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 started something new last month--something I've been meaning to do for years that my mailing list provider finally set up--and mailed out a newsletter to my subscribers.
My first monthly newsletter, in September, included:
Quote of the Month - something I read that resonated with my life with chronic illness
Blog of the Month - introducing a chronic illness blog I enjoy
From My Book - news (like sales or new formats) or a quote from my book
Videos and blog posts you may have missed
But I would love to hear what YOU want to see in my newsletter! I'm thinking of adding a quick personal update this month.
To receive my newsletter (and notifications when a new blog post is published), sign up at this link or by clicking the Subscribe button in the sidebar of the blog anytime. If you sign up now, you'll receive my October newsletter, going out in a few days.
What would you like to see in my monthly newsletter?
My
husband and I are excited for the fall TV season, bringing back some of
our favorite shows with new episodes, along with a few new shows for us
to try. We still watch a lot of network shows via cable On Demand, but
most of them are also available through streaming channels and/or on the
network website, so I'm including both network and streaming shows in
this post. Links go to my reviews, where available. Here's what we're looking forward to:
Returning Favorites:
Medical Shows
The Resident, starring Matt Czuckry, started its sixth season last week. We were fans of Czuckry from The Good Wife,
and have enjoyed watching him in this hospital drama set in Atlanta. It
was questionable last spring whether it would be renewed for a sixth
season, so I figured this was its last ... but the one of the
co-creators was quoted as saying, "It could go on and on" like E.R., so who knows?
New Amsterdam stars Ryan Eggold (who we enjoyed in Blacklist)
as the super-enthusiastic, "we can do anything" head of this fictional
NYC hospital. This is one my husband is tiring of, but I still enjoy the
actors, humor, and drama. It returned last week for its fifth and final
season.
Grey's Anatomy returns next week for its 50th
season ... ha ha, just kidding! It's only season 19! This is still a
favorite of mine. During my recent relapse of my chronic illness, I have
been amusing myself while stuck on the couch by starting back at season
1 and rewatching old Grey's Anatomy, and I just love it so much!
It has everything: drama, humor, suspense. It makes me laugh and cry!
The past two seasons have been a bit depressing--which I'm sure is what
my husband dislikes (I personally like a good fictional cry)--but the trailer for this new season
looks like they will once again be focusing on a new set of interns and
getting back to a lighter touch, which is how the show started, so this
should be fun!
Action and Suspense
My
husband still watches the medical shows mainly for my sake. What he
likes best are shows with action, suspense, and maybe a bit of science
fiction. I like those, too. Here's what we're excited to see again:
The Rookie
came back for its fifth season on Sunday, and I can't wait for my
husband to return from his business trip so we can watch it! This is our
current favorite show. It stars Nathan Fillion as a 40-ish rookie with
the LAPD (though at this point, he's past his rookie stage). Yes, it's a
police drama featuring crime, mysteries, action, and suspense, but it's
also about the lives of the police officers and has a wonderful sense
of humor. If you haven't watched it yet, give it a try!
Big Sky
came back last week for its 3rd season. This is a crime drama featuring
two female detectives in the big sky country of Montana. Each season
has an on-going mystery/investigation. Season 1 dealt with human
trafficking and a creepy serial killer, Season 2 focused on two drug
syndicates. Season 3 kicked off with a missing hiker and some mysterious
goings-on at a local outdoor resort where Reba McEntire plays the
resort's host. Good suspenseful start!
La Brea is back
for its second season starting tonight. The premise is that a giant
sinkhole opened up in LA where the La Brea tar pits are, and a bunch of
people fell through ... and into a prehistoric world. Those down there
want to figure out how to get back to the modern world, while they try
to survive, and those left behind are trying to figure out how to get
them back. We always enjoy these kinds of suspense/action shows with a
sci fi twist, but they have a bad track record of not lasting long
enough for a satisfying conclusion! So, we're glad this one is back for a
second season.
Yellowstonereturns
in November for its fifth season. We love this modern western about a
ranching family in Wyoming, starring Kevin Costner, but it airs on
Paramount Network (which is, apparently, different from Paramount
Plus??). It's quite confusing, but we know we'll have to wait a month or
two until it's available On Demand or though streaming. It's worth the
wait!
Amazing Race offers a different kind of action and
suspense! It returned last week for its 34th (!) season. We watched it
with our sons when they were young (great for families), then skipped a
bunch of seasons, but we got back into it last season. My childhood best
friend also loves the show, and last season we discovered the fun of
texting each other while we watch it from our separate states! This is
the only reality TV show we enjoy.
Handmaid's Tale is back
for a fifth season ... and they've just announced a sixth season is
coming! This is one of the best shows on TV ... ever. Seriously.
Elizabeth Moss stars as Offred, the main character from Margaret
Atwood's well-known dystopian novel. Everything about this show is
outstanding: the writing, the acting, cinematography, twisty plot. The
first two episodes of this new season blew our minds!
New Shows To Try:
I
know, that's already a lot of shows to juggle! But there are always
shows ending, and it's fun to watch some new ones. We're not bingers. We
still like to watch TV the old way, watching one episode a week so that
every night brings something different. Variety is the spice of life!
With that in mind, we plan to try these new shows:
Quantum Leap
premiered last week. This classic show from the 80's/90's has been
rebooted and modernized with a whole new cast. You probably know the
premise: a scientific team has developed--but not perfected--time travel
technology, and one of their team, in this case played by Raymond Lee,
is stuck "leaping" through time and space, where each time, he needs to
figure out how to save someone in order to leap again. I love anything
to do with time travel, but I never watched the original! We enjoyed the
first episode set in 1985 last week.
So Help Me Todd
is a detective/crime show with a twist: it features a mother-son team.
Marcia Gay Harden plays a high-powered lawyer who helps out her son,
played by Thomas Cadrot, by hiring him as an investigator for her firm.
It's a great cast and it looks like it has a sense of humor (always a
plus), so we're going to give it a try.
Alaska Daily
premiers next week on October 6. It stars Hillary Swank as a journalist
who moves to Alaska to start over and ends up investigating the case of
a missing girl. It looks great, and we love this sort of thriller/crime
drama.
Reboot is something different for us, a comedy (we're also currently enjoying Hacks
on HBO Max). This is about the behind-the-scenes of a reboot of a 90's
sitcom. It has an all-star cast, including Paul Reiser, Keegan-Michael
Key, Rachel Bloom, Judy Greer, and more. It got good reviews from the
crew at Pop Culture Happy Hour podcast, it's from the co-creator of Modern Family, and the trailer looks like fun:
Once again, I have not been able to write much here on the blog because I am still very severely crashed, for over a month now. In fact, these past two weeks have been even worse than before, which is discouraging. I still have no idea what caused this sudden worsening, though I have been working with my ME/CFS specialist to try a few new treatments.
If you're a regular reader, you know that I normal function fairly well, thanks to treatments, and that crashes--from both over-exertion and from infectious triggers--are usually pretty rare for me now. A crash this bad and lasting this long hasn't happened to me in many years, since the very early years of my illness. So, I continue to "rest aggressively," enjoy some books, and watch a lot of old Grey's Anatomy episodes!
Luckily, last month, before this crash, I wrote two guest posts for other blogs that have recently been published, so I'm sharing those here with you today, sitting up for ten minutes before I return to my usual horizontal position.
The Despite Pain blog is written by Liz, who writes a wide variety of helpful, informative, and inspirational blog posts. Be sure to check out the rest of her blog. My guest post, Finding a New Normal, can be read at the link, and you can find the rest of Liz's blog's features in the menus there.
I also wrote a guest post for My Rockin' Disabled Life blog, hosted by Sarah. She often features guest posts by other chronic illness writers, to highlight a wide variety of different chronic conditions and disabilities. I was honored to be included! My post there is called Finding Happiness and Satisfaction in a Life with Chronic Illness. You can read my post at the link, then explore the rest of Sarah's blog.
And now, I'm going to take my own advice: accept where I am today, lie down to listen to my body, and find some small joys in the lovely fall breeze coming through the open window, a hot cup of fragrant lemon herbal tea, and ... perhaps another episode of Grey's Anatomy to make me smile!
My health continues to be very up and down--well, mostly down. It's a long, complicated story, and I want to write a full update for the blog, but I haven't had the energy for that. A change in medication caused a massive shift in hormone levels for me, and I think I am still adjusting to that and waiting for my body to stabilize.
In the meantime, I have another weekly vlog that tells another piece of the story. As I edited this video yesterday, I realized that I actually had a pretty good week Tuesday through Friday, but then--again--I crashed badly on the weekend. This time, it was even more severe, and I was mostly bedridden/couchbound for four days. Today, I am sitting up partially again in the recliner, so that is a huge step forward, but I still have symptoms, very low energy, and am feeling very fragile. I'm trying to be very, very careful and take it easy and extremely slow.
So, here's my weekly chronic illness vlog, where you can see for yourself a very honest view of my life last week. You can watch it on YouTube at this link or below:
I would love to hear from YOU!
How was your week and how are you doing so far this week?
My weekly vlog about life with chronic illness (especially ME/CFS, orthostatic intolerance, and Lyme disease) from last week is available now. I had a pretty bad crash week, with most of my days spent in bed, on the couch, and in my recliner. As usual, my analytic brain was hard at work, trying to figure out WHY I crashed, so the video includes my theories and what I might do about it. Plus a few things that made me smile and brightened my otherwise difficult week.
The good news is that the past two days have been a bit better for me. I am still struggling with a bit of achiness, but I was able to leave the house yesterday (three times!) and get some writing work done the past two days (I'm starting some new freelance work for Open Medicine Foundation that I'm excited about--more on that later).
So, fingers crossed that this week continues to be better than last. If nothing else, our days of rain and storms should end tonight, and clear skies always help me!
How was YOUR week?
What cheers you up & helps you feel better when you're crashed?
I've been pretty badly crashed all week (and much of the last two weeks), so our holiday
weekend was very low-key. I wrote that blog post about having fun on Saturday, and I'd hoped to maybe take a short hike with my
husband or get together with friends for dinner, but I was in rough
shape. So, on Sunday, we decided to watch a movie--in the middle of the
day! Normally, I look for award winners, check reviews and viewer's
ratings, etc. This time, I just wanted something light and fun. I always
enjoy actress Sandra Bullock, so I chose her latest movie, The Lost City, and it delivered.
Bullock
plays Loretta Sage, a reclusive romance writer. Loretta writes a series
of romance novels about a female archeologist, Dr. Angela Lovemore
(yup. laughing yet?). Lovemore's romantic interest in the novels is Dash
McMahon, and ever since the first book, a handsome man named Alan
(played by Channing Tatum) has been the cover model, so that millions of
fans think of Alan as Dash. Sales have started lagging, though, so
Loretta's editor, Beth (played by Da'Vine Joy Randolph) wants both
Loretta and Alan to go on a huge book tour to promote the latest
addition to the series. Loretta is clearly depressed and unused to being
in public; she actually did work as an archeologist with her late
husband and has been isolated since his death. After their first stop (a
hilarious scene where they dress timid Loretta in a sequined jumpsuit
and Alan arrives with a Fabio-esque head of hair to great fanfare),
things immediately go wrong as they travel on, and Loretta is kidnapped.
An evil narcissist named Abigail Fairfax (played amusingly by Daniel
Radcliffe) wants Loretta to decode ancient hieroglyphs from the lost
tribe in Loretta's new book (which was based on real-life work she did)
and find the priceless treasure buried in a long-lost tomb. He flies her
out to the island where he has found the tribe's lost village. Alan saw
Loretta get kidnapped, but the police refuse to do anything until 24
hours have passed. Alan calls in an ex-military trainer he knows, played
by Brad Pitt, to help rescue Loretta (who's wearing a tracker device),
and the two follow her and her captor to the island. As you might have
guessed, Alan is nothing like the capable, heroic man he portrays from
the books. Finally, Beth also joins the search, so that they are all on
the island, racing against time.
In case you couldn't tell by the
description, this is a very silly story, though it pays tribute to
adventure-romance novels. The characters are over-the-top, the story is
twisty, and there is a lot of action. It is all a whole lot of fun,
which was just what we wanted! We were laughing right from the
beginning. The actors all do a great job of inhabiting their
larger-than-life characters, and Loretta and Alan get plenty of serious,
poignant moments, too, so it's not all just farce. The Lost City
was filled with laugh-out-loud humor, plenty of action and suspense,
and--of course--some romance, too. It was the perfect entertaining
choice for a sick day!
The Lost City is currently available on Amazon Prime and Paramount+ for free, and all the usual places where you can buy videos on demand.
I recently came across a TED Talk that really resonated with me, Why Having Fun Is the Secret to a Healthier Life by Catherine Price. You can watch it at the link or I will also include it here:
This talk struck me because I really struggle with having fun! I know that sounds like a crazy thing to say, but it's true. One of my goals is to do two fun things each week (TV doesn't count) and two quiet things just for myself each week. And, yes, I am aware of the irony that I set goals to have fun!
I think that two things get in my way. First, I tend to get too focused on being productive and getting things done. Since my time/energy is so limited each day, just doing the maintenance stuff around the house and the work (writing, blogging, videos, etc.) I want to do uses up all of that limited energy. That's why I set the goals - to remind myself that fun also needs to be built into my weekly plans.
The other problem is, of course, that SO many things I would find fun are just not available to me anymore with chronic illness. Before I got sick, I was very active and loved outdoor activities. I think if I hadn't gotten sick, I would have started playing adult soccer (my sons loved soccer, so we all got interested in it) or maybe joined my friend in her new pickleball passion. I know I would be hiking every week, taking longer hikes with my husband and my friends, kayaking more often, and maybe even still backpacking--all things I used to love. Play just seems easier when you can do sports and activities. Even sitting up to play a board game (especially in the evening) is sometimes too much for me.
So, what can I do to have fun? It shouldn't surprise you that I have a tab in my Goals spreadsheet called Fun Things! Here's some of what I wrote there:
With Friends:
Talk on phone
Meet for a meal out
Walk or hike
Kayak
Book group
Play games
Watch a movie in theater or at home
With My Husband:
All the same stuff as with friends, plus:
Jigsaw puzzle
Play cards or games (though he claims to hate games!)
Meet with friends
Have friends over
Go camping
Travel
On My Own:
Read (other than nap or bedtime, when I read every day)
Play a game
Watch TV or a movie (other than our usual time from 7:30 -9:30)
Coloring
Watch videos
Read magazines
Walk or hike
I know that I desperately need more time with friends. My health has been very up and down the past few years (and is currently pretty bad), which makes it almost impossible to plan anything. I haven't seen my closest friends in months, though I did finally spend some time talking on the phone to one friend this week, which was wonderful. My book group will be starting up again this month, so I'm looking forward to that, although I had to cancel roughly ever other time last season.
This video has inspired me to try to add more fun to my life!
