Friday, May 27, 2016

Physical Therapy For Patients with ME/CFS

Copyright: 123RF Stock Photo
First, to clear up any confusion right away, these are NOT guidelines for using physical therapy as a treatment for ME/CFS. For more information on that topic, see my earlier post New ME/CFS Treatment: Manual Physical Therapy which includes details of a specialized form of manual therapy that uses nerve gliding for ME/CFS patients, to reduce pain and improve stamina.

Instead, this post is about guidelines for when someone who has ME/CFS needs physical therapy for another reason - an injury, post-surgery, specific chronic pain, etc. I recently developed some tendinitis in my right shoulder and, when resting it for several months didn't work, my doctor and I decided I needed physical therapy. I was very worried about getting a physical therapist who wouldn't understand about Orthostatic Intolerance (OI) or exercise intolerance, that I might end up working with someone who would push me too hard, resulting in post-exertional crashes.

To prevent that, I wrote up a simple 2-page set of guidelines for physical therapy when the patient has ME/CFS. The owner of our local PT clinic was thrilled with my summary, and each of the several physical therapists I worked with was very grateful and interested in learning about ME/CFS. I was thrilled by their open, welcoming responsiveness! I was just discharged from PT yesterday, and the whole experience was overwhelmingly positive. The owner of the PT office told me he would add my guidelines to their permanent files, where they keep information on various medical conditions that patients might have.

Here is a link to the pdf file of my document: Guidelines for PT for Patients with ME/CFS (I just learned how to link to a pdf file, so please let me know if there is any problem with this link!). Since it is a pdf file, you should be able to print right from this document and have a nicely formatted 2-page document to share with your physical therapist and/or doctor.


Wednesday, May 25, 2016

#MillionsMissing Awareness Campaign for ME/CFS - TODAY!

Sorry for the late notice (I just can't seem to catch up lately), but today is a worldwide ME/CFS awareness campaign called Millions Missing.

In locations all over the world, people sent their old shoes to Washington, DC, London, and many other global cities to create a vivid picture of how many people are missing from their own lives due to ME/CFS. One of those many protests is shown in the photo above.

There is still time to join in from home. Check out the ME Action website for more information on actions you can take for this global day of protest.

I just used their site to add a Twibbon (an overlay with #MillionsMissing) to my profile pictures on both Twitter and Facebook, and I explained on my Facebook page what it means. Here's what I wrote to my friends and family:

"Today is the #MillionsMissing awareness campaign for ME/CFS, to recognize the millions of people in the US and all over the world who are missing from their lives and/or missing out on favorite activities because of ME/CFS. I am lucky to have found some treatments that help me avoid being completely housebound or bedridden, but I do still miss a lot of my old life, including backpacking, hiking (longer than 1 mile!), running, vigorous exercise, working, and being able to get through a full day without a nap!"

Since my friends and family often see me out in the world, I added an explanation of the things I am missing out on and used a photo showing something I love that I can no longer do (backpacking). For others who aren't even able to leave their homes or beds, the photos of empty shoes are powerful symbols.
 
There are 5 other ways to join in and lend your voice (or a picture of your shoes) - see the link above at ME Action.

You can also read more news and posts on Twitter at #MillionsMissing.

Tuesday, May 24, 2016

TV Tuesday: The Night Manager

This winter, many of my friends in the UK were raving about a new TV series there called The Night Manager and starring Hugh Laurie (of House fame). Alas, repeated checks of Amazon, Netflix, and our cable On Demand showed that it wasn't available here in the US...but now it is! Being broadcast on AMC as a "miniseries event" (I guess that is how they are dealing with the shorter seasons typical in the UK), the first season, with 6 episodes, can now be seen by US viewers, too. We have seen 3 episodes so far and are enjoying this tense spy thriller.

The show is based on the novel of the same name by John le Carré. Jonathan Pine, played by Tom Hiddleston who has been rumored as a possibility for the next James Bond, works at a luxury hotel in Egypt as the night manager. He's happy with this quiet job after years in the military. A gorgeous hotel guest named Sophie attracts his attention. She is the mistress of Freddie Hamid, a notorious criminal who owns much of Cairo. Sophie gives Jonathan an envelope of confidential documents to copy, and when he does so, he sees that they include lists of illegal weapons and chemical warfare agents being sold to Hamid by a company called Ironlast, whose CEO Richard Roper, played by Hugh Laurie, is also a visitor to the hotel. Jonathan turns the documents over to authorities in England (where he is from), but his actions have devastating effects.

Jonathan flees Egypt and becomes night manager at a remote hotel in the Swiss Alps, where - 5 years later - Roper shows up again as a hotel guest with his entourage. A British intelligence agent named Angela Burr, played by Olivia Colman, contacts Jonathan to ask him to go undercover and become a part of Roper's organization. Still feeling guilt over what happened in Cairo and knowing from his military experience what harm this kind of weapons dealing can do, he agrees. From then, there is a complex process to help him get into Roper's inner circle.

It might sound a little bit complicated, but all spy thrillers start out that way, don't they? Once Angela recruits Jonathan, the plot is fairly straightforward. We are on episode three so far (the episodes are longer than usual for US shows, as is typical for the UK). The acting so far has been superb. We'd heard that from others with respect to Hugh Laurie (who here is a charming bad guy, whereas on House he was a good guy with no charm), but Tom Hiddleston is equally as good as the newbie undercover spy. The settings are incredible - gorgeous places all over the world. We are hooked so far and enjoying the suspense and tension.

We have been watching The Night Manager On Demand through our cable provider, as the episodes air on AMC (Tuesdays at 10 pm Eastern Time). They are also available for $1.99 on Amazon.

Have you seen The Night Manager yet? What do you think of it? What other thrillers do you enjoy on TV?




Sunday, May 22, 2016

Weekly Inspiration: Enjoying the Journey

I recently read The Love Song of Miss Queenie Hennessy by Rachel Joyce, an uplifting, funny,
warm story about a woman in hospice at the end of her life, waiting for her friend, Harold, to arrive (and, of course, also waiting to die). This is the companion novel to another excellent book, The Unlikely Pilgrimage of Harold Fry, which I also highly recommend (reviews of both books at the links - no spoilers!).

In the novel, Queenie writes while she waits, and her observations are often so insightful and beautiful that I filled several pages in my Quote Journal with them. Given Queenie's situation in hospice, her insights are almost always relevant to those of us living with chronic illness. I could easily write a post too long for you to read, but I will try to choose just a few of my favorites that feel extra-significant for us.
"You don't get to a place by constantly moving, even if your journey is only one of sitting still and waiting. Every once in a while, you have to stop in your tracks and admire the view, a small cloud and a tree outside your window. You have to see what you did not see before. And then you have to sleep."

I loved this one, and it's a point of view I often write about here on the blog. Just because we are sick - even if we are homebound or bedridden - doesn't mean we have to miss out on what is all around us. Look out your window and watch the changing seasons, the clouds moving across the sky, and listen to the birds. Read wonderful books, watch riveting TV shows, enjoy uplifting movies that make you laugh or cry tears of joy. Look online at photos of beautiful artwork, listen to music that lifts your spirits, read poetry that moves you. There is plenty of joy to be had in life, even if you are currently stuck in one place, feeling in limbo.
"The sky and the sun are always there. It's the clouds that come and go. Stop holding onto yourself, and look at the world around you. ...You're upset. You're frightened. So what can you do? You can't run anymore. Those days are over. You can't make the problem beautiful by dancing. You can't even prune it. Those days are over, too. So, the only thing left for you to do now is to stop trying to fix the problem.

...Don't try to see ahead to the nice bits. Don't try to see ahead to the end. Stay with the present, even if it's not so good. And consider how far you've already come."

This passage also touched me. I think it is easy with these illnesses to fall into the trap of just waiting - for things to get better, for things to change. I know I did in the early years. But your life is still here, right in front of you, even if it is now a much more limited life. It is easy to regret the past or look forward to the future but more challenging (though also far more rewarding) to just live in the present.
"All journeys have secret destinations of which the traveler is unaware."
          - Martin Buber, The Legend of Baal-Shem

This quote was at the start of the novel, and it immediately struck a chord with me. So many positive things have resulted from this unexpected journey of chronic illness (14 years and counting) - things that I never could have foreseen. With three of the four of us sick at home together for many years, our family became very close. We spent a lot of time together and relied on each other for enjoyment, as well as support and care. Now that our sons are both young adults, those bonds that formed during our worst years are still strong.

Just this week, we got together with four other families in our local area - the original members of the local support group I started six years ago. Yes, we still talked about medical issues and traded doctor recommendations and treatment advice over dinner, but these people have become some of our closest friends now. We share an unusual bond - something that no one else can really understand. When we get together, even if we're just talking about trivial things, we always know that the others "get it" without us having to explain. You can refer to needing to lie down in a public place or having to stay home from school or any other things that are a normal part of our lives and see smiling faces and nodding heads instead of looks of pity. We can even laugh together over the horror stories - the clueless doctors or passing out suddenly. They're our people. And they are wonderful, caring, fun people that we never would have met without this illness.

The same goes for all of the people we've met online (yes, I'm talking to YOU!). Helping others has always been important to me (I even chose a career where I felt like I was improving the world), and our experiences with this illness have allowed us to reach out and help hundreds of other people, all over the world. I never would have dreamed of any of this before I got sick, but now it feels like being able to help others makes our own suffering more worthwhile.

So, yes, this journey has brought with it many destinations that I never expected. Of course, if I had a choice, I would prefer that my sons and I had never gotten sick, but this journey has taken us to some pretty amazing places that have enriched our lives in unexpected ways.

Have you read either of these novels? How do you remind yourself to live in the present and enjoy this moment? What unexpected destinations has this chronic illness journey brought you so far?

Please share your experiences in the Comments section - and stop today to remind yourself to live in the moment and notice what is around you!

Tuesday, May 17, 2016

TV Tuesday: The Girlfriend's Guide to Divorce

I just started watching Bravo's The Girlfriend's Guide to Divorce on Sunday (two days ago) when my husband was out of town, and I have already watched 5 episodes!  I am hooked on this smart, funny, sexy drama about three moms experiencing divorce.

Abby McCarthy, played by the talented Lisa Edelstein, is the author of a highly successful series of books called "The Girlfriend's Guide to..." and covering all aspects of being a wife and mother. She and her husband have two kids, adorable little Charlie and snarky teen Lilly. Abby is just about to go on a book tour to promote her latest book (which is all about loving your husband). There's just one problem: she and her husband, Jake, played by Paul Adelstein (Dr. Cooper from Private Practice), are secretly separated, and now it looks like they are headed for divorce.

As Abby's life falls apart, she relies more and more on two divorced moms from her kids' school: the gorgeous, promiscuous, New Age-y Phoebe, played by Beau Garrett, and intense workaholic Lyla, played by Janeane Garofalo (one of my favorite actresses). The three of them try to support each other through all of the challenges of their changing lives. In addition, there's Abby's gay brother, Max, who is caught in the middle because he was friends with Jake before he and Abby married.

It's a very smart, funny, sexy show with a female-centric cast and storyline, all of which is a breath of fresh air. It strikes a perfect balance between drama (the effects of divorce on kids, the legal and financial problems, the mixed feelings) and comedy (trying to date again, dealing with your spouse's much younger lover, the great guy who's a terrible kisser). The cast is all top-notch, with guest stars adding to the star-power. In episode 5, Bernadette Peters guest stars as Lyla's mother - and is wonderful in the role, as you would guess.

If you have some quiet girl time all to yourself, give it a try! I can't wait to see more.

There have been two seasons of The Girlfriend's Guide to Divorce on Bravo so far. Both of them are available for streaming on Netflix. Episodes are $1.99 each or $19.99 for a season, both on Amazon, and cable On Demand (season 1 only).

Have you seen this show yet? What other female-centric shows do you like?



Monday, May 16, 2016

Movie Monday: Stuck in Love

With a very rare evening all alone at home last night, I decided to watch a movie. My selection criteria was a bit odd: free on Netflix or Amazon, about 90 minutes (ish), and something my husband probably wouldn't be thrilled to watch. I quickly paged through dozens of movies under one of the "You might like..." categories on Netflix, checking the time stamps and ratings, and chose Stuck in Love because it was only 96 minutes and had 4 stars. My random selection method worked pretty well, and I enjoyed this warm, funny, thoughtful movie about family and love that follows the romantic experiences of an entire family for a year.

William Borgen, played wonderfully by Greg Kinnear, is a famed novelist and father of two teenagers. William won a prestigious award for his last novel, but hasn't been able to write anything at all since his wife, Tricia (played by Jennifer Connelly), left him for another man two years ago. Instead, he spends his free time tip-toeing around in the bushes outside her house, spying on her and her new husband and looking for signs of trouble in their marriage. When he sets a place for her at their Thanksgiving table at the start of the movie, even his kids tell him he needs to let go and move on.

His son, Rusty, played by Nat Wolff, is also hopelessly in love. He pines after a girl in his high school English class, Kate, who barely knows he is alive and has a jock boyfriend. Rusty also has writing aspirations and loves Stephen King novels. His older sister, Samantha, played by Lily Collins, is home from college for the holiday with big news: at just 19, her first novel is being published, following in her dad's famous footsteps. When it comes to love, though, Samantha takes the opposite approach, having a series of meaningless one-night stands and avoiding love at any cost because she doesn't want to get hurt or end up like her parents. In fact, Samantha hasn't spoken to her mother in over a year and blames her for the break-up and her father's rut.

The movie follows the love lives of the family - and especially William and his two children - for a year. William has quick trysts with a married neighbor, played by Kristen Bell, and tries her advice to start dating again. Rusty takes his dad's advice to get more "life experiences" and takes a chance on telling Kate how he feels. Samantha meets Lou, a really nice guy who wants to be her friend (and more), but she keeps brushing him off and keeping him at arm's length. Meanwhile, William never gives up on his dream that Tricia might still come back to him.

I really enjoyed this romantic comedy that doesn't follow the typical romcom plot line, with its three different but intersecting romantic stories, alongside the love between the family members. It was warm and thoughtful, with plenty of humorous moments. The entire cast was great, especially Greg Kinnear who is one of my favorite actors. The movie also has a wonderful Indie soundtrack - I listened to it on Spotify again this morning! As a bonus, with a whole family of avid readers and writers, there is a thread of books throughout the story - the books they read, the books they share with others, and the books they write. A romantic comedy about a family with a bookish focus? Perfect for me!

Stuck in Love is currently available free on Netflix and for $2.99 on Amazon.




Thursday, May 12, 2016

2016 International ME/CFS Awareness Day!

Today is International ME/CFS Awareness Day...and we can use all the awareness we can get!

I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May 12th is the exception each year. Here is what I am posting on my Facebook wall today for my friends and family:

"Today is International ME/CFS Awareness Day. Most of you know that Jamie and I both have ME/CFS, but you may not know what that means, especially since the U.S. name, Chronic Fatigue Syndrome, is very misleading. ME/CFS is actually a serious & debilitating immune disorder that has dramatically changed our lives the past 14 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives..but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need to get a LOT of extra sleep, I can't get through the day without a nap after lunch, almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. We have found some treatments that each help a little, but nothing helps a lot. We each take 60-70 pills a day, at 6 different times of day. And even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks at a time. A simple infection like bronchitis can knock us out for months. But, we are the lucky ones. Many people with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - even understand what ME/CFS is, so this Awareness Day is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or Lyme which Jamie also has & has similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far!"

Feel free to copy that, edit it to fit your own situation, and share it with your own friends and family.

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on CFS
  4. Our public testimony on pediatric CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

Wednesday, May 11, 2016

New on ProHealth: What Are You Looking Forward To?

From ProHealth website
My latest article has been published on the ProHealth website, in their Inspiration Corner: What Are You Looking Forward To? You can read the full article at that link.

The title - and the subject - come from a wonderful psychologist I used to see who specialized in chronic illness (her own grown son had ME/CFS). She often asked me what I was looking forward to, and I still use this question now, on my own, to re-center myself and remind myself to look at the bigger picture and focus on the positives in my life. This is actually a good reminder this week in particular because I have been feeling a little down and very overwhelmed.

So, let's see...right now, I am looking forward to...dinner with all four of us home tonight (a rarity now with one son in college); watching an episode of Orphan Black when our college son comes home tonight (our favorite show); reading more of the wonderful novel I am engrossed in, A Tale for the Time Being by Ruth Ozeki; Memorial Day weekend (end of May) when we have absolutely nothing planned; and the week after my son's high school graduation in June, when my husband and I plan to spend a few quiet days camping in Shenandoah National Park.

What are YOU looking forward to?

Tuesday, May 10, 2016

TV Tuesday: Catastrophe

The Amazon Prime original comedy series Catastrophe recently released its second season...and my husband and I devoured its six new episodes in about a week! This is a unique story and one of the funniest comedies we've ever seen.

Rob, played by Rob Delaney, is an American businessman working in the pharmaceutical industry who travels to London for a business trip. Sharon, played by Sharon Horgan, is an elementary teacher living in London and originally from Ireland. The two of them meet during Rob's visit to London and hook up - your classic girl meets boy story. Except that they spend every night together for a week, having wild sex and then Sharon calls Rob a couple of months later in America to tell him she's pregnant.

So, Rob moves to London and the two embark on a real relationship. Of course, they are doing things out of order, dealing with all of the intimacies of having a baby together when they barely know each other. Sharon has Irish parents and a married brother in London, plus some strange-ish friends, and Rob's only friend in London is an obnoxious American party animal named Dave.

In Season 1, they deal with the pregnancy and their impending parenthood, while trying to get to know each other better. In Season 2, the story jumps ahead a few years to see them married and with two young children. Each season is only 6 half-hour episodes, and they go by much too quickly! This show is absolutely hilarious, one of the funniest we have ever seen. In fact, my husband doesn't usually like TV comedies, but this isn't your usual sitcom. For starters, it is seriously R-rated - definitely not one to watch with the kids! The writing is spectacular (the two lead actors also write the show), and the two actors are perfect in their roles, with great chemistry on screen together. The supporting actors are all excellent as well, including Carrie Fisher as Rob's mother. Here's a wonderful interview with the actors/writers.

This has become one of our favorite shows, one that keeps us laughing out loud. Now we have to wait for Season 3 to watch more! I hope Amazon won't make us wait too long.

Since this is an Amazon original program, it is only available on Amazon Prime, for Prime members (though anyone can watch episode 1 for free). I just watched that interview at the link above, which states that you can also watch Catastrophe on Channel 4 in the UK (though it is called an Amazon Original Series, so I'm not sure how that works).



    

Tuesday, May 03, 2016

TV Tuesday: When Good Shows Get Cancelled

My plan for today was to write a full review of You, Me, and the Apocalypse, a funny, suspenseful dramedy that aired on NBC this past fall. I'd been meaning to get to it for a while, and planned to work my way through the 10 episodes of the first season the past few weeks so I could write about it here. I thought it started out just OK, but it grew on me with each episode, as I got to know the characters and became accustomed to its format. It's about a huge comet heading straight for earth, big enough to cause the next big extinction event (ahem, us). As the show starts, the comet is about 30 days away from its impact with earth, and we meet various people around the world coping with the news. Jenna Fischer (Pam from The Office) stars as a kind mom who is in federal prison because she took the fall for her son who hacked the NSA. Rob Lowe plays Father Jude, not-your-usual-priest who has been assigned by the Vatican to find the next messiah (since this seems to be the end of times). And there are lots of supporting actors in all kinds of roles. We know from the opening scenes of the first episode that many of these people from all over the world somehow end up in a bunker together under the London suburb of Slough on the day the comet actually hits...but we don't know how they all end up there together.

So far, so good. Like I said, the show was really growing on me, and I've been enjoying it and looking forward to each episode, as the comet gets closer to earth and time is running out. I've come to care about the main characters, and with just a few episodes left to go in the first season, wanted to know what would happen to them.

Then...BAM! I checked online yesterday and found that the show has been cancelled! This first season is also its last. I invested that time, grew to like it, and then they pulled the rug out from under me. This isn't the first time I've seen a good show get cancelled, and I bet this has happened to you with favorite shows, too.

So, instead of writing a full review of You, Me, and the Apocalypse (though all of its first season is still available On Demand and on Amazon for $1.99 an episode), I decided to instead write about how and why good TV shows get cancelled.

The Washington Post had an interesting article in the fall about how the networks make these seemingly random decisions. For instance, FX puts equal weight on the producers' opinion, the critics, and the public. The article also explains how these decisions are changing with the new ways that people are watching TV, so that networks have to consider not just who is tuning in when the show airs, but how many people are watching it later. Good thing - we don't watch anything when it actually airs anymore!

Here is an actor's perspective about why shows get cancelled, focused on one of the most puzzling cancellations of modern times, Heroes. That show had a huge fan base, but still got the ax. Interestingly, this past fall - 5 years later - it was revived with Heroes Reborn.

And this recent list from TV Cheat Sheet gives a depressing run-down of current shows that might possibly be on the chopping block.

My family has seen many of our favorite shows cancelled after just a single season. Fox in particular seems to chop some amazing shows without giving them much of a chance, but I guess that's show biz! Here are some of our past faves that got the ax:
  • Firefly -  Perhaps the classic example of a fantastic show with a huge fan base that was cancelled too early, this 2002 sci fi show featured Nathan Fillion (of Castle fame) as the captain of a ragtag group of space outlaws. We were late to this one and didn't see it when it first aired but have watched its 14-episode first (and last) season on DVD. At least they made a movie, too! (TV show available free on Amazon Prime).
  • John Doe - Also in 2002, my husband and I really enjoyed John Doe, about a man with no memory who helped police solve crimes while looking for clues to his own identity. They set up a great story in a first season with 22 episodes but then left us hanging.
  • Life on Mars - this unique time-travel show, with Jason O'Mara as a modern NYPD detective who finds himself back in the 1970's, was based on a UK show of the same name and was an outstanding show. It got chopped after just one amazing season (18 episodes), but to their credit, the show's creators hurried up and rewrote the season finale to wrap up the whole show.
  • Terra Nova - Our whole family LOVED this show, about a family on a dying future earth who is sent back 85 million years to prehistoric times, where humans are trying to establish a colony to give themselves a second chance. This one also starred Jason O'Mara (tough luck, Jason). Time travel, adventure, and dinosaurs - what more could you want? Our sons were devastated when it was cancelled after just one excellent season (13 episodes) (available on Netflix).
  • Alkatraz - My son and I loved this show! A unique premise, combining crime show with the paranormal. Prisoners and guards who mysteriously disappeared from Alkatraz in 1963 suddenly begin to reappear in present day, and a secret government group must work quickly to recapture them. This show was SO cool, and we loved seeing our old buddy Jorge Garcia (Hurley from Lost). This captivating show lasted just one season (13 episodes).
  • Awake - In the same season as Alkatraz, my son and I also enjoyed watching Awake, another show with a touch of the supernatural (seeing a pattern here?). Jason Isaacs stars as a father whose life is split into two different realities after a car accident. In one, his wife was killed, and in the other, his son was killed. The primary driver here is wondering whether this is really happening to him or whether he is dreaming (or crazy). We couldn't wait to see more, but it was cancelled after one 13-episode season (my son tells me it is on Netflix!)
  • Believe - My son and I also loved this show (we used to watch a lot of TV together when we were both home sick a lot) about a little girl with special powers who was being hunted by people that wanted to take advantage of her, with Jake McLaughlin (now on Quantico) as a convict tasked with protecting her. Fast-paced suspense plus a supernatural element - we were hooked, but it only lasted one season (13 episodes).
I could go on and on here! So many excellent shows never make it past their first season. We had some favorites that only made it two seasons, too, like Touch and Revolution.

How about you? What were some of our favorites that got cancelled? What would you like to see come back?

(NOTE: All of the above titles are available on DVD (our library has most of them) and some are available on Netflix or Amazon Prime, as noted.)

Terra Nova Trailer (available on Netflix):



Awake Trailer (available on Netflix):




  

Monday, May 02, 2016

Movie Monday: Bad Movies

One of my favorite podcasts is Pop Culture Happy Hour, which covers movies, TV, books, music, and more in a fun, informal group discussion each week. I look forward to each new episode and was thrilled a few weeks ago when their discussion centered on Bad Movies - movies that are so bad & so poorly made that they're actually fun to watch!

I was so tickled to hear them talk about Bad Movies because I have a long, fun history with this kind of movie!

First, back in college, my best friend and I inadvertently stumbled onto some really bad movies, just by going to our tiny college town movie theater at the wrong time and later making bad choices back home at the multiplex.

After graduation, I moved to New Orleans, where I met my future husband and a bunch of great friends who remain my closest friends now, almost 30 years later. We started a Bad Movie Night tradition. One of us would host the group at our apartment, with a line-up of the worst, most obscure movies we could find (back then on VHS!). We'd start with a classic cartoon warm-up, like Gumby & Pokey or the Elmer Fudd/Bugs Bunny operas (never seen these? They are amazing!). Then, we'd watch 2 or 3 Bad Movies. Being in our early twenties, there was plenty of beer & snacks, too. Those were fun nights...

So, here is a partial list of some of the memorable Bad Movies I've seen over the years (with links to IMDB for full - often hilarious - descriptions):

Liquid Sky (1982) - bizarre movie about tiny aliens who come to earth looking for heroin but decide they like hormones secreted during orgasm better - even stranger than it sounds! My college friend and I walked out of it once then went back to see the rest another night.

Repo Man (1984) - Emilio Estevez stars as yup, a repo man and wackiness ensues. We actually walked OUT of Liquid Sky and ended up in this one!

Attack of the Killer Tomatoes (1978) - Just what it sounds like & very silly. One of the first movies we watched on Bad Movie Night - a classic. I think we watched a couple of its sequels, too (yup, there were sequels, though I see we missed Killer Tomatoes Eat France!).

Santa Claus Conquers the Martians (1964) - Martians steal Santa. Because they want him for themselves, duh! A young Pia Zadora stars.

Killer Klowns from Outer Space (1988) - Aliens who look like clowns terrorize a small town - a horror movie but also hilariously funny. Mummifying their victims in cotton candy cocoons is worth the price of admission. This one debuted on Bad Movie Night, but we've actually seen it a few times (and own the DVD) - really awesome watching it with my mom after her back surgery when she was heavily medicated! Probably a really bad idea if you have a clown phobia.

Cannibal Women in the Avocado Jungle of Death (1989) - Starring Adrienne Barbeau in a typically skimpy costume. A modern retelling of The Heart of Darkness by Joseph Conrad (seriously! my friends didn't believe me when I shouted that out during the movie, but it's true - very literary stuff here).

The 5000 Fingers of Dr. T (1952) - We just watched this one last year (the link is to my own review). We didn't intend to have a Bad Movie Night, but it turned out that way...and it was OK because we saw it with our old friends from New Orleans. A Dr. Seuss musical ostensibly for kids but really, really weird.

(You can find awesome trailers for every one of these on YouTube).

So, those are some of the highlights (or lowlights?) of my Bad Movie experiences.

How about you? Have you seen any movies so bad that they were amusing to watch? Have any favorite Bad Movies or traditions of your own? Bad Movie Night might just become your tradition, too!

Trailer for Attack of the Killer Tomatoes, a classic Bad Movie:

Tuesday, April 26, 2016

TV Tuesday: Orphan Black

I had planned to write about another show today but just realized that I've never reviewed our all-time favorite TV show, Orphan Black. This unique sci fi thriller with a sense of humor is so stunningly good that when we first discovered it, my husband, son, and I binge-watched the entire first season in a matter of days! The fourth season has just started, so this is a great time to catch up.

In the first episode, Sarah Manning, a sharp-tongued street-smart Brit in Canada, is standing on a train platform when she see a woman who looks exactly like her step in front of an oncoming train and kill herself. Shocked and horrified, Sarah grabs the woman's wallet so she can find out who she was and runs off. The mystery woman's ID identifies her as Beth Childs, and Sarah sees from her photo that she was absolutely identical to Sarah. An orphan brought up in foster care, Sarah doesn't know of any genetic family members, but the temptation to take advantage of the situation is great.

Sarah assumes Beth's identity, with the goal of cleaning out her bank account to help her out of the difficult situation she is in. She discovers that Beth was a police officer, and taking on her identity gets more and more complicated. She meets Beth's boyfriend, Paul, and her partner, Art. She also meets other women who are identical to her, one at a time. Each one is unique in hairstyle, clothing, and other aspects of outward appearance, but they are clearly identical. In fact, Sarah soon learns they are clones.

I don't want to give away any more of the plot because there are surprises around every corner in this fast-paced thriller, but it keeps you guessing...and watching. Tatiana Maslany is absolutely amazing as Sarah - and all of the other clones! - juggling multiple roles, looks, accents and more in a way that seems impossible. There is Allison, the high-energy suburban mom; Cosina, the dredlocked scientist; evil Rachel; and Helena (possibly our favorite), the wild-eyed Ukrainian who will protect her "sestras"at all costs. The clones gradually meet each other and band together, trying to get to the bottom of the convoluted mystery of who they are and where they came from. One of the best scenes in the show is a clone dinner party at the end of season 3 when they are all in the same room together - awesome.

Supporting Tatiana in her multiple roles are other excellent actors. Our hands-down favorite is Jordan Gavaris as Sarah's snarky, flamboyantly gay foster-brother, Felix, who provides a lot of laughs on the show and often wears just an apron over his naked body when working on a piece of art. Kevin Hanchard is intense and concerned as Beth's cop partner, Art. Maria Doyle Kennedy plays Sarah and Felix's caring foster mom, Siobhan, who knows a bit about Sarah's mysterious beginnings. Another of our favorites is Kristian Bruun as Donnie, Allison's husband - those two are fabulous together, especially in later seasons. And little Skyler Wexler is absolutely adorable as Kira, Sarah's beloved daughter.

The excellent acting, wholly unique plot full of surprises, non-stop action, and complex ever-growing mysteries make this an outstanding show in every respect. It is incredibly addictive. Watch the first episode of the first season, and I guarantee you will want to watch them all! Just writing about it makes me want to watch the latest episode (but we promised to wait for our college son to come home after exams later this week).

Orphan Black is produced by BBC America and filmed in Canada. Here in the US, it is available On Demand through cable (season four currently airing). Amazon Prime has the first three seasons of Orphan Black available to subscribers for free (that alone is worth the fee!). It is only available on DVD through Netflix, not streaming.



         

Sunday, April 24, 2016

Weekly Inspiration: Survival is Insufficient

Today's inspiration comes from a book I recently read and loved, Station Eleven by Emily St. John Mandel. You may have heard of this very popular and highly acclaimed novel, since it was on many Top Ten lists for 2014 and was short-listed for the National Book Award.

The novel takes place 20 years after a flu pandemic wipes out 99% of the world's population, though the action moves back and forth in time so that you get to know the characters both before and after the horrible event. In this world 20 years after the pandemic, with no infrastructure and people scattered in small enclaves, there is a traveling troupe of actors and musicians. They go from community to community along the shores of Lake Michigan and Lake Superior, performing Shakespeare plays and classical music. Painted on the side of their caravan is this motto:
"Survival is Insufficient"
          - from Station Eleven by Emily St. John Mandel 

And I thought that phrase was also perfectly fit for a life with chronic illness.

It is all too easy when you are chronically ill to get wrapped up in merely surviving, just trying to get through each day. When your every moment is ruled by restrictions and limitations, you can easily become focused only on survival. But, as this traveling acting troupe points out, survival is not life, and you need more for a real life - small joys, moments of happiness, art, music, and more.

It has taken me a long time to figure this out for myself - certainly in those early years, I was almost entirely focused on survival (though when you have little kids around, they remind you constantly that there is more to life). Now, though, I find happiness, fulfillment, and moments of joy in many ways throughout each day, like:
  • Lying outside on my deck, looking up at the clouds, listening to the birds (so many different kinds!) and the wind through the trees.
  • Reading a book that takes me to another world.
  • Listening to favorite music that makes me sing out loud or discovering new songs and artists.
  • Lying on the couch at night, with a square of dark chocolate and a mug of Raspberry Zinger tea, enjoying favorite TV shows with my husband.
  • Connecting with a friend - old or new - online.
In all of these ways - and many more - I am constantly reminded that "Survival is Insufficient" and that my chronic illness doesn't have to define my life. There is still plenty of joy to be found in this new life.

How do you find joy in your life? What things - art, music, outdoors - lift you out of a life of illness and remind you that you are more than your illness?

P.S. If you enjoy reading, I highly recommend Station Eleven (the link takes you to my review at my book blog - don't worry - no spoilers!). I bet it is great on audio, too.

Tuesday, April 19, 2016

TV Tuesday: Bosch

With a lot of our favorite winter shows wrapping up on cable, we've been watching more on Amazon Prime & Netflix lately. One of our favorite Amazon shows just came back for its second season, and it's better than ever!

My husband and I are both long-time fans of the crime thrillers starring LAPD detective Harry Bosch, written by Michael Connelly. He has written reliably fast-paced, intriguing page-turners for decades. Besides the Bosch novels, he is also the author of the Lincoln Lawyer series, which has been adapted into movies starring Matthew McConaughey. Amazon Prime's show Bosch is based on his best-selling books, and they have done a fantastic job of bringing this popular series to life on the screen.

Harry Bosch, played by Titus Welliver ("the man in black" from Lost), is an experienced LAPD homicide detective who is known for his tenacity...and for doing whatever it takes to bring a killer to justice. He is often in trouble with his superiors, but he gets the job done. He is driven in part by the still-unsolved murder of his own mother. Harry's partner, Jerry Edgar - affectionately called J. Edgar by Harry, is always perfectly dressed, and he and Harry work well together. Harry is divorced, and his ex-wife, played by Sarah Clarke, and teen daughter live in Las Vegas. Harry gets along well with his immediate supervisor, Lt. Grace Billet, played by Amy Aquino, but he often clashes with Deputy Chief Irvin Irving, played by Lance Reddick, mostly because Irving pays more attention to politics and climbing the ladder than to police work.

In season one, Bosch and J. Edgar and their colleagues were after a serial killer, while also trying to solve a decades old case based on children's bones found on a hillside. Those two cases were interwoven into the entire season, with bits and pieces of Bosch's personal life feeding into the ongoing story. Season two is based on Connelly's novel Trunk Music, where a dead body is found in a car trunk. Again, the main case carries on through the entire season, with other secondary plot lines coming into play, including more with Bosch's ex-wife and daughter and Deputy Chief Irving's son (who is a police officer) going undercover with IA to try to catch some dirty cops.

The show has been excellent right from the very first episode. It sticks closely to the books - with the characters and major cases - while adding in a lot of extra detail on the characters' personal lives and secondary cases. The tone, the actors, the pace, and the ambience (including Bosch's beloved jazz as the soundtrack) are all just perfect for fans of the books. Titus Welliver in particular is the quintessential Bosch, while J. Edgar and Deputy Chief Irving also seem exactly as I pictured them in the novels. It's a very well-done show, with gripping, suspenseful mysteries but also plenty of emotional depth and human interest. We are really enjoying seeing one of our favorite fictional characters come to life!

As an Amazon Original Series, Bosch is available only on Amazon, free to Prime members or $1.99 an episode for non-members.




Monday, April 18, 2016

Movie Monday: Ex Machina

Finally! We've been totally focused on TV for the past couple of months (thanks to our new Netflix subscription, plus keeping up with our favorite cable shows), but we finally found time to watch a movie last night...and it was worth the wait! Our 18-year old son even watched it with us (a minor miracle).

We watched Ex Machina, one of last year's highly acclaimed movies. It's a combination sci fi and psychological thriller, with a quiet drama-like tone to much of the film. Caleb works as a programmer for a large corporation and wins a lottery to spend a week with the company's mysterious, reclusive founder. He is whisked away by helicopter over miles and miles of wilderness to what looks like a quiet retreat among jaw-dropping natural beauty, surrounded by snow-covered mountains. Caleb meets the famous CEO, a heavily bearded guy named Nathan wearing jeans and a t-shirt and bare feet, and is surprised to find that the home is actually a high-tech underground fortress. Nathan is a bit overwhelming and disconcerting but seems like a good guy, who greets Caleb warmly and tells him he just wants to talk and have a beer with him.

Then Nathan explains that the real purpose of Caleb's visit is to help test Nathan's invention: the most advanced Artificial Intelligence ever devised. Nathan tells Caleb his job is to perform the Turing Test, a classic test defined by Alan Turing to see if an AI is advanced enough to be indistinguishable from a human. Caleb is to have a series of conversations with Nathan's AI, while observed by Nathan. The first day or two are fascinating but then things start to get a little weird. Nathan's AI is distinctly female, though only her face and hands have a skin-like covering. The rest of her looks like a conglomeration of wires and lights and electronics, encased in a workout clothes-like metal outfit that leave much of her inner workings visible. Still, she is remarkably life-like, and Caleb begins to think of her as a real person.

Up to this point, the movie is fairly quiet in tone, with little action, though there is a vague feeling of unease and suspense building. Nathan seems to be hiding some secrets, Caleb begins to feel more like a prisoner than a guest, and it's unclear where this test is heading or how it will end. Toward the end of the film, the pace picks up considerably as the sinister tone builds. We were glued to the screen, as unexpected surprises and secrets unfolded and the tension built. All three of us enjoyed the movie very much and found it quite thought-provoking, too. Afterwards, we discussed if the events in the movie could really happen, if technology was moving toward this very point, and about some of the more paranoid fears about AI that my husband said had been voiced by real-life high-tech geniuses.

All in all, it was a suspenseful movie with sci fi elements, some action, and a thoughtfulness that we all enjoyed. It's pretty fascinating that a movie with only a few actors (one of them portraying a robot) was so engrossing. Ex Machina gave us plenty to ponder, plus was entertaining and fun. Our son enjoyed it so much, he is watching it again tonight with his girlfriend!

Ex Machina is currently available for free on Amazon Prime, through Netflix on DVD only, at Redbox, and probably through most cable streaming services, too.




Friday, April 15, 2016

Rituximab - A Promising Treatment for ME/CFS

Photo from Freeimages.com
I have been watching and reading the ground-breaking research on using a cancer drug, rituximab, for ME/CFS with great interest and wanted to provide a brief update here for those who haven't heard about it yet or who want more information (or, as always here, a simple explanation).

Rituximab is a drug that affects the immune system, used for patients with lymphoma, a form of blood cancer, and also for autoimmune conditions like Rheumatoid Arthritis (RA). There is now growing evidence that it might work for a majority of ME/CFS patients, either greatly improving their symptoms or even providing complete remission.

A simplified timeline of what's gone on so far:
  1. In 2004, two Norwegian doctors using rituximab for a group of lymphoma patients noticed that one patient - who also happened to have ME/CFS - was not only cured of his/her lymphoma but that all of his/her ME/CFS symptoms had disappeared as well.
  2. Excited by this unexpected occurrence, those same two Norwegian doctors conducted a small, 1-year study of 15 people with ME/CFS in 2011. A full two-thirds of the patients (10), experienced significant improvement on rituximab. Two of those 10 seemed to be completely recovered, even 3 years after their initial doses, and were back at work.
  3. In July 2015, results were published from a larger Norwegian study of rituximab in 29 ME/CFS patients, showing that once again, almost two-thirds of the patients (18) responded well and improved significantly, some achieving full remission. Eleven of the 18 who responded were still in remission three years after beginning the treatment, and some have not had symptoms for five years. This study included a variety of ME/CFS patients, ranging from moderate to severe (bedbound).
  4. A much larger study, of 150 ME/CFS patients, is now underway in Norway and includes a control group. Results are due to be published around 2017-18.
Can you believe those facts?? Two-thirds significantly better? Complete remission? These are words that many ME/CFS patients never thought they'd hear.

So, how does this miracle drug work?
Rituximab, a cancer drug, wipes out most of the body's B-cells, a kind of white blood cell that makes antibodies. In the ME/CFS trials, the doctors have generally seen a 4-6 month lag in response time after the first dose is administered, which is about the length of time it would take for existing antibodies to be cleared from the body. Patients showed signs of relapse at about 1 year - approximately the amount of time it would take for the body to make more B-cells and re-grow antibodies. The researchers have found in the series of studies that giving multiple doses of rituximab over a long period of time helps to increase the number of people who respond and decrease relapse.

Is there a down side? Definitely. Killing off all your B-cells is not without risks, and there can be serious side effects, just as there are with immunotherapy in cancer treatments. Some people feel sicker during that initial period. I don't know about you, but I would be very willing to put up with worse symptoms for a few months if it meant a 67% chance of remission. Rituximab is currently a very expensive drug.

Also, although two-thirds of patients responding is an amazing number in any treatment study, that still leaves one-third that does not. You could potentially pay a lot of money and suffer through that initial worsening, with no benefit...though the odds are in our favor so far. Future studies will try to figure out what separates the responders from the non-responders and what factors can help to predict who will benefit from rituximab.

I'm also not sure whether rituximab could be used in ME/CFS patients who have active infections, like my son who has Lyme disease plus two other tick infections. I would think that killing off all B-cells and clearing the body of antibodies wouldn't be a great idea with active infections present, but I'm no expert.

When will rituximab be widely available? So far, Norway has conducted all of the ME/CFS rituximab studies to date. UK advocates at Invest in ME have raised $600,000 for their own rituximab study of 30-40 people.

Rituximab is already FDA approved in the U.S., for lymphoma patients and also RA. It is sometimes used in the U.S. off-label (i.e. for purposes other than its official approval) for other autoimmune conditions, like MS, lupus, and others. I have no idea whether any ME/CFS specialist are yet prescribing it for patients here or whether they are waiting for the results from the largest Norwegian study. As for the cost, if it is eventually FDA-approved specifically for ME/CFS, then it should be covered by most health insurance; used off-label, as it could be now, insurance coverage will vary based on the insurer and the specific policy.

So, those are the basic facts - and exciting facts they are! Besides the links above to the two early Norwegian studies, you can read:

I plan to ask my ME/CFS doctor about rituximab on my next visit. I am interested to know whether she or any of her colleagues are using it yet here in the U.S. or whether there is any information yet to predict who will respond to it.

Do you know of any patients on rituximab or any doctors using it for ME/CFS yet?

What do you think of this exciting new possibility?

Tuesday, April 12, 2016

TV Tuesday: The Catch

My husband and I decided to try the new ABC drama/thriller The Catch, and after three episodes so far, we are enjoying this fun, fast-paced game of cat and mouse very much.

Alice, played by Marielle Enos, runs a thriving private detective agency with her partner and best friend, Valerie, played by Rose Rollins. They are very good at what they do, as seen in the first episode when they foil a talented art thief. Alice is happily engaged to Christopher, played by Peter Kraus of Parenthood fame. They are planning their wedding, and their passion and love for each other is obvious.

Until...we see that Christopher is a con man, and Alice is his latest con. Christopher's real girlfriend, Margot, played by Sonya Walger who played Penny on Lost, tells him it's time to end the con and disappear. Alice has just given Christopher $1.4 million as her half of the down payment on their house, and the next morning she discovers that he is gone without a trace - his apartment empty, his supposed place of work empty, and he - and her money - gone.

Alice is, of course, heart-broken, and also determined to find him. The viewers, though, know something that Alice doesn't: "Christopher" has broken the #1 con-man rule and actually fallen in love with Alice for real. Leaving her and moving onto the next con isn't as easy for him as it should be.

So far, three episodes in, there seems to be a pattern to the show. In each episode, Alice and Valerie take on a new client and solve a new case. Meanwhile, "Christopher" takes on a new identity and he and his two partners (Margot and Reggie, played by Alimi Ballard from Numb3rs) move forward on their new con. Alice's friends want her to forget Christopher and move on...but she is secretly trying to find him. Add in FBI agent (ex-Interpol) Jules Dao, played by Jacky Ido, who has been tracking "Christopher" for years.

I have seen some criticisms that elements of the show are unrealistic. I think those people are entirely missing the point of this show - it's fun, pure and simple! Besides, the fact that a PI who catches con men got conned herself is the whole ironic point. The lead actors are all excellent in their roles (and easy on the eyes!). Peter Kraus as "Christopher" just oozes charm and sexiness...though it is weird to see him in the role of a bad guy after watching him for so many years as dedicated father and husband Adam Braverman!

This is a typical Shonda Rimes show (her other successes include Grey's Anatomy, Scandal, and How To Get Away with Murder). The combination of mystery, romance, and cat-and-mouse chase is lots and lots of fun. We are enjoying the ride for now and interested to see where it goes.

The Catch is shown on ABC Thursdays at 10pm (though we never watch anything when it actually airs!), and the first three episodes are all available for free On Demand or at the ABC website. They are also available for $1.99 each at Amazon.




Friday, April 08, 2016

Book Review: How To Live Well with Chronic Pain and Illness

Have you heard of Toni Bernhard? She's an important member of our ME/CFS community, a kind, compassionate person with a background in Buddhism. Last fall, Toni published her third book, How To Live Well with Chronic Pain and Illness, which I just reviewed on my book blog.

I have read and reviewed two previous books by Toni Bernhard, who has become a good friend of mine over our 14 years of illness together (we got sick at about the same time): How To Be Sick and How To Wake Up. The first book was about applying the principles of Buddhism to a life of chronic illness, and the second was a more general book – for anyone, not just those chronically ill – about applying Buddhism principles for a happier, more peaceful life. In her third book, How To Live Well with Chronic Pain and Illness: A Mindful Guide, Toni once again focuses on those living with chronic illness and pain, with a more general guide, based on her own life and experiences and the wonderful columns, “Turning Straw Into Gold,” that she has written for Psychology Today.

I highly recommend all three books - I've found them all helpful in improving my life. Like me, Toni has a strong focus on finding joy in every day and living life to the fullest (in her own way), even with the extreme restrictions she lives with. I think this third book is my favorite, packed full of personal experience & helpful advice on living with chronic illness. Check out my full review and see for yourself.

Thanks for another outstanding book that will greatly help your fellow patients, Toni!

         

Research Working Toward ME/CFS Diagnostic Test

© | Dreamstime Stock Photos
Last month, Griffith University in Australia created a stir in the ME/CFS community with this headline, "Screening Test for Chronic Fatigue Syndrome on its Way" (you can read the article at the link).

While that headline was perhaps a bit premature, the news is still good. Griffith says that it "has identified new markers that can be used to screen patients and is now looking to partner with diagnostic companies to bring a test to market." The article doesn't go into detail on exactly what those markers are.

Digging deeper, this page lists several relevant studies on biomarkers for ME/CFS that have been researched, with papers published, by Griffith's National Centre for Neuroimmunology and Emerging Diseases. These studies have looked at a wide variety of biomarkers in ME/CFS over the past four years - some impressive work that I didn't even know was going on!

The university says they are looking for a commercial partner to help bring a diagnostic test to the market...so maybe it isn't very far down the road. A diagnostic test for ME/CFS would be a game-changer for the patient community, with the CDC estimating that roughly 85% of those with ME/CFS in the U.S. are currently undiagnosed. Faster, more accurate diagnosis would lead to more timely treatments that could perhaps help more in the early stages of the illness.

Good news...and hopefully, a brighter future ahead for ME/CFS patients!

Thursday, April 07, 2016

Balancing Hope and Acceptance

This is a reprint of my article published on ProHealth last month. How do you balance hope and acceptance in your life?

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Balancing Hope and Acceptance

June 4, 2003
When will I stop thinking of my pre-illness life as “normal”? I guess that would be the sign of true acceptance. But I’m not sure I want to be that accepting!  I don’t want to forget “the old me” (what I still think of as the real me). 

It’s a constant internal struggle. If I truly accept this illness as part of me, does that mean I give up all hope of recovery? Yet, if I refuse to accept my new limitations, then I am sentencing myself to continue relapsing.

I wrote that entry in my journal a little over a year after becoming ill with ME/CFS, shortly after being diagnosed. I was struggling to accept this “new normal” and to come to terms with the possibility of never recovering. Now, 14 years into living with chronic illness, I am happy in my post-illness life, though balancing acceptance and hope is still an ongoing goal.

As I wrote in that journal entry, there seems to be a dichotomy between the two. Does accepting your current situation mean you are giving up hope of ever getting better? Does continuing to strive to improve your condition mean you will keep relapsing? It’s difficult at first, but acceptance and hope can co-exist peacefully. Here’s how:

Let go of the past.
A big part of acceptance for me was giving up my ideas of who I was based on what I could do. I had always seen myself as a strong, fit, independent person, so living with physical limitations was difficult. I had also enjoyed a satisfying professional career in engineering and identified myself as a leader. Although I had voluntarily left my career before becoming sick in order to spend more time with my family, I always intended to return to it after a couple of years. I missed my professional life and that sense of being capable and self-sufficient. It took me some time (and professional counseling) to let go of that identity and recognize I was still OK without it.

I also struggled with my identity as a mother. I used to spend a lot of active time with my family – hiking, playing soccer with the kids, and taking care of the house with my toddler son by my side, cleaning, playing, and running errands together. Those first few years after becoming sick, I felt horribly guilty that I couldn’t be the mother I wanted to be. I finally realized, though, that it didn’t matter to my kids – they loved me just as much reading with them, watching videos together, or playing quiet games. They loved me because I was their mother and I gave them love, not because of what I could or could not do.

Remember, you are not defined by what you do. You are still the same person inside, even if you are no longer working or involved in other things that used to be linked to your identity. Allow yourself to mourn those lost identities or opportunities, to see the essence of yourself without them, and then move on.

Live for today & focus on the positive.
Gradually, I began to create a new life for myself. When my youngest started school, I resumed what I had started after leaving my job – freelance writing. I don’t make much money and my energy/time is limited, but it’s work that I love, and I can contribute a small amount to our finances. Most importantly, it’s work I can do on my laptop from the couch!

I focused on things that I love that I could still do with chronic illness, like reading, blogging about books, being outdoors, and watching TV and movies with my family. I started a Joy Journal to help myself focus on the good things in my life.

You can do the same. Focus on things that give you pleasure that fit within your new life, perhaps even finding a new interest, like knitting or reading classics. Teach yourself to recognize small joys in your life and to feel grateful for what you have. Start a journal to record daily joys or gratitude or share them on social media (use #GratefulToday). Connect with other people online or in real life with a similar positive focus.

Don’t fight against your body.
In the early days, my condition was very up and down which made acceptance harder. Some days I felt good and returned to normal activities, only to feel horribly sick again and unable to get off the couch for days or weeks. Just learning about post-exertional malaise (aka exercise intolerance) helped. I began to record my activity level each day, making note of what caused a “crash” and what I could tolerate.  As I learned what my limits were, I had fewer bad days and more OK days.

Try to live within your limits as much as you can. Keep simple records of how you feel and your activity level each day to figure out what makes you worse and what you can tolerate. Listen to your body and rest as much as you need to.

Feed hope.
The other side of the coin, hope, came more easily to me since I am naturally an optimistic person. I did go through some dark years of despair in the beginning, though, especially after both of our sons also got ME/CFS. I saw a wonderful psychologist who specialized in chronic illness; she helped me tremendously with both acceptance and hope. And I read a life-changing book called The Anatomy of Hope by Dr. Jerome Groopman that I recommend to anyone living with chronic illness. It defines what real hope is and helps you understand how to hold onto it, even in the face of frightening odds.

I put my scientific background to use and read all the research on ME/CFS that I could find. Research has come a long way since the early days of my illness, and every new study that comes out – focusing on physiological aspects of immune dysfunction, infections, genetics, and more – gives me hope that we are getting closer to some real answers for patients.

I also searched relentlessly for treatments to help my sons and I, often based on those research studies. We have discovered that although nothing helps a lot, there are a lot of treatments that each help a little…and those add up to considerable improvement over time. Each improvement, no matter how small, further feeds that sense of hope.

You can feed hope, too. Read research summaries, visit blogs and websites like this one to stay up-to-date on the latest news, and look at each new piece of information about your illness as another step closer to a cure or at least effective treatments. Keep trying new treatments (which often requires some trial and error and a lot of patience!). Just better understanding your illness can lead to improvements in your quality of life.

Accepting – even loving – your life as it is today isn’t giving up. It’s making the best of today, while holding onto hope of an even better future.