Thursday, February 27, 2020

Research Update - February 2020

My browser has about twelve open tabs currently, and eight of them are "new" research studies on ME/CFS. They have been sitting open and cluttering up my laptop's browser for a long time (some a very long time!) because I wanted to be sure to both read (or at least scan) them myself and share them here with other patients.

The good news is that there is a lot of medical and scientific research happening in the ME/CFS world, and it is in a wide variety of different aspects of the disease: exercise intolerance, immune dysfunction, and more. Such a wealth of growing knowledge means that experts are slowly but surely learning more about what is behind our very complex disease ... which means that advances in diagnosis and treatment will be following.

There is a lot here, so I will stick to some brief summaries and links to more information:

Immune System Dysfunction

Mast Cell Neural Interactions in Health and Disease
This paper from last year provides a summary of mast cell interaction with the nervous system through various means. It is a review article, which means that its authors didn't do any new research themselves but instead wrote this paper to pull together the findings of many different studies. This type of review article is very helpful, as it takes lots of different studies and summarizes all their findings together, providing an overall picture of one aspect of a disease process. If you are not familiar with Mast Cell Activation Syndrome (MCAS), take a look at this earlier blog post where I explain what it is and provide treatment tips (often inexpensive, over-the-counter meds) and links to more information. MCAS is a part of the immune dysfunction in many patients with ME/CFS, and treating it can sometimes bring dramatic improvements.

ME/CFS as a Hyper-Regulated Immune System Driven by an Interplay Between Regulatory T Cells and Chronic Human Herpesvirus Infections
This study from the UK, published at the end of 2019, builds on the well-known theory that ME/CFS occurs when a triggering infection (often a very common virus) causes immune system dysfunction in those who are prone to it (other studies show this is probably a genetic predisposition). This team focused in on just a few of the common herpesviruses (HHV-6, HV-1, EBV) and on the response of the body's CD4+ T cells, a component of the immune system. They developed a mathematical model that could potentially mirror what is happening in the immune system of someone with ME/CFS. While this study is somewhat limited--we already know that a wide variety of infectious agents in addition to those three can trigger ME/CFS to start--it provides a start for scientists to better understand what is happening in the dysfunctional immune systems of ME/CFS patients. And the better they understand our disease, the closer we will get to treatments or even a cure.

ME/CFS Patients Exhibit Altered T Cell Metabolism and Cytokine Associations
Like the last paper mentioned just above, this one focuses in on the details of the immune system dysfunction, which is central to ME/CFS. This was a single study, measuring different types of cells that are a part of the immune system and their responses in ME/CFS patients, including CD4+ (also examined in the previous study) and CD8+ cells. The details are a bit complicated, but again, this study is another step in the direction of better understanding the immune dysfunction that is at the heart of our disease. This blog post provides a simplified explanation of immune system dysfunction in ME/CFS - it is important to understand just the basics so that you can treat immune dysfunction and help to normalize your immune system, which will help all symptoms.


Exercise Intolerance and Orthostatic Intolerance

Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in ME/CFS
This paper from the University of the Pacific, which has done outstanding work on exercise intolerance in ME/CFS for decades, is another review article, where the authors examine and summarize the findings of many different studies of exercise intolerance in ME/CFS. Through this process, they identified a new factor to our Post-Exertional Malaise (PEM aka exercise intolerance): chronotropic intolerance, "an inability to appropriately increase cardiac output because of smaller than expected increases in heart rate" during exercise. They came to this conclusion by noting differences between ME/CFS patients during standard 2-day exercise testing (CPET) compared to normal controls and even to cardiac patients. They also concluded that because of this, exercise tests that are supposed to be "sub-maximal" (i.e. not up to maximum effort) are probably well over maximal for those with ME/CFS. If you do not yet know about orthostatic intolerance (OI) and how it affects ME/CFS and exercise intolerance (and how to treat it!), check out this blog post on OI. Treating OI often helps to improve all ME/CFS symptoms, sometimes dramatically, and can allow you to be active again without crashing afterward. This post provides more information on how to use a heart rate monitor to help prevent crashes (which will be easier to do after treating OI). The findings of this study fit with what I wrote in those two blogs posts - people with ME/CFS have a lower-than-normal anaerobic threshold (AT), and standard formulas for calculating AT are likely to be inaccurate for us (adjustments are included in the post).

Norwegian 2-Day ME/CFS Exercise Study Adds Crucial Factor to Exercise Intolerance Findings
Unlike the other research links shared here, this one is not to an original research paper (which are written for scientists) but to an excellent summary, written by Cort Johnson, ME/CFS patient, advocate, and writer. Cort has a real talent for taking complex subjects and explaining them clearly for us laypeople. Here, a recent 2-day exercise test (the gold standard for showing PEM) had a new finding add to the growing body of information on exercise intolerance: in ME/CFS patients, our levels of lactate production immediately increase as soon as we start to exercise. This is yet another piece of evidence that people with ME/CFS switch from aerobic (with oxygen) to anaerobic energy production very quickly. This is not a new conclusion but adding yet another measurable data point can help future studies to learn even more about why even mild exertion makes us "crash."

Energy Production

The Role of Mitochondria in ME/CFS
This is a clear explanation, thanks to the ME Association in the UK, of what the mitochondria do in the body (create energy) and how they are dysfunctional in ME/CFS. It is meant for patients and others to better understand what is happening in our bodies and what research has told us so far about the nature of ME/CFS. There is nothing really new here, but it provides a nice summary, all in one place, of a lot of interesting research results and how energy production works.


Whew, that cleans up my browser quite a bit! But more importantly, all this new research is growing proof that scientists and doctors are learning more about our disease every day. I find the number of research studies in the past few years truly encouraging; it gives me hope for a better future for all of us.

Tuesday, February 25, 2020

Celebrate Mardi Gras - From Your Couch!

Float in a parade on Canal Street - Mardi Gras, New Orleans, 1988
Today is Mardi Gras day - we used to live in New Orleans, so this is a major holiday at out house! We had our annual party with a few friends (many of whom also lived in New Orleans when we did) on Saturday, and today, we will finish off the season with our annual tradition of Popeye's at a friend's house (yes, Popeye's is authentic Louisiana food!).
 
Want to join the fun today? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and, of course, some great books! You can also check out my column in Shelf Awareness from last year that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.
 
Great Adult Books Set In/About Louisiana (additional titles in my article linked above):
Middle-Grade and Teen/YA Books Set In/About Louisiana:
  • Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
  • The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
  • Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
  • Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows
  • Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
  • NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand.
  • You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
  • Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great video clips) at www.mardigras.com.
One of the locals in Louisiana
Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!

Crawfish!
Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do TODAY! Or save it for tomorrow if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best.)
Me & my sons, about 10 years ago

Tuesday, February 18, 2020

NEWLY UPDATED: Facebook Groups for ME/CFS

Connect with others from your couch, recliner, or bed!
Ah, I have been neglecting this blog lately (and my book blog, too!). I have been working hard to finish formatting my book for print, so that I can upload it and make it available in paperback. I had hired a formatter earlier this year, but she spent three weeks on it and then quit abruptly, leaving me with a half-finished print book. Though I have used Word for over 35+ years as a basic word processor, I knew absolutely nothing about how to use its more complicated formatting functions ... nor what to do when it seemed to have a mind of its own! Thanks in great part to Google and the global online community, I think I have finally solved my unsolvable formatting problems. I just have to do one more thorough proofing, save it as a pdf file and hope that doesn't mess everything up, and then I can finally upload it to Amazon and other vendors. It should be available in another week or so, and the e-book is available NOW on multiple platforms.

In the meantime, a friend let me know today that an older post of mine from 2011, New Online Groups for Teens and Parents, had links in it that weren't working right anymore, so I updated it today. In addition to fixing the existing links and deleting ones that no longer worked, I also added some new groups to the post. So, it is now an up-to-date list of many of the best groups for ME/CFS patients on Facebook, with a special focus on groups for young people (though there are groups included there for everyone).

If you are not on Facebook and have no desire to be, some people set up an account with a pseudonym (some use their first and middle names or just make something up) and a fake birthdate and only use their account for interacting with other patients in the many groups available. I explain in that post how life-changing it was for me and for my son to connect with other people like this, so I highly recommend you give it a try!

And, I only included a small list of the groups I know best, but if you know of other online groups (on Facebook or elsewhere) that you'd recommend for ME/CFS patients, please leave them in the comments below.

Saturday, February 08, 2020

Now Available! Finding a New Normal: Living Your Best Life with Chronic Illness.

It's finally here! My new book: Finding a New Normal: Living Your Best Life with Chronic Illness.


From Sue Jackson, the author of the popular and award-winning blog Live with ME/CFS, comes a book to help you live your best life with chronic illness. Based on Sue’s almost 20 years living with chronic illnesses in her own family, writing her blog, writing articles on chronic illness, and leading multiple support groups, she provides support and practical advice you can use.
Whether you are in the early days of living with chronic illness or have been at it for years (or decades), there are always challenges in living a life framed by limitations and restrictions, where isolation is a common issue. This guide provides inspiration, advice on emotional coping, and guidance on living your best life with chronic illness from someone who’s been there. Though it seems impossible at first, your life will eventually settle into a new normal, and while that life may be different than the one you had planned, it can still be a vibrant, fulfilling life based on strong relationships, a healthy emotional state, and finding joy in every day. The emphasis in this book is on LIVING your life, not just enduring it.
ORDER NOW!
On Amazon:
Order in Print - COMING SOON!
On Barnes and Noble:
Order in Print - COMING SOON!


 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.
Suzan Jackson is a freelance writer whose work focuses on topics related to health, family, travel, and media reviews and has appeared in many magazines, websites, and anthologies. She has had ME/CFS, an immune disorder, since 2002, and also has Lyme disease. Both of her sons also became ill with ME/CFS in 2004. Her younger son is now fully recovered, after 10 years of mild illness. Her elder son, who recently graduated from college, still has ME/CFS as well as three tick-borne infections. Sue and her sons managed to improve their conditions with a number of treatments. She runs several support groups, both online and locally, to help others. Sue writes two blogs: Live with ME/CFS (this one!) and Book By Book. You can see Sue's other published work at her writer’s website, www.suzanjackson.com, and follow her on Twitter at @livewithmecfs and on Facebook.

Tuesday, February 04, 2020

TV Tuesday: Lincoln Rhyme: Hunt for the Bone Collector

My husband and I were thrilled to see that NBC was bringing one of our favorite book series to the small screen this winter: the series of mysteries/thrillers by Jeffrey Deaver, starring paraplegic criminologist Lincoln Rhyme. The new series is called Lincoln Rhyme: Hunt for the Bone Collector, referring to the main character and the title of the first book in the series. Featuring a great cast and suspenseful mysteries, we are thoroughly enjoying this new show so far.

In the beginning of the first episode, we see how Lincoln Rhyme, played by Russell Hornsby, came to be in his current state, confined to his home. While tracking a serial killer dubbed The Bone Collector, the killer gets the best of Lincoln, and the detective ends up falling from a height flat on his back and unable to move, as the killer taunts him and sneaks away. The show then flashes forward three years to the present. Lincoln is confined to his home, able to move only his head and a few fingers, aided by a lot of expensive electronic systems and a nurse. When a series of murders in the city appears to indicate the return of The Bone Collector, Lincoln's old boss Michael Selitto, played by Michael Imperioli, consults with Lincoln. Lincoln chooses a young NYPD officer, Amelia Sachs (played by Arielle Kebbel), to wear a body cam and investigate the crime scenes with him watching from home. With that, the partnership between Lincoln and Amelia is born. In each episode, the two investigate a difficult case, along with a forensics team and Detective Selitto, but all the while the threat of The Bone Collector (who seems to have gone back underground) is in the background.

So far, the show is an excellent recreation of the outstanding novels. The characters are slightly different than as described in the books (my husband says they didn't make Lincoln nearly cranky and mean enough), but the essence of the stories is here: a brilliant but paralyzed forensic criminologist paired with a young female police officer solving unsolvable crimes. Each episode presents a new case that grabs the team's attention, while the tension around The Bone Collector slowly builds. The audience can see who the Bone Collector is and what he's doing, so that adds to the suspense. When the killer makes it clear that he knows who Amelia is and targets her family, as he did years ago with Lincoln's, the stakes are even higher. The weekly mystery plots are twisty and compelling, the cast is outstanding, and the suspense keeps growing. We've watched the first three episodes so far and can't wait to see more--Lincoln Rhyme has quickly become one of our favorite TV shows that we wait for each week!

Lincoln Rhyme airs Fridays at 8 pm Eastern time on NBC. We watch it On Demand, and for now, all three episodes are also available for free on the NBC website. It is also available on Amazon for $1.99 an episode or $19.99 for the full first season.

Monday, February 03, 2020

First ME/CFS Pediatric Population Study Published

Big news! A long overdue first-ever population study of kids and ME/CFS was just published in the journal Child and Youth Care Forum. It's full title is The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample and you can read the abstract here (or pay for the full text). There is also an excellent, brief summary of the study's findings in Science Daily.

A population study scientifically estimates what percentage of the population has a certain disease, in this case ME/CFS in kids. This is big news because when the CDC conducted two previous population studies on ME/CFS (the second one estimating about 2 million adults in the U.S. have the disease), they left out kids entirely; both of their studies focused only on those 18 and older. Those of us with kids with ME/CFS have long seen the desperate need for a population study of kids, to help educate the medical profession (and the public) that this devastating disease does affect children and teens.

 A few highlights from the findings of the study:
  • Researchers, led by longtime ME/CFS researcher and advocate Leonard Jason, screened 10,000 children and teens (ages 5-17)  in the Chicago area (population studies like this start with phone surveys that lead to more intensive medical work-ups for those who meet certain criteria).
  • 0.75% of the children in the study had ME/CFS-- that's more than a half million children in the U.S.
  • Startlingly (though not surprising to patients!), 95% of the children identified as having ME/CFS had not been diagnosed. Only 5% had been accurately diagnosed.
  • African-American and  Latinx kids were slightly more likely to have ME/CFS and even less likely than Caucasian children to have been diagnosed.
You can read a full summary of the study's results in Science Daily. Be sure to share this article with your own doctors, school nurses, teachers and administrators!

Sunday, February 02, 2020

Weekly Inspiration: When Difficult Times Hit

This is going to be a quick post today, relying mostly on previous blog posts. My energy and stamina have been poor recently. I'll write more about the details here on the blog this week, but the bottom line is that my Lyme disease is back again. It tends to go dormant for years at a time (though only about 15 months this time) and then suddenly flare up. I didn't catch it quickly this time because the joint pain was centered in one hip instead of my knees, as is typical for me. So, I've been dealing with excruciating pain for weeks. It's given me a whole new respect and appreciation for those who live with chronic pain all the time! Now that I figured out it's Lyme and have re-started treatment, I am getting better, bit by bit, but it's been a very challenging time for me. So, here are some previous posts with tips and ideas on dealing with stress and finding joy when your life is very restricted:

In These Are a Few of My Favorite Things, I was just recovering from a bad crash--similar to now--and I comforted myself by listing things that brought me joy. Just re-reading this list lifts my spirits! In this ProHealth article, Finding Joy in Every Day, I dive more deeply into the topic, including my approach of keeping a Joy Journal.

Yes, that's a groundhog in my son's oatmeal - Happy Groundhog Day!
In this post, Joy of Celebrations, I write about our traditions of celebrating even the most minor of holidays (Happy Groundhog Day today!). While it may seem counter-intuitive to celebrate when you are feeling down and out, a small-scale at-home sense of fun and celebration can really lift your spirits, especially when every day feels the same. Today, besides being Groundhog Day (an excellent day to re-watch the warm and funny Bill Murray movie, Groundhog Day), is also Superbowl Sunday. Usually it is just my husband and I, but we still have our own little Superbowl party, with favorite snacks, enjoying the game--and more importantly, the commercials! Luckily, I am feeling better enough today that we have two good friends coming over tonight to join the fun. I will be in my own house, in the recliner and/or on the couch, so it will still be low-key and low-energy for me, but I am looking forward to this little celebration.

When I feel as incapacitated as I have the past few weeks, it is hard for me to slow down and truly rest; I fight the need to be productive all the time, even when I know I don't have the energy. This week, I mostly watched TV when I needed some downtime. You can check out all of my TV show reviews if you are looking for a new show to grab your interest and occupy your restless mind. For some recent highlights, check out Favorite TV Shows Reviewed in 2019.

Books are always a HUGE comfort to me, and I set aside quiet time for reading every single day, before my nap and before bedtime at night. I write a book blog, Book by Book, which features reviews of books I have enjoyed each week. I also included lots of book recommendations, plus tips for those who can't read easily due to cognitive problems in my article, The Joy of Reading. For more book recommendations, check out my Best Books Read in 2019 post.

My Weekly Inspiration post, Laughter is the Best Medicine, featured TV shows, movies, and books sure to make you laugh and forget your problems for a bit. Laughter really does have positive physical effects, improving immune function, relieving stress, and relaxing you. Plus, it's fun!

Another Weekly Inspiration post, Listen to Podcasts, points to another great way to entertain and distract yourself (or learn something new!), even when you are stuck on the couch or in bed. The post lists some of my favorites.

Oops - this was supposed to be a short post! My husband is up now and it's time for breakfast, but I hope these ideas will inspire you to lift your spirits and find some joy each day.

I'd love to hear YOUR ideas! How do you cope when intense stress and/or a crash hit? What are your favorite uplifting TV shows, movies, books, and podcasts? Please share your ideas in the comments below.

Happy Groundhog Day and Superbowl Sunday!

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.