Sunday, January 26, 2020

Weekly Inspiration: Rediscovering Mercy

The source of this week's inspiration comes from a slim memoir by famed author Anne Lamott called Hallelujah Anyway: Rediscovering Mercy (my review at the link). I read it in November for one of my book groups (though I ended up not feeling well enough to go to the discussion). I was glad for the opportunity to read it because I have always enjoyed Lamott's writing--I've read several of her memoirs about being a mother and one of her novels--and a good friend gave me a signed copy of this book a few years ago.

Anne Lamott is an acquired taste, and from what I heard later, not everyone in my book group enjoyed this memoir. It is a bit meandering and has a stream-of-consciousness style and a brand of outspoken, brutal honesty that is Lamott's trademark but perhaps not everyone's cup of tea. However, our group leader told me that they had a great discussion about the book, which doesn't surprise me. My own copy--less than 200 short pages--is filled with Post-It Note tabs!

So, I thought I'd share a few of these quotes with you. Lamott provides her own musings but also draws from a wide variety of religions and inspirational quotes from all kinds of people. As the subtitle indicates, this is a book about mercy: grace and kindness and forgiveness. I don't know about you, but I could sure use more of that in my life. And I know that I am hanging onto resentments--especially about the way certain family members have treated me since becoming ill--that are hurting me at least as much (probably more) as others.

Here are some quotes from Hallelujah Anyway: Rediscovering Mercy that really spoke to me and made me think:
"But let's say we believe that mercy and forgiveness are in fact foundational, innate, what we are grown from and can build on: also that they are hard to access because of these traumas and fears. What if we know that forgiveness and mercy are what heal and restore and define us, that they actually are the fragrance of the rose leaves on the heel that crushes it? So why today is it absolutely all I can do to extend mercy to myself for wanting to nip an annoying relative's heel like a river rat? Forget extending mercy to this relative, who has so messed with me and my son--she doesn't even know she needs my mercy. She thinks she is fierce and superior, while I believe she secretly ate her first child. Horribly, she is perfectly fine. I'm the one who needs mercy--my mercy."

I love Lamott's honesty and her willingness to admit to nasty thoughts and feelings so that we can, too. I could have written this passage (though not nearly so eloquently!), and every time I read it, it hits home anew.

Here, she writes more about the nature of mercy:
"Mercy is radical kindness. Mercy means offering or being offered aid in desperate straits. Mercy is not deserved. It involves absolving the unabsolvable, forgiving the unforgivable. Mercy brings us to the miracle of apology, given and accepted, to unashamed humility when we have erred or forgotten. Charge it to our heads and not our hearts, as the elders in black churches have long said."

She digs into the concept more deeply here:
"As Father Dowling said, sometimes heaven is just a new pair of glasses. When we put them on, we see the awful person, sometimes even ourselves, a bit more gently, and we are blessed in return. It seems, on the face of things, like a decent deal.

Kindness toward others and radical kindness toward ourselves buy us a shot at a warm and generous heart, which is the greatest prize of all. Do you want this, or do you want to be right? Well, can I get back to you on that?"

I just love that last line! Again, she is not afraid to be honest about her shortcomings and flaws, and in doing so, she gives permission to the reader to also be honest. This passage also succinctly explains the challenge between knowing what's right and doing what's right.

She continues on that theme here:
"There should be an app, with a checklist or map. But, no, the way out takes admitting that you're wrong and sorry. No, no, anything but that. Forgiving people makes you weak. Push them away! Lewis Smedes said, "To forgive is to set a prisoner free and discover that the prisoner was you." But I can't launch forgiveness of my own volition, from my air-traffic-controller mind."

And I loved this brief statement:
"People say that expectations are resentments under construction ..."

I often joke that the key to pleasant family gatherings is low expectations ... and now I know why!

Lamott doesn't just describe the problems; she also talks about how to move toward mercy and grace, always admitting that it's not easy:
"Mercy means that we no longer constantly judge everybody's large and tiny failures, foolish hearts, dubious convictions, and inevitable bad behavior. We will never do this perfectly, but how do we do it better? How do we mostly hold people we've encountered with the understanding of a wise, caring mother who has seen it all, knows that we all struggle, knows that on the inside we're as vulnerable as a colony of rabbits?"

Finally, in the last chapter, she sums things up, leaving the reader with some inspiration for moving forward:
"Forgiveness and mercy mean that, bit by bit, you begin to outshine the resentment. You open the drawer that was shut and you take out the precious treasures that you hid there so long ago, and, with them, the person who marvels at tadpoles, who pulls for people to come clean and then have a second chance, who aches and intervenes for those being bullied, forgives the evil brothers and unforgivable you."

This post ended up being much longer than I'd planned, but there is just so much thoughtfulness and wisdom in this little book. That was only a fraction of the quotes that I had flagged, and I am finding that every time I come back to this book and re-read some of these, I like it even more. I needed this book and this inspiration, both the acceptance that this is hard stuff to do and the encouragement that the hard work is worth it, not just for others but also to give myself more peace and kindness and mercy.

I think feeling mistreated and resentful kind of comes with the territory when you're chronically ill. There will always be people in your life who don't get it, who don't understand your challenges or even who think you are exaggerating or making up your illness (as if!), and we need to find a way to deal with the hurt and resentment those people leave behind because it is harming us. Anne Lamott has given us a lot to think about, and I know I will be re-reading this book in the future.

Let me know what you think of these quotes and concepts and ideas. Have you struggled with mercy and forgiveness in your own life?


Listen to a sampleof the audio book here, read by the author, and/or download it from Audible (that link--and the one below--also works for the print, large print, or e-book).



Monday, January 20, 2020

Favorite Movies Watched in 2019

And....drumroll! Time for my annual recap of all the movies I watched last year, plus my picks for favorites. Note that not all of these movies were released in 2019; these are just the ones I watched last year.

I reviewed just 16 movies last year, compared to 22 in 2018 (though I didn't have time to review every movie I saw). We are definitely watching fewer movies as the TV options continue to expand and improve. You can see the full list 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!). It was tough to categorize many of the movies, so some of my choices are sort of random. More and more, movies are blurring the genre lines: funny mysteries, dramas with plenty of humor, musical comedy dramas, etc. Once Upon a Time in Hollywood alone could have gone into three different categories! I saw a lot more movies in theaters the past two years, so more of these are recent releases than usual for me. Thank you, recliner theaters!

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

And now, for my top picks - do I have to choose? Some of these are very tough choices:

 Best Action/Suspense/Thriller
Classic action thriller and dark, gripping drama

Best Drama
Lion
Everything I saw in this category was great but Lion blew me away.

Best Comedy
Knives Out
So many great funny movies! This humorous whodunit took the prize.


Best Sci Fi/Fantasy


Best Musical Drama
Music, warm drama, comedy - this uplifting movie had it all and we both loved it!


I created this category for this movie because it is SO good, combining drama, humor, and suspense with a hefty dose of nostalgia and a very clever twist.


What were your favorite movies watched in 2019?

All Movies Reviewed in 2019:
My favorites are marked with *, but I only review movies I enjoy, so all of these are worth a try:
 Action/Suspense/Thriller
Fracture
Secret in Their Eyes
* Shaft 
* Widows

Drama
* The Art of Racing in the Rain
* El Camino: A Breaking Bad Movie 
* Lion
* Once Upon a Time in Hollywood

Comedy
* Edge of Seventeen
* Knives Out

* Like Father
Murder Mystery
* Smart People 

Sci Fi/Fantasy
Fantastic Beasts: The Crimes of Grindewald
* Star Wars: The Rise of Skywalker
 
Musical Drama
* Yesterday

Tuesday, January 14, 2020

Favorite TV Shows Reviewed in 2019

It's time for my annual wrap-ups, starting with TV shows. Listed down at the bottom of this post are all of the shows that I reviewed here on my blog in 2019 (some new shows, some continuing favorites for us). TV shows here includes both those on network TV, cable, and On Demand, as well as on the major streaming services (and many shows are available on the 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.

Best Comedy
The Other Two (A, C, I) - Comedy Central
(not only very funny but also clever, smart, and an insightful look at today's world)


Best Drama
Unbelievable (N) - Netflix
(powerful true story with excellent writing and acting)


Best Dramedy
 The Rookie (A, C, I) - ABC
(one of our favorites, now in season 2 - action, drama, suspense, and a sense of humor)


Crime/Mystery/Thriller/Legal/Action
Imposters (C, N) - Bravo 
(suspenseful, funny, great cast, though this category was a tough call, and In the Dark and Dead to Me were both very close seconds!)


Best Sci Fi
Hanna (A) - Amazon
(we were glued to our TV for this one! Twisty, suspenseful, excellent cast - can't wait for season 2!)



All TV Shows Reviewed in 2019

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
H = Hulu
I = On network’s own website
N = Netflix
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.)

Comedy
The Other Two (A, C, I) - Comedy Central
Weeds (A, N, S) - Showtime

Drama
Good Trouble (A, C, I) - Freeform
Unbelievable (N) - Netflix

Dramedy (both comedy and drama)
The Rookie (A, C, I) - ABC

Crime/Mystery/Thriller/Legal/Action
Dead to Me (N) - Netflix
The Enemy Within (A, C, H, I) - NBC
The Fix (A, C, H, I) - ABC
Imposters (C, N) - Bravo
In the Dark (A, C, I, N) - CW
Proven Innocent (A, C, H, I) - Fox
Stumptown (A, C, I) - ABC
The Widow (A) - Amazon

Sci Fi
Hanna (A) - Amazon
Manifest (A, C, H, I) - NBC
The Passage (A, C, I) - Fox

Sunday, January 12, 2020

Weekly Inspiration: 2019 Progress and 2020 Goals

I
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 2020.

As I explained in my Happy (Almost) New Year post two weeks ago, 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 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!

And if my goal-setting process doesn't feel right for you, last week's post, 5 Ways to Start the New Year Right!, offers plenty of other inspiring options from other bloggers for making your new year happier, calmer, and more compassionate.

So, here's my own summary - you can look back at my post My Progress in 2018 and My Goals in 2019 for details on last year's objectives, but I will try to sum those up here, too.

My Progress in 2019

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 2019:

Improved on or Did Well in 2019:
  • Lots of time with my husband - we met my goals for date nights, walks*, and traveling together.
  • Time with my adult sons AND especially, a trip (relaxing and at our own pace with daily naps!) to St. John, USVI, with them to celebrate our 30th anniversary.
  • Visiting new blogs.
  • Writing and editing a book and preparing it for publication (my goal was to publish the book in 2019, but computer problems prevented that in December. Finding a New Normal: Living Your Best Life with Chronic Illness will be published this month!).
  • Walking* 4x per week (this is possible thanks to treatments for Orthostatic Intolerance and for Immune System Dysfunction, which have both greatly improved my ability to tolerate exercise and exertion).
  • Muscle building* 3-4 times per week (lying down to keep my heart rate low, plus plenty of breaks).
  • Getting together with friends each week (most of the time)
  • Writing and working on my writing projects more often
  • Getting outdoors more often (my goal is daily, even if it's just 10 minutes lying on our deck)
  • Daily yoga (brief 15 min session, all done on the floor)
* 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.
Needs Improvement:
  • Stay connected to my mom and stepmom and stay in touch with long-distance friends.
  • Freelance writing (which took a backseat to my book in the 2nd half of the year).
  • Create e-mail lists for my blogs.
  • Go camping more.
  • Decluttering at home.
  • Trying new treatments for myself - my focus in 2019 was 100% on my son's health.
  • 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.
My Health in 2019
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 2019:
  • My average exertion level (on a 1 to 5 scale) was 3.8 (drumroll, please ...) - my highest ever since getting sick! Woohoo!! Given the treatments that have helped me to greatly reduce and almost eliminate post-exertional crashes, I know that this higher level of exertion means that I can tolerate more, not that I was ignoring my limits and crashing - see below).
  • Overall, my "how I felt" average was 2.4 (a 1 to 5 scale where 1 is great and 5 is badly crashed). This is decent, though not quite as good as my two best years, 2016 and 2017. There was a LOT of stress this year from my son's downturn in health, so I'm sure that was a factor.
  • I was crashed (a 4 or a 5 on my scale) just 5% of the time! This is absolutely great, though not my best year ever, which was 2017, with just 3% crashed. In contrast, my worst years--before finding effective treatments--were in the 25% range, meaning I was unable to function and couch-bound a quarter of the time (and not so great the rest of the time, either!). That 5% crashed this year mostly occurred in two periods, when I got viruses and/or bronchitis (which used to happen 5 times a year, so again a huge improvement), and I had many months with 0 crash days. This measurement translates to a HUGE improvement in my quality of life. I no longer crash badly due to over-exertion, and I rarely crash from exposure to infections. Again, you can read my full summary of treatments that have been most effective for my son and I.
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 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, time with my friends, resting when my symptoms flare, etc. My writing goals for 2020 are significantly different, with the book being published (and another in the works, on ME/CFS treatments), but I won't bore you with all those details.

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

1. Try New Treatments (this is an objective every year - I never stop searching for things that will help my son and I to improve our health & our ability to function). I was entirely focused on my son in 2019, after he pretty much hit bottom and moved back home in May (you can read more about his new symptoms, diagnoses and treatments here). That means I sort of ignored my own health, maintaining the treatments and routines I was already doing but not trying much new for myself.

2. 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
3. Improve Stamina (again, only possible because I first treated exercise intolerance)
  • I am continuing my goals of 10 min of yoga each morning, walk 4 times a week, and do some muscle work (usually lying on the ground to keep my HR down) 4 times a week. I had some tough times in 2019 when I couldn't do much due to back and shoulder pain, so I am working my way back to where I was. I have successfully improved both strength and stamina these last few years!
  • I am going to try again at doing a longer yoga session (30 min) once a month. I did not do this as planned in 2019, but I really think it will help with flexibility and my ongoing back issues.
  • Walk a 5k - yes, really! A friend with ME/CFS inspired me, and I am ready. It was a goal in 2019, but again, my focus was on my son and by the time I was ready, it was too cold out. in the spring!

We are each at a very different place 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. This 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!)

Have you set any goals or objectives for yourself for 2020? How was 2019 for you? What process do YOU use at the start of a new year? Please share in the comments below! 

Here's to a happy & healthy 2020 for us all, no matter how you approach it!

Sunday, January 05, 2020

Weekly Inspiration: 5 Ways to Start the New Year Right!

Happy New Year!

As I mentioned in my last Weekly Inspiration post, Happy (Almost) New Year!, I love the start of a new year and the feeling of fresh possibilities it brings. In that post (at the link), I outline how I start my own new year, by reviewing last year, revisiting my lifetime goals, and setting new (or continuing) objectives and targets for the new year. I'm just about done with that process and immersed myself in data this week (yay!) and will share the highlights of my progress (or lack thereof) in 2019 and my goals for 2020 later this week. That post includes links to step-by-step instructions on how you, too, can set achievable goals or change habits (baby steps!) in the new year.

But, I recognize that everyone is different, and the way that I start off a new year isn't for everyone. In this post, I am sharing four additional great ideas for starting your new year off right, whatever that means for you! Take a look at these ideas for kicking off the new year and choose what is most enticing or meaningful to you:

Happiness Calendar for January
Yesterday, I came across this Happiness Calendar on Bonnie's Books blog and instantly loved it! It's a calendar for this first month of the year with a simple activity on each day to boost your happiness. They are all things that even those with chronic illness can do (or easily modify for your own needs) that will help to boost your happiness in ways that will carry over to the rest of the new year! For instance, January 1 was "Find 3 good things to look forward to this year," and January 2 was "Make time to do something kind for yourself." Check out the full calendar at the link and bookmark it or print it for yourself. There is plenty of inspiration here to kick your year off well!

6 Steps to Write Your 2020
Chronic illness blogger Invisibly Me has a wonderful new year post called 6 Steps to Write Your 2020. While she includes some similar steps to my own process of reviewing the past year and planning for the new year, this post has some unique ideas and inspiration to help you start your new year off in a positive way - "new year, new perspective," as she says. She's got some great tips specifically for those with chronic illness on how to make this a good year for you.

How Will You Show Yourself Some Surefire Compassion in the New Year?
Another chronic illness blogger, Crafts, Chronic Illness, and Adulting has this inspirational post on How Will You Show Yourself Some Surefire Compassion in the New Year? that we can all use! What better way to start the new year than by being kinder to yourself and caring for yourself? Check out her post for some great ideas and inspiration.

All It Takes Is Intention and Extreme Permissiveness
Julie, aka the ME/CFS Self-Help Guru, re-shared a great new year's post from last year (originally an article she wrote for ProHealth) with an entirely different approach to the new year, All It Takes Is Intention and Extreme Permissiveness. In it, she outlines a gentler way to look at the new year, with self-care the uppermost priority and a focus on listening to your body. Boy, do I need this one!

How do YOU plan to start the new year? Do you have your own planning process or way to refocus on your priorities? Please share in the comments!

Happy New Year to all! Here's to a healthy and happy 2020 for us all.



Monday, December 30, 2019

Movie Monday: Star Wars: The Rise of Skywalker

The day after Christmas last week, while our adult sons were both still around, all four of us went to see Star Wars: Episode IX - The Rise of Skywalker at one of our local recliner theaters. As "the last episode of the saga," it was fitting that we all got to see it together, since we watched the older Star Wars movies with our sons on VHS when they were young, and went to see Episode VIII, The Last Jedi, together around Christmas in 2017. We all enjoyed this fast-paced, satisfying end to a movie series that has been with us all for decades.

I'm going to go easy on plot descriptions here and just stick to the set-up to avoid any spoilers at all (so feel free to keep reading!). This final movie in the original series picks up where The Last Jedi ended. Rey, played by Daisy Ridley, is continuing her Jedi training with Leia, played by Carrie Fisher (with the help of some movie magic, since she died a couple of years ago), in a large Jedi encampment. Meanwhile, Kylo Ren, played by Adam Driver, who is now in charge of the Dark Side, discovers that Emperor Palpatine (older than ever) is still alive and pulling the strings behind the scenes. He has a plan and a hidden warship armada ready to take over the world. Palpatine orders Kylo to kill Rey. The Jedis get wind of what's going on with Palpatine, and Rey, along with Finn, played by John Boyega, and Poe, played by Oscar Isaac, take off together in the Millennium Falcon, along with classic Star Wars star, Chewbacca, and droids C-3PO and BB-8. They are in search of a Sith wayfinder, a hidden artifact like one that Kylo found that can lead them to Palpatine. And, from there, the race is on! Kylo is trying to kill Rey (though he has some seriously mixed feelings), Palpatine is trying to take over the world, and the Jedi are trying to save the world. Hijinks ensue. Plus lots of flying, battle scenes, and some witty droid banter.

Director J.J. Abrams and the rest of the creators have stuffed a lot into this 2+ hour movie! The action is non-stop, with quick scene switches. Don't blink or you'll miss something (and use the bathroom before the movie starts). It is classic Star Wars stuff. Though the plot sounds like it focuses on the newer characters, almost all of your old favorites make at least a brief reappearance (though, yes, many of them are dead). There are ghosts and visions and old friends--and listen carefully for Yoda. I think the only older character who didn't come back was Jar Jar Binks (for obvious reasons). That part is a lot of fun, seeing where the oldies pop up, and there are plenty of fighting and battle scenes to satisfy those who love the action and thrills of the series. It certainly kept our interest, and there are no slow moments. We all felt that it was a fun, exciting, and very satisfying conclusion to a great series that's been a part of our lives (at least my husband and I) since the 70's. This is definitely one to see on the big screen!

Star Wars: Episode IX - The Rise of Skywalker is currently playing in theaters and should remain for longer than most, given its popularity. It will probably be release to streaming and on DVD around February/March.



Find the times and locations (and a recliner theater!) near you through Fandango:


Sunday, December 29, 2019

Weekly Inspiration: Happy (Almost) New Year!

I love the start of a new year, that feeling of a new beginning. I love starting a new calendar (I am still using paper) and the week between Christmas and New Year, with finally some spare time to get my life in (a bit of) order. And I love looking back on the year past and looking forward to the new year ahead and what I want it to look like.

Every January 1 (or thereabouts), I sit down to review the past year, not only checking how I did against the goals and objectives I set but also reflecting on how the past year felt. I read through some old journal entries and do some free writing - just handwriting for a few pages about what challenges and joys the past year brought and how each part of my life (relationships, writing, travel, etc.) moved forward (or back).



Since I used to be an engineer and am still hopelessly analytical, I also do a little number-crunching. I have Excel spreadsheets not only for my objectives and targets but also for how I felt and how active I was. I use a simple tracking system, just marking down a number 1 to 5 (1 being great and 5 being badly crashed) in the corner of the date on a calendar at the end of each day, plus ratings (1 to 5) for activity level and stress level (I learned over the years that the two combined provide an estimate of exertion). So, at the end of the year, I look back to see how well I felt and how active I was and then compare that to previous years. It's mostly been a positive trend most years!

I don't do New Year's Resolutions. Instead, I have six Lifetime Goals, and each year, I set objectives for each of them (some new & some ongoing), plus specific, measurable targets for each objective. I explain this simple process in this article I wrote for ProHealth, Setting Goals When You Are Chronically Ill. That article both explains my process and provides some examples. When you are chronically ill, your goals tend to be quite different than those of healthy people. For instance, I always have an objective to rest more and listen to my body - you won't see that one in any Today Show episode on New Year's Resolutions! Your own objectives may include starting a new hobby, connecting with people online, trying new treatments to improve your health, or whatever is of interest to you.



The fresh start of a new year is also a great time to think about changing habits. Again, this doesn't have to be a big deal, all about willpower and pushing through. Instead, habit changes are easier (and far more likely to last!) when you make tiny changes, using baby steps to gradually move toward the habits you want to adopt. Again, I explain this process in detail and provide examples in an article I wrote for ProHealth, Strategies and Tools for Changing Habits.

Seeing the years pass by with no progress toward my goals or changes in my life was depressing in the early years of my illness, until I figured these things out and realized that I didn't have to give up goals and self-improvement because I was chronically ill. I just needed to figure out how to fit a simple process to my restricted life.

How do YOU start the New Year? I would love to hear about your own traditions and approaches to greeting that fresh start each year.

I like to ring in the New Year with a good book!

Friday, December 27, 2019

I Survived Christmas! (Barely)

The Highs and Lows of the Season of Celebration:

Here we are, two days after Christmas, and I am beginning to feel better, getting closer to my "normal" baseline (which is pretty good). Christmas is always a double-edged sword for me--enjoyable time with my family but also exhausting preparations and work--but this year was a bit more challenging than usual.

We took a fabulous family vacation during Thanksgiving week, a trip to St. John in the US Virgin Islands with our adult sons to celebrate our 30th anniversary this fall. It was a wonderful time spent together in a spectacular, beautiful, and unique place. I am trying to conjure up those lazy, warm days now...

We enjoyed our relaxing week on St. John
The downside was that we got back and all of a sudden, it was December 1 and the start of the Christmas season! Thanksgiving was extra-late this year, so this abrupt re-entry was made even worse. Suddenly, it was just three weeks until Christmas, and I needed to get everything done: buy gifts, order cards and calendars and other photo gifts, plan for the holiday, get groceries, wrap gifts, send cards out, cook ... you know how it goes. This is the challenge of feeling a bit better with ME/CFS--I can do more but am still not able to do what other people do. It's a tough balance to get right, and I often end up doing too much.

We did manage to find a few hours when all four of us could get together, so we were able to enjoy our annual tradition of decorating our Christmas tree together. This is something we all love to do. Our ornaments are all memories--of trips, childhood, family members--so it is fun to go through them together.


Our finished tree!
Two weeks before Christmas, my laptop suddenly stopped working. It was a Christmas gift last year, so not very old, but the keyboard wouldn't work at all, not even allowing me to type my password. I called Apple, they sent me to the Genius Bar, and they said it would need to be sent out for repairs. I should have it back in a week, they said. A week?? My whole life is on my laptop. I don't even own a smartphone or tablet; the laptop is IT. I figured I could at least get all this Christmas stuff done. Send cards? My address list is on the laptop. Finish buying gifts? My gift and shopping lists are on the laptop. Start my year-end DVD that I give to family as gifts? Yup, you guessed it--all my photos are on the laptop. So, basically, I lost about 5 days (they got it back to me quicker than expected), which put me even further behind.

So, despite my annual promises NOT to wait until the last minute, I was doing everything at the last minute! On Christmas Eve day, I was just starting to wrap gifts, finishing the last of the cards (into the mailbox moments before the mail truck came by!), and cooking in preparation for the next day.

We enjoyed a nice, quiet Christmas Eve. Our younger son had to work, and my father-in-law wasn't feeling well, so just my husband, older son, and I went out to dinner and then to an early evening church service. This is the son who's been struggling this year (he has both ME/CFS plus tick infections), and he commented later that church was probably too much for him that night. Because he'd been feeling so poorly, he started his Christmas shopping on Christmas Eve at noon! Definitely too much for him to manage, let alone in one day. We were home by 8:30 though, and the three of us enjoyed a bit of downtime together on couches and recliners, with herbal tea for our sore throats, a cookie treat, and the Christmas episode of Modern Family for some laughs.

On Christmas day, we look forward to a quiet, low-key morning and afternoon in our own home. Except that when my husband brought his 94-year-old dad into the house this year, he got sick. Our special Christmas breakfast was delayed for a major clean-up operation (plus some extra paranoid antibacterial wipe action!). My father-in-law was shaky but OK after that, and the over-the-counter medication helped him, but we got off to a very late start. In some classic brain fog moments, I lost three of my husband's gifts--hid them so well apparently that I couldn't find them! I also put his lottery scratch-offs (a tradition) in my son's stocking (who wondered why he got so many). No worries, though. I found my husband's gifts at about 10 at night, and none of the lottery tickets were winners anyway!

Late afternoon on Christmas Day, my mom and her husband arrived from out of town for dinner. I love having them here for the holiday, but as usual, I was pretty wiped out by then. I got up from my late nap and had to jump into action to get dinner ready. My husband and my mom both helped (and my well son, too), but it was a lot of work and way too much time on my feet. Everything was ready to go when we realized the turkey was underdone and had to go back in the oven for another 20 minutes! You get the idea.

After some missteps, we finally all sat down to dinner on Christmas!
I don't mean to sound like I'm complaining because I am very grateful for my family and that I am well enough to do all this at all (there were years when I wasn't), but by the time I went to bed (WAY past my normal bedtime!), I was in bad shape - exhausted, achy, sore throat, shaky. You know the drill. I do want to mention also that I am very grateful for my husband, who did most of the wrapping and grocery shopping and half the cards, plus loads of other stuff this season.

I didn't feel much better the next morning, but by 11 am, our visitors had left and the house was quiet. I lay down flat on the couch, with my feet elevated, sipped a cup of herbal tea, and began to recover. Fortunately, we had leftovers for both breakfast and dinner yesterday, and my son and I enjoyed our favorite lunchtime smoothie, which soothed both our throats. With a very long nap yesterday (and no cooking!), I was able to enjoy an evening trip to see the new Star Wars movie. The four of us all went together and loved seeing the ending to the series we have enjoyed for so many years. Thank goodness for recliner seats in theaters now!! My son and I both said we couldn't have done it without those last night.

So, the holiday season is almost passed. We have a couple of meet-ups with friends today (fingers crossed!) with time in between for napping and resting. I love the week between now and New Year's, when there is nothing going on, and I can just recover and get ready for the new year.

Next year, I swear I will start holiday preparations earlier and not wait until the last minute! Barring unforeseen crashes of both the human and computer types, of course.

We have had lots of time together with our sons, which is getting rare these days, and I cherish that.

How is your holiday season going? Are you holding up OK? Finding ways to celebrate within your limits? If you have any tips for next year, I'd love to hear them!

Enjoy the season!

Monday, December 16, 2019

Movie Monday: Knives Out

With travel, vacation, and holiday preparations, my husband and I hadn't been out together in quite a while, so we invited friends out for dinner and a movie on Friday. We went to see Knives Out, a new humorous whodunit with a great cast.

The set-up is classic detective story: a well-known mystery writer named Harlen Thrombey, played by Christopher Plummer, is found dead (throat slit) in his attic office, after an evening birthday party where his entire greedy/selfish family was in attendance. Is it suicide or murder? Two police detectives and a quirky PI, played hilariously by Daniel Craig, are investigating and interviewing the family members and staff. They soon rule out suicide, but who did this gruesome deed? Each family member seems to have a motive. Daughter Linda, played by Jamie Lee Curtis, seems upset by her father's death, but her husband Richard, played by Don Johnson, had a fight with Harlen at the party over revealing his affair with the housekeeper. Their son Ransom, played by Chris Evans, had a loud argument with his grandfather the night before, and the rest of the family thinks he was cut out of his will. Harlen's son Walt, played by Michael Shannon, runs the publishing company that his father's books made prosperous ... but what if Harlen fired him the night of the party? And Joni, played as a hippie-type by Toni Collette, is Harlan's ex-daughter-in-law, but she, too seems to have had an argument with him that fateful night. Finally, at the center of this extremely dysfunctional family is Marta, played by Ana de Armas, a kind, sweet young woman who was Harlen's beloved nurse. Each family member is interviewed by the investigators, as the audience considers one suspect after another. Suspense and secrets abound!

This is a classic whodunit but with tongue firmly in cheek. Each family member is almost like a caricature of his or her type, played with relish by this outstanding team of actors. The house itself is, as one detective describes it, "like a Clue board," filled with secrets and peculiar accents, like the large sculpture of knives that serves as a backdrop for the family interviews. It's a twisty, funny romp of a mystery that kept us guessing right till the end. As one of the hosts on Pop Culture Happy Hour (a favorite podcast of mine) described it, this movie is like Murder on the Orient Express--the way it should have been done, with its all-star cast and quirky detective. All four of us enjoyed it and laughed a lot. It's just plain fun, perfect for this holiday season and a great movie for the whole family to watch together!

Knives Out is currently in theaters and is great on the big screen, since the setting, house, and people are all filled with so much personality. See it in a local recliner theater, like we did!


Find tickets and showtimes on Fandango.

 
Just watch the trailer and you'll be smiling:



Sunday, December 15, 2019

Weekly Inspiration: Managing - and Enjoying - the Holiday Season

Things have been quiet here on the blog because my beloved laptop was in for repairs for the past week, an unexpected challenge! Now that I have it back (safe and sound and with all data intact), I thought it was a good time to share some tips on managing--and even enjoying--the holiday season while living with chronic illness.

I was already feeling more than the usual pre-holiday pressure this week because Thanksgiving was so late this year, meaning an even shorter Christmas season, and we were away on vacation during Thanksgiving week--a much-needed and wonderful break--that meant I was even less prepared than usual to jump into Christmas preparation. So, when my laptop quit on me this week, and Apple said they had to send it away for maybe a week, I panicked! For starters, that morning that I found I couldn't even type in my password was the day I'd set aside to publish my new book, Finding a New Normal: Living Your Best Life with Chronic Illness. So, clearly, with all my files locked into my laptop and inaccessible, that wasn't going to happen! I thought, OK with no writing work possible, I can get all my Christmas stuff done. Write out cards and send them? Address list on the laptop. Finish buying gifts? Gift and shopping lists on the laptop. Start my end-of-year DVD and photo books? All my recent photos on the laptop. And on and on--I was pretty much dead in the water for now.

Luckily, after living with ME/CFS for 17+ years, I know how to deal with these kinds of unexpected challenges. I call it A Plan B Day and rearrange my priorities (the article at the link explains my approach in detail). Usually, my challenges are health and body related, but my computer woes fit the model, too! In this case, I reluctantly realized my book is not going to get published this year (look for it in early January). So, when you have plans for the holidays and your body just won't cooperate, try it for yourself ... declare a Plan B Day, make alternate plans, and focus on taking care of yourself.

I have also been struggling with a cold virus that made its way through our family after vacation. My younger son and husband (both otherwise healthy), caught the cold and are feeling better by now. For my older son and I, we rarely "catch" viruses due to the immune dysfunction (like many with ME/CFS), but being exposed can make us crash. For me, this time, since we've made a lot of progress in normalizing our immune systems, I have had mild symptoms on and off for over a week now. This also required some Plan B rearranging, since some days I woke with a sore throat and aches and some days I felt good! My husband kindly offered to do things like grocery shopping, and I did my best to listen to my body each day. Here are our strategies for dealing with viruses-- both how we've improved our immune function and how to treat when we are exposed to a virus. "Tis the season!

Even if you can get through the holiday season without viruses and crashes, spending lots of time with extended family and friends who may not understand your life with chronic illness is another common challenge of the season. This article, Managing Family Relationships: Holidays and Beyond includes lots of tips (from hard experience) to help you not only survive holiday gatherings but even enjoy them.

Fortunately, most of our holiday time this year will be spent at home, just the four of us, which is wonderful (and far easier). This week, we put up and decorated our Christmas tree (see photo at the top), which is one of our favorite parts of the season. We had to do it at lunchtime on a Wednesday to get everyone there, but it was worth it! And now that I have my laptop back, I have a lot to get done, but I'm going to continue to pace myself and listen to my body.

What are YOUR tips for managing the holiday season?
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Monday, December 09, 2019

'Tis the Season...for Viruses! How to Prevent the Crashes that Result

For many people with ME/CFS, fall and winter mean long periods of relapse or "crashes." This seasonal slide downward is usually due to exposure to viruses and other infections that ramp up this time of year. My son and I have successfully eliminated this annual downturn. We used to both spend weeks (or months) at a time this time of year totally flattened, him missing school and me struggling to care for us both. No more! Now, these "virally-triggered" crashes are rare for us and much milder when they do occur, thanks to a number of simple and inexpensive treatments.

As an example, our family returned from a lovely week's vacation last week ... and brought a cold home with us! Our younger son (healthy now and recovered from ME/CFS) got hit hard (and first) by it, and was still struggling with congestion this weekend. His dad fell next, with heavy fatigue and bad cold symptoms. Our older son (ME/CFS and 2 tick infections) did crash last week from exposure to the virus, but he bounced back after a few bad days, and drove to see his girlfriend three hours away this weekend! I was the last one hit and woke yesterday with all my classic ME/CFS on high (and now, rare) alert: severe sore throat, swollen glands, and flu-like aches. I'm already feeling better today, though.

Ironically, most of us with ME/CFS rarely catch viruses, but just being exposed to them makes our immune systems go into overdrive, causing the crash symptoms so familiar to all of us. This is all due to the specific kind of immune system dysfunction that is present in ME/CFS, described in detail (in layman's terms) at the link.

Although researchers haven't yet figured out how to fix our immune systems (or those of anyone else with immune disorders), there are treatments that can help to normalize the immune system. All of them are cheap and some don't even require a doctor or prescription. Three treatments in particular have resulted in this dramatic improvement for us over the years, as described here:


That post also includes our tips on what we do in the rare instances like this week, when we have been exposed to a virus and are reacting to it (one thing that helps us a lot is olive leaf extract).

You, too, can transition from losing your whole winter to long crashes to making virally-triggered crashes rare (and mild).

Please let me know what has worked for you and if you have tried any of the treatments that have helped us so much!

Tuesday, December 03, 2019

Multiple Your Impact on ME/CFS on #GivingTuesday

I'm a little late posting today (catching up after a lovely family vacation), but there is still plenty of time left today to contribute to ME/CFS research and advocacy on #GivingTuesday ... AND here are three great opportunities to double or triple your donation, so even a small amount makes a difference!
  • Open Medicine Foundation Triple Giving Tuesday - from October 22 all the way until December 3, OMF will TRIPLE your contribution to ME/CFS research, thanks to several generous donors who offered to match donations up to $666, 666! The name refers to the annual tradition of Giving Tuesday, December 3 this year, the day after Cyber Monday, but donations will be tripled EVERY day between now and then. Just click the link to make your donation. It doesn't have to be a lot - every little bit helps, especially when it is tripled!
  • Solve ME/CFS Initiative Double-Your-Impact Challenge - thanks to several anonymous donors, any donation you make to Solve ME/CFS from now until December 31 will be doubled, up to $750,000! They are hoping to meet a goal of $1.5 million in total donations by the end of the year. Just think of all the great research that can be done with that money!
  • #MEaction Tripled Donations - Today only, all donations made to #MEAction from any platform will be tripled, thanks to a generous matching pledge! In addition, if you donate through Facebook, the social media platform has agreed to double all donations made today through Facebook, up to $7 million, so your donation could be quadrupled! #MEaction does some great work on advocacy, helping patient voices to be heard.
These are three outstanding opportunities to make your money go further and give a gift that will help all of us this holiday season! Click the links to donate TODAY, watch your donation get doubled or tripled (or quadrupled), and contribute to important ME/CFS research. You can even share a link with family and friends and tell them that THIS is what you want for your holiday gift.

Almost all of the amazing research breakthroughs in ME/CFS in recent years have come from private donations (and much of it from those top two excellent organizations), so this is a great way to keep the science moving forward...for a happier New Year for all of us!

Happy Holidays and Happy Giving!

Sunday, November 17, 2019

Weekly Inspiration: The Joys of Community

I only have a few minutes this morning (leaving on a trip later today and then another one later this week!), but I wanted to share our wonderful evening last night. Our family hosted a potluck dinner for our local/regional support group.

Some brief history: this group began with some "mom's lunches" back in 2010 with five of us moms whose kid(s) had ME/CFS and an assortment of other diagnoses. That led to a potluck dinner where our families met ... and our group was born! Since then, we have to grown to about 40 families in our region (DE, NJ, MD, and PA), with both sick adults and sick kids and a variety of related medical conditions, like ME/CFS, EDS, fibro, Lyme, and POTS.

Last night, we had 13 people here. Some were old friends (including two from that original group), but we also had three people who were completely new to our group: one who's had ME/CFS for over 20 years, one who's not only living with ME/CFS but also researching genetics in grad school to help find answers for us, and another who has no solid diagnosis yet but whose multiple symptoms were familiar to all of us. Old friends and new ones caught up, got to know each other, and traded information. With plenty of seats, lots of options for those with food intolerances, and a heaping scoop of empathy all around, everyone talked for hours. Information on local doctors, effective treatments, school issues, and more flew back and forth, with lots of note-taking and promises to text or e-mail details.

Yes, in case you're wondering, it was exhausting ... but well worth it! Even my husband, who is the healthy one here, is tired this morning, but it means so much to us to be able to help others--and to make such wonderful new friends, too. We keep learning new things, as well. Being around others who so completely understand your crazy, unusual life is so comforting and affirming. Toward the end of the evening, one guy said he needed to leave, and a bunch of us said, "Oh, yeah - we can see that! You're definitely going downhill. Take care of yourself." He said it was such a strange experience, for everyone else at a gathering to "get it" and understand instead of pressuring him to stay or saying he'd be fine.

So, once again, I want to encourage all of you--wherever you are-- to find your people! Whether you can interact in person like our group last night (and again, this was a rare outing and social interaction for many) or only online, it is SO rewarding and supportive to "meet" others like you. And, it might just help you to improve your physical condition, too--much of our talk last night was telling each other about the treatments that have helped the most. Our original group of five families included seven kids and teens who were all moderately to severely affected by ME/CFS; thanks in large part to the advice and support from this group, four of those kids are now young adults either in college or graduated. Many others have come and gone as they've improved and been able to live their lives again. The benefits of community are both physical and emotional.

How do you find your people? Check out this article I wrote for ProHealth, Birds of a Feather: The Joys of Community, that details some ways to find others in your local area, for in-person or online interactions.

Thursday, November 14, 2019

Double or Triple Your Giving This Season!

In this season of giving, there are two great deals going on right now to double or triple your contribution to ME/CFS research:
  • Open Medicine Foundation Triple Giving Tuesday - from October 22 all the way until December 3, OMF will TRIPLE your contribution to ME/CFS research, thanks to several generous donors who offered to match donations up to $666, 666! The name refers to the annual tradition of Giving Tuesday, December 3 this year, the day after Cyber Monday, but donations will be tripled EVERY day between now and then. Just click the link to make your donation. It doesn't have to be a lot - every little bit helps, especially when it is tripled!
  • Solve ME/CFS Initiative Double-Your-Impact Challenge - thanks to several anonymous donors, any donation you make to Solve ME/CFS from now until December 31 will be doubled, up to $750,000! They are hoping to meet a goal of $1.5 million in total donations by the end of the year. Just think of all the great research that can be done with that money!
These are two outstanding opportunities to make your money go further and give a gift that will help all of us this holiday season! Click the links to donate TODAY, watch your donation get doubled or tripled, and contribute to important ME/CFS research. You can even share the link with family and friends and tell them that THIS is what you want for your holiday gift.

Almost all of the amazing research breakthroughs in ME/CFS in recent years have come from private donations (and much of it from these two excellent organizations), so this is a great way to keep the science moving forward...for a happier New Year for all of us!

Happy Holidays and Happy Giving!

Tuesday, November 12, 2019

TV Tuesday: Stumptown

One of the new TV shows I mentioned in my Fall 2019 TV Preview was Stumptown on ABC, and it has turned out to be our favorite new show of the fall and one of our overall favorites this season, new and old. We are loving this action-packed, suspenseful, yet warm and funny show with a great cast.

Cobie Smuldors (of How I Met Your Mother fame) stars as Dex Parios, a Marine vet in Portland, OR, with PTSD. She cares for her adult brother, Ansel (played by Cole Sibus), who has Down Syndrome. The two of them often hang out (and Ansel works at) a bar called Bad Alibi, owned by their good friend, Gray, played by Jake Johnson (familiar as Nick from New Girl). In the first episode, the head of the local Indian casino asks Dex to track down her granddaughter who's been kidnapped. Its a twisty, convoluted, and dangerous case, and along the way, Dex works with (and hooks up with) Detective Miles Hoffman, a cop played by Michael Ealy (who we enjoyed in Almost Human and The Following). By the start of the second episode, Dex has decided she wants to be a private investigator. Although trouble seems to follow her everywhere, she is scrappy and determined and feels like she could be good at being a PI. The rest of season one (so far) follows her as she trains, gets her PI license, gets in way over her head, and tackles bad guys.

Stumptown is based on a graphic novel series by Greg Rucka, and we are loving the TV adaptation so far! Yes, it's a detective show with mysteries and action in every episode, but it is also warm and very, very funny. Even better, it is accompanied by an '80's soundtrack with hilarious timing, since Dex's old Mustang has a mix tape stuck in the cassette player that starts playing at the most inopportune (and funny) moments. Smulders is outstanding in this starring role, as a bad-ass Marine who always gets into trouble but still solves her cases. The rest of the cast is great, too, also including Camryn Manheim as the police lieutenant. Dex seems tough on the outside, but her loving relationship with her brother and friendship with Gray show her softer side. There is at least one big fight in each episode and often a car chase, too, which are not typically my cup of tea, but it is all done with a sense of humor and fun. You can see what I mean in the trailer below. The bottom line is that Stumptown is one of our favorite shows on TV right now, and we look forward to each new episode and watch it as soon as it hits On Demand.

Stumptown airs on ABC Wednesdays at 10 pm, and is available On Demand and on the ABC website (looks like the first five episodes are available there right now for free). It is also available on Amazon for $1.99 an episode or $19.99 for the first season.



I've seen this trailer several times, but it still makes me laugh every time!