Friday, October 09, 2015

2015 NIH Grants for ME/CFS

Hi, it's me! Yes, I am still here - and still struggling with this major crash, six weeks now. I have finally gotten rid of the bronchitis but am left with a bad flare-up of my chronic yeast overgrowth, due to all the antibiotics I had to take. I can tell my symptoms now are due to yeast - severe flu-like aches, mild sore throat, always tired - just from past experience. I am doing all that I can to address it, using all the tools in my anti-yeast kit! Now, it's just a matter of time (I hope). I am making some progress and actually got out into the world (briefly) this week!

I am trying to get back into the routine of regular blogging, but all of my writing has suffered during this rough patch.

National Institutes of Medicine - photo from Health Rising
So, here's a very important post where someone else has done all the hard work for me. I turn once again to Cort Johnson, the dedicated and very talented investigator/writer behind Health Rising. Back in August (yes, I've been down that long!), Cort posted a comprehensive and very informative list of all of the 2015 research grants approved by the NIH (National Institutes of Health in the U.S.) for the study of ME/CFS. As he points out, there are a surprising number of them - just imagine what could be done with research funding to equal other serious diseases!

The grants in this list are not the old "Is CFS depression?" type of studies we saw in the past - these are solid, science-heavy studies on all aspects of our complicated illness - immune dysfunction, genetics, exercise intolerance, the role of infections, and more. And the studies cover women, men (finally!), and even pediatrics (double finally!).

Note that the first study listed on Cort's blog is being led by Ian Lipkin and Maddy Hornig who earlier this year released their data on a ground-breaking study of immune dysfunction in ME/CFS. Ian Lipkin is from outside of the ME/CFS world, known as a world-renowned virologist - definitely a good person to have on our side! But it's not all big names - there are plenty of new researchers in this list of grants, too. That's great news.

In fact, this is all great news! Very exciting to see so many complex studies with such depth to them and to consider the kinds of answers we could get in the coming years on biomarkers, possible causes, and effective treatments. The state of research into ME/CFS has never been better!

Tuesday, October 06, 2015

TV Tuesday: How To Get Away with Murder

One of our favorite TV shows from last year is back for its second season: How To Get Away With Murder. To give you an idea of how good this show is, our 17-year old son will not watch any TV with us, other than a few half-hour comedies...but he is hooked on this one! He actually sits down with us for an hour each week to see what happens next. It is a show filled with suspense and intrigue, and Viola Davis recently won a Best Drama Series Actress Emmy for her leading role.

On the show, Davis plays Annalise Keating, a law school professor and high-powered defense attorney with a kick-ass attitude. Each year, she chooses five of her law students to assist her in her practice with real cases. She selects those students at the beginning of season one, and they are a diverse group, all ambitious but each with his or her own quirks and secrets. Annalise is also assisted by two lawyers in her practice, Frank and Bonnie (played by Liza Weil, who played Paris on The Gilmore Girls, another current favorite show of mine!). The three lawyers and five law students tackle a variety of cases, all having to do with murder, while Annalise lectures to her Criminal Law class guessed it - how to get away with murder, as a way of teaching them how to be great defense lawyers.

But that's not all. Right from the very first episode, we see that a murder has taken place that involves Annalise and her students. In those first episodes, scenes alternate back and forth between classes and cases and one very frightening night when the five students are trying to cover up a murder and get rid of a body. It takes a while (in fact, the entire first season!) for all of the pieces to fall into place so that the viewers fully understand what happened and who the murderer(s) are, but we were hooked from that very first episode.

But that's not all! So far, two episodes into the second season, there have been a total of 3 murders (so far) committed by various people on Annalise's team! Yup, this is one screwed-up group of people. Meanwhile, amidst all this murder, investigations, and cover-ups, the team keeps trying to act normal, go to classes, and try other cases. Oh, and of course, there is a lot of sex - it seems everyone is getting involved with ill-conceived relationships. Davis is not the only actor on the show worthy of accolades - it is an excellent ensemble cast, and the show is produced by Shonda Rimes, creator of Scandal and Grey's Anatomy.

The rapid-fire way the show is filmed is unique for television, as is its super fast pace. Scandal piles upon scandal, murder piles upon murder. The continuing puzzles in the show - both the ongoing issues among the team and the cases they try - are addictively compelling. You will guess who the murderer is over and over...and probably be wrong every time. If you enjoy reading mysteries and thrillers, you will love this show, though don't expect too many endearing characters!

What favorite TV shows of yours are back for a new season?

NOTE: The second season of How To Get Away With Murder is airing now and available On Demand and on Hulu. Both seasons are available on Netflix, and Season 1 is currently available for the odd price of $0.67 an episode on Amazon Prime.

Monday, October 05, 2015

Movie Monday: The Cake Eaters I am on yet another Monday, apologizing for not posting much last week. Believe it or not, I am still struggling to come out of this crash caused by my annual bout of bronchitis. I am definitely improving but not yet back to my normal baseline. I finished my last round of antibiotics last week, had a clear chest x-ray, and started to be able to do a few things around the house, but now I am struggling with the yeast overgrowth caused by the antibiotics (which is always present in me but badly flared up now). I did take a walk today - my first in over a month! Just 10 minutes - v-e-r-y slowly around our two cul-de-sacs - baby steps!

While my husband was out golfing one evening last week, I indulged in a Sue-movie, i.e. one with no action, car chases, or shooting. This is a rarity for me, with three men in the house usually choosing our movies!

I watched The Cake Eaters (free on Amazon Prime), a different kind of coming-of-age story, wrapped up with a family's struggle with grief. Kristen Stewart plays Georgia, a high school student struggling with Friedreich's Ataxia, a progressive neurological disorder that is very disabling. Georgia manages pretty well in spite of her disabilities; she is a good student and loves to spend time with her quirky, independent grandmother, Marg, played by Elizabeth Ashley. As the film opens, Georgia is escaping from her overprotective mother to spend a day at the flea market with Marg, selling haunting and beautiful black and white portraits her mother has taken of her, to help bring attention to the disease.

At the flea market, they meet Beagle and his dad, played by Aaron Stanford and Bruce Dern, respectively. They are grieving over the loss of Beagle's mother, after a long and difficult illness. Beagle is a young man unsure what to do with his life, now that his mother is gone, because he was totally focused on taking care of her. Now, he works at the high school cafeteria and dabbles in painting. His dad knows Marg and introduces him, and Beagle is immediately drawn to Georgia and not scared off by her disabilities. Soon after, Beagle's older brother, Guy (played by Jayce Bartok), shows up unexpectedly, after being away for three years.

As the three men try to figure out how to get along together and move forward, Beagle and Georgia get closer. Georgia's grandmother urges her to go slowly with Beagle, but Georgia tells her she doesn't have time to wait. The three men struggle with their relationship, secrets are revealed, and Georgia moves forward with her plan to experience all life has to offer before it is too late, despite her mother's attempts to protect her. All of the actors did a great job in these emotional roles, though Stewart was especially convincing in her portrayal of a young woman with a crippling disease. I really enjoyed this intense, coming-of-age family drama that looks at life with chronic illness, a topic not often touched upon in movies. Despite that subject matter, the movie is not depressing but rather focuses on life, love, and moving forward.

Have you seen any good movies lately?

And if you also like to read, check out what we've been reading this past week at my book blog.

Tuesday, September 29, 2015

TV Tuesday - Mr. Robot

Last week, I introduced a new feature, TV Tuesday! While I have been so severely crashed this past month, I have watched a LOT of TV, so I thought I'd add TV reviews to the blog, in addition to the movies reviews I run on Mondays. I figured plenty of other ME/CFS patients probably enjoy watching TV, too. What else are we going to do while stuck on the couch??

This week, I am highlighting a new show that premiered this summer, Mr. Robot. Although its first season is over, all of the episodes are still available free On Demand or on the USA Network website. This is one of the few shows that my husband and I watched with our 21-year old college son this summer - he usually comes home once a week, and the three of us enjoy watching favorite TV shows together (our younger son doesn't have much interest in TV!)

Mr. Robot is a twisty and suspenseful show about computer hackers and conspiracies. Elliot, played beautifully and cryptically by Rami Malek, is a socially anxious computer programmer who works for a computer security firm. His childhood friend Angela works alongside him and is one of the few people that Elliot can comfortably interact with. Elliot is contacted by a mysterious anarchist hacker organization, headed by a man known only as Mr. Robot, played by Christian Slater. Mr. Robot wants Elliot to join his team, and although Elliot has some misgivings and questions, he gets involved with them because he agrees with their conspiracy goals - to bring down the ever-present E-Corp, known by Elliot and throughout the show as Evil Corp. They represent all the paranoia Elliot feels about the Big Brother-type world we live in, and they are also responsible for the death of Elliot's father and Angela's mother. Carly Chaikin, who we loved in Suburgatory, also co-stars as one of the other hackers working for Mr. Robot. In each episode, the plans to bring down Evil Corp progress, all while Elliot tries to keep up appearances in his day job and maintain his friendship with Angela. Through it all, we also see Elliot's weekly mandatory meetings with a therapist, though we don't know why.

The show is filmed in a jerky, realistic way in New York City, almost as if from a handheld camera. Elliot narrates the show in a voice-over in which he talks directly to the audience. This approach and the cinematography add to the jumpy, paranoid feel of the story. All in all, it feels more like a movie than a typical TV show, and all three of us have been hooked right from the start. We still have a couple of episodes left to watch, so no spoilers, please! We've already been blown away by some major plot twists that we never saw coming, and we can't wait to see how the season ends.

If you've seen Mr. Robot, what did you think?

What are your favorite TV shows now?

Here's a short preview of Mr. Robot:

Monday, September 28, 2015

Movie Monday 9/28: The Words

Here I am again on Monday, apologizing for not writing on the blog much last week! I thought last week would be better, finally, and I did improve a little bit at the start of the week, but I hit bottom again by Thursday night. In case you haven't been keeping track (I have!), that's a full month now of being housebound and mostly incapacitated. Despite being at the end of my 2nd round of antibiotics, I still have some bronchitis symptoms, though much milder now. I did actually feel a little better this morning after an awful weekend, but I'm afraid to sound too hopeful after last week!

Anyway, not much writing time/energy last week, but I had plenty of time for reading and watching TV & movies again! My husband was out of town, so I chose a movie with absolutely no action, shooting, or car chases:

I watched The Words, an intricate story within a story within a story. The film opens with Dennis Quaid as Clay Hammond, an acclaimed author reading from his latest novel at a posh event in NYC. The action then shifts to the story that Hammond is reading, about a struggling young writer named Rory Jansen, played by Bradley Cooper, and his beautiful longtime girlfriend Dora, played by Zoe Saldana. Rory wants to be a novelist, but his father is urging him to join the family business or at least "get a real job" so he can support himself. Rory spends years working away at a literary novel and finally sends it out. It is rejected by every agent in NY, though one agent calls him into his office to explain that it's a beautiful piece of writing but won't sell. Rory finally gets a ground-level job as mail boy at a large literary agency and asks Dora to marry him. They honeymoon in Paris, where Rory admires an old leather briefcase in an antique shop, so Dora buys it for him. After returning home, Rory discovers a manuscript hidden in the old case, about a WWII American soldier stationed in Paris who fell in love with a young French woman - and at that point, the action switches again to that story, as Rory reads about the young man and woman in Paris and is brought to tears by the beautifully written story. Frustrated that he can't seem to write anything himself, Rory starts to retype the old manuscript in his computer, just to feel the perfectly written story come through his fingertips. Dora finds the file the next day, assumes that he wrote it, and urges him to submit it. The novel is published and both it and Rory became a huge success. He tries to forget his guilt over copying the manuscript, until he meets an old man who claims that he wrote the story, back in Paris decades ago.

This is a story told in layers, as Clay narrates his novel about Rory and Rory copies the story about the then-young man in Paris. But mostly, it is a story about an ethical dilemma and the aftermath of ignoring your conscience. Though its main topic is plagiarism, this movie isn't just for writers. It's about life and dreams, decisions and consequences. The acting is all top-notch, as you might have guessed from the all-star cast, and the plot is unique and intricate. Though I set out to choose a movie different from the thrillers we usually watch, The Words has its own kind of suspense, as you wonder whether Rory will get away with his crime, how he'll fix things with the old man, and what Clay's own story is. It kept me riveted - and guessing - right up until the end.

Have you seen any good movies lately?

P.S. If you like to read, head over to my book blog's Monday post to see what we are reading this week!

Tuesday, September 22, 2015

TV Tuesday 9/22 - The Wire

Because of my illness, I watch quite a bit of television. I am usually wiped out and needing to lie down by evening, so my husband and I watch two TV shows together in the evening (and sometimes Jeopardy, too!). That's our time together, and we enjoy watching favorite shows. I also watch something on my own (something with no action or suspense - ha ha!) at lunchtime, to help myself relax and slow down for my afternoon nap.

So, I figured other ME/CFS patients probably also watch a lot of TV - why not do some TV reviews as well as my weekly movie reviews? So, here we go - TV Tuesday! Each week, I will highlight a different TV show. Between TV seasons the past few weeks (and with me so sick), my husband and I were searching for something new to watch, so we settled on a decade-old HBO series that we'd heard great things about (and that is available for free now on Amazon Prime):

We started watching The Wire last week, and we are completely hooked now! The show takes place n Baltimore (a city close to us) and focuses on the drug trade in the projects there. Both the Homicide and Narcotics departments of the Baltimore Police Department are interested in a particular drug dealer who controls a whole area and whom they suspect is responsible for at least a dozen murders. A judge notices this activity and requests that the Baltimore PD set up a special commission to take down this gang leader. The police department heads aren't thrilled with this order, so they reluctantly comply, donating some of their worst dead weight officers to the cause. This ragtag group is given a basement office and sets out to try to catch one of the city's most notorious and untouchable criminals.

Dominic West does a great job as Detective McNaulty, the Homicide detective that started this whole thing and is completely obsessed with catching this guy. Two of our favorite actors from Treme (another amazing show!), Wendell Pierce and Clarke Peters, star as other detectives, and Sonja Sohn is excellent as the lead Narcotics officer on the case. The show alternates between the points of view of the people involved in the drug trade (some of them just kids) and the police officers investigating, so you see both perspectives, as well as the officers' private lives. The show has really grown on us, and by the third episode, we were liking it more and more. The acting is excellent, the gritty setting is very realistic (luckily, we haven't seen much of this side of Baltimore before), and the twisty, intricate plot has sucked us in completely. Given the subject matter (and its origins on HBO), there is some violence and lots of swearing. So if that bothers you, this show is probably not for you. If it doesn't bother you, then the scene where McNaulty and his partner investigate a crime scene for 10 minutes using only the f-word is pretty hilarious!

That's what we're watching this week. What TV shows are you enjoying in between the summer and fall seasons?

Monday, September 21, 2015

Movie Monday 9/21 - Coherence

I was still very, very sick last week (perhaps finally starting to perk up a bit today? maybe?), so I watched a LOT of TV and read a lot. I really tried to rest and stop trying to get things done (tough for me!), so one day I indulged in a couple of old 80's movies: Dirty Dancing and Flashdance. What fun! Dirty Dancing is one of my favorite movies of all-time and the music and dancing in both put a big smile on my face - just what I needed.

This weekend, my husband and I watched a sci fi movie on Amazon Prime, Coherence, that I couldn't wait to tell you about! It was so mind-blowingly good. This quiet little movie has the kind of twisty plot that I love, the kind that you often encounter in time travel movies, though this was different. It starts out with a rather mundane scene - eight friends gather together for a dinner party. You gradually get to know them a bit, as they come in and reconnect and chat over wine and dinner. One topic of conversation is a comet that is passing extremely close to earth that night. Em says that she read about weird things happening the last time a comet came this close, about 100 years ago, and Hugh says that his brother, who is a theoretical physicist, told him to call him if he noticed anything strange tonight. First, a couple of cell phones spontaneously shatter, and the whole group loses cell coverage. Then, the power goes out, and the real fun starts. I won't tell you any more about what happens because that would ruin your fun, but things get really weird after that! There's not much violence - it's not like a horror movie. It's more of a cerebral scariness, as the group of friends (and the viewer) very gradually figure out what is going on. There are no huge stars in this film - it is truly an ensemble cast - but the acting is all very good. It is a clever, mind-bending movie that will have you gasping right until the very last moment (great ending).

If you liked Coherence, you might also like Sliding Doors (which is mentioned in Coherence) and The Butterfly Effect (two of my favorites).

Have you seen any good movies lately?

Thursday, September 17, 2015

Latest ProHealth Article: Finding Community

Sorry I haven't been writing much lately - I am STILL badly crashed. It's been three weeks today, and I am still confined to the couch with no energy. The tightness in my chest has finally eased the last two days, so I am hoping that is a good sign, though I am still exhausted.

So, I have been engaging in what I call Aggressive Rest - not just lying on the couch while still trying to get stuff done but putting down the laptop, not attempting any work or writing, and REALLY resting. So, my days have been filled with reading in my lounge chair on the deck, napping, meditating, and watching a lot of TV and old movies.

While I am aggressively resting, I thought you could enjoy my latest article up at the ProHealth website: Birds of a Feather: The Joys of Community, all about finding and enjoying a sense of community, both locally and online.

It's fitting that this article was published last week because my virtual community of fellow ME/CFS patients has been essential to me these past few weeks. I haven't left the house, except for 2 visits to the doctor, and until yesterday, my throat hurt too much to talk on the phone. The only people I've seen in weeks are my husband and sons. I've even been avoiding chatting much on Facebook with my In Real Life friends & family because I know it makes most people feel uncomfortable to hear about chronic illness.

Instead, during my brief times online, I have been enjoying Twitter (@livewithmecfs) - I can manage 140 characters at a time! - and my Facebook page for this blog. In those places, I can talk about how I'm feeling and joke and laugh about watching silly 80's movies or old episodes of Glee (my comfort TV!) without feeling self-conscious. I know that other people with ME/CFS will immediately understand - that they are likely going through the same stuff (or have before).

So, I hope you enjoy the article and that it inspires you to find your own people, your own community. It adds so much meaning to our lives to connect with others like ourselves! And if you don't have your own community yet, join the discussions here on the blog, on Twitter, or on my Facebook page - we get you.

Monday, September 14, 2015

Movie Monday: Hot Pursuit & Shaun the Sheep

Hope you had a good weekend! I was still very sick, so we stuck with some light, fun movies this weekend (I also comforted myself with old Glee episodes!) - nothing too taxing to the brain here, just some good laughs:

My husband and I watched Hot Pursuit Saturday night, a light, fun movie. Reese Witherspoon stars as Officer Cooper, a rookie cop who was pretty much born into the job and wants to live up to her father's great reputation in the department. So far, that isn't going so well, as she's responsible for turning their last name into a verb as in "You really Coopered that one." She has finally been given a real assignment out from behind a desk, to serve as a female escort for Daniella Riva, the wife of a Columbian drug dealer played by Sofia Vergara. Riva's husband is scheduled to testify against a big drug lord in Dallas the next morning, and Cooper must make sure his wife stays safe until then. Things go awry right away, though (as they tend to do in these movies!), and Cooper and Riva find themselves on the run together, along with Riva's suitcase full of shoes. The running joke is that they are an oddly mismatched set: tiny, by-the-book police officer Cooper in her spotless uniform and tall, voluptuous break-the-rules Riva in her tight dress and stiletto heels. The movie is as titled, one long chase, as the odd couple try to avoid both angry drug dealers and bad cops. It's mildly amusing and has some funny moments, though there is nothing too spectacular here. Many of the jokes are predictable, with Reese's height and Sofia's looks and/or age the butt of most of them. But Reese is at her most adorable and Sofia is...well, classic Sofia (aka Gloria from Modern Family), and the two do seem to be having fun together. Perhaps the producers were trying to recreate the success of The Heat, the girl cop-buddy movie starring Sandra Bullock and Melissa McCarthy from a few years ago, but that movie had more depth to it and was funnier. Hot Pursuit is a light bit of cotton candy, escapist fun.

Sunday night, we actually got our 17-year old son to watch a movie with us, a rare occasion these days! We watched Shaun the Sheep, the latest movie from Aardman Animation, with our son and his girlfriend. This was another bit of light fun for a sick day, with plenty of laughs. If you are unfamiliar with Aardman, they created the amazing Wallace and Gromit claymation series (4 30-minute shorts), as well as the feature-length movie Chicken Run and the hilarious TV show, Creature Comforts (both British and American versions). We are long-time fans of all of these at our house! Shaun the Sheep is a character from one of the Wallace and Gromit episodes (A Close Shave) - his name is a play on words, as in "shorn" - seen here in his first feature-length movie (though the character already has his own TV cartoon show). Like Chicken Run, Shaun the Sheep begins in a quiet barnyard in England. The farmer, his dog, and the sheep are all a bit tired of the same old routine, so when the sheep spy an ad on the side of a bus to "Take a Day Off," they come up with a plan to keep the farmer from his usual routine for a day, while they relax in the house with snacks and TV (a very funny scene). Things go wrong, though, and the farmer ends up in the Big City down the road with amnesia, so the sheep (and the dog) take off to rescue him. Hilarity ensues as the animals try to disguise themselves, find their way around the city, stay away from the evil Animal Control man, and find the farmer. Like other Aardman projects, this movie is funny and very, very clever, filled with more sight gags than you could possibly spot in three viewings or more. There are no words spoken in the 90-minute film - the humans speak in a sort of Peanuts-style garble - but it manages to tell a story beautifully without them. We all enjoyed it and laughed a lot, though all agreed it wasn't quite as good as the original Wallace and Gromit series (what could be?). A great choice for kids that will amuse the grown-ups in the family, too.

Have you seen any good movies lately?


Sunday, September 13, 2015

Weekly Inspiration: The Bend in the Road

Happy Sunday! I am enjoying a lovely morning out on my back deck - quiet, peaceful, and COOL for the first time since spring - ahhhh! And after two and a half weeks of being badly crashed and flat on my back, I think I am finally feeling a bit better this morning.

Today's inspiration comes from a book that I read and loved this summer. For the first time in my life, I read the childhood classic Anne of Green Gables (my review at link) by H.M. Montgomery and fell in love with exuberant Anne, as generations have before me. Anne is an orphan girl who goes to live with brother and sister Matthew and Marilla who were hoping for a boy to help with their farm. But Anne brings something better than manual labor into their quiet, routine lives - she brings joy.

I wrote down a lot of favorite quotes from the classic novel. Many of my favorites were Anne exclaiming over the natural beauty around her or the joy inherent in life, like these:
"Isn't it a splendid thing that there are mornings?"

"It's been my experience that you can nearly always enjoy things if you can make up your mind firmly that you will."

"I'm so glad I live in a world where there are Octobers." (me, too!)
But toward the end of the novel (don't worry, no spoilers), something very unexpected happens in Anne's joyful life that completely changes the plans she'd made for herself. I could really relate to this passage in the way that chronic illness suddenly changed my own life path, and Anne's determination to make the best of this new, unforeseen life:
"I shall give life here my best, and I believe it will give its best to me in return. When I left [where I was] my future seemed to stretch out before me like a straight road. I thought I could see along it for many a milestone. Now there is a bend in it. I don't know what lies around the bend, but I'm going to believe that the best does. It has a fascination of its own, that bend. I wonder how the road beyond it goes - what there is of green glory and soft, checkered light and shadows - what new landscapes - what new beauties - what curves and hills and valleys further on."

"Anne's horizons had closed in since the night she had sat there after coming home...; but if the path set before her feet was to be narrow she knew that flowers of quiet happiness would bloom along it."

          - Anne of Green Gables by H.M. Montgomery

I especially like that last line.

These passages express how I feel about my life now, 13 years since getting sick (though I can't claim to have had Anne's upbeat attitude at the beginning!). Yes, there's been a bend in the road, but I can still find joys in my life every day. It's a different life than I had foreseen for myself all those years ago, but it has its own set of unique characteristics to be grateful for.

Have you read Anne of Green Gables? How do you feel about Anne's words on accepting change and looking forward? What "flowers of quiet happiness" have you discovered along your own narrowed path of life with chronic illness, beyond the bend in the road?

(By the way, if you are looking for some light, easy reading that is uplifting and joyful, this is a wonderful novel! During my last two weeks very sick, when I was having trouble concentrating, I found that middle-grade novels were the perfect solution.)

Friday, September 11, 2015

New Study: Using Phenylephrine for Orthostatic Intolerance

I am a little behind in reporting this, but a recent study sponsored by the NIH (National Institutes of Health in the U.S.) and the Solve ME/CFS Initiative points to a potential treatment for Orthostatic Intolerance that could help a number of ME/CFS symptoms.

As explained in greater detail in this post, Orthostatic Intolerance (OI) is an umbrella term encompassing Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS), as well as other rarer forms of OI. Previous studies show that about two-thirds of people with ME/CFS have POTS and over 97% have NMH, so OI is something that affects everyone with ME/CFS in one way or another. Bottom line is that our bodies have trouble maintaining a steady heart rate and/or blood pressure when we are upright.

OI results from a number of dysfunctional systems (like many aspects of ME/CFS). Some of the causes behind OI that are common (perhaps even characteristic) in ME/CFS include: low blood volume, endocrine problems - the right neurotransmitters are not released in the right amounts at the right times, and poor vascular control. The end result of this combination of effects is that when we are upright, our heart rates increase and/or our blood pressure decreases and our bodies have trouble properly circulating blood to our hearts and our brains. Instead, the blood often pools in our lower extremities (some people's feet and lower legs turn a purple color after standing for even 10 minutes).

Phenylephrine Improves OI (picture from Health Rising)
This study in particular looked at phenylephrine, a common over-the-counter medication used most often as a mild decongestant (sold as Sudafed PE or as a store brand with PE in it, like Walphed PE at Walgreen's). This is not to be confused with pseudoephedrine (sold as Sudafed) which is a much stronger decongestant. These decongestants work because they are vaso-constrictors - they constrict blood vessels. In the case of treating congestion, they reduce the swelling in the sinus passages by constricting the tiny blood vessels there.

However, they also act as vaso-constrictors throughout the body, not just in the sinuses. In this study, the researchers treated OI with phenylephrine via injection. It had a very positive effect on the patients, improving blood flow to the brain and improving their cognitive function.

This doesn't seem like big news to me because vaso-constrictors have long been used as an effective treatment for OI in ME/CFS. Midodrine is a prescription vaso-constrictor that is frequently prescribed for OI and helps many people. I personally have noticed that when I take pseudoephedrine (aka Sudafed) for allergies or a headache, it improves my OI symptoms. In fact, I sometimes take it for exactly that purpose if I have to go out in the evening, and its vaso-constricting properties do indeed improve my stamina.

What's new here is the use of phenylephrine (PE), which is a milder vasoconstrictor, to treat OI and administering it as an injection. In fact, the researchers said it didn't have the same effects when taken orally. I found that interesting because I actually take phenylephrine (just OTC Sudafed PE) every morning for my allergies, and I do find that it helps my OI a bit, though not as obviously as pseudoephedrine.

Both phenylephrine and pseudoephedrine are available over-the-counter as decongestants, though if you decide to try pseudoephedrine, you should do so under a doctor's supervision - it is a strong enough vaso-constrictor that it can sometimes cause heart palpitations. And I avoid taking either decongestant within 4 hours of bedtime or my nap because they can be stimulating.

In any case, it is good to see some research being done into currently available treatments for OI in ME/CFS. As many of us have discovered, treating OI can lead to dramatic improvements in all ME/CFS symptoms because it underlies so many of our problems. Both of my sons benefited greatly from Florinef, which allowed them both to return to school full-time when they were younger, and my older son and I have both had excellent success with beta blockers for treating OI - they have greatly improved our stamina and ability to be active.

Health Rising published a far more detailed review of this study or you can see the abstract of the actual study or the full report at these links.

What has been your experience with phenylephrine, pseudoephedrine, midodrine, or other OI treatments?

Wednesday, September 09, 2015

Riding the Chronic Illness Roller Coaster

This summer, I began writing articles for the ProHealth website (an excellent source of information on all aspects of our illnesses), for their Inspirational Corner. This article was published on July 25: Riding the Chronic Illness Roller Coaster (reprinted here with their permission):

Riding the Chronic Illness Roller Coaster

The song Helter Skelter (originally by The Beatles) often goes through my mind when I go from feeling fine one day to being badly crashed the next. It resonates with my sense of climbing up only to find myself on a ride back down again. For those of us with ME/CFS and fibromyalgia, life is like a rollercoaster. Not everyone with ME/CFS or fibromyalgia experiences physical ups and downs – some people feel about the same every day – but all of us living with chronic illness deal live with an emotional rollercoaster. Kubler-Ross famously identified five stages of grief: denial, anger, bargaining, depression, acceptance. What many people don’t realize is that these stages don’t occur linearly and aspects that you think you are done with (like anger or depression) can recur over time.

I have found this to be very true in my own life. I certainly experienced all of those stages of grief at the beginning of my illness and even got stuck in depression for a while. For the most part, I feel that I am fully in acceptance mode now, 13 years later. However, once in a while, those other emotions still appear and surprise me.

I am generally a very happy, optimistic person. That’s just my natural temperament, and I am usually content with my life, even with chronic illness. I’ve made peace with my new normal and accept my limitations; I’ve learned to find joy within my restricted life. Every once in a while, though, even after 13 years, despair will just hit me with the force of a tidal wave. I’ll suddenly feel depressed, abandoned, and like a failure. I’ll cry and grieve over all the things I can no longer do. This dark state of mind might last for a day or two and then I gradually come back to my normal happy self – riding the emotional rollercoaster.

I’ve learned over the years that these sudden storms of despair often accompany a physical worsening of symptoms or a crash. That tells me it is tied to the biochemistry in my brain. It helps a bit to understand this, though it is hard to be logical in the midst of that darkness.

So, what helps when I hit bottom? The first key is to recognize that what you are feeling is normal and natural and will eventually pass. This is easier said than done! Those feelings are very real when you are in the midst of them, and it can be hard to remind yourself that you are at the mercy of changing biochemicals. However, reminding myself that these are transient feelings that will pass, just as they have before, can help immensely. I think of it as riding the wave – allowing myself to feel what I am feeling, while acknowledging that it is temporary.

Over the years I have developed some other coping mechanisms when despair hits:
·      Think about/write down what you are grateful for. It helps to remind yourself that things aren’t as black as they seem, that you still have some positive things in your life – family, friends, good books, birds singing outside your window. I wrote previously here about keeping a Joy Journal [LINK?] – writing down each day the little things that brought you joy – and that can help now, too.
·      Reach out to others. These illnesses are isolating anyway and even more so when you are feeling emotionally low. If you have understanding friends or family, tell them you are feeling down. Just sharing those feelings with a loved one can help (make sure it is someone who can be empathetic and not make things worse). You can also share your feelings online with others who you know will understand, in discussion groups or Facebook groups for your illness. For me, that often means writing a blog post, and I am always comforted by the outpouring of support and understanding when I do admit to feeling down.
·      Take care of yourself. Focus on your own needs and do things that you enjoy: read a good book, watch a favorite TV show or movie (a funny one is even better!), take a nap, listen to an audiobook. Do whatever brings you comfort.
·      Be kind to yourself. If you are going through a bad period emotionally (or physically), don’t try to be productive and get things done or push yourself in any way. Indulge in comforting rituals, like a favorite herbal tea, a piece of dark chocolate, staying in bed. Don’t berate yourself for feeling down. Let others take care of you.
·      Help others. It may sound counter-intuitive, but helping other people can be a great way to help yourself. It feels good to be of use or to know that you helped someone. Reach out through your social media networks, chronic illness groups, or to close friends or family. Helping others has been one of the biggest unforeseen benefits of our illnesses in my family.

If none of these kinds of things work or you are stuck in a serious depression that lasts more than a few days, seek professional help. Start with a local referral service or search online. Look for a therapist who has experience with chronic illness (call the office and ask that question before you book an appointment). If you are too sick to leave the house or can’t find anyone locally, look online – there are therapists specializing in chronic illness who will work with you via Skype. In my first few years of chronic illness, I struggled to adjust to my new life of limitations; when my two sons also got sick, I sunk even deeper into despair. I found a wonderful local psychologist (through my husband’s workplace referral service) who had a grown son with ME/CFS. She understood what I was going through and helped me immensely.

Most of all, I have learned to focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. It’s better to focus on small goals, on getting through each day, even each hour, and taking care of myself now. Those black feelings will come sometimes, but I know they will also pass.

Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at and Book By Book at 

Tuesday, September 08, 2015

Movie Monday (Tuesday) 9/8

Well, I missed Monday, so this week it's Movie Tuesday! It's not so much that yesterday was Labor Day but that I've been really, really sick this past week and a half with my semi-annual bout of bronchitis. It's a bad one this time, and I am still feeling awful, but I wanted to write these movie reviews.

When my husband went golfing Friday evening, I used the opportunity to watch a movie that had no suspense, action, thriller or sci fi themes! I chose The Spectacular Now, a high school drama/comedy, for my Sue-only movie night. Miles Teller stars as Sutter, a popular high school boy who is dating a similarly popular girl at school. Sutter is well-liked and affable, always joking around and having fun. When his girlfriend breaks up with him, his normally heavy drinking habit veers into extreme territory. He passes out one night on a random lawn and wakes up to see Aimee, a quiet, smart, kind of geeky girl from his school whom he barely knows, staring down at him. Sutter and Aimee, played wonderfully by Shailene Woodley, start hanging out together and begin to get to know each other. They are very different but both struggle with mothers who won't listen. Sutter and Aimee become closer, but Sutter's drinking and his lack of drive about his future begin to get in the way. I love high school dramas (big Gleek here!), and my husband's not so into them, so I really enjoyed this movie. It has the perfect mix of funny moments mixed with serious issues and very realistic problems, and both young actors were excellent, especially Teller as the fun-loving boy who doesn't know what comes after high school.

Saturday night, my husband and I both watched Kingsman: the Secret Service, a freebie from Redbox (though we forgot to return it for 2 nights, so not so free after all!). Colin Firth plays Harry, an undercover agent in a super-secret private spy organization headed up by Arthur, played by Michael Caine. Harry recruits an unlikely young man nicknamed Eggsy, played by Taron Egerton, to try out for an open position in the Kingsman. Eggsy is often in trouble, but his father saved Harry's life, and Harry thinks he has potential. Eggsy is up against some stiff competition for the position, with many of his fellow recruits coming from wealthy families. Since this is a spy movie, it need a super-villain: Richmond Valentine, a high-tech billionaire played by Samuel L. Jackson. The Kingsman and their recruits are trying to stop Valentine from destroying the world (naturally). Sounds like a classic spy movie set-up, right? And it is, except for the odd tone of the movie. It feels like it can't make up its mind whether it is a serious spy thriller or a funny spoof, so it falls somewhere in between. In many scenes, you don't know whether you are supposed to be taking it seriously or laughing at it; the comedy feels kind of awkward. There is plenty of action, and we enjoyed the spy thriller elements and all-star cast, but its attempts at humor fell a bit flat for us.

With me sick all weekend, we also watched a lot of TV and enjoyed a mini-series from HBO (originally from BBC and available now on Amazon Prime) called 5 Days, which felt more like a movie than a typical TV show. A woman and her two children go missing at the beginning of the first episode, and the 5 episodes cover 5 different days during the 79-day investigation. It's a crime thriller with an excellent British cast that spends as much time with the lost and frantic family of the victims as it does with the main investigators on the police force, going in-depth with both sets of characters. It's a great mix of drama and suspense that kept us guessing right up until the very end. We found it very compelling and easily watched the whole thing over the course of the weekend - we couldn't wait to find out what would happen next!

Have you seen any good movies lately?

Monday, August 31, 2015

Movie Monday 8/31

I was feeling pretty crummy all weekend, so we tried to take it easy and enjoyed a great movie Saturday night:

We watched 12 Monkeys, and we both loved this unique post-apocalyptic time travel thriller. In 1996, a viral pandemic hit that almost wiped out the human race. The people left moved underground to get away from the toxic surface of the earth. When the movie opens, at some point in the future, scientists are trying to find the source of the virus (which they believe to be a terrorist group named the Army of the Twelve Monkeys) so that they can develop a cure that will allow mankind to return to the surface. To do this, they choose "volunteers" from their prison and send them back in time to 1996. Bruce Willis plays James Cole, one such prisoner. The scientists make a mistake, though, and send him back to 1990 instead. There, trying to warn people about the future global disaster, James is seen as a delusional lunatic and locked up in a psychiatric ward. He meets Jeffrey, played wonderfully and hilariously by Brad Pitt, the energetic and intelligent (and totally crazy) son of a prominent virologist, and Dr. Kathryn Railly, one of the doctors in the hospital, who thinks that James looks familiar and is intrigued by his rantings. The action moves forward quickly, as James tries to complete his mission to save the world. It's an intriguing plot, but the real uniqueness of this film is in its tone and cinematography. Though there is plenty of fast-paced thriller-like action, there is a slightly farcical feel to the movie and plenty of laughs (especially from Brad Pitt's performance!). The scenes that take place in the underground future have a distinct steampunk look. It all adds up to an engaging and suspenseful movie that never takes itself too seriously. We both enjoyed it very much.

Have you seen any good movies lately?

Friday, August 28, 2015

Effective Treatments for ME/CFS

This post is long, long overdue. I have been writing this blog for almost 10 years and have often written about treatments for ME/CFS - new research, things we've tried, things that worked for us, and things that didn't. But you'd have to go searching through 9 years of blog posts to find everything relevant (or at least the 88 posts I've tagged under "treatments")!

There is a misconception that there are no effective treatments for ME/CFS, but that is not true - it's just difficult to find a doctor who is knowledgeable about all of them. I can't count how many times people have told me they were diagnosed with CFS and then the doctor said, "There are no treatments - just go home and deal with it as best you can." As with most aspects of this complex immune disorder, patients (or their caregivers) often have to be their own advocates and suggest treatments to their doctors.

So, here, all in one place, is a list of treatments that have helped my sons and I - a set of guidelines for potential treatments to discuss with your doctor and try for yourself. A couple of important notes first:
  1. Everyone is different and different things work for different people - the best approach is to try things and find out for yourself.
  2. That being said, don't just try something and give up if it doesn't work at first - with ME/CFS, all treatments require some trial and error to find exactly what will work for you - it may takes many months and many trials to find just the right combination that will be effective for you. So many times, I hear someone say, "Oh, I tried that - it didn't work for me." Then, I find out they tried just one medication or supplement at just one dose - try, try again!
  3. In the case of medications and supplements, always start with the lowest possible dose - and then cut it in half! Then, you can gradually work up depending on how it affects you. People with ME/CFS tend to over-react to meds and supplements.
  4. Patience and persistence are the keys to success! Don't Give Up!
  5. If nothing seems to work for you, then there are usually underlying infections that need to be diagnosed and treated, and you may not improve at all until you address those (see Diagnose and Treat Underlying infections below).
  6. I am not a doctor! These are just the treatments that have worked for us  - you should work with your own doctor on your own unique case to find what works for you. Don't have a doctor who understands how to treat ME/CFS? Check these databases to find a doctor near you or call local doctors and ask if they treat ME/CFS. You don't necessarily need an expert - just someone willing to learn more and work with you.
With those guidelines in mind, here are the treatments that have helped my sons and I to greatly improve our ability to function, our stamina, our exertion tolerance, and ultimately, our quality of life. These are not necessarily in order (though going down the list works) - ME/CFS specialists often focus on treating those symptoms or aspects of the illness which are causing the most problems first. Remember - everyone is different!

Correct Sleep Dysfunction
When I first found my primary care doctor and she diagnosed me with ME/CFS (after a year of living with a mystery illness), she said, "The first thing to do is to fix your sleep - that will improve ALL of your symptoms." She was right - with the characteristic sleep dysfunction of ME/CFS, you don't get the deep stages of sleep that you need to recharge your body and keep it running well. Without good sleep, everything gradually gets worse in an ever-increasing downward spiral. In contrast, when you get solid, refreshing sleep, everything is better and you stop that steady decline. I'm not talking about sedatives to knock you out but medications that actually correct the underlying cause of our sleep dysfunction. My son and I have had deep, natural, refreshing sleep almost every night for the past 11 years. Read more about how this works and the details of our own experiences in this post on Correcting Sleep Dysfunction.

Treat Orthostatic Intolerance
Studies show that over 97% of those with ME/CFS have some form of Orthostatic Intolerance (OI), as do about 75% of those with fibromyalgia. Other terms under the OI umbrella include POTS (Postural Orthopedic Tachycardia Syndrome), Orthostatic Hypotension, and Neurally Mediated Hypotension (NMH). OI is such an integral part of ME/CFS that it was included in the new diagnostic criteria created earlier this year by IOM. Basically, OI means that our bodies can't hold a steady blood pressure and/or heart rate when we are upright, especially when we stand but also just sitting up. OI contributes to all of the symptoms of ME/CFS: fatigue, headaches, achiness, pain, sleep dysfunction, exertion intolerance and more. The good news is that treating OI often results in dramatic improvement in all symptoms! This post explains what OI is, how it affects us, and some treatment options, including my sons' experiences with Florinef, a treatment that allowed them both to return to school full-time. This post is specifically about using beta blockers to treat OI, a treatment that has dramatically improved life for my older son and I, allowing us both to be much more active without crashing. As I said in the introduction, trial and error is critical here - there are over three dozen different types of beta blockers on the market, available in a wide range of doses - it often takes trying several at different doses (always starting with the lowest possible) to find the one that is best for you. Beta blockers have been particularly helpful to me in conjunction with using a heart rate monitor.

Treat Immune System Dysfunction
Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. The problem is that there aren't a lot of known ways to do this yet. ME/CFS is a mixed bag of immune dysfunction: parts of our immune systems are over-active and other parts are under-active. So the treatments typically used for autoimmune disease or for immune deficiencies don't usually work for us. We need to avoid both immune boosters and immune suppressors; instead we need to normalize or balance the immune system. Two simple and very inexpensive treatments have worked well for my son and I: low-dose naltrexone and Imunovir (generic name, inosine, sold as a supplement). Together, these two treatments (again, super cheap!) have dramatically improved our symptoms and quality of life. We have very few crashes anymore, and virally-induced crashes have almost disappeared completely. I almost never get sore throats or flu-like aches anymore, unless an infection is present.

Diagnose and Treat Underlying Infections
For many people, this aspect of treatment might need to come first, not last, especially if you have tried some of the above treatments and nothing seems to help you. Because our immune systems are dysfunctional and various infections are usually the triggers that start ME/CFS, almost all of us have some infections present that prevent us from improving. It is known that ME/CFS causes old, dormant viruses to reactivate, so it is very, very common for people with ME/CFS to have active viruses in our bloodstreams. One example is the Epstein-Barr Virus (EBV), the virus that causes mono (also known as glandular fever). By adulthood, over 95% of the population have been exposed to EBV, whether they had an active case of mono or not - it is a very common infectious agent. In most people, it is dormant and causes no symptoms, but since our immune system over-reacts to viruses, it is often reactivated in us, causing all sorts of problems, including sore throats, swollen glands, flu-like aches, and severe fatigue. There are many other viruses that can trigger ME/CFS to start or get reactivated by the immune dysfunction. The good news is that antivirals can help tremendously, sometimes even bringing on full recovery! The tricky part is that antivirals are very specific to the virus (unlike antibiotics), so the first step is getting tested for all sorts of common viruses (some to look for include EBV, HHV-6, CMV, and common types of enteroviruses) and then the doctor can choose the antivirals that work against your specific virus(es). Here's a summary of my own experience with antivirals - in my case, I had only low levels of EBV and HHV-6, so my improvement was correspondingly small. Typically, the higher the viral levels, the greater potential for improvement. If you know which infection triggered your ME/CFS to start (for instance, mono), then treating THAT infection can be particularly effective and even bring on full recovery - time is of the essence - the sooner, the better!

Another category of infectious agents that you should be evaluated for are tick infections. Lyme disease is a known trigger for ME/CFS, and I have met hundreds of people diagnosed with ME/CFS who turned out to have tick infections behind the scene, including my own son! He got steadily worse for 5 years before we finally found out that he had Lyme disease plus two other tick infections. He has been improving with treatment for those and is currently in college, working at his first part-time job, and enjoying a very active social life! If you have been tested for Lyme in the past and had a negative result, that means nothing. The tests only catch about 50-60% of Lyme cases and are very prone to false negatives. The only way to know for sure if you have tick infections is to be fully evaluated by a Lyme expert. This post explains why everyone with ME/CFS or FM should be evaluated for tick infections and includes a link for finding a Lyme expert near you.

Finally, my son and I have both struggled with yeast "infections" or overgrowth, and I am always amazed by just how much worse it makes us feel! Because of the particular type of immune dysfunction in ME/CFS, yeast overgrowth/candida/thrush is very, very common and can go undetected for years, while you gradually get worse and worse. This post explains how to diagnose yeast overgrowth and treatments that have helped us. Untreated, I feel exhausted and achy and can barely get off the couch (even with all these other treatments that have helped me); when the yeast overgrowth is treated and under control, I live a full, active life. The difference shocks me every time!

Treat Methylation
This is an area of treatment that we just learned about last year, but it has definitely helped us both. Methylation is almost always dysfunctional in people with ME/CFS and directly affects GI function, energy production, and mitochondrial function. This blog post explains what methylation is, with links to how to treat it.

Well, that was longer than I intended but provides a good roadmap to treating ME/CFS with currently available approaches. It can also help you to find the most critical blog posts I have written on treatment options, instead of wading through 9 years' of posts!

This just represents our own experiences - please share your own treatment successes in the comments section! What has worked for you?

Monday, August 24, 2015

Movie Monday 8/24

I was really in the mood for movies this week, so we watched two of them on Amazon Prime this weekend and enjoyed both.

I've been wanting to see The Way, which was a special project for Martin Sheen and his son, Emilio Estevez (who looks so much like his dad now!) They both star in it, and Emilio wrote and directed it. It's about a journey hiking along the Camino de Santiago, a pilgrimage route that cuts across northern Spain, starting in the Pryenees along the French border. One of my closest friends hiked the route for three weeks this spring, which is why I was so interested to see this movie (though I wanted to see the film even before she walked it). Martin Sheen plays Tom, a California ophthalmologist whose son dies while on the Camino. When Tom travels to France to collect his body, he impulsively decides to finish his son's quest to walk the Camino. Grieving and surly, he sets out on the walk, barely talking to the other pilgrims around him, stopping at hostels in tiny villages along the way. Gradually, though, he gets to know several other hikers, each with his or her own reason for walking the route: Joost, a jovial bear of a man from the Netherlands; Sarah, a Canadian woman with a hard. sarcastic edge; and Jack, an Irish writer with writer's block. Together, the four unlikely companions travel along the Camino and gradually get to know each other and become friends, as each works on his or her own internal demons. I loved this movie - yes, the scenery along the Camino is stunning, as I expected, but it is also a moving, funny, warm story about personal journeys and emotional growth. Very uplifting, though it did induce a hefty dose of Exercise Envy in me! I so wish I could backpack again or join my friend on the Camino myself.

Saturday, we chose a twisty, fast-paced crime caper with an all-star cast, Lucky Number Slevin. Josh Hartnett plays Slevin, a young man from Chicago visiting his friend, Nick, in New York City. Slevin is mugged on his way in and loses his wallet and then finds Nick's apartment empty. Next-door neighbor Lindsay (played by Lucy Lui) stops by and says she is worried about Nick because she hasn't seen him and she wants Slevin to join her as amateur detectives (she likes to watch old Columbo shows) to find their mutual friend. Before they can start investigating, though, a couple of thugs come by and pick up Slevin. They take him to The Boss, played by Morgan Freeman. Everyone thinks Slevin is Nick, who seems to owe The Boss a lot of money, and he can't prove otherwise without his wallet. A hit man named Mr. Goodkat, played by Bruce Willis, joins the fun...and that's just the beginning. The plot is complicated and twisting, though the tone remains somewhat light and tongue-in-cheek throughout. It starts to feel like a modern version of The Sting, though it takes a while to sort out just what the deal is and who's behind it (and why). It's all a lot of fun, the acting is great, and we didn't figure out all the twists and turns until the very end.

Have you seen any good movies lately?

Sunday, August 23, 2015

Weekly Inspiration: 10 Minutes of Mindfulness

You might think that people with ME/CFS don't need help with doing nothing. It sometimes feels - especially when we are going through a bad flare-up - that we are always doing nothing, getting nothing accomplished. But are you really doing nothing? Is your mind ever truly still and quiet?

In this brief TED talk, monk and mindfulness expert Andy Puddicombe talks about taking 10 minutes out of your day to be still and mindful, to meditate and quiet your mind. He says taking even this small amount of time out of each day to be still can change your life:

I chose this talk today because being still and mindful is a huge weakness of mine. Even when my body needs to rest, my mind is almost always in full gear, speeding along at a hundred miles an hour: "I need to do this," "Better not forget that," "Oh, I have to remember that," etc. I tend to be very focused on being productive - being still is my Kryptonite!

Over the past 10 years or so, I have gotten very good at setting goals for myself - measurable, objective goals - and at meeting them (here are my health-related goals for 2013 and 2015). I've actually accomplished a lot of my goals...except for one. I always do dismally on my goal (on the list every year!) to spend at least 10 minutes a day meditating. I get so busy (in mind and sometimes body, too) that the day passes, and I never make time to just be still. When I do meditate, it is usually as a crutch to help myself fall asleep.

I suspect it is the same for many of us. Even on a crash day, when I need to rest, I am still usually reading or watching TV or (often) using my laptop while lying on the couch. Even worse, I am often trying to do several things at once. I know (though I have a hard time admitting it) that's not really resting. I do take time every afternoon to take a nap (bonus points for that?), but meditation is beneficial in addition to sleep.

So, how exactly do you take this advice to spend 10 minutes meditating or being mindful? I actually learned Transcendental Meditation (TM) when I was 16 years old (so I have no excuse!). My parents had both learned and so I did, too. If you've never learned before, here are some resources:
If you are struggling to relax when you try to meditate or can't seem to quiet your mind, you might want to start with some Guided Meditations - just look up "guided meditation" on a search engine and plenty of free audio/video options will come up.

As for me, I am going to take another stab at that goal of mine to meditate 10 minutes a day (and stop counting my nap as "meditation"!) I know how beneficial it is, and I know how much I need to learn to quiet my brain, so I will try again.

Please tell me about your experiences with meditation - or go and try it and report back!

Friday, August 21, 2015

Finding Joy in Every Day

This summer, I began writing articles for the ProHealth website (an excellent source of information on all aspects of our illnesses), for their Inspirational Corner. This was my first article for them, and it was published on July 6, 2015: Finding Joy in Every Day (reprinted here with their permission):

Finding Joy in Every Day

Life with chronic illness is always challenging, but I have discovered some silver linings since I got sick with ME/CFS 13 years ago and my sons followed suit 2 years later. Although I've always been an upbeat person, ME/CFS has made me more acutely aware of how important it is to find joys in my everyday life, even when things seem bleak. I’m not always able to do the big things that used to bring me joy – like vacations, long hikes, backpacking, or lots of socializing – but I have learned that ordinary life holds many extraordinary moments of small joys.

During a particularly difficult period in my early years of illness, I began keeping a Joy Journal (I picked a journal covered in polka dots which was, in itself joyful!). At the end of each day, I jotted down things that had brought me joy that day. Sometimes, after a bad day, I had to really think hard to come up with things to write in it, but I began to realize that there were plenty of good things and small joys in my daily life, despite the boys and I being so sick.
Many of the things I wrote about were simple - singing a favorite song in the car with the top down, seeing a bright splash of colorful flowers in spring, or playing a game with my kids. I gradually began to recognize these small moments of joy. Some excerpts from my Joy Journal during those early days included:
·      Cuddling with my son’s soft little stuffed dog, Snowy, and being reminded of his love and generosity in lending him to me
·      The air smells so deliciously sweet this morning – fresh, warm, springtime air
·      Watching old home movies of the boys when they were so young. My heart fills with joy when I see my 2-year old in his lion costume calling out, “Twick or tweet! I’m a lion!”
·      My morning cup of Orange-Tangerine Zinger tea
·      Sunshine!
·      Listening to music – the rhythms and harmonies of Ladysmith Black Mambazo
·      Seeing a shooting star!
·      A roaring fire in the fireplace on a cold, wet, gray day
·      Watching a movie with my husband and kids in the family room
·      Being outdoors
·      The bright, eye-popping yellow of forsythia in bloom – it’s literally breath-taking! I feel happy just looking at that bright splash of color.
·      Eating – and really savoring – good food with a variety of flavors, made with fresh ingredients, like the crab cakes soaked in lemon I had for dinner.
·      Lying in my warm, comfy bed at night reading a good book.

As you can see, none of these things I wrote down were all that unusual – they were tiny moments of joy in a very ordinary, quite limited life spent mostly at home. At the beginning of my illness, when I was struggling with depression and acceptance of my new life, these moments of joy were still there, but I wasn’t noticing them. Writing in the Joy Journal each night helped me to recognize that these ordinary joys were still there, and that my life was indeed still joyful and happy in many ways.

Once I recognized joy, I was also able to make sure I had more joyful moments in my every day life. I noticed in my journal that being outdoors always lifted my spirits, so I made a special effort to get out at least once a day, even if that just meant lying in a reclining chair out on my deck and looking at the clouds. My kids were often a source of joy, so I tried to give them my full attention more often – to focus on watching a video or playing a game with them, instead of always being distracted by things I needed to get done. I made myself a Feel Good playlist so that I could listen to music that lifted my spirits when I was having a bad day (just try staying in a bad mood while belting out “I Will Survive” by Gloria Gaynor or “Happy” by Pharrell Williams).

I don't write in the journal every day anymore, but it's still there to remind me of the joy that is all around me. When I have a rough day or things get bad, I read past entries and resume my habit of writing down joys at the end of the day, and it always helps to lift my spirits.

Recognizing the joys in my life helped me to experience more of them. It’s a self-perpetuating thing – the more you acknowledge the joys in your life, the more joy you have. Take a look at your own life. Keep a Joy Journal or a diary of what you are grateful for so that you can learn to recognize what makes you happy. Every life – even a restricted life of chronic illness – contains many small moments of joy. Identify those moments of joy and celebrate them every day.

Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at and Book By Book at  You can read all of her blog posts on Joy at