2022 in Review: My Worst Year in 20 Years of Chronic Illness

I know that title sounds like an exaggeration, but unfortunately, it isn't. When I recently looked back at 2022, I discovered that it was my worst year since I first got ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) in 2002 (and later, Lyme disease in 2007). I had two major relapses last year, one due to COVID and another due to long overdue (unfortunately necessary) medication changes. I have now crawled back up from those low points and have been feeling mostly well the past two weeks, so I'm ready to share what treatments helped ... just in time for a year-end review!

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking small steps forward toward what I want in my life, see my recent video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

2022 in Review

The data:

Average How I Felt = 2.9 (1 is good; 5 is bad)

• The lowest since 2004.
• 14% worse than in 2021. 
• 21% worse than 2019, my last good year, before all these relapses began.
  

Average % crashed = 26% (meaning I was couchbound/bedridden 26% of the time)

• Crashed = a 4 or 5 on my scale, unable to function.
  
• My lowest ever, in 20 years.
• Includes my worst month ever, September 2022 when I was crashed 77% of the time.
• 13% worse than in 2021.
• 21% worse than 2019.
  

Average exertion = 3.5 (on a scale of 1 to 5)

• 6% worse than 2021.
  
• 7% worse than my best year, in 2019, when I was able to do more than in any previous year since getting sick.
• Clearly, I was still doing too much last year as my condition worsened!

 

2022 Timeline: Highs and Lows

I've included some notes into January 2023 so you can see the end of the story and my recovery (hopefully) back to my own "normal."

January 5 - I caught COVID from my father-in-law's nursing home (so did he and my son).

January - I was severely ill, mostly bedridden/couchbound for three weeks and then the COVID symptoms began to clear up, but my ME/CFS remained worse than usual. Overall in January, my average for how I felt was 3.8 (out of 5, where 5 is bad), and I was severely crashed 65% of the time.

February - April - I gradually improved, bit by bit, with the help of treatment changes.

May - July - Mostly at my normal baseline, with how I felt = 2.4 and only crashed an average of 4% of the time.

August - With my OB/GYN retiring at the end of the year, and my age (57), she finally took me off the 90-day birth control pills I had taken for decades to hold my hormone levels steady (for ME/CFS). As we had planned, blood tests showed I was completely through menopause. We both anticipated that the transition off hormones might be rough, but it was much, much worse than either of us expected!

September - my worst month ever, badly crashed (nonfunctional and couchbound/bedridden) 77% of the time.

October - After two months off the birth control pills, I still had daily headaches, very low energy and stamina, and constant flu-like aches (an indication of immune system activation). The hormone shift had affected everything. My OB/GYN started me on low-dose estrogen patches, with a low dose of progesterone every 3 months for two weeks.

November - The headaches immediately cleared up, and my energy slowly returned. The aches hung on, so my ME/CFS specialist tried another dose of steroids for 5 days (which had helped me finally get back to normal in April).

December - Additional testing showed that the hormonal shifts had messed up all of my hormones (and the endocrine (aka hormone) system is closely tied to the immune and nervous systems). My ME/CFS specialist added a very low dose of testosterone and asked me to wait another month for things to stabilize before adjusting my thyroid meds.

January 2023 - With a family funeral to attend in early January (another rough start to the new year), I asked my primary care doctor to look over my latest labs and adjust my thyroid meds. Every single one of the 8 or so thyroid tests had come back low! She added a second thyroid medication. I managed the very long travel days to and from Texas and the funeral. The week that we came back (last week) was the best week I've had in six months!

LAST-MINUTE UPDATE: I've had trouble with the latest brand of estrogen patches my pharmacy sent me; they often fall off within 2-5 days (they're supposed to last 7 days), and I don't always notice right away. When I go without it, I crash badly. One fell off this week and I ran out of testosterone. I slept most of Tuesday and spent most of Wednesday in bed, badly crashed. With a new patch securely applied and back on testosterone, I am feeling better again, though I am still sleeping more than usual and have low energy the past two days. (My son has a cold, so this might also be my reaction to being exposed to a virus.)

What Helped Me

Post-COVID:

See my previous Relapses and Recoveries post for the treatment changes that helped me recover from the post-COVID relapse at the start of the year. There's a long list there of things that helped me.

Endocrine System/Hormones:

The endocrine system produces hormones that regulate everything in the body, including the immune system, the nervous system, heart rate, blood pressure, energy, temperature regulation--everything. When I stopped taking the combination of estrogen and progesterone I'd been on for decades, it threw everything off, not just the things regulated by those two hormones. It was a domino effect that sent me into my worst relapse ever.

So, my doctors helped me with estrogen, progesterone, and testosterone, based on my lab tests, but my thyroid function (which is normally a bit underactive) was also thrown off and needed to be tested and treated. 

Thyroid dysfunction is very common in ME/CFS (again, that domino effect - all systems in the body are connected and affect each other), but it's critical to get the right tests. To be thorough and look at all measures of thyroid function, ask your doctor to test:

• TSH
• Thyroxine (T4)
• T3 Uptake
• Free Thyroxine Index
• Triiodothyronine (T3)
• T4, direct
• Reverse T3, serum
• T3, free

(Note that the first 5 tests listed here are all included in Labcorp's Thyroid Profile II)

Many doctors will only test for one or two of these things, but it's important to get the full panel of thyroid tests. My hypothyroid was missed at first because of not getting all the tests. In my last round of tests in December, ALL of those tests were low, except T3, which was already being treated.

Once we had the results, my doctor worked with me to find the right combination of meds. For me that was 10 mcg liothyronine (which increases T3 only and I'd already been on for two years), with 30 mg Armour Thyroid added last month to bring the rest up. We're still in the experimentation phase; I'll go back for another round of tests in a few weeks to see how this combination is working.

Immune Dysfunction

 

As always with ME/CFS, immune dysfunction was at the heart of both of my relapses last year. The first was triggered by COVID, which led to my immune system staying in over-activated "fight" mode for months. The second relapse was triggered by hormone changes, but those affected the immune system, and I was back to the constant flu-like aches that tell me my immune system is in overdrive (other common symptoms of immune activation include sore throats, swollen glands, and/or feeling feverish, even if you don't have a fever).

Again, refer to my Relapses and Recoveries post from mid-2022 for details on how I treated immune system activation. 

Interestingly, with that relapse at the start of the year, increasing my dose of inosine (an inexpensive immune modulator, sold as a supplement) helped me recover. But this time, with the more severe relapse in the second half of the year, it turned out that stopping inosine and taking a break from it helped me. This is not as crazy as it sounds. With immune modulators (that help to normalize the immune system, rather than suppressing it or boosting it), you must constantly change the dose in order to keep them effective. I had done that with inosine for the past 10 years or so, alternating high-dose weeks and low-dose weeks and occasionally taking a two-week break. But I think that this time, with my immune system so overactive, even the inosine was too much for it, and stopping it completely helped. It's a treatment that has helped me (and my son) tremendously over the years, so I will keep it in mind to use again.

Finally, as in April, another short round of steroids (just 5 days of prednisone) helped to temporarily suppress my immune system, giving it a chance to sort of reboot and come back to normal (well, as close to normal as my immune system gets). You can read more details about using steroids short-term like this in my Relapses and Recoveries post (it is never a good idea to use steroids long-term with ME/CFS, since parts of our immune system are under-active). Also note that I tried a 5-day round of prednisone in September, when I was at my worst, but it had no effect. I needed to first treat all the different hormone issues and get back to a somewhat balanced endrocrine system, and then the steroids helped.

So, that was my 2022. I hope that 2023 will be much better!

How was last year for you?

 

What treatments help you?

 

Share your experiences (or any questions) in the comments below.

 

Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps

I was absent the past week due to a family funeral. Our brother-in-law died unexpectedly on January 1, so my husband and I quickly made plans to travel to Texas for the memorial service last weekend. I had no intention of flying anytime soon, but San Antonio is about a 5-day drive from here! Of course, I wore my mask the entire long day of airports and planes (and also most of the weekend). I also, for the first time ever, requested wheelchair assistance from the airline, and wow, what a difference! It helped so much, and all the people who helped me were so kind. If you've never requested it before and need to travel, definitely give it a try. It prevented bad over-exertion crashes so that I could enjoy time with our nephews and their families and recover quickly once back home.

While I catch up here and get back into a more normal routine, I wanted to share this video I posted just before our trip. It's called Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps. It describes a process I have used for many years, with loads of simple tips and strategies to help you meet your goals, change habits, and improve your life--all in ways that are doable even in lives severely limited by chronic illness, even if your only goal is to be happier and find more joy in your life. You can watch the video on Youtube or I will include it below: 

I would love to hear how you are starting the new year, and any advice you have for setting goals and making improvements when you are chronically ill. You can leave comments below or connect with me on Twitter or on this blog's Facebook page.

Happy New Year!

Favorite Movies Watched in 2022

I reviewed just 9 movies in 2022, in part because there is so much great TV to watch now. However, if I took the time to review a movie, it was because I really enjoyed it, so any movies on my 2022 list are worth watching, not just my top picks.

The TV icon in the image above is still mostly accurate, as we once again watched just one movie in a theater last year because my health was so poor most of the year. I'm hoping to get out to the recliner theaters a little bit more in 2023!

As in years past, you can see my full list of movies reviewed this year further down, and my top picks in each genre just below. To see all of the movies I have reviewed on my blog (a considerable list), check out the Movies tab, where they are listed by genre, though it's getting harder to categorize a movie into just one genre as there's so much cross-over now. Links go to my reviews, with a trailer. Note that where each movie is available might have changed over the years, since I first reviewed it, so double-check to see where you can watch it now.

Best of the Best Movies Watched in 2022:

Best Action/Suspense/Thriller 

Parasite

clever, funny, family drama that turns into a suspenseful thriller 

(Oscar winner: Best Picture)

Best Drama

Where the Crawdads Sing

Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop

 

 Best Comedy 

Licorice Pizza

nostalgic coming-of-age comedy/drama set ion 1970's L.A. 

(nominated for Best Picture)

Best Sci-Fi

The Adam Project  

heartwarming, funny, action-packed sci fi adventure 

All Movies Reviewed in 2022:

I only review movies I really like, so all of these are worth watching:

Action/Suspense/Thriller

Glass Onion - fun, eye-popping, suspenseful mystery with an all-star cast

Parasite - clever, funny, family drama that turns into a suspenseful thriller (winner: Best Picture)

Drama

Honey Boy - entertaining & moving film about a dysfunctional Hollywood childhood

The Power of the Dog - tense Western drama with emotional complexity (nominated for Best Picture)

Where the Crawdads Sing - Murder mystery/legal drama/love story/coming-of-age story set against a gorgeous natural backdrop

Comedy

Licorice Pizza - nostalgic coming-of-age comedy/drama set ion 1970's L.A. (nominated for Best Picture)

The Lost City - a light, fun adventure-romance

Sci Fi

The Adam Project - heartwarming, funny, action-packed sci fi adventure

Finch - warm, funny, suspenseful drama set in a post-apocalyptic world

Favorite TV Shows Watched in 2022

It's time for my annual wrap-up of my favorite TV shows reviewed in the past year! These are not necessarily new shows, but they are shows that we enjoyed last year, enough that I took the time to write a review. They run the gamut, covering all kinds of genres, so there's something for everyone here!

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2022. 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 (note that where to find shows may have changed over the years). And check out my Summer Shows 2021 and my 2022 Fall TV Preview posts for lots of other shows we enjoyed this year, some carried over from past years (everything listed under Fall New Shows we tried and enjoyed!).

I only review shows I like, so anything listed here or on the TV Reviews tab is worth trying. I didn't write a lot of TV reviews last year, so try them all!

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. 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 (subject to change).

 Best Drama

The Handmaid's Tale (H)

Glad I only just reviewed it this year so I could call it out - some of the best TV ever.

 

Best Crime/Mystery/Thriller/Legal/Action

4-way tie? No? OK, then ...

Shining Girls (Ap) (also fits under Sci Fi)

 

 Best Sci Fi 

Kindred (H)

(my current favorite) 

Note this is time travel with no scientific explanation, so historical fiction is a more apt category.

 

Best New Show

The Bear (C, H) 

(I added this category just to mention this show!)  

 

All TV Shows Reviewed in 2022

So much good TV last year!

KEY: Available on:

A = Amazon Prime

C = Cable and/or Cable On Demand

Ap = Apple TV

CBS or P+ = CBS All Access (now Paramount+)

H = Hulu 

HBO

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.)

Drama

The Bear (C, H)

The Handmaid's Tale (H)

Transplant (C, P)

 

Crime/Mystery/Thriller/Legal/Action

The Flight Attendant (HBO) with humor

The Old Man (C, H)

Shining Girls (Ap) (also fits under Sci Fi)

So Help Me Todd (C,  P+, H). with humor

Sci Fi 

Kindred (H)

Movie Monday: Glass Onion

We had our usual wild New Year's Eve, my lying on the couch and my husband in his recliner, watching a movie (and I did make it to midnight!). This year we chose Glass Onion: A Knives Out Mystery, and it lived up to all the great things we heard from others.

First, you don't have to watch Knives Out to see Glass Onion (but you should see it because it's a great movie--my review at the link). The only common denominator is Detective Benoit Blanc, played by Daniel Craig, who in this movie, has been invited to a mystery weekend on a private island by one of the world's richest men, tech giant Miles Bron (Edward Norton). Miles has also invited his five closest friends: Claire (Kathryn Hahn); Duke (Dave Bautista), who brings his girlfriend, Whiskey (Madelyn Cline); Birdie (Kate Hudson) who brings her assistant, Peg (Jessica Henwick); Lionel (Leslie Odom, Jr.); and Andi (Janelle Monae). The invitation is an elaborate wooden puzzle box, and Miles' set-up on the tiny Greek island is super-luxurious. At first, it seems like a gathering of friends for a fun murder mystery weekend, but you soon realize there is a lot of tension behind the scenes among the old friends. These backstories and issues are slowly revealed, amid sunshine and gorgeous scenery, until a real-life murder shakes up the guests and the host. Good thing world-famous detective Benoit Blanc is there! 

This movie is pure fun. The scenery and cinematography are eye-popping and colorful, the all-star cast is excellent, the mystery is twisty and unpredictable, and a great sense of humor runs through everything. In fact, it's hard to catch all of the fun asides in this fast-paced, action-packed mystery. In an interview, Daniel Craig said it's best to watch the movie twice to catch all the Easter eggs. It's a 2 1/2-hour romp that will keep you guessing right up until the famous detective solves the mystery (though the audience is let in on a secret partway through). If you're looking for entertainment and escape, this is the perfect movie to banish those winter blues.

Glass Onion is in theaters and available on Netflix.

Check out the trailer below for a taste of the colorful exuberance of this unique film: