelly Reilly), is a bit of a mess, to put it mildly! She drinks way too much and is quite promiscuous, including with the ranch's longtime manager, Rip (played by Cole Hauser), who John treats almost like another son. Thomas Rainwater, played by Gil Biirmingham, is the well-educated newly-returned leader of the local Indian tribe, who is determined to return some of the Dutton's land to its original owners. Plus, there are evil brothers in development, and a wealthy guy new in the area who desperately wants some of the Dutton land for his new luxury hotel, golf course, and ritzy housing development.

In case you can't tell from that basic description, every episode is a rollercoaster of secrets, lies, deceipt, behind-the-scenes machinations and deals, plus a healthy helping of sex and violence. It's basically a complex soap opera set among cowboys in the West. Costner plays the consummate cowboy, though he will do anything to hang onto his lands and keep his ranch together. The rest of the cast is excellent, too, though many of the actors were unfamiliar to us. The ranch house is rustic but luxurious, and the land in and around the ranch is breathtakingly gorgeous. There are constant surprises and plot twists, keeping each episode action-packed and suspenseful. It's a riveting drama that kept us captivated through its first two seasons, and we can't wait to watch season 3!

Yellowstone is a Paramount Network show, so you can watch the new season 3 free on their website. It is also being shown (all 3 seasons) on Peacock, with season 3 starting this Sunday, which is also free (we watch it on Peacock through our cable service On Demand, but you can also watch it directly from the website). Finally, Yellowstone is also available on YouTube, with a subscription, or on Amazon for $1.99 an episode or $12.99 for the first season. Lots of ways to watch!

Have you tried this compelling Western drama yet? 

Weekly Inspiration: Busting the "Everything Happens for a Reason" Myth

I've already written here about Kate C. Bowler and her magnificent podcast, Everything Happens, in my post from a few weeks ago, Weekly Inspiration: Two Inspiring Podcasts. My love affair with Kate's moving, funny, inspiring interviews continues, and I have been listening to both her new episodes and her backlist. So, scrolling through the TED Talk site today, it occurred to me to check if she'd ever given a TED Talk. She had, at TEDMed 2018, and wow, it's a powerful talk that speaks directly to those of us with chronic illness.

As with her podcast--and book-- her TED Talk is titled, "Everything Happens For a Reason"--and other lies I've loved. In it, Kate explains how she had spent years studying the "prosperity gospel," the basic concept that good things happen to good people, and if you just live a good life, you will be rewarded. Then she was diagnosed with Stage 4 cancer at the age of 35. She tells the story, with jokes and also with tears streaming down her face at times, much better than I can:

 

 

 

A couple of her points really hit home for me. She talks about this concept of good people being rewarded, which implies the opposite: if something horrible happens to you, you must have somehow deserved it. She describes how hundreds of people (through her writing) have tried to convince her of this (what a horrible thing to say to someone with cancer!). She talks about the underlying fear that encourages people to think this way, which is basically "if it happened to YOU, then it could happen to me." In this way, people try to find a reason for your tragedy, a way to explain why the same thing could never happen to them. But, as she says in the opening to her podcast each week (see my earlier post--the full quote is so powerful), "Hey, there are some things you can fix and some thing you can't, and it's OK that life isn't always better ..."

I have experienced this first-hand with people in my life who refuse to accept the severity or permanence of my illness. One person very close to me even went around telling everyone else that my illness was all in my head in my early years of ME/CFS. I figured out long ago that this fear Kate describes was likely at the root of all that, but it still hurts tremendously to be minimized or to have my suffering ignored by people I love. That's why it feels so powerful and encouraging to listen to Kate's talk and podcast and to feel like she is talking directly to me.

On the positive side, she also discusses an unexpected benefit of her experiences with cancer (hers is treatable but not yet curable). In talking of discovering this hidden world of illness (see my own article, The Hidden World of Invisible Suffering), she says, "My own suffering began to feel like it had revealed to me the suffering of others." She explains that this led to more connection in life. 

I agree wholeheartedly! I've often written about exactly that (like in the article linked above): that one silver lining in a life of chronic illness is reaching out and connecting with others just like you. Finding others--online or in real life--widens your world and not only brings you comfort and companionship but allows you to offer the same to others, which can be incredibly rewarding. I wrote about that topic here, including how to find others.

She concludes with a statement I fully agree with: "Life is so beautiful and life is so hard."

Her talk is less than 15 minutes long, and is so powerful and touching. I hope it inspires YOU as it inspired me.

Official Statement on COVID-19 "Long-Haulers" and ME/CFS

I was excited to see a new letter published a couple of weeks ago, Post-COVID "Long-Haulers" and ME/CFS, from the U.S. ME/CFS Clinician Coalition, a cooperative group of the top ME/CFS doctors in the U.S. This 1-page letter (with a page of scientific references) officially summarizes what has been reported in various media outlets previously: that many so-called COVID-19 "long-haulers" have developed ME/CFS. They provide the background and history of infectious triggers and ME/CFS, explain what ME/CFS is, and provide an explanation of and links to their own website, which provides details on diagnosing ME/CFS and mentions some treatment options. It's a short, easy-to-understand letter, so take a look at it at the link above.

Why is this a big deal? 

Back in August, I wrote a post about COVID-19 Long Haulers and ME/CFS that provided links to a bunch of news articles, TV news stories, and other media summaries about those who had COVID-19 but continue to suffer with symptoms months after supposedly recovering, referred to as "long-haulers." All of those included in my post mentioned ME/CFS. The problem is that the news doesn't seem to be catching on very quickly or effectively! There are still loads of news stories every week about the "mysterious" long-haulers, saying that no one knows why they are still sick. I've noticed people joining some of the ME/CFS online support groups who are long-haulers and don't yet have a solid diagnosis. 

In short, while some experts understand what is going on, it seems that most of the medical profession (particularly those who have either not believed in or made light of ME/CFS in the past), the general public, and most importantly, the patients themselves have not gotten the message that many cases of COVID-19 long-haulers fit the ME/CFS diagnostic criteria. (Note that not all long-haulers fit that criteria; some have lung damage from COVID-19 that better explains their symptoms.)

This letter is the first time that a top group of experts have all communicated as a group and provided all of the information necessary to understand how so many people who had COVID-19 could now have developed ME/CFS.

How Can You Help?

Now, what we need is to help get the word out by sharing this letter widely. Share it on social media, print it and give it to your doctor(s) so they can better understand their COVID-19 patients, and share it with anyone you know who's had COVID-19 and is still sick so that they can share it with their own doctors.

If you are looking for more information on both the link between COVID-19 and ME/CFS and how COVID-19 might affect those who already have ME/CFS (and what you can do now to protect yourself), check out these posts from the past eight months:

• Coronavirus and ME/CFS (March 4, 2020) - includes information about the specific immune dysfunction in ME/CFS, how COVID-19 might affect us, and links to ME/CFS treatments that can help to prevent and treat, with resources from several different sources.
• Info and Resources on COVID-19 and ME/CFS (April 9, 2020) - a wide range of resources on how COVID-19 might affect those with ME/CFS and treatments to help protect yourself.
• COVID-19 Long Haulers and ME/CFS (August 27, 2020) - the aforementioned post about the connection between COVID-19 long-haulers and ME/CFS, with links to lots of news stories and comments from experts.

I hope that you and your family are staying safe and healthy during this difficult time.

Please share your own experiences in the comments section, whether you already had ME/CFS or are a COVID-19 long-hauler.

Movie Monday: Rebecca

Last weekend, on Halloween, my husband and I settled in for a creepy, suspenseful new adaptation of Rebecca on Netflix. We listened to the audiobook a couple of years ago, though my husband quit halfway through (at the end of our car trip), and I listened to the end. We both enjoyed the taut suspense of this new movie.

For those new to the story, Rebecca is a classic Gothic novel, written by Daphne du Maurier and published in 1938. It was first adapted to film in 1940 by Alfred Hitchcock. My review will focus mainly on this new adaptation from Netflix, which differs in some ways from both the book and the first movie.

Lily James plays a naive, pretty young woman working as a "lady's companion" for the loud and gossipy Mrs. Van Hopper, played by Ann Dowd, who is staying in Monte Carlo. When Mrs. Van Hopper becomes ill temporarily, the young woman (who is nameless in the story) is left on her own. She meets the handsome and charming Max de Winter, played by Armie Hammer, and the two of them immediately hit it off. Mrs. Van Hopper has warned her that Mr. de Winter lost his wife a year ago and is grieving and unstable, but in spite of the warnings, she falls in love with him and spends days with him, dining out, touring the area, and going to the beach, enjoying a lifestyle she never dreamed of. When Mrs. Van Hopper recovers and abruptly proclaims that they are returning to New York, Max proposes, and the two are quickly wed. After a honeymoon in Europe, Max brings her back to his huge estate in England, called Manderley. Coming from such modest means, she is completely overwhelmed by the wealthy and grandiose estate, its formal traditions, and especially the stiff and unwelcoming house manager, Mrs. Danvers. She makes it clear that the new Mrs. de Winter can never replace the old one, Rebecca, whose room and other things remain exactly as she left them. Try as she might to fit in and make a place for herself at Manderley, Mrs. de Winter finds it harder and harder to ignore the sinister feelings, as secrets slowly unfold. Things are definitely not as they seem.

This new movie successfully replicates the creeping dread and twisty plot surprises of the book, though some of the plot points and characters have changed in certain ways. For instance, Max is said to have a quick temper, but it doesn't really show up much in this latest adaptation. The ambiguous, sudden ending of the book here is drawn out a bit more, to allow for a happy ending. My husband and I enjoyed watching the movie, so I was surprised when I listened to a review of the new Rebecca on Pop Culture Happy Hour, one of my favorite podcasts, and found that most of the hosts didn't like it (their episode at the link - it includes spoilers). My conclusion is that if you have seen the 1940 Hitchcock film (which won an Academy Award for Best Picture), then you will probably find this version lacking. Similarly, if you are a huge fan of the original book and have read it multiple times, you may find yourself nitpicking at the differences here. My advice if you want to enjoy this new adaptation is definitely don't watch or rewatch the 1940 version first, as one of the hosts on the podcast did! I read the book (listened to it) several years ago, and my husband never even finished it, so we went into the movie fairly cold, and we enjoyed it as the excellent dark, creeping, suspenseful story that it is.

Rebecca  is a Netflix original movie, so it is available exclusively on Netflix.

If you'd like to watch the original 1940 film adaptation directed by Alfred Hitchcock, you can stream it on YouTube or watch on DVD.

TV Tuesday: The Stranger

The trend of adapting books into TV shows and movies shows no sign of slowing, which makes me happy! Novels often translate beautifully to the screen, bringing the characters to life and providing complex, intriguing plots. The Stranger, a Netflix original program, is adapted from a Harlan Coben thriller, and although neither my husband nor I read the book, we both thoroughly enjoyed the dark and twisty TV show.

Adam Price, played by Richard Armitage, lives a happy typically suburban life. He's a lawyer, his wife, Corrine (played by Dervla Kirwan), is a beloved high school teacher, they have two healthy sons, and they spend their Saturdays at the soccer field. One day, out of the blue, a stranger--a young woman wearing a baseball cap (played by Hannah John-Kamen)--comes up to Adam and tells him that Corrine faked her pregnancy and miscarriage the previous year. Stunned, Adam goes home and checks the evidence the stranger told him about and then confronts Corrine, who is upset but says he doesn't know the whole story. The next day, Corrine disappears, leaving a mysterious text message that says she needs some time alone. Meanwhile, Johanna, played by Siobhan Finneran, is a police detective in town who will eventually look into Corrine's disappearance. For now, though, she and her partner are investigating a brutal and strange crime scene in the woods, involving a decapitated alpaca from a local farm and a naked, injured boy from the local high school. As each episode unfolds, we see the stranger approach more people in the town, each time disclosing a secret held by a loved one, complete with evidence, and sometimes blackmailing them for large sums of money. Who is she and why is she doing this? And what happened to Corrine ... and that poor alpaca??

Just like the thriller novel it is derived from, this show takes off like a shot and is filled with all kinds of unexpected plot twists. By the end of the first episode, we were hooked, but each new episode adds another layer of complexity, as the stranger weaves a web of secrets and deceit through the people in town that gets more and more complex. It's just eight episodes long and fast-paced, so it kept us rapt ... and always wanting to know what happens next. We watched it over the course of a couple of weeks, but it would be a fun show to binge, too. The acting was excellent and the plotting superbly complicated (but not so much that we couldn't follow it). We really enjoyed this taut thriller filled with suspense that kept us guessing right up to its last moments.

The Stranger is a Netflix original so is only available on Netflix.

Weekly Inspiration: Two Inspiring Podcasts

Weekly Inspiration? More like Monthly Inspiration these days! Regular readers of my blog may recall that I have been worse than usual, with very low stamina, since March, and there is still no end in sight for that downturn (yet). But a few weeks ago, on top of that, I went into a very severe crash that left me completely bed/couch bound day after day and incapacitated. This bad crash felt like one caused by an infectious trigger, though I still have no idea exactly what triggered it. I had only mild viral symptoms (like a bit of a runny nose and post-nasal drip) and only for a few days, and no one else in my family got sick, showed any signs of a virus, or crashed (my son). It lasted a little more than two weeks, and my energy started to return in the latter part of this week. I am still quite achy most days, but my mental energy is back (back in 2012, I wrote a post about Mental Energy and ME/CFS that really hit home for a lot of people). So, here I am, trying to get back to regular blog posts (from the couch).

During this rough period recently, I discovered two new-to-me inspirational podcasts that I wanted to share with you. I heard about both of them on the Happier Podcast with Gretchen Rubin, which I included in my Weekly Inspiration post Listen to Podcasts.

 

Everything Happens

The Everything Happens podcast is hosted by Kate Bowler, a woman who is living with Stage IV cancer. Her podcast logo, shown here, tells it all: Everything Happens for a Reason, with the "for a reason" part scratched out. If, like me, you hate when people quote that to you, you will love Kate. Here is part of her introduction to each podcast:

"Look, the world loves us when we are good, better, best. But this is a podcast for when you want to stop feeling guilty that you're not living your best life now. ... Life is a chronic condition. The self-help and wellness industry will try to tell you that you can always fix your life. ... But I am here to look into your gorgeous eyes and say, 'Hey, there are some things you can fix and some thing you can't, and it's OK that life isn't always better. We can find beauty and meaning and truth, but there's no cure to being human. So, let's be friends on that journey. Let's be human together.' "

Awesome right? It's like she's talking directly to us, and she gets it! Her episodes are easily consumed in one sitting, usually 30-40 minutes, and each one features an interview with someone on a topic that fits with her podcast's vision and message (above). Recent episodes I enjoyed include Bishop Michael Curry (who married Harry and Meagan) on  and The Power of Ordinary Love and Mary Pipher on The Art of Aging. Her guests aren't always quite that famous, but so far I have enjoyed and been inspired by every episode I've listened to. I've subscribed and look forward to hearing more episodes (both new and from her backlog).

 

 

Feel Better, Live More.

The Feel Better, Live More podcast is hosted by Dr. Rangan Chatterjee, who I guess is famous! I first heard him on the Happier podcast just recently, but apparently, he is a huge celebrity, especially in the UK and Europe. He's been a medical doctor for 20+ years and has written four books. He focuses on a new approach to medicine, lifestyle medicine, looking at the whole picture instead of at each part of the body or each disease separately. I think this is something all of us with ME/CFS, tick infections, and other related illnesses can get behind, since our diseases affect every part of our bodies, and most doctors only look at one thing at a time. Each episode features an interview with an expert on various topics, like healthy eating, keeping your immune system healthy, meditation, pain, and relationships. His interviews tend to be long, an hour or more, but the few that I have listened to so far have been interesting and inspiring.

What are your favorite inspiring podcasts? Which ones help to lift you up when you are feeling down or going through a rough period? Share your ideas and thoughts in the comments.

The October Slide: ME/CFS and Infectious Triggers

Some with ME/CFS call it The October Slide. Others refer to it as a seasonal downturn. Many patients don't call it anything but wonder why on earth they feel so awful during fall and winter. My son and I used to experience this, too, every year, spending endless weeks--or months--with both of us crashed and unable to get up off the couches and recliners. Although this is now rare for us, I re-experienced this phenomenon this past week, when I abruptly went into a severe relapse that kept me home and lying down for a week (I'm not back to my normal baseline yet but am starting to feel better).

The good news is that there are medical, scientific reasons for this annual fall/winter downturn, and it can be treated and eliminated. As I said, my son and I used to spend much of each fall and winter badly crashed, and it is now a rare occurrence. We also used to both get bacterial bronchitis 4-5 times a year (often in fall and winter) that knocked us out completely and required antibiotics (sometimes multiple rounds). These days, we may each get bronchitis once every two years or so, and we usually catch it early, treat it, and only spend a few days crashed from it. You can say good-bye to the October Slide and the fall/winter crashes, too. Here's how:

What's Going On

ME/CFS is, at its heart, an immune disorder. It doesn't fall neatly into the categories of immune-deficient or autoimmune, though, as most immune disorders do. Instead, we have characteristics of each, with parts of our immune systems over-reactive and other parts under-active. This blog post, Immune System Abnormalities in ME/CFS, explains in simple terms what's going on behind the scenes that contributes directly to our seasonal downturn.

The common worsening and frequent crashes most of us experience in fall and winter are mainly due to exposure to infectious agents. While, as explained in the post linked above, our immune dysfunction means that we rarely "catch" colds, flus, and other viruses, just being exposed to them can cause our already-overactive immune system to go further into overdrive. The crash symptoms we experience in fall and winter are usually symptoms of our immune systems getting seriously over-stimulated: things like flu-like aches, sore throat, swollen glands, worse fatigue/exhaustion/lack of energy, and sometimes a fever or feeling feverish even with a normal temperature. Alternatively, when someone catches a cold or flu, they will get the classic symptoms of it, which might include severe congestion, cough, high fever, etc. In the example of my bad crash this past week, which was almost definitely from exposure to some infectious agent, for a couple of days I had a bit of a runny nose, a tiny bit of mucus in my chest in the morning (again, I am prone to bronchitis), and maybe a very mild fever on a couple of days. But my main symptoms have been severe head-to-toe achiness, complete lack of energy and extreme exhaustion, and a mild sore throat--all signs of immune activation.

What was I exposed to last week? I have no idea! Both of my sons were out of town and returned last Sunday, so they had certainly been exposed to stuff. I was in the grocery store the week before (with a mask, of course). That's the point about this time of year: there are more colds, flus, and other infections floating around, with more people indoors where the germs are easier to get exposed to. I'm guessing it was a simple cold germ since flu season isn't really here yet, though of course in 2020, we are all concerned about coronavirus, too. There are dozens of viruses floating around in the air at any time.

 

What Can You Do?

There are two important steps to stop this annual seasonal downturn: 

1. Improve Your Immune Function
2. Treat When you've Been Exposed to an Infectious Agent

Improving immune function in ME/CFS is tricky because it's a mixed bag, so the treatments used for immune deficiency or for autoimmune diseases won't work for us. Instead, we need to focus on what's known as immune modulators, which will help to normalize the immune system (rather than boosting it or suppressing it). We have found three treatments which help to do this: low-dose naltrexone, inosine, and glutathione. These are all inexpensive, and the last two don't even require a doctor (though it's always good to discuss any new treatments with your doctor(s)).

This blog post, Treating Immune System Dysfunction in ME/CFS, covers all three of those treatments and provides more detail on the immune dysfunction that is common in ME/CFS.

Using those three treatments put a stop to the annual fall/winter crashes for both my son and I and to our frequent bouts of bronchitis (which occur because our immune systems under-react to bacterial infections). We both no longer experience a seasonal downturn nor the severe and long-lasting crashes that come from exposure to infectious agents in fall and winter. 

But, of course, I did crash from a likely infectious trigger last week, so it can still happen on rare occasions; we just don't spend all winter battling it anymore. And when it does happen, it only takes a day or so for me to recognize that I was probably exposed to some infection (because of the severity of the crash; with these and other treatments, I no longer crash badly from over-exertion). When that happens, I listen to my body and rest as much as I need to (I have been pretty much couch-bound the past week), but I also increase my dose of herbal antivirals/antibacterials. 

My son and I both take a range of herbal antivirals/antibacterials/antifiungals every day in our daily meds boxes, including Emulsified Oil of Oregano (ADP), Olive Leaf Extract, Grapefruit Seed Extract (mainly antifungal), and Monolaurin (links are to the ones we use that are high quality and high potency). But on weeks like this, when I've been exposed to something that's made me crash (or if I know someone near me has a cold, flu, etc.), then I add extras. This past week, I more than doubled my dose of Olive Leaf Extract (from two every day to six every day), and I have been making my son and husband take it, too! Yes, these work for healthy people without ME/CFS like my husband, too. After a week, my mild viral symptoms are long gone, I am starting to feel better, my husband hasn't caught anything, and my son hasn't crashed.

All of this is further explained in the post, Treating Virally-Induced Crashes in ME/CFS. 

 

You do NOT have to accept and live with the annual worsening and extra crashes every fall and winter! These treatments will not only help to prevent that seasonal slide but will also help to improve all of your ME/CFS symptoms, including exercise intolerance. Since immune dysfunction is at the heart of our disease, improving and normalizing your immune system will help to make everything better. It's not a cure--that doesn't exist yet--but these are improvements that can vastly improve your ability to function and your quality of life.

Have a wonderful fall and winter!

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Movie Monday: The Vast of Night

After a long sick week for me, I was in the mood for a movie last night, so my husband and I watched The Vast of Night, a new original movie from Amazon. This 1950's style sci fi drama is original, suspenseful, and a lot of fun.

The film has a very Twilight Zone feel to it.  In fact, the entire movie is framed as if it were an episode of a black-and-white TV show called Paradox Theater, which is clearly a send-up of the classic twisty show. Then, the audience is brought into the show (and the scene turns to real-life color), and the story unfolds in the small town of Cayuga, New Mexico. Sixteen-year-old Fay, played by Sierra McCormick, is a cute 50's teen in cat's eye glasses, a full skirt, and saddle shoes who talks a mile a minute. She's excited to show Everett, a slightly older guy played by Jake Horowitz, her brand-new tape recorder that she bought based on his advice. As they walk from the high school, where the rest of the town is gathering for a basketball game, Everett, who works as a DJ at the radio station, shows Fay how to use the device by encouraging her to talk about the science articles she's read recently. Then, Fay goes to work as the town's evening switchboard operator, and Everett heads to the tiny radio station to broadcast his nightly show. Fay starts to notice some odd happenings: the radio show cutting out, phone calls getting dropped for no reason, and an odd noise she's never heard before on one line. She calls Everett, who shares her love of science, and plays the strange sound for him. Fay runs over to the radio station (she does a lot of running in this movie!) and together, the two of them catch the strange sound on Everett's recording equipment, play it on air, take a call from a mysterious caller named Billy, and rush to visit an elderly woman named Mabel. Both Billy and Mabel tell strange stories about this noise, which they've both heard before, and Fay and Everett run around the empty town, trying to solve the mystery.

This movie is so much fun! Any Twilight Zone fan (like me) will feel right at home, and the story is filled with tension and suspense. It's not super fast-paced at first, but it feels just right for the 50's setting. The two main actors (who are on-screen most of the time) are both excellent in their roles, completely inhabiting their young, curious characters. A lot has been said by professional film critics about the production values of this movie and the unique ways in which it was shot. I'm no expert, so I can't comment on that, but as a viewer, I was fully immersed in the story and very much enjoyed it. And did I mention it's funny, too? To top it off, the ending felt perfect to me.

The Vast of Night is an Amazon original movie, so it is available exclusively on Amazon Prime.

TV Tuesday: High Fidelity

My "alone time" for TV watching is pretty minimal these days, with a full house, but I like to find a good half-hour show that I can squeeze into my rare solitude for a little downtime! My latest pick was High Fidelity, a Hulu show based on the 2000 movie starring John Cusack (and on the original Nick Hornsby novel), with a modern twist.

In a gender switch, Zoe Kravitz (daughter of musician Lenny Kravitza and actress Lisa Bonet) stars as Rob, the owner of a record store who loves to make Top 5 lists. Here, the record store is located in so-cool and of-the-moment Brooklyn. Rob's best friends and record store colleagues are Simon (played by David H. Holmes), a gay, self-conscious guy, and Cherise (played by Da'Vine Joy Randolph), an exuberant, sharp-talking woman who dreams of being the lead singer in a band. As in the movie (and novel), the show is structured around Rob recounting her Top 5 Heartbreaks of All Time, as she tries to figure out why none of her relationships work and why she is still alone in her 30's. Mac, played by Kingsley Ben-Adir, is the handsome British guy who was Rob's latest heartbreak. He's just moved back from London, so the love and the break-up are suddenly front and center for Rob again. Meanwhile, Clyde, played by Jake Lacy, is a new man in Rob's life (sort of). The 10 episodes not only go through Rob's heartbreak list but also delve into the lives of her friends and lovers (past and present). Through it all, music is a constant thread, with great, unusual background music playing in the record store and the Top 5 lists of the three record store employees.

Although this show is centered on heartbreak, it's a whole lot of fun. The music provides a great backdrop to the story, and there is plenty of humor as well. Kravitz and her co-stars do a wonderful job of inhabiting their quirky characters so that you come to care for them and root for them, as they all grow and evolve. Rob is kind of a mess here, but as she works through her past heartbreaks, I wanted her to come out of it healthier and happier. I loved the music and the Top 5 lists and the witty banter among the friends. The writing is excellent! It's a great show for some fun and escape, which was just what I was looking for.

High Fidelity is a Hulu original, so it is available only on Hulu.

 

News From Our House - Oct. 1, 2020 - Taking Time Off

Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.

Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.

Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach

 

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!

 

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!

 

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach

 

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).

What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.

Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.

We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.

 

 

 

How are YOU doing this week?

And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.