I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I haven't posted a vlog since December, so I recorded one last week. My chronic illness vlogs are honest views of my life with ME/CFS and Lyme, shown through short video clips made over the course of a week.
Last week, I was feeling pretty good, with just a few low-energy days. Mostly, though, given the time of year, it was a week filled with joy due to celebrations of smaller holidays: Superbowl (just before I recorded this), Valentine's Day, and Mardi Gras. You can check out my video, Celebrate Everything, Big and Small, for my tips on adding joy to your life by celebrating the small stuff, with minimal effort and energy!
This vlog also includes some peaceful, calming video outdoors in nature.
As usual, we're a bit behind, but my husband and I finally watched the movie CODA last
week. In 2021, it won Oscars for Best Motion Picture, Best Adapted
Screenplay, and Best Supporting Actor (for Troy Katsur). Now we know
what all the fuss was about! We both loved this funny, uplifting movie
about a family of deaf fishermen in New England.
As a Child of
Deaf Adults (CODA), Ruby, played by Emilia Jones, is the only hearing
person in her deaf family. They live on the New England coast and make
their living fishing. Early every morning, Ruby heads out in their boat
with her father, played by Troy Katsur, and her older brother, Leo
(played by Daniel Durant), before she heads into town for high school.
For as long as she can remember, Ruby has been the interpreter for her
father, brother, and mother, played by Marlee Matlin. Her family is
quite isolated from the rest of the town, though they are very
close-knit and loving. In her senior year of high school, Ruby signs up
for choir on a whim. She has always loved to sing, but in the midst of
her deaf family, she has no idea if she's any good. The music teacher,
Bernardo Villalobos, played by Eugenio Derbez, immediately recognizes
Ruby's raw talent. He begins training both her and Miles, played by
Ferdia Walsh-Peelo from Sing Street,
another excellent movie), for their upcoming concert, as well as for an
audition at the prestigious Berklee School of Music. He's convinced
Ruby can get in, and the more she sings, the more passionate she becomes
about it. But her family needs her more than ever, with several crises
occurring in the local fishing community. Ruby is torn between following
her dreams and finally becoming her own person and caring for the
family she loves.
When I thought back to this movie, I realized
it's a familiar coming-of-age movie theme: the adolescent finding her
identity and learning to separate from her family. The setting, of
course, is quite original: a hearing child in the midst of a deaf family
who rely on her. That's not all that makes this movie special, though.
The entire cast is outstanding, and glimpsing the interior lives of a
deaf family is fascinating, especially in one scene completely from
their perspective, with complete silence in the midst of a crowd. The
writing is also excellent (and award-winning), with each character fully
developed and plenty of humor blended with the drama. Even the physical
setting, on the rocky coast in a fishing village, is beautiful and
unique. All together, this makes for an engrossing package: a moving,
inspiring, funny family drama that kept us rapt and left our hearts
soaring.
CODA is an Apple original movie and is available on Apple TV.
If you are looking for other warm, inspiring, funny family dramas, try:
Captain Fantastic- warm, funny story of quirky family facing challenges
Lady Bird - tender, realistic, funny coming-of-age story
Seventeen years ago today, two wonderful things happened: my amazing nephew was born and I started this chronic illness blog! Back then, ME/CFS was often known as CFIDS (chronic fatigue immune dysfunction syndrome), in an effort by patients, experts, and advocates to bring some legitimacy to our much-maligned disease and more accuracy to its name.
You can read my very first blog post, Our Approach to Living with Chronic Illness, at the link. It's interesting to me to see that my overall philosophies have not changed: a balance of acceptance and hope, finding small joys in everyday life, staying within our limits, plus finding treatments that help. You can even see the origin of the title of my book, Finding a New Normal: Living Your Best Life with Chronic Illness in this post!
I started the blog as a sort of online journal (you can also see the precursor to this blog on my original LiveJournal account!). I didn't expect much, but I wanted to share our story and hopefully connect with a few other patients. I was quickly stunned by the outpouring of support from patients around the world who shared so many of our experiences in their own lives.
It was the start of what turned into a huge effort to provide support to others (while also supporting myself and my family) that now includes multiple support groups, both locally and globally, online; a YouTube channel; and interaction with others patients on social media platforms and beyond.
All of this has greatly improved my life in so many ways. This illness can be so lonely and isolating, and it's been magnificent to connect with so many people all over the world.
My husband and I have a new favorite TV show that we are absolutely loving. Poker Face stars one of our favorite actresses and is suspenseful, funny, and just plain fun.
The fabulous Natasha Lyonne (from Orange is the New Black and Russian Doll,
two other outstanding shows) stars as Charlie Cale, a woman with an
unusual talent: she can tell when someone is lying. For awhile, Charlie
made money playing poker, but she became renowned (or rather, infamous)
rather quickly and was soon banned from high-roller poker games after
winning too much money. As the show opens, Charlie is living a quiet
life working in a small, family-run casino. No more poker for her; she's
just earning her living as a waitress in the casino and living in a
trailer. When a friend of hers turns up dead, and Charlie can tell
someone involved is lying about it, she gets involved in finding out
what really happened. Meanwhile, the casino's manager, played by Adrian
Brody, wants Charlie to use her poker/truth-telling talents for his own
gain, to watch a high-roller game being held at the casino and help his
plant win. Let's just say that things go very wrong along the way. By
the end of the first episode, Charlie is on the run, with the casino's
muscle, Cliff (played by Benjamin Bratt), chasing her. From then on,
each episode finds Charlie in some small out-of-the-way place, with a
new job, just trying to live a quiet, peaceful life. In each place,
though, she stumbles on another murder and feels compelled to make sure
the bad guys pay and the good guys are redeemed.
This is something
of a classic murder mystery show, with a twist. Charlie usually ends up
solving each crime the old-fashioned way, by talking to people and
finding clues, but there is often some sort of innocuous comment someone
makes that Charlie knows is a lie and makes her realize there was a
murder (versus an accident or natural death) in the first place. The
mysteries are twisty and unusual. The best part of this show, though, is
its star. If you've seen Natasha Lyonne in either of her previous big
shows, you know she steals the scene every time. She's an absolute
delight to watch on screen, and here, she is at her laid-back, snarky
best. It's easy to root for her. Plus, each episode has some big name
guest stars in fabulous roles, like Judith Light as an aging hippy in a
retirement home and Ellen Barkin as a washed up actress who wants one
last hit on-stage in a regional theater. Every episode is loaded with
clever humor, great writing and acting, and a fun mystery to get to the
bottom of. We very quickly caught up on the first six episodes and are
anxiously awaiting the next one!
Poker Face is a Peacock original series and is available on Peacock exclusively, airing on Thursdays.
That headline should be nothing new to the large and growing population of patients with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and long-COVID, also known as PASC (post-acutes equelae of COVID-19). But, unfortunately, far too many doctors and other medical professionals worldwide continue to urge their ME/CFS and long-COVID patients to exercise and/or prescribe traditional physical therapy, in spite of evidence that these practices are often harmful to these populations.
This paper references nine different research studies or scientific papers previously published that all come to the same conclusion: that forcing patients with ME/CFS or long-COVID (PASC) to exercise makes them worse, and that it is unethical for doctors to choose any treatment path that could be harmful.
Just the fact that this many previous studies and papers have been published--and, as the author points out, as a result, the UK's NHS revised its NICE guidelines in 2020 to reflect these findings--should mean that doctors are no longer causing harm to their patients in these ways. Unfortunately, that's not the case, and doctors all over the world continue to urge their ME/CFS and long-COVID patients to be more active, exercise, and are even still prescribing traditional physical therapy.
So, if you have encountered one of these misinformed medical professionals who still insists on recommending increased activity, exercise, GET (Graded Exercise Therapy), or traditional physical therapy, click that link above, print the brief paper, and share it with him or her. The best way for us to help change these outdated and harmful practices is to help spread the word.
And once you've educated your doctor that exercise and GET are harmful, help him or her to understand how they can help you with real medical treatments instead. My Effective Treatments for ME/CFS (and Long-COVID) summary is a great place to start. The treatments that have helped my sons and I the most are almost all inexpensive and readily available through any primary care doctor/general practitioner (and there are even some treatments you can try on your own, though it's always best to do so under a doctor's supervision).
I've also written some articles on treating ME/CFS and long-COVID that are perfect for sharing with medical professionals because they are brief and include scientific references at the end (and are written so you can understand, too)--and these are the best treatments to start with, for maximum benefit:
The best part? If you start by treating Orthostatic Intolerance (OI) effectively, then you often can begin to tolerate increases in activity and small bits of exercise, at your own pace while listening to your body and wearing a heart rate monitor. But you need to treat the underlying causes of exercise intolerance (including OI) first.
Help spread the word! Print a copy of this new paper to share with your own medical professionals!
This weekend, my husband and I enjoyed a staycation, including a rare trip to the movie theater! We saw A Man Called Otto, based on the novel A Man Called Ove
by Fredrik Backman. I read (and loved) the novel, my husband didn't
read it, and we both thoroughly enjoyed this warm, poignant, very funny
movie adaptation.
Otto, played by Tom Hanks, is a grumpy older man
who lives in a townhouse community, located in Pennsylvania. He's been
forced to retire from a job he loved, and Otto is someone who needs to
feel useful. Each morning, he "does his rounds" of the neighborhood,
checking that everyone is parked where they should be, that the
recyclables are properly sorted, and that everyone is following the
rules. But Otto has a secret. With his wife and his job both gone now,
Otto has no reason to keep living. He's determined to end his life on
his own terms. Early in the movie, he calls to cancel his electric, gas,
and phone services to leave no loose ends. But life has other plans.
New neighbors move into the neighborhood, a Mexican-American family.
Marisol, played by Mariana Travino, is hugely pregnant; her husband,
Tommy (played by Manuel Garcia-Rulfo), is a nitwit in Otto's eyes. And
they have two adorable little girls. This family plies Otto with
kindness, requests for help, and delicious food. Throughout the movie,
flashbacks in Otto's memory help to fill in the blanks about how he came
to be where he is now. With the help of several crises, Otto's icy
exterior gradually thaws a bit, and he finds a reason to live.
Like
the novel it's adapted from, this movie is hilariously funny, while
also including some dark, difficult emotions (it does, after all,
include several suicide attempts). Tom Hanks, of course, does a
wonderful job of bringing the curmudgeonly Otto to life on screen, and
Mariana Travino is excellent as the warm, persistent Marisol. It's a
faithful adaptation of the book, following the plot pretty closely, with
the exception of Ove becoming Otto and being located in the US instead
of Sweden (though there's a nod to Otto's Swedish heritage in the
movie). My husband and I both laughed a lot and teared up at the end and
had a thoroughly enjoyable afternoon at the movies.
Amazon made a surprising announcement recently: as of February 20, they will be discontinuing their long-running AmazonSmile initiative. AmazonSmile allowed customers to select their own charity and then donated 0.5% of every purchase made to that charity. According to my latest update in December, Amazon sent a check to Solve ME/CFS (my selected charity on the site) for the last quarter of 2022 for $1367, and over the lifetime of the program had sent $24,159. As you can see, that's a substantial donation! However, Amazon said the program wasn't "having the impact we'd hoped."
While this is a disappointing move from the world's top online seller, there are still other ways to donate to your chosen charity while shopping (which doesn't cost you anything extra):
Goodshop or iGive
have almost every online store covered between them - I always stop at
iGive first before doing any online shopping. Just register on each site and choose you charity. You can also earn by using the sites to search. To show you how well this
works, my iGive page currently shows that I have selected Solve ME/CFS
as my cause, that I have personally earned and donated $296.31 to them, and
that they have earned a total of $6583.88 from all supporters! Isn't that
amazing? Over $6500 just from clicking a button before we shop online.
I'm hoping that perhaps Amazon will sign up for one of these programs, but that remains to be seen.
For a list of great ME/CFS charities and more ways to support them, check out my Giving Tuesdaypost from November.
