My Experiences with COVID and ME/CFS

On January 5 this year, I got COVID. Happy New Year! I got it from my 96-year-old father-in-law's nursing home, where they are still battling an outbreak. He also got it, and so did my 24-year-old son. Somehow, my husband escaped it, even though all three of us had been visiting my father-in-law every day (he broke his hip just before Christmas so had just moved to the care home). I was wearing my mask when I visited, but as a resident, he was not wearing a mask, mine was just fabric, and the day he was diagnosed, I had spent 90 minutes with him, including hugging him and kissing his forehead and feeding him. And this omicron variant is crazy contagious! My son got very sick, with the classic cough, congestion, and fatigue, but he is otherwise healthy (he's the one who had ME/CFS as a kid but recovered fully) and after a week, he was testing negative, feeling a lot better, and back to work. My father-in-law is also doing much better and is out of the COVID ward, though he is still bed-ridden from the broken hip and has moderate dementia. COVID definitely got in the way of physical therapy and his recovery. As for me, I have had ME/CFS for 20 years, so my story is more complicated:

COVID Vaccines in 2021

After much deliberation, consultations with my doctors, and lab tests, I did decide to get the two Moderna vaccines in May and June of 2021. I shared all of my research here, in a series of three blog posts:

ME/CFS and COVID-19 Vaccines - all about the immune dysfunction of ME/CFS, how vaccines work, and how they are likely to affect those with ME/CFS.

COVID Vaccine Experience of ME/CFS Patients - several resources for looking at COVID vaccine experience of those with ME/CFS and some of the data collected at that point, plus our own experiences.

Prep for ME/CFS Patients Getting a COVID Vaccine - where I review treatments I was already on to help normalize the immune system, treatments for MCAS that could help to ease or prevent an allergic reaction to the vaccine, and advice from experts.

I was already doing most of what the experts recommended, plus lots of treatments to normalize my immune system. I think I had a relatively mild response to the vaccine for someone with ME/CFS. It definitely affected me, maybe for several months, but not severely, as I have heard from other patients (most likely because of all the immune treatments I was already taking). You can read more about my own vaccine experiences (and my son's) in that Vaccine Experience post.

 

Getting COVID in January 2022

So, my father-in-law was diagnosed on January 2 (and I spent so much time with him that day because he was much more lethargic than normal and had no appetite). My son's symptoms began the next day, and he tested positive a couple of days later. My own symptoms began on January 5, and I also tested positive a few days later (which shows you just how much it can spread before you even know you have it!).

For the first two weeks, I was very, very sick. I had the typical chest congestion, sinus congestion, and cough. The biggest symptom, though, was complete exhaustion. I've been living with ME/CFS for 20 years and have been through plenty of bad crash days (including many in the early years), but this was fatigue on a whole other level! Some days, I could not stay awake - I just ate and slept.

People with ME/CFS are especially prone to bacterial infections (our dysfunctional immune systems don't fight very well against bacteria), and I had a long history (before immune treatments) of getting bacterial bronchitis, often 4-5 times a year! Knowing this--and luckily, my doctor understands it, too--that first morning when I woke up with my chest tight and a bit of chest congestion, I immediately asked my doctor for Zithromax, an antibiotic that works against bronchitis. As I said, and she agreed, even if it was COVID, the congestion would almost certainly lead to bronchitis for me. I'm so glad I did this! Given my past history, I think it is almost certain, I would have ended up with both COVID and bronchitis, which would have been much harder to recover from.

Gradually and very slowly, I began to see small signs of improvement after two weeks: fewer days of sleeping all day; being able to sort of sit up on the couch, propped on pillows; less congestion. In this past week, I have been able to resume my usual schedule of being productive from the couch or recliner in the morning, taking an after-lunch nap, and getting in another couple of productive hours in the late afternoon. 

Interestingly, it took me longer than my son to finally test negative - about two weeks versus his one.

I am just past three weeks now, and the improvements have continued. I'm not coughing much anymore, though I still have a lot of excess mucus and need a cough drop before nap and bed. My post-exertional malaise (PEM, i.e. crashing after mild exertion) has been much, much worse with COVID but is beginning to improve. I have been managing a slow 15 minute walk after my nap most days, and I was able to go out in public and run a few easy errands this week. (Note that in past years, I have reduced PEM and improved my stamina by treating OI and treating immune dysfunction.)

Out in the world again!

What's Ahead?

In that second week with COVID, when I was still so very sick that I could barely stay awake, I did start to worry that my ME/CFS could stay worse for a very long time, since COVID is a known trigger for ME/CFS (many cases of "long COVID" are ME/CFS). Although my recovery has been slow, I have now this past week seen steady signs of improvement, and I do think I will be able to get back to my "normal" baseline, which I had just returned to in December after a 20-month relapse!

During those dark days, I did a little informal poll on chronic illness Twitter (there's a great community there - find me @livewithmecfs). I just asked people with ME/CFS who got COVID, how long it took them to return to their normal baseline. I didn't add up the results, but some people answered anywhere from a month to nine months, some people said they still weren't back to baseline (after months or years), and just a very few said they were better than before they had COVID! As with everything else with ME/CFS, we are all different!

I do think that all that work I did in the past 20 months to recover from my March 2020 relapse, plus the treatments I had started before that, certainly have helped me. I'll work on a separate post about what I did to recover from that relapse, but in the meantime, you can see a summary of the treatments for ME/CFS that have most helped my son and I.

Please see my follow-up post, What To Do If You Get COVID, for more information on how to treat COVID to prevent serious complications and some other preliminary things you can do, with ME/CFS, to lessen the impact. All of this information is also applicable to those with long-COVID.

What About You?

Please share your own experiences in the Comments (please let me know on Twitter or Facebook if you are unable to leave a comment).

Have you had COVID? How bad was it? Have you recovered back to your normal baseline yet?

Movie Monday: Parasite

As usual, we were searching for a movie Saturday night, something with great ratings that is free on one of the streaming services we get. I noticed that Parasite is now free on Hulu, so I talked my husband into trying it. Neither of us probably would have chosen this Korean movie with subtitles out of the blue, but I knew it had won the Oscar for Best Picture in 2019 (along with a slew of other Oscars that year). We went into it thinking that it was some sort of thriller, maybe about some kind of pathogen or infestation? We were so wrong. This movie kept surprising us (in a good way) and turning into something we never expected. 

Ki Woo is an older teenaged boy, played by Woo-sik Choi, who is at loose ends. He dreams of going to college, but right now, he's stuck in a basement apartment with the rest of his family. His dad, played by Kang-ho Song, is unemployed, though a medal hanging on the wall in a frame indicates he once had a bright future ahead. He seems depressed in the opening scenes. Ki Woo's older sister, Ki Jung (played by So-dam Park), is similarly unemployed, with no future, though she has some artistic talent. And their mother is also unemployed, though she tries to stir her family to earn some money by folding pizza boxes for a local restaurant. One day, Ki Woo is talking with a friend who's in college. He explains that he has an awesome job tutoring a wealthy high school girl in English, and he asks if Ki Woo wants to take over the job while he travels overseas. Though Ki Woo can't afford school right now, he did very well on his exams, including English, so his friend recommends him to the wealthy family. Ki Woo is in awe when he walks up to their huge, modern home, quite a contrast to his own family's basement apartment. They have an enormous fenced-in yard, windows everywhere, and the latest conveniences. He begins tutoring their daughter, Da Hye, and earning more money than he ever has before. When the mother mentions she is looking for an art teacher for her rambunctious younger son, Ki Woo recommends his sister, hiding her identity by saying she is the cousin of a friend at school. And then ... well, you'll never guess what's coming!

That was just the basic set-up from the earliest scenes of the movie because the fun and cleverness of this film come from the twisty surprises around every corner! It's difficult to categorize Parasite, either, because it has so many different moods and pieces. It's very funny, especially in the first half. Later, things turn quite dark, with plenty of tension and suspense, turning into a thriller. And it is also very sad at times. We don't watch many movies with subtitles, but we got used to them--we just discovered we had to finish dinner first and pay attention! We quickly got into the spirit of the movie and went along with its flow. And what a flow it is! We thoroughly enjoyed this ever-surprising movie and recommended it to our son and his girlfriend last night.

Parasite is currently available for free on Hulu or for a small fee on YouTube, Google Play, Apple TV, and VuDu.

Top Ten Blog Posts of 2021

It still seems weird that it's 2022 now, doesn't it?  Sounds like science fiction! Plus I've had COVID for the past three weeks (caught from my father-in-law's nursing home, in spite of all my precautions), so this has not been a typical January for me! I still need to take a look back at my own personal health year, but in the meantime, I thought I'd share the most popular posts on my blog for the past year.

As is pretty typical here on the blog (which I started in 2006), 6 of the Top 10 posts last year were ME/CFS treatment posts. There is just so little information out in the world--and especially in the medical community--about how to effectively treat our disease that anytime I share our treatment successes, there is a lot of interest from patients and caregivers. It's also no surprise that 3 of the Top 10 posts last year were about COVID vaccines and ME/CFS, which is still a hot topic. And the 10th post is just a head-scratcher!

Here are the Top 10 Posts from the blog in 2021, in order from most popular:

1. Heart Rate and Post-Exertional Crashes in ME/CFS - over the past few years, I've seen this topic attract more and more interest from patients, as different kinds of heart rate monitors have become more common. Monitoring heart rate is a great way to quantify your limits, know when you're doing too much, and help to prevent post-exertional crashes. The post includes how and why it works, how to estimate your own limits, and tips on finding the right heart monitor.
2. Opinions and Editorials on the New Name and Criteria - this one is the head-scratcher! It's a post from 2015 that is really not very relevant anymore, yet it continues to attract a lot of visitors. There must be a link to it somewhere that keeps bringing readers to it, though the new name never caught on.
3. Orthostatic Intolerance (OI) and ME/CFS - This post is from 2010, but I still constantly share it with people. OI (POTS is one type) is an integral part of ME/CFS and often a part of fibro, EDS, MS, Lyme, and other diseases. The good news is that treating OI often improves all symptoms and allows you to be more active without crashing, so this post deserves its spot in the Top 3! It's one of several treatments that have quite literally been life-changing for my sons and I.
4. Prep for ME/CFS Patients Getting a COVID Vaccine - This post was actually #3 in a 3-part series (the other two are below and linked at the start of this post), so you might want to read them in order. In this post, I review different kinds of treatments that can help to improve your immune system and reduce the chances of an adverse reaction from any vaccine, including advice from the experts. Note that the treatments in this post will help to improve your overall condition, whether you're preparing for a vaccine or not!
5. ME/CFS and the COVID-19 Vaccines - This was the first post in the 3-part vaccine series, describing the specific kinds of immune dysfunction common in ME/CFS, how vaccines work, and our past experience with other vaccines.
6. Increasing Glutathione in ME/CFS and Related Illnesses - Glutathione is a naturally occurring antioxidant in the human body that people with ME/CFS (and many related illnesses) just don't make enough of. Increasing your glutathione will help with energy, detox, and most importantly, improving immune function. There are many ways to increase glutathione (some that you can try on your own cheaply and without a prescription). Increasing glutathione has greatly improved immune function in my son and I, taking us both from 4-5 bouts of bronchitis a year to maybe once every two years, plus improving our daily ability to function.
   
7. Imunovir and Inosine for Treating ME/CFS - Inosine is another treatment that helps to normalize the immune system and has had a huge positive impact on my son and I, providing massive improvements in all symptoms, our quality of life, and allowing us to be more active without crashing. And in most places, it is available as a supplement, without a prescription, and is cheap!
8. Treating ME/CFS Sleep Dysfunction - This was one of my first treatment posts, and it's still one of the most important! My own primary care doctor, after first diagnosing me with ME/CFS, said, "The first thing we need to do is fix your sleep--that will make everything better!" (Yes, I am very lucky to have found this doctor.) She was right! Correcting sleep dysfunction and getting good quality sleep every night improves all symptoms, in a domino effect (better sleep improves endocrine function, immune function, etc.). By the way, this post is about actually correcting sleep dysfunction and restoring normal, natural sleep, not knocking yourself out with sedatives.
9. COVID Vaccine Experience of ME/CFS Patients - This was the 2nd post in that 3-part series on COVID vaccines, covering patient experience to date, including where you can go to read about others' experiences.
10. The Methylation Cycle: Central to ME/CFS - Another area of treatment that can yield great improvements. Almost everyone with ME/CFS (and many related illnesses) has dysfunctional methylation, and improving it can improve all symptoms and also allow you to try other treatments. If you can't tolerate even small doses of medications and supplements, this is why! Start with methylation--many of the treatments for it are readily available and inexpensive.

That's it! The Top Ten posts from this blog in 2021--and, coincidentally, an excellent outline of simple, inexpensive treatnents that can greatly improve your condition.

Movie Monday: Finch

Saturday night, after two weeks with COVID, I declared a fun night, and my husband and I ordered pizza and wings and watched a movie. We settled on Finch, an original movie on Apple TV starring Tom Hanks that looked appealing to both of us. We had a wonderful feast and thoroughly enjoyed this warm, funny and heartbreaking yet hopeful movie.

Hanks plays Finch, an engineer marooned in a post-apocalyptic world. A solar flare rendered Earth almost uninhabitable, with searing temperatures, soaring radiation levels, and nothing left growing. It's a stark, terrifying landscape, but Finch is holed up in the old tech company where he used to work and is fairly safe. Something of a tech genius, he has not only outfitted his bunker but also developed a protective suit for himself and some rudimentary robots to help him scavenge what he can (though there's not a lot left). Most important, for his mental health, he found a dog who lives with him in the bunker and to whom he is devoted. At the start of the movie, once we see what the outside world is like and what Finch is up against, he puts the finishing touches on his best robot yet: a human-like robot who has been programmed with a "prime directive," to protect the dog. Not a moment too soon because Finch spots a huge storm coming and decides that the three of them will be better off leaving town. They pile into a modified, tank-ified RV and head west out of St. Louis. Finch has always wanted to see the Golden Gate bridge in San Francisco. Their journey is an adventure, with plenty of challenges encountered but also some laughs and tender moments along the way.

This movie is filled with the kind of warmth and humor you expect from Tom Hanks (not to mention his smart, just-learning-about-the-world robot), though there are moments of peril and one very sad part, too. It takes you on an emotional journey along with the characters. Hanks has some experience with starring in a movie where he is practically the only character on-screen, though here, both the dog and the robot have their own fully-developed personalities, so it doesn't feel like he's alone. The challenges they face are often dark and frightening, so there is plenty of action and suspense, though the heart of this movie is ... its heart, and there is plenty of humor along the way. It's really about relationships and about hope. We both enjoyed it very much; it was a perfect Saturday night escape!

Finch is an Apple original, so it is available exclusively on Apple TV.

Weekly Inspiration: What Are You Looking Forward To?

(NOTE: If you'd rather watch than read, check out my recent video What Are You Looking Forward To?, which covers the same topic.)

I haven't been on the blog in a couple of weeks because I got COVID. I'll write a more detailed post about my experiences when I am up to it, but the short story is that my son and I both caught it from visiting my 96-year-old father-in-law in a nursing home. We are both vaccinated and were wearing masks, but I know from lab tests that I hardly made any antibodies, due to the immune dysfunction of ME/CFS. Also, this omicron variant is insanely contagious, so be careful!

Bottom line is that I have been very, very sick for the past two weeks. I've had the characteristic cough and both chest and sinus congestion, but the biggest symptom is having absolutely no energy. After 20 years with ME/CFS, you'd think I'd be used to that, but this fatigue is on a whole new level! I've spent many days just sleeping, and when I'm awake, I usually can't manage more than watching a sitcom or reading for about 15 minutes. 

So, it's been a very long, boring, lonely two weeks! The exhaustion and repetition was really getting to me by Friday. That's when I remembered a key tenet of living with chronic illness that I write about in my book, Finding a New Normal: Living Your Best Life with Chronic Illness: What are you looking forward to? 

I explain below where it comes from and what it means, but this weekend, I was really feeling like I had nothing to look forward to, with endless sameness stretching out before me. I thought about it and announced to my husband, "Saturday night, we're ordering pizza and wings and watching a movie!" This may not sound like much, but we both were excited about our plans for a wild Saturday night. Last night, we ate like total pigs and completely enjoyed every bite of our treats (and our movie, too).

THIS is what I was looking forward to!

So, in case you are also in need of some inspiration this week, here's the full chapter excerpted from my book. What are YOU looking forward to??

 

What Are You Looking Forward To?

During my first five years with ME/CFS, I saw a wonderful psychologist who specialized in chronic illness. Her favorite question—often asked at each vis- it—was, “What are you looking forward to?” She explained to me that it had two purposes.

First, she thought this question was the perfect test to differentiate clinical de- pression from other kinds of chronic illness. Since her own grown son had ME/ CFS, it infuriated her that medical professionals—including many of her own colleagues—were constantly questioning whether ME/CFS was really depres- sion (this was in the early 2000s). She said if she asked the question to someone who was clinically depressed, he or she usually could not come up with any- thing they were looking forward to and, in fact, didn’t want to do anything. In contrast, she said that when she asked this question of someone living with a different chronic illness, he or she would usually respond with a long list of things they wanted to do, if only they could.

The second purpose of her question was to get her chronically ill patients look- ing forward and thinking about the good things in their lives. When you get to the point where you are “sick of feeling sick” (as we all do), this question prompts you to take a step back from the intricacies of your daily symptoms and to think of your life in broader terms. What’s going on in your life? What is coming up with your friends and family? What kind of good things are you looking forward to?

Over the years, long after I stopped seeing that wonderful psychologist (who is now, alas, retired), I have continued to use her favorite question at times when I am feeling down: what am I looking forward to?

My first step is usually to flip through my Joy Journal, which I have kept off and on over the years since I got sick and where I jot down things that brought me joy that day. Often, they are small things, like sunshine, a hug from my kids, a piece of dark chocolate, or a fabulous book. This helps to remind me of all the 

small pleasures that occur in my everyday life—even on the days that seem dark and routine.

Next, I take the question to heart and really think about what’s coming up in my life. Maybe I am looking forward to some big thing, like a holiday or special occasion, although those kinds of events usually also carry some stress over how I will manage. Often, the things I am really looking forward to are smaller: the arrival of spring, a new season of a favorite TV show that my husband and I en- joy, a rare lunch out with my closest friends, or the new release of a book by one of my favorite authors.

Just like my psychologist told me all those years ago, this question reminds me of all the things that are good in my life, all the good things coming up, all the things I am looking forward to—big and small. It’s a way to re-center myself and pull back from the web of misery that we all fall into once in a while.

Try it yourself—right now, or once a week, or whenever you feel discouraged or dissatisfied. If you truly can’t think of anything you are looking forward to, then take my psychologist’s words to heart and consider seeing a profession- al. Perhaps you are suffering not only from a physical chronic illness but also from clinical depression (a chronic illness in itself ). If you are too ill to leave the house, consider contacting an online counselor specializing in chronic illness, who can work with you via phone or video chat.

For most people with chronic illness, this simple exercise will help you to re- member the little things that make you happy, to be grateful for what you have, and to remind you of the things you are looking forward to. If you are still feeling down, take concrete steps to remedy that. Act on some of those small joys—make yourself a cup of your favorite tea, watch a show or movie that is uplifting or funny, or lie in a chair out on your deck or in your yard (or even just open your window), look up at the sky, and listen to the birds. Before you know it, your spirits will be lifted.

What are you looking forward to?

Favorite TV Shows Watched in 2021

With bad weather this time of year and COVID running rampant everywhere, you may be staying home more (or entirely right now, like me) and looking for a great TV show to watch! I've got you covered, with my favorites from 2021. These are not necessarily new shows--some are older--but they are shows that we watched and enjoyed this 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! And these are available on all kinds of platforms, too, including cable, network TV, and streaming.

Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2021. 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 but all should still be available). And check out my Summer Shows 2021 post for lots of other shows we enjoyed this year, mostly carried over from past years.

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!). 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

For All Mankind (Ap)  

(close call with Maid but this one is such an outstanding epic drama, covering decades) 

Best Dramedy

Only Murders in the Building (H) - also mystery!

 

Best Crime/Mystery/Thriller/Legal/Action

Veronica Mars (H, Ap, A)

(all in this category were favorites but we were obsessed by Veronica!)

Best Sci Fi

Resident Alien (SyFy, C, H, P, A)

Sci fi, yes, but also comedy and drama - so excited for season two!

Best Reality Show

Lakefront Bargain Hunt (C, HGTV)

We rarely watch any reality TV, but this has become our go-to comfort TV!

All TV Shows Reviewed in 2021

So much good TV last year!

KEY: Available on:

A = Amazon Prime

C = Cable and/or Cable On Demand

Ap = Apple TV

CBS = CBS All Access (now Paramount+)

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.)

Drama

The Big Leap (Fox, C, H) - with music and dance

For All Mankind (Ap)

Halt and Catch Fire (N, A, AMC)

Maid (N)

 

Dramedy (both drama and comedy combined)

Dickinson (Ap) 

Only Murders in the Building (H) - also mystery!

The United States of Tara (S, H)

 

Crime/Mystery/Thriller/Legal/Action

Big Sky (C, ABC, H)

Home Before Dark (Ap)

Veronica Mars (H, Ap, A)

 

Sci Fi  

Debris (P, H)

Resident Alien (SyFy, C, H, P, A) - also comedy & drama!

Reality 

Lakefront Bargain Hunt (C, HGTV)

Favorite Movies Watched in 2021

HAPPY NEW YEAR!

It's time again for my end-of-year wrap-ups. First up: movies! 

I reviewed 13 movies in 2021 (same as 2020). To clarify, as with last year, I reviewed 13 movies but watched more (see below). Blogging time was at a premium last year! However, if I did take the time to review a movie, it was because I really enjoyed it, so any movies on my 2021 list are worth watching, not just my top picks.

The TV icon in the image above is still mostly accurate, as we watched just one movie in a theater last year. We had about two weeks last summer--after I was fully vaccinated and before the COVID numbers started going up again--when we felt safe going to the theater. We were in a recliner theater for an early matinee with only one other couple across the room, and it was quite a thrill to eat movie popcorn and watch something on the big screen again!

As in years past, you can see my full list of movies reviewed this year further down (plus those I watched but didn't review), 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. 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.

So (drum roll, please): My Top Picks for 2021:

 

 Best Action/Suspense/Thriller

A Quiet Place, Part II 

Original, genre-busting movie as good as the original!

 

Best Drama

The Peanut Butter Falcon

Such a hard choice! So many good dramas last year, but this one hit all the buttons. We both loved it. 

 

Best Comedy

Moxie

  Fun, uplifting coming-of-age mother-daughter movie.

 

Sci Fi 

Chaos Walking

Action/thriller on a different world, based on a YA novel - we both loved the book, and this was a faithful adaptation.

All Movies Reviewed in 2021

My favorites are marked with a *, but I only review movies that I enjoyed, so these are all worth a watch:

Action/Suspense/Thriller

The Nice Guys - entertaining action/thriller with humor, set in the 1970's

 * A Quiet Place, Part II - original, genre-busting movie as good as the original

Drama

* Find Me - warm, poignant movie with gorgeous settings (end of review includes recommendations for five other movies with beautiful outdoor settings)

* Leave No Trace - quiet, powerful movie about father-daughter relationship, set outdoors

The Map of Tiny Perfect Things - teen time-loop movie with lots of fun & plenty of heart

* Nomadland - beautiful, gentle film about real-life modern nomads - won 6 Oscars

* Palmer - poignant, uplifting movie about ex-con bonding with boy

* The Peanut Butter Falcon - wonderful! Original, heartwarming & funny

Comedy

Blow the Man Down - dark comedy in a Maine fishing village

* Grandma - warm, funny, heartbreaking movie about eccentric grandma & her granddaughter

* Moxie - fun, uplifting coming-of-age mother-daughter movie

On the Rocks - warm, funny movie about marriage and a father-daughter relationship

Sci Fi

Chaos Walking - action/thriller on a different world, based on a YA novel

 

In 2021, I did not review any Musical Dramas, Family, or Documentary movies.

Movies I watched but did not review:

I’m Your Woman - action

Honest Thief (Liam Neeson) - action

Devil in a Blue Dress - excellent suspense/thriller

Hamilton - musical

Save Yourselves! - sci fi comedy - entertaining but weird

The Woman in the Window- suspense/thriller - OK but not as good as the novel

Vertigo - classic Hitchcock suspense/thriller

News of the World - historical drama with Tom Hanks, adapted from the novel

Free Guy - fun comedy/drama with a unique premise

Don’t Look Up - uneven satire/dark comedy

Weekly Inspiration: Setting Goals When You Are Chronically Ill

 Happy New Year!

I love the beginning of a new year, with its fresh start and chance to contemplate the year past. I have my own process for looking back and planning for the new year, and once I've gone through that, I'll share my health and wellness related data from 2021 and goals for 2022 with you here.

In the meantime, this seems like the perfect time to share an article I wrote about Setting Goals When You Are Chronically Ill. This article was first published on the ProHealth website on December 30, 2016. I edited and updated it last year to include as a chapter in my book.

Don't worry - this isn't about New Year's resolutions or setting goals to run a marathon or lose 20 pounds. This is a goal-setting process for us, all of us limited by chronic illness and living within a slew of restrictions. We can still improve our lives, in small but meningful ways, by taking baby steps toward our goals. Here's how:

Reprinted from Finding a New Normal Living Your Best Life with Chronic Illness by Suzan Jackson (February 2020):

Setting Goals When You Are Chronically Ill

 

 

A

ll around us, we are constantly inundated with stories of resolutions, aspirations, and amazing achievements—from the media as well as family and friends. It is easy to feel left out when you are chronically ill and unable to lose 20 pounds, run a marathon, travel around the world, or do any of the other exciting things you hear others talking about. Being sick doesn’t mean you have to ditch the improvement process, though; it just means you have to adjust your expectations and learn how to set goals that are right for you, at this point in your life.

I was a high achiever (and also a very analytical engineer) before getting ME/CFS. Through work or on my own, I had been through all kinds of self-improvement and goal-setting classes and read a wide range of books: Zig Ziglar, MindMaster, Myers-Briggs Personality Test (I’m an ENFP), 7 Habits of Highly Effective People, and more. I was an expert on getting things done and being productive, and I even taught companies how to set goals and objectives on a larger scale, to make environmental improvements.

During the early years of my illness, I was frustrated as I watched my old goals sit on the sidelines, languishing year after year. At some point, though, I realized I could apply the same goal-setting processes I’d used and taught previously to my new life with chronic illness. My goals would just be different—in some cases, very different, as it turned out!

Following is how I modified those old concepts to come up with a new way to set personal goals for myself that took into consideration my “new normal” of life with ME/CFS. You, too, can use this simple step-by-step process to set your own improvement goals.

 

Step 1: Set Lifetime Goals

This is actually something I learned in the old days, before ME/CFS: to think about what I wanted out of my life long-term and to write down those over-reaching goals. Your lifetime goals might be about your health, relationships, self-fulfillment, profession, passions, etc. These are big-picture things that don’t usually change.

Here are my six lifetime goals:

·      To have strong, fulfilling relationships with family and friends

·      To be a writer, writing about topics that interest me and contributing to my family’s income

·      To travel and spend time outdoors with friends and family, doing activities I enjoy

·      To create and maintain a comfortable, happy, and nurturing home environment

·      To be healthy

·      To be financially stable enough to take care of our family and to reach our long-term goals (which is more of a joint goal with my husband now)

These haven’t changed much since getting sick, except that I added the one about being healthy. When you’re well, it never occurs to you that being healthy is a goal! What has changed is the way that I interpret some of these, given my limitations and needs now. That’s where objectives come in.

 

Step 2: Set Specific Objectives within Each Goal

This is where you begin to get more specific, detailing what objectives would help you to attain your lifetime goals. Think of an objective as something you want to achieve, and remember that goals have more than one objective. When goal-setting, I write down a few objectives under each of my lifetime goals.

For instance, my relationship goal (#1), includes the following objectives:

·      Spend more time with my husband.

·      Have fun with our kids.

·      Spend time with friends.

·      Stay in touch with distant family and friends.

 

My objectives for “Be Healthy” include:

·      Improve my health and my son’s health by trying new treatments.

·      Become more active and improve stamina.

·      Reduce stress and rest more.

·      Make time for myself.

 

Do you see what I mean about chronic illness objectives being different than those for healthy people? One of my key objectives is to rest more! That’s a New Year’s resolution I’ve never heard discussed on the Today Show or read in a self-improvement article.

 

Step 3: Set Measurable Targets to Help You Meet Each Objective

This is the key to success, to help you actually move toward your goals. For each objective, set well-defined, doable (given your health and other life factors), and measurable actions. While my lifetime goals never change and my objectives rarely change, my targets can vary from year to year or even month to month.

For example, consider my objective “reduce stress and rest more.” If I just stopped there, with that vague objective, it is unlikely anything would change. I have deeply ingrained habits that often keep me from listening to my body and resting as much as I need to.

So, my targets last year for “reduce stress and rest more” were:

·      Meditate for at least 10 minutes a day

·      No computer after 7:00 pm

·      Rest when symptoms flare (greater than a 3) (Note: I track my daily symptoms, using a 1–5 scale)

·      Take one “day off” each month with no responsibilities

·      Do two fun things for myself each week (besides TV)

 

See how specific these targets are? They are reasonable targets—small steps—that I think I can truly meet. For instance, meditation experts recommend meditating twice a day for 20 minutes. Since I am trying to establish a new habit, I started with just 10 minutes a day, which is easily measurable and achievable for me. In some cases, your targets will change throughout the year as you achieve them, as situations change, or when you need to further adjust your plans.

These targets are specific to my own needs (and weaknesses). I know that too much time on the computer wears me out, but I am often online almost all day. I go downhill fast at the end of the day, so my target to put the computer away by 7:00 pm ensures I have some restful downtime with my husband every evening—and that helps with my objective to spend more time with him, too!

 

Step 4: Track Progress

For a while, I continued to set my targets in January and forget about them until the end of the year, and then I’d be disappointed I hadn’t met them. It is critical to find a simple way to track your progress. It might take some trial and error to find a process that works for you.

In keeping with my over-analytical tendencies, I use an Excel spreadsheet with all of my targets listed down the left side of the page. I spend five minutes each day jotting down how I did on my targets, then take a quick look at the end of each week and each month. It sounds like a lot, but it is really only a few minutes a day, and this is what works for me. I can see what I’m doing well and what I need to work on.

Another option is to take a quick look at your targets at the end of the day or week and maybe make a few notes in your journal about what to work on next. If you prefer electronic tracking, use an app on your mobile device or computer to track progress. Merely reading your targets daily or weekly will help to keep them fresh in your mind.

 

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Chronic illness and goal-setting are not mutually exclusive. You can still set goals, objectives, and targets and make progress on whatever is important to you in your life. I love the start of a new year and the whole process of setting new objectives and targets for the year ahead. But you can do it at any time—right now, in fact! You can also adjust course however and whenever you need or want, as your health and circumstances change. The keys to success are to focus on your personal needs, desires, and limits and to make your objectives and targets measurable and specific.

Bit by bit, very gradually, I am improving my quality of life in small ways that matter to me and getting closer to achieving those lifetime goals.

Think about what your own lifetime goals are. What are your objectives for achieving those goals? Then set specific targets—those measurable actions you can realistically take—to help meet your objectives and make progress toward your lifetime goals. You, too, can take steps to achieve the life you want.