Wednesday, December 30, 2020

News From Our House: Dec. 30, 2020 - Holiday Edition

I hope you are enjoying the holiday season, in whatever ways you can! 

As you may have noticed, my own holiday season has been BUSY--that's what's kept me from writing blog posts, other than some quick TV and movie reviews this month! (but those are fun; see below).


My Update

As I reported in my last update, it's been a very rough year for me, with a downturn that started in March. I have battled a reactivated virus (HHV-6) and a recurrence (still) of my Lyme disease. I reported then (at the beginning of December) that I was feeling much better and was finally back to my "normal" baseline, but I don't think I am quite there yet. 

I am still achy much more often than usual (aches and other immune symptoms had become rare for me, thanks to a variety of treatments), and my stamina is still well below where it was at the start of the year. That could be due in part to a loss of fitness in not being able to keep up the exercise routine I've managed for years (very carefully monitored walking and short bits of muscle work while lying on the ground), but I also think PEM is still worse than usual. Since feeling a little bit better this month, I have tried to resume those habits, with some success, but I still crash and have bad days far more frequently than I used to.

Enjoying a walk in the sunshine with my husband


And, of course, I really can't draw any solid conclusions about December because ... it was the Christmas month! Despite my annual good intentions to start early and keep things simple, I still ended up with a solid three weeks' (at least) of packed-full, stressful holiday preparations. 

Since we couldn't see any extended family this year, I decided to make photo books for three branches of my family. The first two weren't too bad, since I already had digital photos for those, but the third one--for my 95-year-old father-in-law--required a solid week's worth of exhausting effort. I sorted and organized thousands of loose snapshots stuffed into an old suitcase we'd brought from his house in Oklahoma when we moved him out here. From those, I picked a couple hundred to scan (another full day, hunched over the scanner and laptop), and then finally put the book together. I am glad I did it, and he's really enjoying it (and I'm hoping it will help a bit with his memory, too), but the three projects really took a lot out of me. Then, of course, there was all the rest of the holiday preparation: shopping, wrapping, cooking, decorating, cleaning (some of that just didn't get done!).

Christmas morning!

So, as usual, I was pretty exhausted by Christmas Day. It was just the four of us this year, which helped, but our older son didn't get home until about 2 pm, and we had the added pressure of trying to schedule Zooms and Facetimes and phone calls! That's where I finally hit the wall. My mother and I had been texting back and forth all day and were going to Zoom right after dinner. She and her husband ended up having multiple Zoom calls with his family and pushing back our time again and again, until at 9 pm, she said they were ready! Even on an ordinary day, I am flat on the couch by 7 pm, and on this busy day in a busy week in a busy month, I had completely crashed by dinnertime. I was on the couch, wracked with horrible aches, and ready to try to get upstairs for bed. I texted my mom that it was too late, I was very sick, and could we do it tomorrow? I've had ME/CFS for almost 19 years now, so she should be used to this, right? No, she lives in a world of denial and avoidance. She texted back "It's only 9 pm! You can sleep in tomorrow." As if I was a healthy person and that was even the issue. That lack of understanding (again) pushed me over the edge. I burst into tears, told my sons to call their grandparents, crawled up the stairs to bed, and lay on my bathroom floor sobbing--just overwhelmed with exhaustion, pain, and grief.

I was, of course, badly crashed the next day, but I could just lay on the couch, enjoy my sons' company, and recuperate. Lots of leftovers! And I felt a lot better by that evening and the next day. So, looking back over December, I think probably a lot of my issues stemmed from not listening to my body, pushing myself too hard, and not resting enough ... though I still don't know why I've been worse than usual all year. 

So, lesson learned (for the thousandth time): Listen To Your Body!


What We've Been Watching and Reading

A Bookish Christmas!

As usual, we have all been reading all month. I read every day, before my nap and before bed at night with my husband. And we all gave and received lots of books on Christmas! You can check out each of our stacks of new books on my book blog--this photo is just my husband's pile. And in my Monday post on the book blog, you can see what we are currently reading.

At the start of the month, my husband and I finished watching The Queen's Gambit on Netflix, which was outstanding, just like everyone said! I really did not think I'd enjoy a TV show about chess, but I gave in to all the rave reviews from my friends, and we were so glad we did! It's a stunning story (based on a novel) of an orphaned girl who becomes one of the top chess players in the world. Much of it is set in the 1960's, so the settings, hairstyles, and--especially--the fashions are a visual treat. You can read my full review (no spoilers) at the link and watch the trailer there, too.

On one of my crash days this month, I did something I rarely do and watched a holiday movie. I'm not really a fan of the Hallmark/Lifetime type movies, but Holidate on Netflix had plenty of snark and turned out to be the perfect choice for me that day. It's a light, fun rom-com not only about Christmas and New Year's Eve but about all of the holidays all year when a couple of singles decide to be each other's "holidate" to take the pressure off. Very funny, warm, and lots of fun. Again, my full review and the trailer at the link.

My husband and I watched another holiday movie the weekend before Christmas, Happiest Season (on Hulu). I'd heard so much about this movie (including from one of my favorite podcasts, Pop Culture Happy Hour). It's a rom-com that's not quite typical, about a lesbian couple. One girlfriend brings the other home for Christmas to meet her family, without disclosing that her family doesn't know she's gay! As you can imagine, hijinks and hilarity ensue. The best thing about this movie is its all-star cast; even the supporting actors are excellent in their roles.

While sorting through all those photos in December, I was looking for a light, fun show to watch that wouldn't require all of my attention. In the holiday spirit, I chose Dash and Lily, a holiday rom-com that takes place in New York City. Two teens "meet" each other through a scavenger hunt type thing that the girl, Lily, sets up. They don't know each other in person but communicate through the journal they trade back and forth at various New York spots. Of course, Lily loves Christmas, and Dash is a Scrooge, but that's all part of the fun. It fit the bill: light, warmhearted, and funny.


How are YOU doing this season?
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.



Monday, December 28, 2020

Movie Monday: Happiest Season

In the holiday spirit last weekend, my husband and I watched Happiest Season, a different kind of holiday rom-com with an all-star cast that we enjoyed.

Abby, played by Kristen Stewart, hasn't enjoyed Christmas since she lost her parents years ago, but her girlfriend, Harper (played by Mackenzie Davis who we've been enjoying as Cameron on Halt and Catch Fire), loves the holiday. In an inspired moment of holiday spirit, she invites Abby to come home with her for Christmas to meet her family and enjoy a festive holiday. There's just one problem: she neglects to tell Abby that her parents don't know she's gay. Normally a happy couple living together, Abby and Harper must now pretend they are just roommates, though Harper promises to come out to her parents after the holiday. It turns out that Harper's parents are ultra-conservative, "family values" types who are hyper-concerned with appearances now that Harper's dad, Ted (played by Victor Garber), is running for local office, with his ambitions set even higher. Harper's mom, Tipper (played beautifully by Mary Steenburgen), is busy rushing around trying to make sure everything is perfect, with every perfect moment captured on her husband's Instagram account, including their big annual Christmas Eve party. What could go wrong? Add to the mix two sisters, played by Alison Brie and Mary Holland, competing for dad's attention; Harper's old (secret) high school girlfriend, played by Delaware native--our hometown heroine--Aubrey Plaza; and Abby's friend, John (played by Dan Levy as a gay man pretending to be Abby's boyfriend), and chaos and hilarity ensue.

We enjoyed this different spin on a holiday rom-com. It's heartwarming and engaging, with plenty of laughs along the way. The cast is outstanding, and it's nice to see multiple gay characters living their lives on-screen instead of just one gay friend on the sidelines. As you might expect from the set-up, plenty of hijinks occur, as all the secrets and lies are eventually exposed, but the movie has just the right mix of warmth and humor. It's a fun and unique addition to the slew of holiday movies available each year and made for an enjoyable evening.

Happiest Season is a Hulu original, so it is available exclusively on Hulu.


Tuesday, December 15, 2020

TV Tuesday: Dash and Lily

Are you in need of some holiday spirit? Perhaps some light fun to make your season merry and bright? I was last week, and I wanted a light TV show to watch while I sorted through thousands of old photos spread all over our family room floor! So, I chose Dash and Lily, a unique TV rom-com series on Netflix that takes place over the Christmas/New Year's season and all over New York City. It was fun and sweet and just what I needed!

One day, a young man named Dash, played by Austin Abrams, is browsing through the shelves at The Strand bookstore when he comes across a red journal tucked in among the books. On the front cover is written "Do You Dare?" Yes, he does. Inside Dash finds clues to a sort of New York-centric, Christmas-themed scavenger hunt, written by a mysterious girl who says he needs to earn the right to get to know her. The notebook was planted there by Lily, an exuberant and quirky young woman played by Midori Francis. Without knowing each other, Dash and Lily trade the notebook back and forth, leaving it in various places for the other to find, with clues and dares to each other that take them all over the city and discovering new places, people, and things. The catch? They seem seriously mismatched. Dash is a bit of a cynic who hates Christmas, while Lily embraces it with her full enthusiastic, spirited being. They are each assisted and encouraged by Dash's best friend, Boomer (played by Dante Brown), and Lily's older brother, Langston (played by Troy Iwata).

This 8-episode show is just pure seasonal fun! Filled with eccentricities, bold dares, and lots of only-in-New-York people, events, and places, it's a joyous holiday romp. It's not all fun and games, though. Dash and Lily both have some issues and problems to work through (absent families, a distant father, an overbearing grandfather, and a middle-school bully who did some serious emotional damage) that provide a balance of challenges and fun, all wrapped up in warmth and good humor. The visuals are dazzling, and the two main actors are great in their roles, with excellent supporting actors as well. And, of course, there is a happy ending. All in all, it was a very satisfying and entertaining experience.

Dash and Lily is a Netflix original show, so it is available exclusively on Netflix.

Monday, December 14, 2020

Movie Monday: Holidate

Today's movie review is pure fun--no greater purpose or meaning! On a sick day two weeks ago (luckily, becoming rare again), my husband was out golfing, and I decided to treat myself to a silly rom-com. I saw Holidate on Netflix and thought, "Hey, why not a silly rom-com with some seasonal fun?" I don't normally watch typical holiday movies on Lifetime or Hallmark, but this was different, with plenty of laughs and a nice dose of snark. Besides, it's not just about Christmas; it's about ALL the holidays!

Sloane, played by Emma Roberts (niece of Julia Roberts), suffers through another frustrating Christmas with her family. Her younger brother gets engaged that evening, leaving Sloane as the last single person in her family ... and they don't let her forget it! Her sister is happily married, her mother (played by Frances Fisher) keeps trying to set up her with people, and even her young niece has a boyfriend. Her wild Aunt Susan, played by Kristin Chenoweth, is single, but she is known for showing up at family gatherings drunk with a man she barely knows. This year, her Christmas "date" is dressed as Santa, and she just met him at the mall. Susan advises Sloane to do what she does and bring a "holidate" to family holidays, someone she doesn't have a strong connection with, just to get her family off her back. Meanwhile, Jackson, played by Luke Bracey, is having his own Christmas problems. A girl he's only dated a few times brings him home to her parents, and the three of them act like Jackson is already part of the family, giving him expensive gifts, dressing him in a matching ugly sweater, and acting like they're engaged. Sloane and Jackson have both sworn off holidays, when a few days later, they meet by chance at the mall. They trade their respective holiday horror stories, and Sloane tells him of her aunt's strategy. They agree to be each other's holidate for New Year's Eve, and their partnership continues for every holiday throughout the year. As you might have guessed, their agreement to keep it casual eventually begins to falter, especially since Sloane's family really comes to like Jackson.

In some ways, this is a typical rom-com, but it felt fresh and original to me, and it doesn't take itself too seriously. It's a unique premise, with lots of chances for humor that result in plenty of laughs. Jumping from one holiday to the next makes it extra-fun. The two main actors are great to watch with good chemistry, and the supporting actors are excellent, too, with many familiar faces. This was the perfect movie for me at the time, to allow me to just relax and laugh and enjoy a little time to myself. Check out the trailer below and you'll see what I mean!

Holidate is a Netflix original, so it is available exclusively on Netflix.

Tuesday, December 08, 2020

TV Tuesday: The Queen's Gambit

I kept hearing my friends on Facebook rave about the new Netflix show The Queen's Gambit, but I thought that a show about chess would be boring. I finally gave in to the buzz and began watching the TV show, based on a 1983 novel of the same name, with my husband. Everyone was right! We loved this unique, suspenseful, and mesmerizing drama about a young orphan chess prodigy; we were hooked right from the first episode.

In the early 1960's, nine-year-old Beth Harmon, played by Anya Taylor-Joy, walks away from a car accident that kills her mother, the only family she knows. She is sent to an orphanage, a silent and somber old building housing dozens of girls of all ages, dressed in bland unflattering jumpers and blouses with identical haircuts. Beth, still grieving her mother's death and feeling very alone, falls into line with the other girls, eating, sleeping, doing schoolwork, singing hymns, and attending church. Most of the girls don't even talk to her, except for one Black girl named Jolene, played by Moses Ingram, who is always getting into trouble for mouthing off. Beth welcomes the sedatives the orphanage hands out daily to its charges, to "even out your mood." One day, bored, she wanders down to the basement and finds the janitor, Mr. Shaibel (played by Bill Camp), quietly playing both sides in a game of chess on a small table. Beth is immediately entranced by the game, its movements, and its strategies, and she begs Mr. Shaibel to teach her how to play. He's a very good player, but Beth is soon winning games against him and spending all of her spare time in the basement. At night, unable to sleep and half-drugged, she watches the lights and shadows reflected on the ceiling and imagines a giant chess board up there, playing out games in her mind and trying out new approaches. In her teens, Beth is adopted by a well-off suburban couple, the Wheatleys. Beth feels out of place in their beautiful home and discovers that her adoptive father is often away and her adoptive mother, played by Marielle Heller, is distant and drinks a lot. Gradually, though, she and Beth warm up to each other, as Beth begins to compete in chess, launching an early career as a chess champion.

Despite my lack of interest in chess itself, both my husband and I found this entire show fascinating and compelling. It is a coming-of-age story, a family drama, a suspenseful competition saga, and more. At its center is unique, beautiful, brilliant Beth and Anya Taylor-Joy who fully inhabits the captivating character. The supporting actors are all excellent, too, especially those playing Jolene, Beth's adoptive mother, and some of the male chess players Beth gets to know along the way. Far from boring, the show is filled with tension, not only during the chess games--in which Beth is always seen as the underdog (at least at first)--but also with respect to poor Beth's life, her drug abuse, and her loneliness. Plus, once Beth leaves the orphanage and starts winning some money in chess competitions, she becomes obsessed with fashion, and her 60's outfits, hair, and regal bearing are entrancing (I see Beth Harmon costumes on Amazon!). The whole package is an absorbing, gripping, bingeable story and a visual treat. We loved every minute of it, and I'm ready to watch it all over again!

The Queen's Gambit is a Netflix original program, so you can watch its seven episodes exclusively on Netflix. You can also read the novel the show is adapted from.

Thursday, December 03, 2020

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.

Tuesday, December 01, 2020

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:

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!