My Progress in 2020 and Goals for 2021

It's time for my annual New Year's post, summarizing some of the progress (or lack of!) I made last year and my new objectives and targets for 2021.

As I explained in my Happy (Almost) New Year post last year, I developed my own process for setting lifetime goals and then specific objectives and targets to move me toward those goals each year, then I adjusted that process after I got sick. You can read all the details (with links to more information) in that earlier post. This is a process that anyone can use - the types of goals, objectives, and targets you have will just naturally reflect your own lifestyle and limitations, while helping you take small steps to do the things you want to do, whether that's improving your health or taking better care of yourself or learning a new hobby or staying in touch with family and friends or ... whatever is important to you! For those of us living with chronic illness, it's all about small steps in the right direction, not overwhelming New Year's resolutions.

So, here's my own summary - you can look back at my post My Progress in 2019 and My Goals in 2020 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2020

I have 6 Lifetime Goals that represent what I want my life to look like.

My Lifetime Goals:

1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
6. To give back, help other people, and be part of a community.

SO THAT, I feel happy and content and can spend my time doing things I love.

Each year, I set (or adjust or keep) objectives and then specific, measurable targets to help me move toward those goals. The process is explained here.

I'll skip the details and just share some of what I achieved (or not) in 2020. 

First, A Word on 2020:

Last year was, of course, an unusual year. For me, though, the pandemic was less of a disruption (mostly normal life for me, staying home a lot) than a sudden and still-unexplained downturn in my health starting in March 2020 that I am still struggling with. If you read my progress summary from 2019, you will see that I was doing quite well physically, managing things I hadn't been able to do in many years, with an almost-elimination of post-exertional crashes (due to a wide range of effective treatments found over the years). With this worsening in 2020, I lost much of that progress (temporarily!) with much-reduced stamina and a return of crashes due to mild exertion and far more bad days than good. At this point today, I'm quite sure a flare-up of my Lyme disease was partly at fault and likely some other sort of infectious trigger, too. I am working with my doctors to better treat my Lyme and to uncover the other infectious culprits.

What I Improved on or Did Well in 2020:

• Successful Book Launch: My biggest accomplishment of 2020 was publishing my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in early February, on a broad range of e-book platforms and with the print book sold on Amazon. 
• Successful Child Launch: Both of our sons moved out on their own in the second half of 2020. Our youngest graduated from college, started a new job, and moved into his own apartment locally. Our oldest, the one with severe health problems, is not yet completely independent, but he moved out of state and took a big step forward, which seemed impossible a year before. Both are happy and well-adjusted adults.
  
• In 2019, I noted that I spent lots of time with my husband, meeting my goals for date nights, walks*, and traveling together. ha ha - I had no idea what was coming! My husband hasn't been to his office since March 2020, and we have been together 24/7 since then. While there has been some friction here and there, I did surpass my goals for time spent together with him and enjoyed most of it! We also got to spend a lot of time with both of our sons.
  
• Updated our will (a biggie we'd procrastinated for years, considering our younger son was still identified as "baby #2" in the old documents).
• Learned some new things about book publishing and promotion that seemed horribly complex to me at first.
• Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck), which was a big lift for my spirits on all those sick days.
  
• Daily yoga (brief 15 min session, all done on the floor) to help prevent injuries and ease aches.
  
• Helped my 95-year-old father-in-law stay connected (a big challenge last year) with outdoor visits, phone calls, and introducing him to Facetime.
  

Needs Improvement:

• Stay connected to my family and friends.
• Freelance writing (which took a backseat to my book the past two years).
• Create e-mail lists for my blogs.
• Stay off social media in the morning and improve productivity (last year was a bit of a black hole!)
  
• Decluttering and improving our home.
• Getting to the bottom of the 2020 worsening and trying new treatments to get back to where I was.
• Resume travel and camping, as able (we are limited both by the pandemic and also my FIL's needs).
• Get back to regular walking * and light weights * as my condition improves and my stamina returns (already seeing signs of that with new Lyme treatments).
  
• Resting when crashed - a continuing struggle for me, to listen to my body.
• Have more fun! Another one that pops up every year. I need to take more time off and probably reduce my load.

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again. 

 

 

My Health in 2020
I am a data junkie, and find it very helpful to track several different aspects of my illness. This helps me to see if I am doing better or worse and also helps me to evaluate whether new treatments are helping. So, in 2020, the data clearly shows that downturn I experienced:

• My average exertion level (on a 1 to 5 scale) was 3.5, down 7% from 2019 (which was my most active year since getting sick in 2002).  This was due entirely to that downturn in my condition in March.
  
• Overall, my "how I felt" average was 2.6 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is again down 7% from the previous year.
  
• I was crashed (a 4 or a 5 on my scale) 17% of the time. This was a 12% downturn from the previous year and shows more clearly how much worse I was. In 2019, I was only crashed 5% of the time, my best year ever. 2020 was my worst year since 2009 (before I started many of the treatments that helped me to improve so much). Add to this the fact that I had a lot of days last year when I was a "3" - not severely crashed but super-achy and run-down and quite limited in what I could do.
  

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar (see photo above) at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

Objectives and Targets for 2020
With my process, my Lifetime Goals mostly stay the same, but my specific objectives and targets may change from year to year (or even month to month).

Many of my objectives and targets do stay the same from year to year, like date nights with my husband (mostly in the house now!), time with my friends, resting when my symptoms flare, etc. My writing objectives for 2021 are quite thorough (a new approach for me), but I won't bore you with all those details. I did get some new inspiration from the book Make Time, which is not about doing more (not all that helpful when you have limited time and energy) but about focusing on the important things. One thing I started years ago was using colored index cards (see the photo at the top of the post) to list a few priorities for each day, to help me stay focused. It forces me to start the day by evaluating what's important, and I can carry the card around with me during the day.

Here, I will just highlight the objectives and targets for 2020 under my Health goal:

1. Try New Treatments & Investigate Downturn - while trying new treatments is an objective every year, this year I am focused on figuring out what made me so much worse last year and getting back to where I was. I've already taken a big step in that direction by seeing my son's Lyme specialist, starting some new treatments for that, and getting dozens and dozens of tests done to look for other infectious culprits behind the scenes.

2. Improve Stamina and Become More Active - (contingent on #1, above, to improve my condition and thus my exercise tolerance). And, only possible because I first treated exercise intolerance.

• Walk at least 4 times a week (some of my "walks" currently are just a slow 10 minutes around our cul-de-sac)
• Increase walk time, as able.
• Continue yoga floor routine, 10-15 minutes per day.
• Try 30-minute yoga once a month (as able - I managed it before I got worse last year).
• Muscle-building, 3x per week, as able (on floor to reduce heart rate) - will have to slowly get back into that routine, as my exercise tolerance improves again.
  

3. Reduce Stress, Improve Rest, and Take Care of Myself -

• Rest when symptoms flare (3 or higher on my scale)
• Do 2 quiet things just for myself each week (no multi-tasking!)
• No computer after 7 pm
• Do 2 fun things each week that are not TV
• Take one "day off" each month

We are each at very different places in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. Focusing on baby steps in the right direction helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!). Each week, I track how I did versus my objectives and re-adjust for the coming week. And, of course, Listening to My Body is always Objective #1!

Have you set any goals or objectives for yourself for 2021? How was 2020 for you? Please share in the comments below! 

Here's to a happy & healthy 2021 for us all, no matter how you approach it!

Weekly Inspiration: Winter Boosts

It's that time of year again - the cold, dark days of winter (at least for those us us in the northern hemisphere). Short days, less sunshine, fewer times when we can get outdoors (especially for those who can't exercise), and even more isolation. In addition, many people with ME/CFS experience a downturn physically in the winter months (here's one reason why and how to prevent/treat that). 

Taken all together, that can make for some rough days when you are chronically ill. Below, I have collected some great advice from other bloggers (plus a bit from myself) on accepting where you are, finding joy in small moments, coping, and lifting your spirits.

 

From My Book

While all of my book, Finding a New Normal: Living Your Best Life with Chronic Illness, is about emotional coping and improving your life, a couple of the chapters feel extra-relevant this time of year when you're feeling down or gloomy. Here, I will link to those, where I previously reprinted them on the blog.

My chapter, You're Right Where You Need to Be, was inspired by a friend's wonderful memoir. It's all about accepting where you are right now, switching from fighting the situation to giving in (but not giving up), and feeling more at peace with yourself and your current situation. You can read my previous blog post about it and the full text of the chapter at that link.

Once you have accepted where you are now, you can focus your attention on Finding Joy in Every Day. This means living in the present, being grateful, and finding small moments of joy in every day. This change of attitude can make a huge difference in how you feel about your illness, your current situation, and your life.

 

Banishing the Winter Blues

Pippa from The Life of Pippa blog wrote a wonderful post recently on Banishing the Winter Blues: Chronic Illness-Friendly Recommendations. She talks about how typical advice heard in the mainstream media and on social media at this time of year just doesn't work for us, and then she offers three great tips for helping yourself through the winter months.

 

7 Reminders for Those Bad Days to Keep You Going

One of my favorite chronic illness blogs is from Sheryl at A Chronic Voice. Her latest blog post is warm and supportive, like wrapping up in a super-soft, warm blanket. Her 7 Reminders for Those Bad Days to Keep You Going are all kind, gentle lessons that we probably learned at some point but need to be reminded of. Read it now, and bookmark it for the next time you are feeling crummy and having an especially rough day.

 

Loving "Moments" of my Chronic Illness Life

Sam of My Medical Musings blog has a thoughtful post about living her life in moments, that add up to days, weeks, and months. She explains why she feels content with her life, in spite of multiple serious medical conditions and disability. As in my own essay about finding joy in every day, she writes about living in the present and enjoying small moments, even on the worst days.

 

Stressed Out? Can We Manage and Overcome It?

Carole of Navigating the Storms has a helpful new post up, Stressed Out? Can We Manage and Overcome It? Here, she offers some great tips for dealing with stress, whatever its cause, which can be even more challenging for those of us with chronic illness.

 

So, there you have it - a collection of inspiration and wisdom from some of my favorite bloggers. You can enjoy the posts I linked to and also maybe find a new blog or two to follow (in addition to this one, of course!)

How about you? How do YOU deal with the winter doldrums? Please share your own tips and advice in the comments.

TV Tuesday: Home Before Dark

When I finally joined the 21st century and got a smartphone last summer, an iPhone, a free year of Apple TV came with it. I had wanted to see The Morning Show, the Jennifer Aniston/Reese Witherspoon drama (review of that one later), so I accepted the offer. Now, we are exploring additional offerings on Apple TV before our free year runs out. Our favorite so far is Home Before Dark, a classic murder mystery/suspense show ... except that the "detective" is a 9-year-old girl.

Hilde Lisko, played by Brooklynn Prince, isn't too happy about her family's recent move from urban Brooklyn to a small town in Washington state where her Dad grew up. Her father, Matt, played by Jim Sturgess, isn't too happy about it, either, but there are hints that he lost his journalism job over some sort of scandal. He and his wife, Bridget (played by Abby Miller), and their three daughters try to adjust to small town life while getting reacquainted with Matt's dad, played by Reed Birney, who has dementia. Oddly, no one in Matt's home town seems particularly glad to see him again. Hilde wants to be a journalist just like her dad and wrote her own newspaper back in Brooklyn, so she starts up again here in remote Washington. After an unexpected death soon after they arrive, Hilde quickly finds out why her dad is not being welcomed back. Decades earlier, her father's best friend, Richie, was kidnapped and never found. Police arrested a young Native American man named Sam, played by Michael Greyeyes, and convicted him, but Matt--just a child about Hilde's age--testified at the trial that he was not the man in the van who took Richie. Now, Matt is back, with his determined young daughter, this latest death has a link to those old events, and the cold case is again dividing the town. Hilde and her friends bike, scooter, and walk all over town to try to solve both the recent death and the decades-old case, despite pushback from the police who insist the right man is in prison.

This show has all the features of any good mystery/suspense/thriller show with a murder at its center, but the young girl leading the investigation makes it something special. You might think that a little girl investigator would be too cutesy, but young Brooklyn Prince does an outstanding job in the role, with a fierce determination for justice that would put most adult detectives to shame. The story is actually based in truth, on real-life 9-year-old journalist Hilde Lysiak who really did solve a murder in her town. So, it's not as far-fetched as you might think. The other children and the adult actors are also excellent in their roles, as you struggle to figure out who are the good guys and who are the bad guys. The mystery itself is complex and twisty, with plenty of unexpected reveals and red herrings. Best of all, the show has emotional depth and a sense of humor, which we always appreciate, especially in a show that might otherwise be too dark. My husband and I both enjoyed this show very much. We usually juggle 6-8 shows at once, but we kept coming back to this one and were sorry when it ended. Luckily, season one ended with an unexpected twist, so we can't wait for season two!

Home Before Dark is an Apple TV show, so it is available exclusively on that streaming service (which is free for one year for anyone who buys an Apple device).

 

Movie Monday: The Peanut Butter Falcon

In order for me to stay up until midnight on New Year's Eve, I need plenty of diversion, so we watched two movies that night. Though they were both good, one of them, The Peanut Butter Falcon, left us with huge grins on our faces. It would have definitely made my Best of 2020 list, if I had been able to review it sooner, so I guess it will be my first favorite of 2021!

Zak, played by Zack Gottsagen, is a 23-year-old man with Down's Syndrome who is living in a nursing home with the elderly and infirm. It is definitely not where Zak belongs, but he has no family, and this is where he ended up. So, his elderly roommate is more than happy to help him break out one night, greased up to slide through the bars on the window. Now dressed in nothing but his underwear, Zak takes off running. He soon encounters Tyler, played by Shia LeBeouf, who is also on the run for entirely different reasons and has been struggling emotionally since the loss of his brother. The two of them end up teaming up and heading south, through the marshes of the North Carolina coast on land and sea, to follow Zak's dream of becoming a professional wrestler. They are heading to meet the Salt Water Redneck, played by Thomas Haden Church, who is Zak's idol from the very old VHS tapes he has watched hundreds of times. Meanwhile, back at the nursing home, a supervisor named Eleanor, played by Dakota Johnson, is being held responsible for Zak's escape and is sent out to find him. She does catch up with Zak and Tyler, but convincing Zak to return to the quiet home after his exciting life on the road is not going to be easy.

We both loved this original, heartwarming movie about friendship, family, and healing. It's an outstanding cast, including Zachary Gottsagen in his first movie role, and the writing is excellent. We were frequently laughing out loud while watching their carefree, full-of-life journey, but there was also suspense to keep us on our toes. Mostly, though, this film is full of heart, examining the depth of love and what it means to be family. It will leave you with happy tears in your eyes and a huge smile on your face!

Released in 2019 by Roadside Attractions, The Peanut Butter Falcon is currently available on Hulu and on Amazon Prime.

I guarantee this trailer will make you smile!

 

Favorite TV Shows of 2020

It's time for my annual TV wrap-up. 2020 was an unusual year for TV for us, since we usually watch mostly cable shows, but so many of those were interrupted by the pandemic. That led us to explore streaming services more.

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2020. TV shows here include those on network TV, cable, and On Demand, as well as on the major streaming services (and many shows are available on network websites, too). I have also added all of these to my TV Reviews tab on the blog, so you can come back anytime to see ALL of the shows I have ever reviewed here. 

I only review shows I enjoy, so anything listed here or on the TV Reviews tab is worth trying!

Best of TV
First a few superlatives - my favorite shows reviewed last year in each category/genre - always tough choices to make because TV shows are just getting better and better (and more and more!). Some of these I almost made two-way or three-way ties, but I stuck to the rules. Remember that we enjoyed all of the shows reviewed - see the full list at the bottom of the post. Links are to my reviews, including trailers and details on where to find each show.

 Best Comedy
The Good Place (A, C, N, P)

We finally tried it ... and everyone was right!

 

Best Drama

The Queen's Gambit (N)  

My husband's vote is Yellowstone (A, C, P, Paramount) - a close second for me - though he loved Queen's Gambit also.

 

Best Dramedy

 Atypical (N)

Outstanding in every way - can't wait for season 4 in 2021!

 

Crime/Mystery/Thriller/Legal/Action

 Lie to Me (A, IMdB)

(a tough call - lots of good shows - but we like the mysteries plus humor)

 

Best Sci Fi

Russian Doll (N)  

(don't be put off by the sci fi label - hilarious Groundhog Day-like show!)

All TV Shows Reviewed in 2020

So much good TV last year, though it's depressing how many great new shows we enjoyed have already been cancelled! That's the flip side of having so many choices.

KEY: Available on:

A = Amazon Prime

C = Cable and/or Cable On Demand

CBS = CBS All Access

H = Hulu

IMdB

N = Netflix

P = Peacock
S = Showtime

(Offerings from subscription services change all the time, so double-check. Also, some shows are available for an additional fee on Amazon Prime whether you subscribe or not. Most networks offer some episodes of every show for free at their own websites. Click the links below for my review and details on where it is available.)

Comedy

The Good Place (A, C, N, P)

Miracle Workers: Dark Ages (A, C)

 

Drama

All Rise (A, C, CBS)

The Good Fight (A, CBS)

The Queen's Gambit (N)

Quiz (A, C, AMC)

Yellowstone (A, C, P, Paramount)

 

Dramedy (both drama and comedy combined)

Atypical (N)

Dash and Lily (N)

Sex Education (N)

Zoe's Extraordinary Playlist (A, C,  H, P)

 

Crime/Mystery/Thriller/Legal/Action

Better Call Saul (C, N, AMC)

Dublin Murders (A, H, Starz)

Lie to Me (A, IMdB)

Lincoln Rhyme: Hunt for the Bone Collector (cancelled but hoping NBC will put it on Peacock)

The Stranger (N)

 

Sci Fi

Russian Doll (N)

Snowpiercer (A, C, TNT)

Star Trek: Picard (CBS)

Favorite Movies Watched in 2020

Notice my title photo for my 2020 movie wrap-up features a television screen instead of a theater screen? Yeah, it was that kind of a year. We watched exactly one movie in a theater before everything shut down, so the rest of our movies were watched on the small screen, at home, and only a few were new releases. sigh ... just when recliner seats made it possible for me to enjoy movie theaters again!

Nonetheless, it was still a good year for movies at our house! 

We watched only 13 movies last year, down from 16 in 2019 and 22 in 2018, as the TV options continue to expand and improve with so many streaming options in addition to cable. Actually, I see from my notes that we watched 19 movies in 2020, but I only reviewed 13 of them. That's a shame because some of those not reviewed, like The Goldfinch and The Town were quite good. You can see the full list of 2020 movie reviews and genres below, with my favorites marked with *, but I only review movies that I like, so all of the movies listed below are worth watching. I didn't see any documentaries (second year in a row!) or musical drama (I did watch but didn't review Hamilton). It was tough to categorize many of the movies, as more and more, movies are blurring the genre lines: funny mysteries, dramas with plenty of humor, action/comedy/romance, etc.

You can see my full list of movie reviews, covering several years at the Movie Reviews tab.

And now, for my top picks (full reviews at the links):

Best Action/Suspense/Thriller

I See You

Unique and super-twisty

(it's a weird movie poster so don't judge it by that)

 

Best Drama

 The Rainmaker

Great courtroom drama with all-star cast based on Grisham novel

Best Comedy & Best Movie of the Year

 Hunt for the Wilderpeople

Warm, funny, action-packed adventure set in New Zealand

Best Sci Fi

The Vast of Night

Teens in 50's-era town investigate strange noise

Best Family Movie

The Call of the Wild

Disney remake of classic adventure novel about a man and dog

 

All Movies Reviewed in 2020:
My favorites are marked with *, but I only review movies I enjoy, so all of these are worth a try: 

Action/Suspense/Thriller

* I See You

The Lovebirds

Rebecca 

* Serenity

* Transsiberian

* We Own the Night

 

Drama

* The Rainmaker

 

Comedy

* Enola Holmes

* Happiest Season

Holidate

* Hunt for the Wilderpeople

 

Sci Fi

* The Vast of Night

 

Family & Animated 

The Call of the Wild

 

Top 10 Live with ME/CFS Blog Posts of 2020

To celebrate the new year, I took a look back at my 10 most popular posts on the blog last year. These are the posts that got the most visits in 2020:

1. Coronavirus and ME/CFS - Without a doubt (as you'll see from the rest of the list), COVID-19 was at the top of everyone's list this year, and it seems that people with ME/CFS were eager for information about the virus itself and how it might affect us. This post explains all about the immune dysfunction of ME/CFS, how COVID-19 might affect us, with links to more information.
2. The October Slide: ME/CFS and Infectious Triggers - While relevant to COVID-19, this post focused on the annual downturn that many people with ME/CFS experience every fall and winter, explaining why it usually happens, how you can prevent these seasonal crashes, and how to treat them when they do occur.
3. Info and Resources on COVID-19 and ME/CFS - By this time, in April, information had begun pouring out in articles, videos, blog posts, and more from ME/CFS experts, doctors, and patients. This post included much of that information.
   
4.  My Update: Crashes, Infections, and Treatments ... Oh, My! - I don't know whether it had anything to do with the pandemic (the timing is suspicious), but I started an unexplained downturn in mid-March that still continues (with some improvements) today. In this post, I describe what I was experiencing, the tests and investigations to help me figure out what caused my sudden worsening, and the treatments that helped me to improve somewhat, though I am still not back to my "normal" baseline and my investigations continue.
5. Weekly Inspiration: Lift Up Your Spirits - Clearly, others were having as bad a year as I was and were looking for inspiration and joy because this Weekly Inspiration post got a lot of visits! It includes inspiration specific to chronic illness, silly videos to make you laugh, and some of my comfort TV recommendations for laughter and smiles.
6. Weekly Inspiration: 5 Ways to Start the New Year Right! - Relevant again now, this post includes my own traditions for starting a new year, plus inspiration from four other bloggers for more joy, happiness, compassion, and more in the new year.
7. Weekly Inspiration: You're Right Where You Need to Be - Seeing a trend here? By April, we all needed some comfort and reassurance (as both the pandemic and my own personal downturn continued). This post was inspired by a wonderful book a friend of mine wrote and a chapter in my own book.
8. COVID-19 Long-Haulers and ME/CFS - By August, what the ME/CFS community expected and feared was coming to pass--somewhere between 10 and 25% of those who got COVID-19 were not recovering and developed a "mysterious condition" featuring debilitating fatigue and an intolerance to exertion. This post collects some of the many news stories about long-haulers that began to reference ME/CFS, and discusses the impact for us existing ME/CFS patients.
9. Interview with Rachel of Chronic Fatigue Sanity Blog - I was pleased to see that Rachel's interview of me hit the Top 10 because is was certainly a highlight of my own year! This interview, where we talk about our own experiences with ME/CFS and my book, was the start of a wonderful friendship. 
10. Weekly Inspiration: Chronically Ill Holiday Gifts and Tips - Though the holiday season is now past, this great collection of gift guides and coping tips from other bloggers is still perfectly relevant for the new year--maybe you could use a new year gift to yourself to start the year off right!

There you go! As you can see, information about COVID-19, emotional coping, and inspiration were the hot topics of the year here. 

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

 

Holidays

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.

 

 

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.

 

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.

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.

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.

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.