Wednesday, March 22, 2017

Webinar by Dr. Rowe: ME/CFS in Adolescents & Young Adults





Dr. Peter Rowe of Johns Hopkins, renowned pediatric ME/CFS and OI specialist, recently gave a webinar: A Clinical Approach to ME/CFS in Adolescents and Young Adults: A Practical Primer. This was part of the Solve ME/CFS Initiative's wonderful webinar series. You can watch his full webinar at the link above, on the Solve ME/CFS website, watch it on YouTube, or watch it right here:




Although the talk is aimed at doctors like pediatricians and family doctors (and is much-needed for that audience!), it is also very interesting and informative for patients and parents, even someone like me who spends a lot of time reading and researching our illness. His talk is aimed at treating children and teens, but everything he says is also applicable to adult ME/CFS patients. He covers:
  • Diagnosis of ME/CFS and how to exclude other conditions
  • The critical role of Orthostatic Intolerance (OI) in ME/CFS
  • Ehlers-Danlos Syndrome and Joint Hypermobility and the significant overlap with ME/CFS
  • Step-by-step approaches for doctors to investigate their patient's condition and try treatments
  • Patient case studies - both successes and  tougher cases
He briefly touches in the role of infections, immune dysfunction, and mitochondrial dysfunction (in the Q&A at the end), though those topics are not covered in great detail.

If you want even more from Dr. Rowe, here is an earlier webinar he did for Solve ME/CFS, focused on Post-Exertional Malaise (which is also closely related to Orthostatic Intolerance).

I highly recommend you watch this 1-hour presentation - it's chock-full of useful information.

Even better: Send the link to your doctor or your child's doctor and ask him or her to watch it!

Tuesday, March 21, 2017

TV Tuesday: Lilyhammer

When my mother was visiting a couple of weeks ago, my husband and I exchanged TV recommendations with her. We told her about Sneaky Pete (which she and her husband are loving) and Good Girls Revolt, and she told us about a unique comedy called Lilyhammer. It was a good recommendation - we are now hooked on it, too!

Lilyhammer features a set-up pretty much guaranteed to bring plenty of laughs. An infamous New York City mobster named Frank "The Fixer" Tagliano, played by Steven Van Zandt of The Sopranos, agrees to testify against his former boss and colleagues, if the FBI will protect him and relocate him. He says he won't be safe anywhere in the U.S., but he remembers enjoying watching the Winter Olympics in Lillehammer, Norway, so that's where he goes, with a new name, Giovanni Henrikson.

Giovanni, or Johnny as he asks his new acquaintances to call him, is a little disappointed when he first sees his modest home and tiny car in snow-bound Lillehammer, but he immediately begins to make the town his own. He joins classes for new Norwegian citizens, where he meets an attractive and out-of-work teacher named Sigrid, played by the lovely Marian Saastad Otteson. Right from the start, Johnny does things his own way, which is quite different from the way Norwegians typically do things. He is very polite but doesn't take no for an answer and believes there is no problem that can't be solved with money or the proper "motivation." From setting up a business to making friends to getting his driver's license, Johnny makes his way through Lillehammer in a most un-Norwegian way. A local Barney Fife-type police officer, bored with the tiny town's lack of crime, suspects something is up with Johnny...but he is way off-base in what he suspects, adding another dimension of humor.

My husband was skeptical at first. He is from Oklahoma and is really not into most mob-related TV shows or movies - just not his thing. However, Johnny has quickly won us both over. The entire cast (mostly Norwegian with no big Hollywood names beyond the lead) is excellent and fun to watch, the laid-back atmosphere of Lillehammer is welcoming, and Johnny's fish-out-of-water escapades are a lot of fun. Besides having plenty of humor, the show is also surprisingly warm, and you soon find yourself rooting for Johnny, despite his unorthodox methods.

We've only watched three episodes so far, and there are three seasons of the show on Netflix, so we look forward to a lot more fun with Johnny. You can also watch Lilyhammer on DVD or streaming on Amazon for $1.99 an episode or $12.99 for the entire first season (links below).



    






Sunday, March 19, 2017

Weekly Inspiration: Author Led Life of Kindness & Creativity

I was stunned this morning to hear the horrible news that Amy Krouse Rosenthal died of cancer a few days ago. Born in the same year as me, a writer with kids who grew up in the suburbs of the 70's, I felt a connection to her. As she put it, "we shared a moment (in the form of an e-mail exchange)" back in 2010, after I reviewed her book, Encyclopedia of an Ordinary Life (which I loved). In fact, she just e-mailed me again in October to tell me about her new book, Textbook Amy Krouse Rosenthal. I had no idea she was battling cancer then and was crushed to hear today that she lost that battle. She was a smart, funny, clever, playful, and kind person - and all of that came across in her writing.

You can read my review of Encyclopedia of an Ordinary Life (and then go read the book!). Sadly, I never received the review copy of Textbook Amy Krouse so I haven't read it yet, but I would like to.

I also posted this trio of fun and amusing videos that Amy made, in part to promote Encyclopedia of an Ordinary Life - they are short and well worth watching - clever and funny, just like Amy.

Amy's website tells you a lot about her life and her books - and again showcases that wonderful sense of humor. The website includes dozens of short videos that Amy made. One of them, Thought Bubble: Kindness, was the Winner of Best Animation at the Peace On Earth Film Festival 2011. You can watch that one right here:



Amy has also given three TED talks (three! I had no idea). In this one, she explains how she launched her project Beckoning Lovely -  a warm and inspiring concept and project:



Hopefully, that last video will inspire YOU to live your life as Amy did - with warmth, kindness, and creativity. Reach out to other people. Look for the lovely in your own life and share it with others.

The best way to honor Amy's memory is to enjoy the wonderful books she's written (many books for children, in addition to these 2 for adults). She was a talented, kind, smart, funny woman who will be sorely missed.

   
    
Encyclopedia of an Ordinary Life
by Amy Krouse RosenthalTrade Paperback


Powells.com
  
Textbook Amy Krouse Rosenthal
by Amy Krouse RosenthalHardcover
Powells.com

Friday, March 17, 2017

Blog Improvements and Updated Posts

I thought I should tell you about some blog improvements and updates I am working on, since many of the updates are buried in older posts. I've been posting them on Twitter and Facebook, but for regular readers or new blog readers just visiting the home page, you may not have heard about these yet.

I wrote my very first post for this blog on February 16, 2006, so I have been blogging for more than 11 years now...and other than writing new posts each week, I have done almost nothing to improve or update my blog. The result is that it is looking quite dated, and some of the older posts need updating. Believe it or not, after 11 years of blogging, I am still a novice! I know a lot about writing (I work as a freelance writer), but blog design and all the rest of it is still mostly a mystery to me. I have been trying to rectify this by learning more about blog design and other blog-ish topics I don't understand, and I have started to make some changes here.

Most importantly, I am working my way - slowly - through updating my most popular and informative posts. I am revising where new information or research is available, writing more on our own experiences since whenever the post was first written, and adding in recommendations for specific supplements or other products, where applicable, since I get asked about that a lot.

So, far, I have revised and updated these blog posts:
Unfortunately, each update takes me a long time, so the process is slow, but I hope to get to many more important posts in this updating process. I spent hours yesterday on the methylation post, just trying to get the text to stop switching to "xx-small" every time I published it! I finally figured that out but couldn't stop the font from changing type several times. I'm learning, but it's a slow process!

On the design front, I plan to:
  • Change the design itself (I know some people have trouble reading with the polka-dot background).
  • Update the sidebar, including other blogs to visit and other resources linked to.
  • Add an About Me/Us page (only about 11 years late on that one!)
  • Add a Where Do I Start? page to help new patients and/or those who are new to the blog to find the most important posts that can help them the most.
Whew, so that's a LOT of work coming up for me, but I will also be sure to keep adding new posts & information to the blog.

Please let me know YOUR needs and ideas - is there anything that you would like to see here?  Anything that would help you as a patient or you as a blog reader to get the most of this blog? Please leave comments to let me know how I can better help you.

And thanks for your patience as I struggle with finally learning about blogging 11 years after the fact!

Thursday, March 16, 2017

Donate to Research While You Shop!

iGive is a great way to earn money for ME/CFS research - or whatever your favorite charity is! - without costing you a cent.

I start at the iGive site for any online shopping and earn money for ME/CFS research - like the sweater I bought on sale at Lands' End yesterday to replace the one my son has outgrown! Birthdays, holidays, stocking up - we also donate for all the supplements we buy online - and those really add up!

Even better: From now until March 31, if you sign up for iGive (it just takes a moment to enter your name & e-mail and choose your charity), they will donate an EXTRA $5 to the Solve ME/CFS Initiative for ME/CFS research (my chosen charity)! Just use this iGive link to sign up today and choose your favorite charity!


Monday, March 13, 2017

Movie Monday: Mockingjay Part 2

My husband and I (and our sons, too) loved The Hunger Games YA trilogy by Suzanne Collins, her now-famous chilling dystopian series. We watched each movie adaptation: The Hunger Games, Catching Fire, and Mockingjay Part 1, so we figured we needed to finish it off and watch the final movie, Mockingjay Part 2 (even though it annoys me to no end when Hollywood takes a short novel and turns it into 2 separate movies!). It was a good end to the series...though, of course, the book was better!

If you haven't yet seen or read the beginning of the series, you should go back to those first. Read the books, which are outstanding for teens and adults and very well-written, and then see the movies, which are good adaptations with excellent casting.

So, Mockingjay Part 2 picks up where Mockingjay Part 1 left off: Panem is now at war and Katniss has agreed - reluctantly - to be the face of the revolution, though she still has some misgivings. She and her family and some other familiar characters from earlier movies are safe in District 13 at the start of the movie, but they soon join the fighting in the Capitol. Katniss wants President Snow to pay for all that he has done.

This last part of the story focuses on the war, with a lot of action-packed scenes of battle. It's very well-done, and the special effects are excellent, especially of some of the high-tech forms of warfare that the Capitol unleashes on the rebels. It's been quite a while since I read the books, so there was still some suspense in it for me, as I didn't remember all the details of how it ended.

Of course, as is almost always true, the movie wasn't as good as the book. One thing that was lost in the movie adaptation was Suzanne Collins' very thoughtful and thought-provoking musings (through Katniss) on the nature of war, the price of war, and issues of power and wealth - all topics very relevant to our own world. I described this in detail (no spoilers, though) in my review of the book. The first Mockingjay movie - and to a lesser extent, this one - did show Katniss' moral and ethical struggles to some extent, but it is harder to delve deeply into those kinds of thoughtful issues on the screen than on the page. For me, that was the best part of the book - and the entire trilogy: Collins' thought-provoking commentary on our own world, through the lens of this dystopian world.

But, overall, we enjoyed the movie, and it was a good conclusion to the series. It is action-packed and full of suspense, and Collins is never afraid to kill off significant characters if it makes sense to the plot, so you really don't know what will happen. The cast, including Jennifer Lawrence as Katniss, is excellent. We were both glad to have seen the final movie to finish off the series.

All four movies are now available on DVD. You can stream The Hunger Games or Catching Fire for a fee on Amazon (though, oddly, the DVDs are cheaper) and the last two Mockingjay movies are both currently free on Amazon Prime (see links below). All four movies are also available through Netflix (DVDs only).



              

Sunday, March 12, 2017

Weekly Inspiration: Finding Your Way Out of the Storm

This week's Weekly Inspiration comes from a middle-grade novel I recently read called The Honest Truth by Dan Gemeinhart (my review at the link - don't worry - no spoilers!). The story is about a young boy named Mark with a serious illness (probably cancer though it's not stated); he's twelve years old in the book, and he's been sick since he was five. Fed up with so many years of illness and treatments and discouraged by some recent bad news, he runs away from home, with the goal of climbing Mount Ranier. He decides to tackle this big dream of his now because he's afraid this will be his last chance. Of course, he has all kinds of adventures (and challenges, including a big storm) along the way and meets some very interesting people.

Here's what Mark says toward the end of the novel:
"I thought of all my sickness, all my anger, all my fear. All that was just the darkness, just the storm. I got lost in it. But there's always the other side of the storm. And the people who get you there.

All the world's a storm, I guess, and we all get lost sometimes. We look for mountains in the clouds to make it all seem like it's worth it, like it means something. And sometimes we see them. And we keep going."

          - The Honest Truth by Dan Gemeinhart

I thought that was such an apt metaphor for living with chronic illness. We can so easily get wrapped up in those dark emotions, the storm, but we need to remind ourselves that the storm will end - there is always another side to it, after you've come through it. Like Mark, our illness may not go away, but we can still come out of that darkness of anger, fear, and bitterness to the other side, where the sun is shining, people care about us, and there is hope.

Besides sharing this thoughtful and relevant quote with you, I also chose a quote from this particular book because it is an excellent middle-grade novel. I know that many people with ME/CFS and related illnesses have trouble reading - concentrating, following complicated plots, etc. One possible solution is to read middle-grade books or books for teens and young adults. The Honest Truth is a great example of a book written for kids - shorter, with simpler language and a simpler plot than most adult novels - that is still thoughtful, moving, and full of suspense. It's an excellent novel for anyone, at any age. And, in case you are worried that it's depressing since it's about a sick kid, it's really not - it has plenty of emotional depth, but the focus - as you can see from the above quote - is on hope.

For more examples of middle-grade books, this link will take you to all of the middle-grade book reviews I've written (a lot!). Use this link to check out the teen/YA books I've reviewed (note that some, like second one listed, were actually written for adults but are appropriate for teens). For more, older reviews of middle-grade and teen/YA books, check out my blog Great Books for Kids and Teens - I combined that one with my Book By Book blog a few years ago, but it still includes hundreds of archived reviews. There are a lot of reviews between the two blogs, so if there is a specific kind of genre you like - realistic fiction, mystery, dystopian, etc. - just let me know in the comments, and I can recommend some of my favorites in that category for you.

You may find - as many with ME/CFS do - that you can manage reading or listening to on audio books written for kids and teens, even though most adult books are too difficult for you to follow.

How about you? Have you, like Mark in the book, ever felt like you made it through a storm of dark emotions and came out the other side? Have you ever tried reading or listening to books for kids or teens?

Monday, March 06, 2017

Movie Monday: Before I Fall

My husband and I took a last-minute mini vacation this weekend. We only drove an hour away and were just gone for 28 hours, but it was a nice getaway and just what we needed after a month filled with sick college kids at home!

One of the fun things we did this weekend was to finally try out the Dine-In Theater that is located near us. We stopped there for lunch and a movie on our way out of town. It was a fun experience, though the food was overpriced for the quality, as you'd expect. I was a bit disappointed that the recliner seats weren't in the same theaters as the dine-in options (and in those giant plush chairs, my feet dangled a foot off the ground!). But I made do and tucked my feet up into the large chair. Oh, and the movie! That's right - this is a movie review....

We saw Before I Fall, a new movie based on a very popular young adult novel by Lauren Oliver. I had wanted to read the book and never got around to it, so I was glad to see the movie adaptation. It's like Groundhog Day for teens.

Samantha, played with great depth by Zoey Deutch, is one of the most popular girls in her senior year at high school, dating one of the most popular guys and hanging out with a group of friends on top of the social strata. February 13th is set to be one of her best days ever. It's Cupid Day at her school, when students can buy roses for each other. As Samantha and her best friends carry their roses around school that day, a quiet boy named Kent, played by Logan Miller, asks Samantha if she'll come to a party he's having that night. After a typical day as Queens of their school, Samantha and her friends get ready for the party. This is also a big day for Samantha because she's told Rob that today is the night when they will finally go all the way, so her friends help her look extra-special.

Things begin to go awry at the party, though, and soon tumble out of control. One bad thing follows another, and the day ends in tragedy. But the next morning, Samantha wakes up safe and sound in her bed and is confused to see the same text about Cupid Day that her best friend, Lindsay, sent yesterday. It turns out it is yesterday, and Samantha seems to be reliving the same day again. This happens over and over, usually with the same - or similar - disastrous outcome. As she relives that same day over and over, Samantha begins to see behind the beautiful facade of her life and the lives of those around her and to look deeper. She becomes determined to somehow get things right, to change things for herself and others, so that she can stop this endless loop.

I knew the plot of the book and was excited to see the movie, but I wasn't sure how my husband would feel about a movie filled with teens. We both ended up enjoying it very much. Although it has all the familiar teen tropes at the beginning - the popular kids, the mean girls, the outcast, etc. - it turns out to have a lot of depth to it, as Samantha peels away the layers of her life, one at a time. The cast and acting are quite good, especially by Zoey as Samantha, and the plot is gripping. It is also quite thought-provoking to think: What would you do? How would you make things right? Though some of Samantha's actions as the movie progresses are a bit predictable, there are still plenty of secrets and surprises to discover.

Before I Fall was just released on March 3 and is currently in theaters. Its DVD and streaming release date has not yet been announced. So, you have plenty of time to read the book first, if you prefer!




Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.


 

Before I Fall is in theaters 3/3. Purchase your tickets in advance from Fandango and don't get sold out!

Thursday, March 02, 2017

My 15th Illiversary

Celebrate?
Huh, what do you know? It's March 2 again. Another year gone by of my post-ME/CFS life. Today makes 15 years, which seems like quite a milestone. The anniversaries don't really bother me that much anymore, though.

I was feeling bittersweet on my 5th Illiversary, feeling a bit better overall with treatment, but recalling that researchers and doctors often cite 5 years as a turning point (that few people completely recover after being ill longer than 5 years).

By year 8, I was feeling less contemplative. By then, having ME/CFS was just a part of my new normal.

When I hit 10 years of illness, I barely noticed the anniversary date, even though it was a milestone year. I was focused on my sick kids by that point, and my own illness had become the norm for me by then.

Last year, my 14th Illiversary, was a triumph of sorts, as I returned to Baltimore with my husband, where on the first day of my illness, we spent a horrible day back in 2002 that was supposed to be a fun day. Last year, I was able to enjoy Baltimore, including plenty of walking (though I still needed my afternoon nap!).

I'm sure I would feel differently about my ME/CFS anniversary if I was still as sick as I was in those first few years, but over the past 15 years, I have found many effective treatments that have greatly improved my symptoms (and my life), allowing me to be much more active and making crashes rare. I still need my daily nap and have some limitations, but I am quite happy with my life these days. I took a walk with a good friend this morning (wearing my heart rate monitor!) and then spent most of the day writing, so that's a good day for me. Ten years ago, I couldn't have even been able to sit up to write - I had to lie down with my laptop (beta blockers are to thank for that improvement).

So, Happy Illiversary to me! 15 years seems like a lot, but it's mostly just normal life for me now.

Tuesday, February 28, 2017

TV Tuesday: Sneaky Pete

Last summer, Amazon released a pilot for a new show, Sneaky Pete. My husband and I watched...and loved it! But then, there were no more episodes. We were thrilled to hear they finally posted more episodes in January and have been enjoying this unique show with a great cast, about a conman who steps into someone else's identity.

The first episode opens in prison, with a guy named Marius, played by Giovanni Ribisi (who will always be Pheobe's brother from Friends to me), getting really sick of listening to his cellmate, Pete, reminisce about his idyllic childhood on his grandparents' farm. Then, Marius realizes there is an opportunity here. He'll be getting out soon (and Pete is serving a long sentence), and he'll need a place to hide out from the gangsters that will come after him as soon as he's released. So, he changes tactics and encourages Pete to talk, describing the farmhouse, telling him all about each member of the family, and more. It seems that Pete's grandparents have a lot of money hidden in a safe in their bail bonds office, which could help Marius pay off his debt to the gangster and finally be free.

So, when Marius is released, he heads to Pete's grandparents' house and presents himself as Pete. Since they haven't seen Pete since he was 8 years old, they have no reason not to believe him. His grandfather, played by Peter Gerety, welcomes him home with open arms, while his grandmother, played by Margo Martindale, is a bit suspicious at first. His cousins - Julia, played by Marin Ireland, and Taylor, played by Shane McRae - have fond memories of playing with Pete as kids, so they are thrilled that he's back. Grandma and Julia even begin to teach the phony Pete the bail bonds business. Marius kind of likes being a part of this family.

Meanwhile, back in NYC, Marius' brother, Eddie, is in big trouble because the gangster Vince, played by Bryan Cranston, is using him as leverage to try to get the money that Marius owes him. Marius always protected his little brother growing up, so he's frantic to pay Vince off and keep his brother safe. However, his scheme to get at Grandma & Grandpa's money runs into a few snags.

With each episode, Marius gets deeper into his role as Pete, with plenty of close calls and being constantly worried that someone will figure things out, particularly his teenage cousin, Carly, who is quite sneaky herself. Meanwhile, he's trying to get at that money and keep tabs on Eddie. Oh, and he - Marius, not Pete - is supposed to be checking in with his parole officer in NYC regularly (played hilariously as a positive-thinking zealot by Malcolm-Jamal Warner). To keep things interesting, it turns out that Pete's family has some secrets of their own.

We are really enjoying this show. The cast is superb, the writing is excellent, and the twisty plot is very, very clever. It's always fun when you, as the audience, knows more than the characters in the midst of the story. It is suspenseful and action-packed and will keep you guessing, but it is also full of warmth and humor. There are 11 episodes so far in this season, and I see that IMDb already has a season 2 listed for 2018.

Since this is an Amazon Original series, it is available only on Amazon Prime (link below).



Monday, February 27, 2017

Movie Monday: Spectre

With our oldest son home from college all last week with the flu, the three of us watched a lot of Colony and Travelers (our latest TV obsession) but broke things up with a movie mid-week. They talked me into Spectre, the latest James Bond film. Now, let me be honest right from the start - I'm not a huge fan of James Bond movies in general. Fast cars, cool gadgets, hot women, lots of fighting & guns - it seems to be a guy thing to me. That said, however, I ended up enjoying this one!

This is Daniel Craig's 4th film as James Bond, and it starts out as you'd expect - with an action-packed sequence, this time in Mexico, complete with gunfire, falling buildings, speeding cars, and, of course, some spectacular moves by Bond (while wearing a neat suit). This was all to thwart a terrorist attack planned later in the day for a packed stadium. Bond discovers there is a secret global organization called Spectre behind both this attack and many other international threats.

Back home in London, there is a new M, played by Ralph Fiennes, who is fighting a political battle to keep the 00 program alive, as others in MI6 want to dismantle it and replace it with a new 24-hour electronic surveillance system. So, for pretty much the entire movie, Bond is on his own, supposedly on leave and with no authority from MI6. But he does have help behind the scenes, including some cool technology provided on the sly from Q. As usual, Bond's exploits take him across the globe, from snowy mountains to the hot desert and everything in between. And, of course, there are a couple of gorgeous women along the way.

One of my problems with many Bond movies is that the plots are so complicated you can barely follow them. This one is complex, but I had no trouble keeping up, and I found it engaging - something solid to hold all those action scenes together. I also enjoyed the side plot about the 00 program itself being in danger. Other than that, I'm not sure exactly why I liked this Bond movie better than other recent ones. I asked my husband, and he said he liked it but that Quantum of Solace was his favorite of the Daniel Craig era.

We watched Spectre for free on Amazon Prime (link below). It is also available on DVD, including from Netflix and Redbox.

Are you a fan of James Bond movies? Which one(s) are your favorites?



Thursday, February 23, 2017

My Progress in 2016 and Goals for 2017

Here it is the end of February already, so it's about time I finally post about my new year goals, don't you think? My college sons were home all January for winter break and most of February for one infection after another, so it's been a hectic start to the new year!

I wrote about my goal-setting process in a recent article for ProHealth: Setting Goals When You Are Chronically Ill (you can read the full article at the link). There, I explained how I have lifetime goals and then set more specific objectives and targets for each of those goals at the start of every year and track my progress. It's a process that anyone can use - not to set unachievable resolutions that will soon be forgotten but to set reasonable step-by-step targets to help you actually get what you want out of life...even in a life of limits, like ours.

You can also look back at my 2015 progress and 2016 goals (those related to health & wellness anyway).

Lifetime Goals
This year, after writing that article for ProHealth, I realized that my Lifetime Goals probably needed some minor adjustments since I hadn't really revised them (only added to them) since getting sick!

So, here are my New and Improved Lifetime Goals:
  1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
  2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
  3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
  4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
  5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
  6. To give back, help other people, and be part of a community.
SO THAT, I feel happy and content and can spend my time doing things I love.

I feel good about this revision, as it more closely aligns with my life as it is now, with the limitations of my health, my sons now young adults, and no longer being able to contribute a lot to our income (though I contribute in other ways, like handling the medical bills).

2016 Progress
I'm a very data-driven person, so I won't bore you with the details of my progress in 2016, but you can look back here to see what some of my health-related targets were and here is a quick summary of my progress in 2016:

The bottom line for 2016 was an exciting one  -
2016 was my best year ever since getting sick almost 15 years ago!

How do I know this? Like I said, I like data. I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This also helps me to tell whether a new treatment is helping. My annual average for 2016 was 2.2, which was an 11% improvement over 2015, and a huge improvement over my early years of illness. I was crashed only 5% of the days in 2016, a stunning achievement, since I usually range between 10-25% days crashed in a typical year! It was also one of my most-active years ever, another indication that I felt better and could do more.

How did I improve my health in 2016? Well, that's complicated - mostly an on-going process and the result of not one miracle cure but a whole bunch of treatments over the years that have each helped a little bit, building on each other over time. The best summary of what has helped me (and my son) the most is in the blog post, Effective Treatments for ME/CFS. In 2016, what helped me improve further was getting even better control over chronic yeast overgrowth (by staying on prescription antifungals) and starting B12 injections (I quit being such a baby about shots!) and glutathione injections. I think the glutathione injections have been especially helpful and will write a blog post about that soon.

2017 Health-Related Targets
I won't bore you with all my detailed targets for writing, family, home & finances, etc., but here are my health-related Objectives and Targets for 2017:

1. Try New Treatments (this is an objective every year - I never stop searching for things that will help my son and I to improve our health & our ability to function).

2. Take Care of Myself:
  • Rest when symptoms flare (>3)
  • Do 2 quiet things just for myself each week (no multi-tasking!)
  • Meditate at least 10 minutes every day
  • No computer after 7 pm
  • Do 2 fun things each week that are not TV
  • Take one "day off" each month
3. Improve Stamina:
  • Walk at least 4x each week (I have worked up to this over the course of years, after first treating Orthostatic Intolerance).
  • 10 minutes of gentle yoga stretches every day.
  • Muscle strengthening at least 4x per week (same as walking, plus I do most of it on my back to keep my heartrate down).
Much of the targets under Take Care of Myself may seem pretty basic, but I still struggle with taking care of myself, taking time out for fun, resting when I should, and relaxing. In fact, as I've improved, I've naturally wanted to do even more, so these kinds of simple self-care actions are even tougher now. My time and energy are still so limited that I want to be as productive as I can when I am up and feeling OK...so I need these reminders to take some time out for myself.

We are each at a very different place in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. This helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed.

Have you set any goals or objectives for yourself for 2017? How was 2016 for you? Please share in the comments below!

Tuesday, February 21, 2017

TV Tuesday: Travelers

If you've been missing the awesome Eric McCormack since Will & Grace went off the air and Perception was cancelled, your wait is over! He stars in a new sci fi show on Netflix that my husband, son, and I are completely hooked on: Travelers. Our son has been home sick from college a lot the past few weeks, so we have been binge-watching this intriguing, original, exciting show!

The premise of the show is that the Earth is dying in the future, hundreds of years from now. Much of the destruction can be traced back to a disaster occurring in the 21st century that set off a series of devastating effects across the globe. Their solution is to send people - Travelers - back to our present day to try to stop the disaster and change the course of history. In the opening scenes of the show, we see four different people almost die and then, within moments of their death, their bodies are suddenly taken over by Travelers, and they live.

The Travelers have been trained to assume the identity of their host body's life, without letting anyone around him or her know that anything has changed. This is a challenge because these people from the future are totally unaccustomed to life in the 21st century. They have studied their host's life, through official records and social media, but that only tells them the basic facts. They operate according to strict rules - called Protocols - designed to keep from alerting anyone to their presence or disrupting 21st century life (other than saving the world, of course).

Because they are limited to host bodies in the same region who die at roughly the same time and are suitable to be hosts, the team at the center of the show is a motley crew. Marcy, played by MacKenzie Porter, is a mentally challenged young woman who can barely take care of herself and is under the care of social services (a bit of an error in planning for the Travelers). Trevor, played by Jared Abrahamson, is a high school football champion. Nesta Cooper plays Carly, a young single mother with a baby and an estranged, abusive husband. And Phillip, played by Reilly Dolman, has the bad luck to be a heroin addict. Though there is an intelligent, highly motivated mind from the future inside, he is stuck with his host's addiction. And finally, Eric McCormack plays Grant, an FBI agent and the leader of this away team of Travelers.

There are two integral pieces to the show: each of the travelers trying to fit into his or her new life and the missions they are given from their leaders in the future for trying to alter the course of history and save the planet and the human race. Both aspects are fascinating and ever-changing and make for a very immersive and suspenseful storyline. All three of us love this show. Our son was a little slower to get into it, but after a few episodes, he was hooked, too. As you watch each episode, you learn a little more about the future world that the Travelers come from (our future) and the events that lead to such a disastrous outlook. It is exciting, fast-paced, and completely gripping. I can't wait to watch the next episode tonight!

Travelers is a Netflix original program, so it is available exclusively on Netflix.

Have you watched Travelers yet? What new shows are you hooked on?






Monday, February 20, 2017

Movie Monday: La La Land

Last week, on Valentine's Day, my husband and I went out to dinner and then to the theater to see La La Land. Fortunately, Valentine's Day fell on a $5 Tuesday at the local theater, and this seemed like a nice choice for the holiday. We both very much enjoyed this joyful, original movie that harkens back to Old Hollywood.

The opening scene gives you a good idea of what the rest of the movie has in store. In the middle of a traffic jam in LA, we see the drivers of the stuck cars suddenly jump out of their vehicles - dressed in bright, primary colors - and do an awesome song-and-dance number in the street and on the roofs and hoods of the cars. It's pure Broadway musical and full of joy! Then, the traffic begins to move, everyone gets back in their cars, and we catch our first glimpse of the main characters.

Mia, played by the adorable Emma Stone, is in the way in her Prius, and Sebastian, played by Ryan Gosling, is behind her, gets impatient and honks, and drives around her car with a snarl at her out the window. Not a very auspicious start for this love story. Mia is an aspiring actress, working in the coffee shop on one of the big movie lots, dreaming of the day when she will be the big star turning heads as she grabs a coffee. Mia goes on one audition after another, but the competition and her lack of success are depressing...and these aren't even good parts.

Sebastian is a jazz musician who dreams of having his own jazz club one day. He even has the spot picked out - a famous old jazz club that is currently a Samba & Tapas place. For now, he has a job he hates, playing piano in a restaurant. It's the holiday season, and the owner makes it clear that he wants him to play only classic holiday standards, no jazz or anything creative. For Sebastian, it's a soul-sucking job.

Mia and Sebastian meet up again, at a Hollywood party, and soon begin to date. So, yes, this is a romance, but it's not at all predictable or formulaic. It's about love, yes, but even more about reaching for your dreams and being true to yourself. It's a wonderful story, where people occasionally burst into song and start dancing. Both Stone and Gosling are wonderful in it - who knew with the dark, brooding roles Gosling usually plays, that he can dance and play the piano and smile like that? La La Land is an homage to Old Hollywood and to Broadway musicals, but it is also a story with emotional depth. This is definitely a feel-good movie, filled with the joy of art - drama, music, and dance - that will leave you tapping your feet and smiling.

La La Land is currently in the theaters. It swept the Golden Globes, winning 7 awards, including Best Picture and Best Actor Awards for both Stone and Gosling, and has been nominated for 14 Academy Awards. I'm glad we saw it on the big screen, with all that glorious color and sound, but it will eventually come to DVD and streaming (no release dates have been announced yet, though DVDs are already available for pre-order).



Sunday, February 19, 2017

Weekly Inspiration: Reconnecting with Compassion

I was browsing through the TED talk website this morning, in search of inspiration to share with you, and I found myself drawn to the talks on compassion.

Certainly, our current political state worldwide makes compassion an important topic right now, but I am also drawn to this topic in a far more personal way. Compassion and kindness are very important to me, and I try to embody those concepts in my own life. We always taught our kids that treating others with kindness and respect is the most important thing in life, and living with chronic illness has only strengthened that belief.

I have always felt a strong pull to reach out to others and improve the world around me. Living with ME/CFS for 15 years, much of that reaching out has been focused on wanting to help others suffering with chronic illness, who face similar challenges to my own. I spend a large portion of my limited time/energy to help others, through this blog, Twitter, e-mail, and Facebook groups. While most people are grateful for help and support, my efforts are not always met with compassion and kindness in return. Several times - including very recently - I have offered information, support, or compassion and been met with anger, bitterness, a vitriol that is hard to fathom, and sometimes even a personal attack.

Intellectually, I understand that some people struggle more to accept this life of chronic illness and may be stuck in the "anger" stage of grief, but it still hurts. My response is often to try even harder to get through to them, to offer help, to provide compassion, but that often results in more hurt for me. Sometimes, you just have to give up (a hard lesson for me).

So, with this on my mind this morning, I found a TED talk by Krista Tippett about compassion that I enjoyed. It's all about what compassion really means and why we need it in our lives. This is an important lesson for our world right now, both politically and personally.



Two points Krista makes were particularly resonant for me:
  • It is sometimes hardest to be compassionate toward those we are closest to (definitely true!)
  • Suffering can actually make a person more compassionate, a fact that I recently wrote about in my article, The Hidden World of Invisible Suffering.
What are your thoughts on compassion?

Have you ever offered someone compassion and been rebuffed or even attacked in return? How did you cope with that?

Hope you are enjoying this lovely weekend - supposed to be almost 70 degrees here today!

Friday, February 17, 2017

New ProHealth Article: The Importance of Play


Camping with my husband is one way I play & relax
My latest article for ProHealth's Inspiration Corner was published this week: The Importance of Play. You can read the full article at that link.

My inspiration for this article was two older posts from this blog: Do You Play? and How Do You Relax? Both posts discussed my difficulties in making time for myself to just do something fun and include lots of great comments and suggestions from readers like you!

For the ProHealth article, I built on those ideas, discussing the benefits of play and adding some helpful tips for those with chronic illness. I got lots of great ideas from other people with chronic illness, both from comments here in the blog and from Facebook groups I belong to...so thank you!

Take a look at the article and let me know how YOU play. Because I definitely still need help!


Reading is another favorite way for me to have fun!

Monday, February 13, 2017

Movie Monday: The Accountant

With my college son home sick all weekend, the three of us decided to escape with a movie last night. We watched The Accountant, an exciting and unusual thriller about math! We all enjoyed it very much.

Ben Affleck stars as Christian Wolff, the accountant in the title, a quiet but brilliant man with few people skills. He has been hired by a robotics company to "uncook" their books - that is, to review all of their accounting information with a fine-toothed comb because a junior accountant named Dana, played by Anna Kendrick, found an anomaly amounting to millions of dollars. What Christian finds quickly results in several deaths.

Meanwhile, a Treasury Department investigator named Ray King, played by J.K. Simmons, is getting ready to retire and is obsessed with the mysterious Accountant who he knows is behind the money laundering of major crime families all over the world. He appears in many photos with known criminals, but you can never see his face. Ray blackmails a younger employee named Marybeth Medina, played by Cynthia Addai-Robinson, into helping him track down The Accountant. Although they don't know his name, we immediately see from the partial photos they have that they are after Christian.

Flashbacks reveal that Christian had a difficult childhood and has autism, which explains his quirks and inability to relate to those around him. However, he senses something different in Dana, right from their very first meeting, and is uncharacteristically drawn to her. She shares his aptitude, fascination, and all-around geekiness with respect to math and has also felt like an outsider much of her life. She was the first one to recognize the anomaly in the books, after all. When the violence begins, he feels protective toward Dana.

This is a very violent movie, with a lot of fighting and shooting and a huge death toll. I don't generally like that in a movie, but I still liked this one because it is very clever. The reasons behind the violence are complex and interesting. The pieces of the puzzle that are Christian's childhood and current life only gradually fall into place, at the same time that we are learning about the scam going on in the robotics company and watching the two renegade Treasury Department investigators slowly closing in on Christian, unaware of the current chaos he is embroiled in.

It's all very suspenseful, exciting, and action-packed but also very smart. The entire cast is excellent (and also includes Jeffrey Tambor and John Lithgow), but Affleck is mesmerizing in this role, holding his emotions close as we slowly see flashbacks of what made him the way he is. In fact, the child actor who plays Christian as a boy, Seth Lee, is also very good. I don't always like the action-packed thrillers that my husband and sons prefer to watch, but all of us thoroughly enjoyed this one - especially seeing all the pieces slowly come together in the end.

Have you seen The Accountant yet? Do you like thrillers and action movies?



The Accountant was recently released on DVD and is available in Redbox. It is available to rent starting at $3.99 on Amazon Prime (link below); it is only available on DVD from Netflix.

Sunday, February 12, 2017

Weekly Inspiration: Inspiring Posts on Other Blogs

Yes, I'm still here. Sorry there were no new posts here this week (in between Sundays); life has just felt like it is spinning out of control lately. Physically, I had a rough week as my erthyromelalgia flared up badly and spread from just my toes to include my heels, too. At one point, the bottoms of my feet were so sore, I could barely walk barefoot across the room (and I haven't been able to wear socks since September!). Meanwhile, there was just a lot to juggle this week - I negotiated an awesome refinance on our mortgage (which is exciting but took a lot of energy), we had a false alarm scare for 24 hours where we thought our car had been stolen (bit of stress), and both of our college sons came down with a stomach virus. One came home for some TLC and the other stayed at school. I have been wiping everything down with disinfectant nonstop!

Anyway, enough about me. This is Weekly Inspiration, not weekly complaining!

Today, I thought I'd go back to the origin of blogs - did you know the word blog is a shortened version of weblog and that blogs were originally intended for just that, a log of cool stuff on the web? Yup, blog originally meant a list or log of links to other websites.

My own blog is sorely out of date, including the list of other blogs - I intend to work on that as soon as things slow down here (ha ha) - so I thought I'd introduce you to some inspiring posts on other blogs - maybe we can both discover some wonderful new blogs together.

Here are some recent inspirational posts for your enjoyment:

To Get Better This Year Means Getting Better Today on the blog A Chronic Voice.
This brief post shares a very important message, all about taking one day at a time and focusing on today rather than long-term expectations that feel unattainable. Great message and very well said, including some inspiring quotes.

10 Simple Ways to Love Yourself for Valentine's Day on the blog Lilac and Lyme.
A wonderful list of self-indulgences for taking care of yourself. This is definitely something I need to focus on more in my busy life! I wholeheartedly agree with her on reading books and watching old I Love Lucy episodes. In fact, in the early days of our illnesses when my son and I were both severely ill and often homebound together, he and I watched I Love Lucy every day. We can still get laughing together over a funny episode (like when Ricky thought he was losing his hair and Lucy tried her special "treatment" on him!), and my son still often reminds me that laughter is the best medicine!

[NOTE: just a quick warning - her first suggestion is a bath. Anyone with Orthostatic Intolerance (that's 97% of those with ME/CFS, 75% of those with fibro, and many with Lyme) should avoid hot water and keep the temp at or below body temperature. Hot water dilates blood vessels, making OI much worse and making you feel sicker.]

Reduce Stress with an Adult Coloring Book on the blog Xo, Faith.
Blogger Faith delves into the recent adult coloring book craze and the new reports of its ability to reduce stress. I have been known to get my kids' old coloring books and crayons out! I haven't tried any of the newer coloring books, created for adults, yet, but I really want to. I could seriously use a little zoning out time for myself.

Four Tips for Maintaining Resilience When Battling a Chronic Illness on the blog Living Mighty Well.
This post features a short profile of a teen with Mast Cell Disease and POTS, with 4 ways that she makes the best of her life with chronic illness. Inspiring and very relatable for most of us.

The Soundtrack of a Chronic Life on the blog My Brain Lesion and Me.
She provides an overview of the role that music plays in our lives and how it can inspire us or express what we are feeling. She also includes a few excerpts of lyrics from some of the eclectic group of songs that she can relate to. I heartily agree on her choice of The Climb by Miley Cyrus - I always find that song inspiring, and it is on my own Cheer Up/Happy playlist!

Hope you find some of your own inspiration among these wonderful blogs and this wide variety of topics. I think I'm going to pull out the coloring books this week...and maybe watch some old Lucy episodes with my son today!

Enjoy the weekend.

Sunday, February 05, 2017

Weekly Inspiration: Favorite Quotes from Cloud Atlas

Happy Sunday! Sorry the blog has been so quiet this week, but things have been hectic (and exhausting) here. Every day has been a blur of activity so that I am wiped out every evening - you know how that goes. My two sons, 19 and 22, move back to college today (that's one reason for much of the busy-ness this week), so I have one more hectic day today, helping them get out the door, cooking, refilling meds, etc. and then...total silence and solitude tomorrow morning! Whew - I'm going to need it to recuperate and recover.

So, that is part of why I am running behind on blogging (as usual!), but last week, I finally managed to write a summary post on my book blog of what I read n 2016 and which books were my favorites last year. If you enjoy reading, please check out my list; my book blog also includes a complete list of all the books I have read n the past two years, with links to reviews. If you have trouble concentrating and regular books are tough for you to manage, consider audio books (I love audios!) and/or teen/young adult or middle-grade books. They are usually shorter and easier to read, but there are still many excellent ones that are of high quality for adults to enjoy, in all sorts of genres. My summary and books list include those, too.

My favorite novel of the year was Cloud Atlas by David Mitchell (my review at the link - no spoilers!). It was my first Mitchell novel, and I loved the way the separate stories all overlapped and gradually came together in unexpected ways. Also, the writing in Cloud Atlas was amazing - I filled my Quote Journal with all kinds of quotes from the different stories in the book - some deep and thoughtful, some clever, and some just funny!

Here are some of my favorites:

Clever, Funny, or just plain Beautifully Written:
"Faith, the least exclusive club on Earth, has the craftiest doorman. Every time I've stepped through its wide-open doorway, I find myself stepping out on the street again."
- From Letters from Zedelghem
A very true comment on the slipperiness of faith, using a clever metaphor.

"I refought old arguments, then fought arguments that have never even existed."
- from The Ghastly Ordeal of Timothy Cavendish
Wow, could I relate to this one! I tend to get obsessive thoughts exactly like this - fighting imaginary arguments in my head - especially when I get badly crashed. I completely understand what he's talking about and hate when it happens to me.

"Sometimes the fluffy bunny of incredulity zooms around the bend so rapidly that the greyhound of language is left, agog, in the starting gate."
- from The Ghastly Ordeal of Timothy Cavendish
Another brilliant metaphor! I've never actually seen a greyhound race, but he paints a vivid picture and certainly gets the point across. This is an amazing sentence.

Thoughtful, Thought-provoking, and Especially Relevant Given World Events Lately
"Rights are susceptible to subversion, as even granite is susceptible to erosion. My fifth Declaration posits how, in a cycle as old as tribalism, ignorance of the Other engenders fear; fear engenders hatred; hatred engenders violence; violence engenders further violence until the only "rights," the only law, are whatever is willed by the most powerful."
- An Orison of Sonmi-451
This one is taken from a dystopian story of the future - scary how relevant it seems to our own world today, isn't it?

"In an individual, selfishness uglifies the soul; for the human species, selfishness is extinction."
- from The Pacific Journal of Adam Ewing
Another shiver-inducing and thought-provoking prophetic quote (this one from the past).

"If we believe that humanity may transcend tooth and claw, if we believe diverse races and creeds can share this world as peaceably as the orphans share their candlenut tree, if we believe leaders must be just, violence must be muzzled, power accountable and the riches of the Earth and its oceans shared equitably, such a world will come to pass. I am not deceived. It is the hardest of worlds to make real. Torturous advances won over generations can be lost by a single stroke of a myopic president's pen or a vainglorious general's sword."
- from The Pacific Journal of Adam Ewing
Though that last sentence is chilling in its prescience, this quote at least provides some hope. We just need enough people to believe in such a world.

On Books as Escape
"Mother used to say escape is never further than the nearest book. Well, Mumsy, no, not really. Your beloved large-print sagas of rags, riches, and heartbreak were no camouflage against the miseries trained on you by the tennis ball launcher of life, were they? But, yes, Mum, there again, you have a point. Books don't offer real escape, but they can stop a mind scratching itself raw."
- from The Ghastly Ordeal of Timothy Cavendish
I love his writing! The metaphors are killer! Don't you just love that - "the tennis ball launcher of life"? ha ha Perfectly apt description of life with an ever-changing chronic illness, don't you think? And I love that last line, too, about how books can "stop a mind scratching itself raw." Perfectly put. That's why I turn to reading on my worst days (and my best days, too - I love to read).


So, those are just a few of my favorite brief excerpts from this amazing book. There are more in my Quote Journal and many more in the novel itself.

Can you relate to these quotes, too?

Do you depend on books for escape?

What was your favorite book read last year?

Monday, January 30, 2017

Movie Monday: Rogue One: A Star Wars Story

Two weeks ago, my husband and I went out to the theater to see Rogue One: A Star Wars Story. We don't often get out to the theater, but this is one we definitely wanted to see on the big screen. It didn't disappoint. Rogue One is an excellent addition to the Star Wars canon, and we both enjoyed it very much.

First, let me explain something that took me a while into the movie to figure out: when Rogue One takes place in the Star Wars timeline. The events in this movie take place immediately before the original Star Wars movie, A New Hope (that would be the fourth episode, but the first one to come out, in 1977). So, it is kind of like Episode 3 1/2. Once you see it, you understand that the events in the original Star Wars movie occurred just after this.

OK, now that that is out of the way, here is a brief overview of the plot set-up. A scientist named Galen Erso is kidnapped in the first scene by Empire stormtroopers and forced to work with them to complete building the Death Star. Galen's little girl, Jyn, successfully escapes and hides from the stormtroopers and is then rescued by Saw Gerrera (played by Forest Whitaker), a friend of her father's. Saw brings Jyn up and when she is a young woman (played by Felicity Jones), she meets up with Cassian (played by Diego Luna). Eventually, she decides to join the Resistance with him. They are accompanied by an old Empire robot named K-2S0 and an old, blind man named Baze (played by Wen Jiang) who knows how to use the Force.

After joining the Rebel Alliance, they go off on their own on a rogue mission to steal the plans for the Death Star from a heavily armed Empire data facility and name their ship (you guessed it) Rogue One. As I'm sure you know if you've ever seen any Star Wars movie, this is a great simplification of a very complex plot. Suspense builds, with good versus evil, their rogue mission, and a great battle scene at the end.

My husband and I both enjoyed Rogue One and found it to fit nicely into the Star Wars canon, with all of the elements you would expect: interesting characters, nasty bad guys, a noble but seemingly doomed mission, and massive battle scenes. I was a bit hesitant to see this one because I had heard some reviewers criticize it for a lack of humor, pervading darkness, and too-lengthy battle scenes (something I don't have much patience for). I didn't find any of this to be true, though! We both thought the tone of the movie was well-balanced and that it had a nice sense of humor (much of the humor comes from the robot, K-2S0). As for the battle scene at the end, it was just right - exciting and suspenseful, not at all boring, and just the right length. Bottom line: we both enjoyed it very much and liked seeing what led to the events in the original Star Wars movie.

You can still find Rogue One in a few theaters, but it is on its way out, so hurry! It is due out on DVD in April 2017 and should be available via streaming sometime before that (TBA) - you can use the Amazon link below to pre-order.

Have you seen Rogue One yet? Which is your favorite Star Wars movie?



Sunday, January 29, 2017

Weekly Inspiration: The Hidden World of Invisible Suffering

One positive thing that has come out of my 15 years of living with ME/CFS is that I have become more empathetic and compassionate toward others. Experiencing an invisible illness myself has made me realize that everyone you meet has some sort of - often invisible - challenges they are dealing with, too. It makes you a kinder person to realize this and can also help to deepen your connections with other people.

I wrote this article for ProHealth which was published on their site in December. Here's a link to the article on the ProHealth website, and I have included the full text here in today's Weekly Inspiration post, too. It further explains what I have learned about The Hidden World of Invisible Suffering and also offers tips on becoming more compassionate and connecting with others whose challenges might be different than yours. In this article, I share some stories from my own life.

What are your stories about meeting others or realizing someone else has his or her own challenges? Please share your experiences in the comments below. It is so important that we learn to be kind to each other in this chaotic, stressful world we are living in!


The Hidden World of Invisible Suffering

When I first became sick with ME/CFS almost 15 years ago, it was like a curtain was pulled back on a hidden world I never before knew existed. One of the most important things my years of chronic illness have taught me is that everyone has their own challenges, and they are often invisible to those around them.  Over the years, I have been surprised again and again to discover that people around me – both new acquaintances and old friends – have their own challenges to deal with behind the scenes. Recognizing this hidden world of invisible suffering has enriched my life, making me a more empathetic and compassionate person, and improving my personal relationships.

I recently learned that an old sorority friend has had lupus since we were in college together; I never knew she was hiding a complex, serious chronic illness. Another old college friend reached out to me when I published an article titled What To Do When a Loved One Becomes Chronically Ill. She explained that her mother had terminal cancer and thanked me for writing the article, saying that it really hit home for her and expressed her own feelings about what her family needed. I lost my own father to cancer last year, so I was especially moved to find out what she was going through.

Many years ago, I was sitting on the sidelines of a soccer field, watching my younger son play for his middle-school team, with my older son (who also has ME/CFS plus three tick infections) sitting next to me. I was feeling isolated – and a bit sorry for myself – because most of the other parents were standing in a group, talking and laughing, as they always did. I struck up a conversation with another mom sitting, like me, in a low chair nearby.

As we talked, we discovered that we both had chronic illnesses, and her daughter was sick, as well. She had fibromyalgia and her daughter had been diagnosed with both fibro and lupus, but she was concerned she had Lyme. We discussed the challenges of Lyme disease in our area, treatments that had helped each of us, the latest research, and more. Just like that, a bond was formed, and we talked for the rest for the rest of the game like old friends. It was like saying a code word and finding out we were both in the same secret club!

Things like this have happened to me over and over again since I first began living with chronic illness. With invisible illnesses, we often feel as if we are all alone and no one understands us, but there is a whole hidden world out there of people just like us. You never know – the person sitting next to you at a school function or driving in front of you or sitting in your doctor’s waiting room might have a similar illness.

It’s not just that there are others with chronic illnesses, though. There are plenty of people who are perfectly healthy but are dealing with their own serious challenges behind the scenes – perhaps their child has severe learning disabilities or a loved one is battling cancer or their marriage is falling apart. Once you recognize that everyone has his or her own challenges, this hidden world of suffering is revealed. This understanding has helped me to become less self-absorbed about my own problems and to develop more compassion for other people.

Here’s how you can tune in to this hidden world of invisible suffering and enrich your life and relationships:

Be Open & Honest about Your Challenges – This comes naturally to me but is very difficult for some people. If you are used to hiding your illness or pretending everything is fine, first practice being more open and honest with your closest friends and family…without self-pity. Your attitude will usually set the tone for your loved ones to follow, so let them know when you have to sit down (or lie down) or why you can’t do something they are proposing. A matter-of-fact approach usually works best: “ I would love to take a walk, but unfortunately, my illness limits my stamina – walking today would make me sicker tomorrow.” When an acquaintance asks why you’re not standing up with the crowd, explain simply, “I have a chronic illness and can’t stand for long.” Often, your openness will open the door for others to share their challenges, as well.

Recognize & Respect That Everyone Has Their Own Challenges  - Your honesty will often encourage others to be honest. Be open to discovering other people’s challenges. When people do tell you about what’s going on in their lives, be an active and engaged listener. Set aside any resentments or self-pity and truly listen.

It’s Not a Contest – Don’t compare challenges! This is probably the most important point (and one I need to keep working on constantly). When you suffer from serious illnesses that severely limit your life, it is easy to feel resentment or bitterness when someone else tells you about his or her challenge, which might seem like nothing to you compared with yours.  Reject that inclination and dig deep for empathy. Listen attentively and offer compassion when someone else shares a challenge with you – it will enrich your relationships and help you feel less isolated.

Offer Empathy and Compassion - When you find out that someone else is suffering, let him or her know that you understand and that you care. They need the same kinds of reassurances and compassion that we do. Simple phrases like “I’m so sorry you are going through this” or “I’m thinking of you” can mean a lot. Just consider what you wish people would say to you.

Recognizing that everyone around you is dealing with their own hidden suffering, just like you are, can open up your world to greater compassion and closer relationships. It can take some practice – especially learning not to compare others’ challenges with your own – but the rewards are great. Listening respectfully to someone else’s challenges that are different than yours can enrich your relationships. In giving more empathy and compassion to other people, you will get more back in return.