Monday, July 06, 2020

Movie Monday: I See You

My husband and I were scrolling through Amazon a few weeks ago on a Saturday, looking for a movie (specifically a thriller) to watch, and we found Lie to Me. It sounded interesting, and we like Helen Hunt, who stars in it, so we watched it. What a pleasant surprise! It turned out to be a very clever, twisty thriller with plenty of surprises in store.

Helen Hunt, most famous for her role in Mad About You in the 90's, plays Jackie Harper, who is married to Greg, played by Jon Tenney. They have a teen son named Connor, played by Judah Lewis. Greg is a police detective in their picturesque small town. It's clear from the beginning that Jackie recently cheated on Greg, and though the couple is trying to stay together, Connor has not forgiven his mom and is very angry with her. In this midst of this domestic trouble, a young boy has gone missing from their quiet town, last seen while riding his bike in the woods on his way home. Greg and the rest of the police force are looking for him, and members of the community join in with search parties through the woods. There is some reference to past incidents of boys going missing, though the details aren't clear at first. Meanwhile, Jackie starts to notice strange things going on in their home, as tension builds both within and outside their family.

This is the way I like my thrillers: smart and unpredictable. This seems to start out as a simple mystery--boy gone missing--with some family drama mixed in. Then, the weird things start happening around the house, and you begin to wonder if there could be something supernatural going on. Eventually, some of those questions are answered, but there are still plenty more surprises to come. The cast is excellent, the writing is great, but the star of this movie is that surprise-filled plot. We absolutely loved this super-twisty, tension-filled thriller that kept us guessing right up until the end (even my husband, who always guesses the ending of movies, was stumped). It just gets better and better.

I See You is currently available on Amazon Prime.

Sunday, July 05, 2020

Weekly Inspiration: Roll with the Punches


Stress and anxiety are sky-high at our house lately. My 95-year-old father-in-law has been struggling during the pandemic, and we've seen a decline in him both physically and mentally because of the isolation (he's still in independent living, so my husband visits, but he can't leave his building and spends every day just sitting in his apartment). We were finally able to get the whole family together with him on Father's Day for an outdoor socially-distanced visit, and he loved it! We brought his favorite McDonald's meal (his favorite meal, period - ha ha), gifts, and got him telling old stories. In the days following our visit, he seemed more engaged and mentally "with it." So, we tried another outdoor visit that following week, just four days later, but he was confused the whole time and couldn't even remember old stories he's told thousands of times.

Since then, he's fallen off a cliff, cognitively. He hasn't had a single lucid moment in weeks now and just gets worse and worse. My husband is running over there (about 20 min from our house) at least twice a day because he's completely forgotten how to care for himself. Meanwhile, I spent my week first calling services that offer in-home care (much too expensive on top of his rent) and now, assisted living facilities. We were determined not to move him into assisted living during the pandemic because we won't be able to see him, but we no longer have a choice. We are working with his doctor to test for UTI and other possible causes of this sudden decline, but he was already going downhill, and this may just be his new normal.

The stress for my husband and I has been huge. I spent all day Thursday crying, after a very upsetting phone conversation with my FIL where he barely knew who I was. I just couldn't stop sobbing! It was all the accumulated stress boiling over. Then, I got back to my phone calls. We've both just been feeling completely wrung-out, and of course, that emotional stress resulted in a physical downturn for me, too--I was useless on Friday, and my husband had to get our weekly groceries in addition to his visits to his dad. Luckily, he had the day off work, at least. I am feeling so fragile that I have been avoiding the news and even mainstream social media (my connections in the chronic illness world feel like my only "safe places" right now!) because they just add to the stress and anxiety.

All of this is a long way of telling you that I've been thinking about how we handle stress and was going to write about it today ... then realized I already wrote about this topic in my book! Here is a reprint of the chapter titled Roll with the Punches, which is all about what to do when a crisis hits. You might also be interested in a couple of my recent posts, each of which has lots of tips and ideas: Dealing with STRESS and Coping in a Crisis. I sincerely hope your life is crisis-free right now, but I think we could all use some help with stress!

(Note that this chapter was first published as an article on the ProHealth website on August 26, 2018; it was edited for my book, and this is the edited version.)




Roll with the Punches

We recently had a tough year with a lot of unexpected crises that created emotional stress, financial problems, and the need for fast action. Most significantly, one son was assaulted in Europe and had to return early from a study-abroad program due to a serious concussion. During that trying time, a family member commented on how well we coped with these kinds of emergencies, how we stayed calm and did what had to be done. It made me realize that so many years of living with chronic illness has taught us how to go with the flow when things go wrong.

I have learned to expect the unexpected while living with ME/CFS myself and having two sons with the same disease, one of whom also battles tick infections. The only thing you can count on with these illnesses is their unpredictability. I’ve lost count of the number of times I’ve had to cancel time with friends at the last minute, couldn’t go to my book club, or had to call off a family trip. It’s never fun, but you do get used to the rollercoaster life.

Our sons have grown up this way, learning to roll with the punches and change plans at a moment’s notice. They’ve learned to bear the disappointment of missing out on something but also to make the best of a bad situation. For example, when my oldest son relapsed from the flu and we had to cancel our usual Thanksgiving trip to see family, we focused instead on the rare treat of being in our own home for a holiday.

When we got that unexpected phone call from our younger son in Europe, of course my husband and I were very upset. However, with so much experience with crises under our belts, we quickly moved on to what needed to be done. I contacted our son’s concussion specialist (he’d had one before), a caring doctor who replied immediately with advice for our son and assessed him long-distance with online concussion testing software. We spoke with our son every day to comfort him and to assess his progress (or lack thereof). When it became clear that he couldn’t participate in any activities, we made arrangements to bring him home early.

Back home the next day, our son kept thanking us for acting quickly and bringing him home. He’s never been so grateful! We got him into the concussion specialist immediately and followed the instructions for “brain rest.” Even at that point, our son was remarkably positive about his experience. Yes, a horrible thing had happened to him, and he missed two-thirds of the program he’d been looking forward to. He told us, though, that his first week there had been amazing; he’d seen and done so many wonderful things and learned a lot.

Within a month, he was almost fully recovered from the concussion. He could think clearly, had returned to normal activities, and his headaches were almost gone. His professor worked with him on an individual project to get credit for the course. Our travel insurance (we never travel without it) came through with reimbursement to us for the outrageously expensive last-minute plane fare soon after.

In the midst of all of this, I realized that living with chronic illness has made us emotionally stronger and taught us to adapt when things go wrong. All of those unpredictable days, weeks, and months taught us how to cope with uncertainty and crisis.
Here are some tips for when the unexpected happens to you.

Take Time to Grieve
It’s important to acknowledge and feel the raw emotions that come up when something bad happens. You can’t move forward until you allow yourself to grieve. It’s OK to cry and let go and feel awful for a while. In fact, it’s healthy and necessary.

Start Moving Forward
Once you experience that anger and hurt and sadness, it’s time to start thinking about what you can do to help. Even in our case, thousands of miles from our son, we could contact the doctor, talk to our son frequently (he was very upset), and begin thinking about what came next. Taking steps to ameliorate the situation will also help you to move forward emotionally, as long as you have first dealt with the grief.

Face One Day at a Time
Try to think about what you can do right now, today, to help with the crisis. It’s best not to worry too much about what comes next week or next year because that can lead to ever-worsening anxiety. Instead, focus on today—or even just this minute. Taking things one step at a time will help you to stay calm and able to help.

Seek Support
A few days into the crisis around our son’s concussion while abroad, I realized I really needed someone to talk to (besides my very supportive husband). I turned to my online support group of parents whose kids are sick. True, this incident had nothing to do with ME/CFS or the other chronic conditions covered in our group, and it was the recovered son who was injured. I knew they would get it, though. And they did. I vented all of my concerns and anxiety to our private group; as always, they responded with compassion and understanding. It was just what I needed. Try to find the right source of support for your situation, whether that’s a friend, support group, or therapist.



Unexpected crises are not just a part of life with chronic illness; horrible things happen in every life at one time or another. When these things occur, though, our lives of chronic illness have an unexpected silver lining. We’ve been training for this ever since we got sick! You can use the skills and coping mechanisms you’ve learned from your chronic illness world to help you through whatever else comes up. As an added bonus, we can also help our loved ones to find their way through whatever life throws at them. Hang on—it’s going to be a bumpy ride!

Wednesday, July 01, 2020

My Update: Crashes, Infections, and Treatments ... Oh, My!


I am way overdue for a personal update on my health here, but I just haven’t had the energy for the past four months … which I guess says it all! Here’s an overview of what’s been happening, what I’ve learned, and what I’m trying to resolve it. I’ll try to keep it brief!

The Downturn

First, back late 2019, I couldn’t figure out why my left hip was hurting. I couldn’t remember injuring it, my massage therapist wasn’t able to help, and it took me months for the lightbulb to finally go off: my Lyme disease was back, flaring up again! That’s a whole story in itself, but the quick version is that I got Lyme way back in about 2009, and ever since then, I treat it and it goes into remission for awhile and then—probably due to the immune dysfunction of ME/CFS—pops back up again every few years. Usually, I know immediately that it’s back because of sudden-onset knee pain (I don’t normally have any pain issues, other than the flu-like aches of an ME/CFS crash) and nausea. This time, it surprised me with the left-hip pain, so it took me longer than usual to realize what was happening. Lyme works that way—with joint pain that can sometimes hop around from one joint to another.


So, around January, I restarted my Lyme treatment; I use a tincture called A-L Complex from the herbal Byron White protocol. I began to feel better pretty quickly, and the hip pain went away, confirming that it was indeed Lyme disease rearing up again. I felt good—at my normal baseline--in February and into early March, continuing the treatment (it came back this time after only 18 months, so I was determined to treat it more completely). Then the pandemic hit in mid-March, and we hunkered down at home, not that much different from our normal life. Soon, though, I began to go downhill.

From mid-March until recently, I was in a crash but couldn’t figure out why (that sort of unexplained crash is extremely rare for me now, thanks to treating immune system dysfunction). I was worn out all the time, had no energy, and was very achy at times. I kept waiting it out, but the crash wasn’t going away. I suspected that perhaps I’d been exposed to COVID-19 way back at the beginning without realizing it. After all, that’s probably how any of us with ME/CFS would react, right? By crashing badly, even if we didn’t “catch” it and get the common symptoms of it.

By May, I was no better, so e-mailed my ME/CFS specialist in NYC. She agreed with my theory that there was probably some infection behind the scenes, so she sent a lab slip for COVID-19 antibodies and also for some other common viral culprits for people with ME/CFS.


What I Learned

I had a phone consult with her after my lab results came back, and we were both a bit surprised by the results. My COVID-19 antibodies were negative, so that probably wasn’t the trigger (I have since heard the antibody testing isn’t all that accurate). However, I did test positive for adenovirus, which is … the family of viruses that cause the common cold! That was a surprise to both of us (and later, to my primary care doctor) because I rarely catch colds, and I had been at home for most of the past three months, other than an occasional trip to the store with a mask on! But, there it was. Maybe I’d been exposed before the pandemic, and it was still hanging around, due to the immune dysfunction of ME/CFS

The other test that came back positive was for HHV-6. This is a herpes-family virus in the same family as EBV (Epstein-Barr), CMV, VZV, and others. These viruses are common culprits that cause trouble for those of us with ME/CFS. They are all very common in the blood of most healthy adults, but most of us are exposed as children (and get chicken pox or mono or other viral illnesses) and then the viruses go dormant. With the immune dysfunctionof ME/CFS, though, they are prone to getting reactivated. This means that the immune system begins to react to them again, causing the typical crash symptoms we are all familiar with. Since both ME/CFS and Lyme disease can cause these dormant viruses to reactivate, it is likely that’s what happened with me this spring, perhaps due to the combined effects on my immune system of my Lyme recurring and being exposed to some random cold virus. When I first started to see this specialist years ago, my HHV-6 numbers were also high in my initial testing.


Treatments

Back in 2007, when the doctor first noticed my reactivated HHV-6, we treated it with antivirals. I tried a brief round of Valcyte (valganciclovir), but it was too toxic for me. I ended up alternating between Famvir (famciclovir) and Valtrex (valacyclovir)—both mild antivirals that are effective against herpes-family viruses--for about five years. At the time, my viral numbers were positive but not super-high, so my corresponding improvements were modest but definitely noticeable. I stayed on the antivirals for so long because I got Lyme disease about a year into the antiviral treatment, and both the ME/CFS specialist and my Lyme doctor agreed it was best to stay on them until the Lyme was under control, since it is known to reactivate viruses, too.

So, we decided to try the same approach this spring, with just a short course (6 weeks) of Famvir to get the HHV-6 back under control. I started that at the beginning of June, and … I could hardly keep my eyes open for the next two weeks! I would sleep for a solid 10 hours and wake up still exhausted, barely able to drag myself out of bed, and was so wiped out all day that I was useless.

 

After far too long, I finally realized this was a Herx reaction! This is what happens when you treat infections—especially those that have been around for a while—and you get worse before you get better. The antivirals were killing off the HHV-6, and a bunch of dead viral material was flooding into my bloodstream, causing my immune system to think it was under attack (again) and over-respond. We deal with Herx reactions all the time around here, when treating my own Lyme and my son’s tick infections, but it took me a couple of weeks to figure it out!

My mistake was in jumping right into a full dose—one pill a day—of Famvir, so I took a break for a few days until I started to feel better and then restarted it at a much lower dose. This is whatI advise other people to do all the time, so I felt pretty stupid for not taking my own advice! I am now taking just a half pill every 3-4 days. That’s about right for now, and I will gradually increase the dose as tolerated. I am able to function again and have even been able to resume my morning weight workouts (some days) and short walks. I lost a lot of stamina the past few months, but I am working to get it back, little by little, As with everything else with this crazy illness … baby steps!

I wanted to share all this with you because underlying infections are a huge problem for patients with ME/CFS and are often behind our unexplained crashes. Anyone can see an ME/CFS specialist like I’ve got; there aren’t a lot of them, so most of us (including me) have to travel and go outside our insurance networks or national healthcare programs. It’s really the same everywhere right now, unfortunately. Luckily, all of the top experts are used to working with patients long-distance, so most are happy to work with you via e-mail and phone (like I just did) after an initial visit. It is well worth the effort and cost to see one of these specialists, if you can manage it because treating underlying infections (which is just one of many treatments they can offer) often dramatically improves symptoms. Check out my Find a Doctor page for more information, including a list of top ME/CFS experts in the world.

I also encourage you to check out my post on Treating Immune Dysfunction in ME/CFS because the three treatments outlined there are all inexpensive, readily accessible (some you can even try on your own, without an expert), and have resulted in enormous improvements in all symptoms for my son and I. Because of those three treatments, these kinds of random-seeming crashes are rare for both of us now, plus we both feel better every day and can be more active without crashing.

So, that’s where I’ve been the past four months and why I haven’t been posting as much as usual! I can sometimes manage a movie or TV review or a short inspiration post, but I am way behind on research updates and other more complex posts that require brain power! But I am feeling better and coming back to life again, and I hope to be posting more again soon (after a short vacation with our sons next week).

I am happy to be able to take walks again!

Tuesday, June 30, 2020

TV Tuesday: Quiz

Among the few new offerings on cable TV this summer is Quiz, a limited series (just three episodes) based on the true story of a couple who cheated on Britain's Who Wants to Be a Millionaire? show ... or did they? We enjoyed it recently.

Mark Bonnar plays Paul Smith, a network executive who gets excited about the new game show that's been pitched. Its creators say it will be like no other game show in TV history, with a top prize of a million pounds awarded to the contestant who can answer a series of multiple choice questions. He and his team finalize the details of the now-familiar (to us) Who Wants to Be a Millionaire?, and the show begins to air. Meanwhile, we see a married couple: Charles Ingram, played by Matthew Macfadyen, is a major in the British army, and his wife, Diana, played by Sian Clifford, is a huge fan of pub trivia games. She plays often with her brother, Adrian, played by Trystan Gravelle, and their dad is an even bigger trivia fan. So, Diana and Adrian are understandably excited about the new quiz show taking Britain by storm. They study it and connect with other trivia fans online. Soon there is a community of people obsessed by the show, with all kinds of tricks and tips on how to work the system to get accepted onto the show and then to get from the fastest finger chairs to the "hot seat." Adrian and Diana both manage to get on the show and earn some money, but Adrian is seriously in debt, and they convince Charles to go on the show, too. Using their knowledge from the group, they help him get on the show. Diana is in the audience, and another member of the uber-fan group, Tecwen, played by Michael Jibson, is in the fastest-finger seats up front--and later, a co-defendant in court. Charles wins the million pounds, but the show takes him, Diana, and Tecwen to court, saying that they worked together and cheated.

The action in the show, right from the start, moves back and forth between the trial and the earlier months leading up to the game show appearance, so the audience gradually gets a fuller picture of what happened while knowing that they end up in court. We also see both the contestants preparing, and a behind-the-scenes view of the TV crew creating the show. It's only a three-episode series, but it manages to tell an engaging and gripping story. I won't give away how the trial ends (though that is in the real-world news, if you look), but the show keeps you guessing and even ends on an ambiguous note. There is plenty of suspense surrounding the question: did they cheat or didn't they? We enjoyed this short but engrossing show based on an intriguing real-life story.

Quiz is available in the U.S. on AMC. We watched it On Demand through our cable company. It is also available for free on the AMC website. It is also available on Amazon for $1.99 an episode or $4.99 for the full season.




Monday, June 29, 2020

Movie Monday: The Lovebirds

I am so behind in reviewing the movies we've watched! It's almost impossible to find time to write a second blog post on Mondays, after writing my What Are You Reading post (but Movie Monday has such nice alliteration!). Anyway, here is a review for a recent release that we enjoyed last month, The Lovebirds, a mystery-action-romance (yeah, hard to categorize).

Kumail Nanjani stars as Jibran, and Issa Rae stars as his girlfriend, Leilani. The movie opens with their first date, showing how they connected immediately. Before long, though, several months have passed, and we see the perfect couple arguing before a night out together. They head out, dressed up for a dinner party at a friend's house, but both the evening and their fight are interrupted when a cyclist comes out of nowhere and bounces off their car windshield. The two are both stunned, but the cyclist quickly jumps up and rides off, and a guy, played by Paul Sparks, jumps into their car and commandeers it, saying he is a police officer. The chase scene that follows is exciting at first, until Jibran and Leilani realize he's not chasing the cyclist to make sure he's OK or arrest him, but to make sure he is dead (you can see some of this, hilariously, in the trailer below). The supposed cop takes off, leaving bystanders to conclude that Jibran and Leilani killed the cyclist. From then on, the two lovebirds are caught up in a crime caper, trying to find the guy, who they nickname Moustache, who is the real killer in order to clear their names. The run all over the city (New Orleans), changing into ridiculous disguises purchased at a convenience store, breaking into places, and trying to outrun the police, who are looking for them, and solve the crime themselves. Of course, this was not just a simple hit-and-run, and the two unwittingly find themselves stuck in a web of lies and secrets involving some of the most powerful people in the city.

This movie is a whole lot of fun, filled with action-packed scenes, hilarious lines, outrageous situations, and a sweet love story, too. I'm a big fan of Kumail Nanjani, who co-wrote and starred in The Big Sick, a rom-com that is the real-life story of how he and his wife, Emily, met (also recommended). I've been listening to--and loving--Kumail and Emily's podcast, Staying In, during the pandemic. His wonderful sense of humor comes through in this role, and Issa Rae, who I was less familiar with, is very funny here, too. The mystery itself is twisty and unexpected and takes the pair all over the city. The setting was a delight for us as well; we used to live in New Orleans and love to see it on the screen, and it's a fun location for this crazy comedy caper. Kumail and Issa have great chemistry in their roles, and it's refreshing to see an interracial couple on-screen who are both people of color. It's a fun romp, and we enjoyed watching it!

The Lovebirds was originally planned for a theatrical release but was switched to a Netflix release because of the pandemic, so it is available on Netflix.

Have you seen The Lovebirds yet? What did you think?

You'll get a glimpse of the movie's humor and action in this trailer:

Tuesday, June 23, 2020

Summer 2020 TV Preview

The rest of 2020 is looking like a bit of a deserted wasteland for new network TV and even some popular streaming shows, since all shows had to suspend production in March. Many of our past summer favorites won't be around this year or are iffy:  
  • Instinct was cancelled after its second season (a shame--if you missed it, you can still catch the first two seasons on CBS All Access).
  • Ozark was already released in the spring (and we already finished season 3).
  • Stranger Things has been postponed until 2021. 
  • Younger (season 7) is still rumored to be coming this summer, though no date has been announced yet.
We are still watching and enjoying several shows that we started in the spring, including Blindspot, and a few that I mentioned in my Spring 2020 Preview (see trailers at the link): Quiz, The Good Fight, and Snowpiercer. We are also loving and continuing Better Call Saul, Dead to Me, and we're watching The Good Place and Star Trek: Discovery with our son. The Alienist is due back for a surprise second season, starting on July 26. Many of the others I just mentioned will be wrapping up soon, though.

So, our TV plan for summer 2020 is to try some new-to-us streaming shows! I'll mention a few of them here, with trailers, but if you have any other great shows for us to try, please leave a comment! (We have cable, Netflix, Amazon Prime, and CBS All Access.)

We watched the first episode of Tin Star last week, a thriller starring British actor Tim Roth as a police officer who moves his family to a small town in the Canadian Rockies, where an oil company begins to make trouble for him right from his first days on the job. Another favorite of ours, Christina Hendricks, stars as an oil company employee (i.e. bad guy). We are intrigued by the first episode and want to see more, but our son wants to watch it with us, so we're waiting for him to catch up (and the three of us have a few episodes left of Star Trek: Discovery to finish up first). It's available on Amazon and has two seasons so far.



On our son's advice, we also just started another show starring Tim Roth, Lie to Me. Here, he plays an FBI agent who specializes in knowing when people are lying. We loved the first episode--it has a kind of Mentalist vibe to it--and can't wait to watch more! It's a FOX show that ran for three seasons and is available on Amazon or free through IMDB (use the Amazon link to see the free option).



The Stranger is a new British show on Netflix about a stranger who comes to a town and stirs up trouble by revealing people's secrets. It looks like a good, suspenseful thriller, which we always enjoy, so we'll give it a try.



For a completely different tone, all four of us have been talking about wanting to try the much-publicized new Netflix show, Space Force starring Steve Carrell. This is a half-hour comedy (which is now incredibly ironic) that might be a bit too goofy for my husband and I, but we'll give it a try! The cast is top-notch.



We have been loving CBS All Access and are watching lots of great shows on it (including The Good Fight, Star Trek: Picard, Star Trek: Discovery, and all our favorite NCIS shows). We were reluctant to sign up for another streaming service, but it's been well worth the $5 a month. Another show we'd like to try on the service is the reboot of The Twilight Zone, with Jordan Peale as the narrator/host. Its second season starts this Thursday. I've heard from reviews that it's a bit uneven but that some episodes are excellent, so that sounds worth a try, since we are both big fans of the original! I think it looks pretty good, with some great casting.



What are YOU watching this summer? And what streaming shows should we try?

(Besides the shows/links included here, check out the TV Reviews tab for lots of options to try!)

Wednesday, June 17, 2020

Interview with Rachel of Chronic Fatigue Sanity Blog

Hi, all! Trying to catch up a bit, as promised this weekend, though I am still quite worn out.

Back in May, I enjoyed a wonderful discussion with Rachel of the Chronic Fatigue Sanity blog. We only knew each other from our blogs and Twitter (Rachel's profile), where we often comment on each other's Tweets, so it was an absolute delight to meet her "in person" via Skype! She had asked to interview me after reading my book, Finding a New Normal: Living Your Best Life with Chronic Illness.

We both thoroughly enjoyed our time together and agreed to stay in touch. We talked about my background, illness history of me and my family, tips for coping with chronic illness, and other topics from my book.

I can't imbed the video here (way beyond my meager technical abilities!), but you can watch the video at this link, and here is a still shot of the two of us from the beginning.



Hope you enjoy watching the interview/discussion as much as we enjoyed having it! It is always so comforting and supportive to "meet" and/or listen to someone else who shares your own experiences. Now you can "meet" both of us!

You can also follow me on Twitter or "like" this blog's Facebook page, to stay in touch and interact more!

Sunday, June 14, 2020

Weekly Inspiration: Get Outside!

Sorry the blog has been so quiet. My crash that started in March has begun to ease up a bit, but my energy and stamina are still lower than normal. I am behind in everything, including blogging, and trying to catch up. I started antivirals again last week for reactivated HHV-6, so I may have been further feeling the effects of those (you typically experience a period of worsening, called a Herx reaction, before feeling better).

So, there haven't been too many new posts here lately, except for lots of TV reviews (check them out - some great shows on now!) and an occasional Weekly Inspiration (see older ones at the link). I do hope to write a post this week with a more detailed update of my recent downturn, what testing showed, and treatments.

In the meantime, we are enjoying lovely weather here, and that's inspired me to talk about nature and getting outdoors today! We had a cold, wet May and then our temperatures soared up to the 90's (F) in June, but this weekend, we returned to perfect weather--highs in the 70's, lows in the 50's--which for me means we can turn off the air conditioning, and I can enjoy more time outdoors (I'm very heat intolerant these days). Just sitting near the open window in my recliner lifts my spirits!

Below is an excerpt from my new book, Finding a New Normal: Living Your Best Life with Chronic Illness, all about the restorative powers of nature. You can read more about my book or purchase it in print or on a number of different e-book platforms at this link. With feeling so poorly these past months, I often remind myself of what I learned in writing this chapter and how important it is to my physical and mental well-being to spend time outside every day.

This is an exact excerpt from the book, though I have added in some photos. Enjoy and then get outside!




The Restorative Power of Nature

Scientific studies have found that time spent in nature—even for as little as five minutes—reduces stress, improves creativity, reduces self-criticism, and increases kindness.[i] Spending time outdoors also has measurable physical effects, including reduced inflammation, improved mental clarity and memory, and reduced stress response. It even improves immune function, as measured by the improved function of the body’s natural killer cells, with quantifiable improvements lasting 30 days or more after time spent in nature.[ii] These are all very real physical improvements that everyone living with a chronic illness certainly needs.
Aside from scientific research, I know from my own experience that spending time outdoors feels rejuvenating, peaceful, and centering. Before I had ME/CFS, I loved outdoor activities, including long hikes, canoeing, camping, and backpacking. Much of that is beyond my limits now. However, my husband and I still enjoy camping (at our own slow pace), and various treatments for ME/CFS have allowed me to manage short hikes and kayaking. Spending time outdoors is still among my favorite things to do.
Even when I can’t be active, I still have a goal to spend at least 10 minutes each day outside. I lie in my reclining chair on our back deck, looking up at the sky and listening to the birds, and I instantly feel more relaxed. That small amount of time in nature in our own backyard makes me feel better.
Here are some ideas for how you, too, can experience the restorative effects of nature, even if you are mostly homebound.

Just a Few Minutes Outdoors Helps
Some research studies show positive physical and mental changes in people after only five minutes outdoors,[iii] so it doesn’t take much to make a difference! Try lying in a reclining chair or hammock in your yard/garden, patio, or deck. Just that simple change of scenery—from reclining on your normal bed or couch to reclining al fresco—can make you feel better and help you to tune into nature.



Leave the Devices Inside
Although I admit I do sometimes bring my laptop outside to write, you’ll get the most benefit from leaving the phone, tablet, laptop, and other devices inside. I usually don’t even play music when I am out on our deck because it drowns out the sounds of nature. Instead, bring a book or a crossword puzzle out with you, or just grab your pillow and maybe a blanket—and relax.

Immerse Yourself in Nature
With the electronic devices left inside, you can concentrate more fully on nature. You may be surprised at how much of the natural world you can experience from simply lying outside your home for a few minutes and at how restorative it can feel. Gaze up at the sky, noting its unique colors and the variations in light and shadow. Watch the clouds move across the sky, and observe their different types and shapes. Notice how the sky after a summer storm looks entirely different from the sky on a clear fall day. Look at the flowers and trees, appreciating their different colors and shapes and how they change with the seasons.
Listen for the sounds of birds singing and the breeze moving through the leaves of the trees. Smell the air. Breathe deeply and notice the aroma of dry fall leaves, damp earth after a spring rain, or the fragrance of summer blooms.
Focus yourself entirely on the natural world around you, blocking out the incessant noise of our modern life. Even just a few minutes of fully immersing yourself in nature can reduce stress, improve your sense of well-being, and bring positive physical changes.
If you can’t manage a few minutes lying outside, then open a window near your bed or couch (or just look through the glass) and try the same exercises to focus each of your senses on the outdoor world. Studies have shown that simply looking at pictures of nature has positive effects.[iv]



Managing a Longer Outdoor Experience
More extensive time spent outdoors beyond your own yard can bring even more and longer-lasting improvements.[v] That might be too much to manage for some people who are severely ill and housebound. However, many people with chronic illnesses can handle a longer or more immersive experience outdoors, especially after treating aspects of the disease and incorporating effective illness management to allow you to be more active without relapsing.
If you can manage it, take a stroll along your street or neighborhood and notice the trees, flowers, and sky. Even in a familiar place, you can appreciate the changes in weather and seasons. For a change of scenery, try going to a local park or nature center and taking a short walk.
If a walk is beyond your limits, ask a friend or family member to push your wheelchair along a paved path or to take you on a drive through the country. Roll down the window, breathe in the fresh air, and enjoy the sights and sounds of nature.
After treating orthostatic intolerance (OI) and wearing a heart rate monitor, I discovered I can handle a little bit of kayaking. Since it is done sitting down, my heart rate doesn’t jump up as high as when I am walking, and I can rest and just float whenever I need a break. Many parks with lakes or ponds rent canoes or kayaks. If you can’t manage paddling on your own, ask a friend or family member to bring you along in a tandem (two-person) canoe or kayak. Being out on the water is incredibly peaceful and calming.



If you’re up for a more extended outdoor adventure, you might want to try camping. Camping in our pop-up camper and spending more time outdoors than I can at home makes me feel relaxed and content. You don’t have to go far, either; look for local, state, or county parks with campgrounds. Many state parks and private campgrounds offer rental cabins or trailers, or you can rent, borrow, or buy a camper as your home-away-from-home. All public parks have handicapped campsites, and many have at least one wheelchair-accessible trail. You also provide your own food when camping, which helps when you have a restricted diet.



When camping, stick to your normal routines as much as possible. For me, that means an early bedtime and an afternoon nap. We also bring portable lounge chairs so I can recline around the campfire or with my book.
One of the best things about being away from home (even if it’s just a local park) is that I am away from all the usual household responsibilities. I can focus all my energy on relaxing, having fun, and enjoying my surroundings. I love my small daily doses of nature on my back deck, but spending a few hours or a few days immersed in nature elsewhere is truly rejuvenating.

Every chronically ill person is different and has unique needs, even if we have the same disease, but we can each find our own ways to incorporate nature into our lives. The payoff for a little time spent outside is huge, in terms of both emotional well-being and physical health.
So, go ahead! Put away the device you are reading this on and indulge in some time outdoors. Your mind and body will thank you.



[i] Tyrväinen L, Ojala A, et al, “The influence of urban green environments on stress relief measures: A field experiment,” Journal of Environmental Psychology: 38, pp. 19 (June 2014). Barton J, Pretty J, “What Is the Best Dose of Nature and Green Exercise for Improving Mental Health?Environmental Science and Technology: 44(10), pp. 3947–55 (2010).
[ii] Miyazaki Y, Lee J, Park BJ, et al, “Preventive medical effects of nature therapy,” Nihon Eiseigaku Zasshi 66(4), pp. 651–6 (September 2011). Mao GX, Lan XG, et al, “Effects of short-term forest bathing on human health in a broad-leaved evergreen forest in Zheziang Province, China,” Biomedical and Environmental Sciences 25(3), pp. 317–24 (June 21012). Ryan RM, Weinstein N, et al, “Vitalizing effects of being outdoors and in nature,” Journal of Environmental Psychology 30, pp. 15968 (November 3, 2009).
[iii] Barton J, Pretty J, “What Is the Best Dose of Nature and Green Exercise for Improving Mental Health?Environmental Science and Technology: 44(10), pp. 3947–55 (2010).
[iv] Ryan RM, Weinstein N, et al, “Vitalizing effects of being outdoors and in nature,” Journal of Environmental Psychology 30, pp. 159–68 (November 3, 2009). Berman MG, Jonides J, Kaplan S, “The Cognitive Benefits of Interacting with Nature,” Psychological Science 19(12), pp. 1207–12 (December 1, 2008).
[v] Qing L, “Effect of forest bathing trips on human immune function,Environmental Health and Preventative Medicine 15(1), pp. 9–17 (January 2010). Atchley RA, Strayer DL, Atchley P, “Creativity in the Wild: Improving Creative Reasoning through Immersion in Wild Settings,PLoS ONE7(12) e51474 (December 12, 2012).

Tuesday, June 09, 2020

TV Tuesday: The Good Place

Once again, people have been telling us how great a show is for years, but we kept thinking, "Naw, it doesn't sound like we'd like it." We finally tried The Good Place, and my husband, son, and I all love it! Why did we wait so long to try it? We did the same thing with Breaking Bad. I guess we are slow learners. The three of us are enjoying every episode of this smart, funny, warm show about the afterlife.

In the first episode, Eleanor Shellstrop, played by Kristen Bell, suddenly finds herself in the Good Place, after dying on earth. A being named Michael, played by Ted Danson, is in charge of the "neighborhood" that Eleanor has been assigned to. Michael has taken on a human form to make the residents feel at ease with him and is fascinated with all aspects of humanity (though he doesn't always understand them). Eleanor is assigned to her dream house, which comes as a bit of a surprise to her, and her soul mate, a prior philosophy professor named Chidi, played by William Jackson Harper. The surprise is all his, though, when Eleanor admits to him that there's been a mistake, and she doesn't belong there. She was actually a terrible person on earth and did horrible things. She soon realizes, though, that the Good Place is really nice, and she'd much prefer to stay there than get transferred to the Bad Place. She convinces Chidi to help her become a good person, and they embark on an educational journey together, to teach Eleanor all about philosophy and various meanings of leading a good life, while she practices what she's learning. Their next-door neighbors are Tahani, played by Jameela Jamil, a formerly wealthy young philanthropist with a posh British accent, and her soul-mate, a former Buddhist monk, played by Manny Jacinto, who has taken a vow of silence. Eleanor must become a good person and earn her right to stay in the Good Place, and Michael can't know about the mistake.

I'd heard the basic outline of the plot many times before, but what I didn't realize was how clever and funny the writing was, especially in the hands of this talented cast. We all love Kristen Bell in everything she's been in, and I hadn't seen Ted Danson in much since his Cheers days, though my son enjoyed him in CSI. We also didn't expect the warmth of the show; its humor is smart and is combined with an unexpected depth of emotion. Though the setting is silly, cartoonish, and even farcical at times, you really come to care about the characters and what happens to them. It's a brilliant combination that we are thoroughly enjoying.

We are on the last episode of the first season of The Good Place. There are four seasons in all (you may have heard about its big finale just this spring). We are watching it on Netflix. It's an NBC show, so you can also catch it on the new Peacock streaming service or the latest season On Demand or free on the NBC website. You can also stream it on Amazon; most episodes are $1.99 or $19.99 for a full season.

Tuesday, June 02, 2020

TV Tuesday: Snowpiercer

In this time when Hollywood production has come to a screeching halt, and some of our favorite spring TV shows had to end early because they ran out of episodes, a new show premier is something to get excited about! We recently started watching Snowpiercer, a brand-new TNT show that began on May 17. From the creator of Orphan Black (one of our all-time favorites), it is based on a series of graphic novels published in France over 30 years ago (and the resulting movie adaptation that was released in 2013). We've only just begun watching it but are already hooked on this suspenseful, original post-apocalyptic mystery drama.

In this world, global scientists trying to stem climate change inadvertently went too far and created a new Ice Age, with temperatures plunging down to -120 degrees Fahrenheit and below. With the planet now unlivable for humans, a mysterious, wealthy benefactor named Mr. Wilford created a 1,001-car supertrain that circumnavigates the globe (no word on how all those tracks were laid...). The show begins almost seven years after the train departed. Since it never stops, the train is an intricate and ingeniously-designed closed system, where everything is re-used and recycled and nothing is wasted. Within the train's confines is a strictly regulated class society, with official first through fourth classes. As it left the station more than six years ago, though, a group of people pushed their way onboard into the storage areas at the back, creating an inadvertent fifth class, now known as the Tailies. One day, Melanie, played by Jennifer Connelley, who is the ship's "voice" in its daily announcements, appears in the Tail with a shocking request. She pulls one member of the group, Andre, played by Daveed Diggs, out to come up-train with her. In his pre-apocalypse life, Andre was a police detective. They need him now to solve a particularly brutal murder, in order to keep peace among the rest of the train. Another murder with a similar M.O. was committed years ago, and they now realize they pinned it on the wrong person (she's been serving her sentence frozen in a drawer and will now be thawed out and released).

The show has cleverly created a multi-layered story: that of the train itself and its residents and that of a murder mystery which must be solved. In bringing the detective up from the Tail, the inequities of class are highlighted for the audience, as we see the different classes on the train through Andre's eyes, for the first time, as he travels up-train to solve the murder. Every aspect of life on the train is unique and fascinating, from its nightclub cars to its first-class dining rooms to its internal "ocean," where fresh sea urchin and other delicacies can be harvested. The sci fi aspects are intriguing as well, as the train's closed systems are explored, though the main focus of the show is as a drama of humanity and a murder mystery. The supporting cast is great, and both Connelly and Diggs are excellent in their leading roles, with some intrigue introduced right from the first episode. We have only watched two episodes so far, but we are enjoying it and finding it a gripping story with interesting characters and an engaging setting. We can't wait to see what happens next!

Snowpiercer is currently airing on TNT, with three episodes (out of ten) shown so far, and a second season already approved. You can find it On Demand, if you get cable, or for free on the TNT website (the website also includes a cool video tour of the train's 1001 cars). You can also watch it on Amazon, where the first episode is free and subsequent episodes are $1.99 each or $17.99 for the entire season. Both Netflix and Amazon also carry the movie, which I have heard is quite different than the TV show (darker and more violent, without the murder mystery aspect).

Have you watched Snowpiercer yet?

Sunday, May 24, 2020

Weekly Inspiration: 2 Uplifting, Supportive Podcasts

Hi, all! I'm still here! The blog has been so quiet lately, with just a few posts this past month (though some good TV recommendations!), because I have been pretty badly crashed and unable to muster the energy for longer or more frequent posts. I've been worse than usual for months, but it got really bad the last 2-3 weeks. It feels to me like what we call a virally-triggered crash, which has become pretty rare for my son and I in recent years, thanks to immune system treatments. My ME/CFS specialist agreed to test me for a few viruses, including an antibody test for COVID-19 to see if exposure to that triggered this downturn and tests for EBV and HHV-6, two latent infections that most of us have that sometimes get reactivated and need antiviral treatment to calm down again. I should hear back on those test results next week. In the meantime, I've had a few good days at the end of this week, so I am cautiously hopeful (and still taking it very easy). By the way, you can also follow me on Twitter or like my Facebook page for this blog--those both take far less energy, so I can interact and post there even when feeling poorly.

Anyway, today, I am bringing you two podcasts that I recently discovered and have been enjoying/binging! One is focused on ME/CFS, and the other is about the coronavirus pandemic, from the perspective of someone with an immune disorder.


It's Not All About ME
Paddy, in Ireland, hosts this podcast focused on ME/CFS. Here's his own description of the show:
"A guy with ME and a mic. Chat and frequent guests sharing experience of chronic illnesses such as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome."
He alternates between interviews with guests--mostly other people who have ME/CFS--and solo podcasts, with an easy-going, relaxed style that is comforting and fun to listen to. He's an excellent interviewer and quickly builds a rapport with the people he's talking to, bringing listeners into the circle. There is a special kind of comfort and support that comes from hearing other people describe your own experiences and realizing you are not alone.

I've listened to three episodes recently (one solo and two interviews) and enjoyed them all. And guess who one of his upcoming guests will be? Me! He's enjoying my new book and has invited me to be interviewed for the show--possibly for multiple episodes. I can't wait to talk to this interesting, intelligent, and engaging man. I couldn't find a separate website for the podcast, but you can find episodes of the podcast both at Soundcloud and on Apple Podcasts.



Staying in with Emily and Kumail
Emily and Kumail are Hollywood writers (and Kumail is also an actor) who live a life that has some similarities to most of us. You already know their story if you've seen the hit movie The Big Sick, which they co-wrote. The movie tells the story about how the couple met and began dating just as Emily became extremely sick and was hospitalized and ended up in a coma. Obviously, they end up together, but it's a different kind of rom-com that deals with chronic illness. So, switching back to the real world...Emily and Kumail are married and living in L.A. (Kumail stars in a new movie, just released this weekend, The Lovebirds--we enjoyed it last night, so watch for a review here soon!), and Emily still has a serious immune disorder. She seems to be mostly symptom-free with monthly infusions, but the coronavirus hit, with strict stay-at-home orders coming early to California. They are being extra-careful because of Emily's condition.

The podcast is the two of them recording from home. They talk very openly and honestly about the challenges of isolation, stress, and fear during this time (which they call The Weirds). They have a regular feature called "What weird thing made you cry this week?" If that sounds depressing, it's just the opposite! They are both very, very funny (he started as a stand-up comic and they both write comedy) and even funnier together. They often go off on crazy tangents that get me laughing out loud so that my husband gives me strange looks! On one show, Emily said the new Charmin commercial with the family of bears gathered around the TV made her cry (I could relate), and they went off on a discussion of why Charmin uses bears to sell toilet paper, whether bears poop while hibernating, and more. They talk about what they're eating during the pandemic (including a regular feature on "what weird things have you been eating while at home?" - sensing a theme here?), and how they're coping. They also have lots of great recommendations for TV and movies to watch (since they're in the industry) and video games they're enjoying. I love every episode for its comfort and kindness ... and also that they always make me laugh hysterically and forget whatever I'm upset about that day. They feel like good friends by now!


This article about Staying In includes links to all the different ways to listen to it.

Hope you enjoy these two podcasts. Watch for my own interviews on It's Not All About ME, probably coming up in a month or two. I'll let you know what they are scheduled.

What podcasts or other media are lifting you up and providing comfort these days?