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.
Whew, it's been a rough couple of weeks for me. My stamina and energy have just been super-low, with a couple of bad crash days. At the same time, stress and exertion is at an all-time high, as my husband and I work to make arrangements for his 96-year-old father to move to assisted living (he is currently in independent living but needs help every day, so my husband's been running back and forth). The past two weeks were full of facility visits, arranging movers, making doctor's appointments, filling out and scanning dozens of pages of forms, and yesterday, finally telling him and taking him to visit the place we chose (he has dementia, so we didn't want to get him anxious too far ahead of time). This week, he has three doctor's appointments and a nurse's visit, which means driving 20 min to his place, driving to the doctor's, helping him with the visit, driving him home, and finally getting myself back home. Gonna be another tough one!
I think you can see why I chose the topic I did for my video this week! I picked another chapter from my book, You're Right Where You Need to Be. It's all about accepting where you are right now, today, at this moment, listening to your body, living in the present, and understanding that things may change tomorrow. That helpful phrase comes from an inspirational memoir written by a friend of mine, Seven: In the Lane of Hope by Michael Marini.
I thought I'd start a new feature, Throwback Thursday, to take a look back at what I was writing about here on the blog in the past. I've written the blog for more than 14 years now, so that's a LOT of old blog posts that rarely get seen anymore! Looking for an older post today, I also realized that many of the same issues from way back then are still very relevant today and that maybe we can all learn something from occasionally looking back!
So, for today, I chose two posts from this week in August 2008, 13 years ago. These two posts are on the same topic, two parts of the same story, about when I first got Lyme disease.
The first post, from August 13, 2008, is A House of Cards. I use a house of cards analogy to describe how I felt like my life had suddenly crumpled and left me exhausted and in a panic. In this post, I mention how bad I'd been feeling lately, my sudden-onset of knee pain, and a very difficult and painful fight I had with my doctor, about whether or not I now had Lyme disease. I still vividly remember that day because it was so upsetting to me. You can read all about it in that post.
One week later, on August 21, 2008, I wrote Lyme Disease and Allergies, which describes how treating Lyme (which my doctor finally agreed to after that awful fight) finally relieved my symptoms, giving me a miraculous recovery just in time for a camping vacation with my extended family (i.e. lots of energy required!).
August 2008: I was able to enjoy vacation with my family!
Wow, reliving that period 13 years later was interesting and enlightening! And there were some very important lessons in that one-week period so long ago:
Believe in Yourself & Advocate for Yourself - That fight with my doctor when my Lyme tests came back negative but I was certain I had it was a rough one; I was in tears and it still upsets me all these years later. But standing up for myself was the right thing to do. It turned out that I was right, that I did have Lyme disease (and, in fact, am still fighting it 13 years later), and if it had gone untreated for longer, I could have suffered from permanent neurological damage. It can be really hard to advocate for yourself when you have no energy and cognitive function is impaired, so you might need a friend or family member to help you with research and talking to your doctor(s) to represent your rights, needs, and interests. For background as to how I knew I had Lyme and why the lab tests were wrong, check out another post, Why Everyone with ME/CFS or Fibro Should Be Evaluated for Tick Infections. If I hadn't known all this and advocated for myself back then, I would be in much worse shape today, perhaps even bedridden. So, listen to your body, believe in yourself and what you are feeling, and speak up to ask for what you need (and enlist help when needed).
Listen To Your Body! Ah, yes, this is a lesson I keep having to re-learn, even 13 years later! I mention it in both of these older posts, and I just this week recorded a new video about this, You're Right Where You Need To Be. Paying attention to how we feel and resting before we crash is probably #1 in importance when it comes to managing these chronic illnesses, but it is easy to forget in the heat of the moment, when you think you must get something done or don't want to miss out on something. So, a reminder--even from 13 years ago!--is good now and then.
My Lyme Journey It's very interesting to look back at how it all started, when I first added Lyme disease to my diagnoses in 2008, because it's been a long journey with lots of ups and downs. Several times over the next 12 years, I thought I'd finally gotten the Lyme under control and fully treated (spoiler: I was wrong!). Finally, in January this year, I began seeing my son's Lyme specialist and started on some new treatments that have been very effective. I describe all that in my recent post News from Our House: Treatment Progress and More.
Where were YOU 13 years ago?
What lessons have you learned in the past that you seem to have to keep re-learning?
One evening when my husband had a late online meeting for work, I set
out to find just the right "me movie" to watch on my own. I wanted
something uplifting and fun but with some depth to it; not just mindless
fluff. I found just the right movie for my mindset in The Map of Tiny Perfect Things, a time-loop movie (ala Groundhog Day) with plenty of fun and a lot of heart.
Teen-aged
Mark, played by Kyle Allen, has been stuck re-living the same day over
and over ... and over. It's not even an especially good day: he doesn't
get to see his mom at all, his dad wants to have an uncomfortable talk
about his future, and nothing particularly exciting is going on. He
takes to walking around town, witnessing the same people doing the same
things every day and even gets some pleasure from helping to avert
potential disasters that only he sees coming. But he's bored. Then one
day at the pool, he notices Margaret, played by Kathryn Newton. He
notices her because she's the only person in the entire place that isn't
in the same place, doing the exact same thing as every other day. He
works up the courage to introduce himself and eventually, to ask her the
rather awkward question of whether she is stuck re-living this day,
too. She is! Gradually, the two of them team up, the only people in the
world who understand what they are each going through. Mark can tell
Margaret is hiding some sort of secret because she rushes off at 6 pm
every day without telling him where she's going. Otherwise, they really
start to bond over their shared experiences and even get some enjoyment
out of their situation when Mark comes up with the idea to make a map of
"tiny perfect things," little moments of synchronicity they have
discovered in this otherwise boring day. But Margaret's secret is coming
between them, and they still can't figure out how to get unstuck.
If you've read my blog before, you know that I absolutely love
any kind of fictional plot that plays with time: time travel, time
shifts, or yes, time loops. So, of course, I loved the premise of this
movie right from the start. But there is so much more to it that just
the plot. The two main actors--who are really the stars of this show,
with others in small parts supporting them--are both excellent in their
roles. The writing is good, with plenty of smart, clever dialogue and
nothing too trite or expected. The concept of the tiny perfect things is
very cool, and it's fun to go along with them on their repeated
journeys through town to document these moments. Best of all, though, is
that this movie also has emotional depth to it, with some serious
issues examined (including what's behind the time loop) and real feeling
between the main characters. In short, it has heart and soul. I really
enjoyed it; this was just the kind of uplifting and meaningful (but
fun!) movie I was looking for.
During our brief respite this weekend, we enjoyed takeout dinner and a
movie at home Saturday night. I was browsing through the available
movies on our streaming channels when I spotted The Nice Guys, a
movie from a few years ago (OK, five years ago) that I remembered
hearing about and wanting to see. It was a very entertaining
action/thriller with a great sense of humor, set in the 1970's.
Ryan
Gosling stars as Holland March, a private investigator in 1970's Los
Angeles, with a little girl, Holly (played by Angourie Rice). He's been
hired to find a woman's niece who's named Amelia, played by Margaret
Qualley, who it seems is being sought by a lot of different people.
Along the way, he runs into (OK, gets beat up by) fellow investigator
Jackson Healy, played by Russell Crowe, who's been hired to stop him
from looking for Amelia. Instead, the two of them team up because it
seems that the mysterious Amelia is in trouble from some very dangerous
people. Later, Amelia's mother, played by Kim Basinger, officially hires
them to find her. But the story she tells is very different from what
others have told them. Who do they believe? The plot gets very twisty,
as they race around L.A. amid fancy Hollywood parties, shoot-outs, car
chases, and lots of strange people, including a wide variety of
criminals. March keeps telling his daughter, Holly, to stay home, but
somehow she always ends up in the middle of the action (and danger). To
add to their problems, an infamous hit man named John Boy, played by
Matt Bomer, has been sent to kill them.
As you can probably tell from this description, The Nice Guys
is an action-packed mystery/thriller, but it is also very funny. The
backdrop of '70's fashions, cars, and music makes it all extra-fun, as
the two unlucky investigators try to figure out what's going on and who
to believe while searching for Amelia. The lead actors are both
excellent in their roles; you get a bit of the usual dark brooding from
Gosling, but he's not quite as silent in this movie as in some of his
others. Crowe's character is a violent-prone but happy guy. Underneath
it all, they are both "nice guys" who just want to do the right thing.
Rice, as March's daughter, Holly, is an excellent young actress who
holds her own among all the big names here. Aside from the recognizable
names I mentioned, it's one of those movies so chock-full of talent that
we kept pointing to the screen to say, "Oh, look it's that guy! What do
we know him from?" Thank goodness for IMDb.
There's some serious danger here, but it's all a bit tongue-in-cheek.
Bottom line is that it's a fun, entertaining movie for when you don't
want anything too somber. Grab the popcorn, sit back, and go along for
the ride.
The Nice Guys is currently available on Hulu, with subscription, or for $3.99 rental fee on most streaming channels, including Amazon.
Check out the trailer below, to get an idea of the tone of the movie and the entertaining banter between Gosling and Crowe:
And if you enjoy this kind of entertaining action-packed thriller
with a sense of humor, you might also like these movies (reviews and
trailers at the links):
My husband and I have been unable to travel--or really do much of anything on our own--for almost two years now. Yes, there's the pandemic and my chronic illnesses, but our biggest restriction lately is caring for my 96-year-old father-in-law. He needs help every day, and we weren't going to move him to Assisted Living when they were all locked-down and we wouldn't have been able to see him. We are in the process of finding a place for him now, but for the last 18 months or so, my husband been driving the 20 minutes to his apartment in Independent Living at least once a day and twice on weekends, plus we always spend time with him on weekends. We're happy to do it and glad we can spend time with him, but it is a lot of stress with no downtime, especially as his needs have greatly increased this past year.
I've tried to schedule some short getaways nearby, within 30 minutes of his place, but it's much too hot for camping right now, and my husband's work schedule's been full, too (we can only go on weekdays when an aide is available to help).
In addition, with all this time spent caring for him, we don't have enough time or energy to properly take care of our house, our yard, and everything else in life!
Enjoying a Respite
So, a few weeks ago, with both of us feeling stressed, overwhelmed, and seriously depleted, I declared we were going to have an 18-hour respite!
I explained that, from 5 pm Saturday when he got back from his dad's until 11 am Sunday when he'd need to head over there again, we were going to just relax, enjoy ourselves, and not try to accomplish anything or be productive. He brought takeout dinner home, we watched a movie together, spent some time reading, and got up in the morning in the same frame of mind. After a simple breakfast, we treated ourselves to coffee (which I rarely drink) and chocolate croissants (you must try Trader Joe's ones in the freezer - bake them yourself and it's like you're in a fancy coffee shop!), while we watched a couple of episodes of Lakefront Bargain Hunt, our go-to guilty pleasure! We spent time relaxing out on our screened porch, which we normally don't have time to enjoy.
Relaxing on the screened porch
It worked wonderfully and allowed us to recharge, and we did the same this past 18 hours (my husband is out now picking up his dad to bring him here for lunch).
The key here is a change in mental attitude: act like you're on vacation, ignore the to-do lists and piles and mess everywhere, and focus on pleasant, relaxing things. Get takeout or stick with simple meals, with minimal cooking and dishes. Let the laundry, cleaning, phone calls, and bills wait.
It's a simple concept, but it is really helping us! Friday, we were both exhausted, overwhelmed, and feeling depressed. But now, the word respite is like a code word for us that helps us switch to off-duty, fun mode and just relax for a bit; even just an 18-hour break helps! Without this conscious switch, we'd either keep trying to get stuff done (me putting my laptop away is a crucial step!) or feel guilty for all the things we should be doing. Taking a respite allows us to turn off our brains for a bit.
This can also work very well if you have kids at home (whether healthy or sick). They will love the switch to vacation mode and get into the spirit! When our sons were young, and three of the four of us were chronically ill at the same time, we had a tradition (thought up on the spur of the moment one difficult February) of packing up the car for a weekend at the beach in February or March, just when the long winter of viruses, crashes, and missed schoolwork felt like more than we could take anymore. We'd just relax in our hotel room, play cards, eat at our favorite restaurants, take a short walk on the beach (bundled up!), and sit on the floor of the awesome local bookstore, browsing in our favorite sections. It wasn't much (and the beach in the off-season is cheap), but that change in attitude helped us all so much!
My sons and I on a deserted beach, enjoying a getaway!
Even if you can't physically get away, like us right now, you can still give yourself a much-needed respite today, right at home. Try it!
Take a Break!
For more ideas on ways to give yourself a break from routine, even when you can't leave the house, check out my recent video, Take a Break!
One of the chapters in my book, Finding a New Normal: Living Your Best Life with Chronic Illness, in the section on Daily Living, is called "A Plan B Day." It describes a simple premise that really changed my life and allowed me to stop fighting against my illness's whims and listen to my body. I recorded a short video yesterday to explain the concept, with some simple steps to follow for those days when you wake up with plans but a body that is in can't-do mode:
(Or you can watch it on YouTube here, where you can also Like and comment on the video, plus subscribe to my channel for more videos).
And then ... I woke up today with a list of errands I planned to take care of ... and feeling completely wiped out!
As usual, I started out thinking, "but I have to ...," but then I realized I should take my own advice! I thought about each of the stops I planned to make and decided I could put it all off until Friday (Thursday I have a dentist appointment). I went downstairs for breakfast, told my husband it was a Plan B Day (he knows what that means!), and he said he could grab a few urgent items from the store this afternoon. With my Plan B in place, I settled into the couch, with my super-soft comfy blanket, rested all day, and listened to my body. Hey, it really works!
Check out the video and then tell me about YOUR experiences with days when your body just won't cooperate with your plans and if you've tried making a Plan B (or whatever your own process is!).
After a difficult, stressful week, my husband and I returned to our
pandemic routine and enjoyed a quiet Saturday night at home with
take-out and a movie. Since we were both feeling pretty run-down and
overwhelmed, I looked for a movie with a positive message and inspiring
setting, and I found just the thing. Find Me won several indie
film awards but seems to have flown under the radar. Since it has an
astounding Rotten Tomatoes' critic review of 100% and included scenes in
National Parks (our favorite places), I thought it would be just right
for us. We both thoroughly enjoyed this warm, poignant movie with
gorgeous settings.
Joe, played by Tom Huang, works as an
accountant in a firm in Los Angeles. Since his divorce, he's been pretty
much just going through the motions in his life: going to work,
checking on his parents, going home to his tiny apartment, and eating
the same takeout dinner every night before falling asleep in front of
the TV while watching nature shows. The only bright spot in his life is
his co-worker, Amelia (played by Sara Amini), who travels all over and
comes back to regale Joe with her adventures. Joe comes to life in
Amelia's company, and the two of them laugh a lot together and talk
constantly throughout their long days at work. Then, one day, Amelia
just disappears. She doesn't show up at work, Joe doesn't hear a word
from her, and eventually their boss says that she requested a week off,
but now it's been more than two weeks. Joe gets a note in the mail from
her, postmarked Springdale, UT (if you know your national parks, you
know the significance of that address!), with an-almost blank page
inside with just two words: "Find Me." Though it is highly out of
character for Joe to do anything impulsive, he's worried about Amelia,
so he sets up help for his parents, gets in his car, and drives to Utah.
From there, Amelia takes Joe on a very cool kind of National Park
scavenger hunt, traveling from one amazing natural wonder to another,
following her breadcrumbs (in the form of videos on SD drives, hidden
like geocaches). He's worried about her, but as he takes this
one-of-a-kind journey, he also begins to discover that life still
contains plenty of joy and wonder.
Tom Huang is not only the lead actor here, he also wrote and directed the movie, which is quite impressive!
We love road trips and National Parks, so this movie was made for us.
But it is a unique kind of road trip story, with an underlying story
with suspense, joy, and sadness all woven into it. There are some
surprises for Joe along the way, and not all of them are pleasant, but
the trip and the places he visits open him up to the world around him,
just as Amelia has been urging him to do. The settings and the
videography are stunning--we wish we could have seen this on a big
screen in a theater--and we enjoyed revisiting some of our own favorite
places, as well as some we've never been to before. It's not just about
the trip and the parks, though; this is also a story about tragedy,
connecting with the world, and opening yourself to joy and wonder. There
is some sadness here, but the ultimate message of the film is
uplifting. The closing scenes provided the perfect ending, in my
opinion. We thoroughly enjoyed going on this virtual trip, both physical
and emotional, alongside Joe.
We watched Find Me free on IMDb,
through Amazon Prime (at the link). It also seems to be available on
Tubi and Pluto TV for free, as well as for a fee on many other streaming
services.
If you enjoy poignant and
moving movies in a beautiful natural setting, I also recommend these
(links to my reviews, with trailers - no spoilers):
Leave No Trace, about a complicated father-daughter relationship, set in the dense forests of the Pacific Northwest.
Nomadland
- Oscar-winning fictional story of real-life modern nomads, living in
vans and campers and traveling to seasonal jobs, with some stunning
scenes, especially in Badlands National Park (one of our personal
favorites).
Hunt for the Wilderpeople
- a warm, hilarious movie about an abandoned teen and a grumpy old man,
on the run together in the New Zealand outback. A favorite!
Call of the Wild
- a Disney-fied version of the classic novel but still a moving story
of a man and a dog saving each other, set against the stunning backdrop
of Alaska and the Yukon.
Redwood Highway
- a warm, thoughtful film about a grandma who decides to walk the 80
miles to her granddaughter's wedding! Set in the forests and along the
coast of Oregon, with stunning natural footage, as she hikes and camps
along the way.
