Tuesday, May 26, 2015

Depression in ME/CFS - Emotional or Physical?

Image: jeffreymasson.wordpress.com
Despite the lovely holiday weekend I spent relaxing with my husband, I felt worse and worse as the weekend went on. By Monday, I was a total mess - feeling horribly depressed, crying at the drop of a hat, drowning in feelings of frustration, failure, and abandonment.

This happens to me once in a while - fairly rarely, thank goodness. As I explained in an old blog post, A Life of Contentment with Pockets of Despair, 9 years ago (!), I am generally a very happy, upbeat person. It's not an act or an attempt to "think positive" -  I really do feel happy most of the time and am generally very content with my life. I work hard, I love my family and friends, and I do my best to enjoy life, in spite of this nasty illness.

But sometimes, like this weekend and the bout of depression I wrote about in that old post, despair just hits me like a wave and knocks me down. I wonder how much of it is emotional and how much is physiological. I've noticed before that depression sometimes precedes a bad crash (hasn't happened in a while, thank goodness). This weekend, I took a long (for me) walk with my husband on Sunday morning and was in bad shape emotionally the next day. Could it have been "just" a part of a post-exertional crash? I think that would be even more depressing!

Emotionally, I am feeling overwhelmed and several things seemed to converge at once last week: our finances are super-tight (again) due mostly to our high medical expenses and college bills are growing; our extended family wants to go on an expensive vacation - a "free" trip that will end up costing us more than we can afford; my husband and I planned a solo vacation week for July because our sons no longer want to go on vacation with us - this new development has caused us both great pain; an article I wrote for a website was accepted for publication...and then they told me they no longer pay writers (also feeds into the financial pressures, of course, because I feel so guilty about not being able to contribute to our income); and, as always, ME/CFS is the ever-present storm cloud, affecting every moment of every day.

Most of the time, I am happy and content with the life I have created from this illness and I certainly recognize how fortunate I have been (though it's not just luck - it's taken a lot of hard work) to find treatments that have helped me to feel better and be more active. Sometimes, though, living in a prison of restrictions and limits gets to me. I just want to be able to enjoy a glass of wine with my husband, have a dessert when we go out to dinner, hike for as long as I want without constantly watching both the clock and my heart rate monitor. I feel like a ticking time bomb when I am out. My life is made up of a tightly monitored routine, with restrictions everywhere I turn: don't eat that, don't drink that, rest now, watch your heart rate, etc. I recognize intellectually that it is those very limits that allow me to live more freely than many people with ME/CFS - I feel better because I am so disciplined about sticking with my routine and my restrictions. But some days, I just want to throw it all out the window and be free!

Well, I feel a little better just having someone to talk to (assuming anyone is reading this!). I am just slightly better today - haven't cried yet this morning, anyway (oh shoot - never mind that last part).

I would love to hear from all of you - do you experience these sudden bouts of depression after periods of coping well? Does it seem to be linked with a physical crash for you? How do you maintain a healthy state of mind in the face of a life filled with restrictions?

I know I am usually the one feeling happy and cheerful and encouraging others to find the joy in life...but right now, I could really use some help myself.



Sunday, May 24, 2015

Weekly Inspiration 4/24

Ah, I am way overdue for some inspiration, both here on the blog and in my own life! These past few weeks, I have been wrapped up in just getting through each hectic day. So, I wanted to get back to my Weekly Inspiration feature.

Fittingly, this week I chose a TED Talk about happiness and smiling!

Ron Gutman gives this brief but inspiring talk on the research behind a simple smile - that smiling can lengthen your life and predict future success, for instance. Check it out:



I bet you smiled all the way through the presentation, didn't you? I did! That's another thing he talks about - how smiling is contagious. And best of all? Smiling is something we can all do that doesn't cost a thing and that even the sickest person can manage.

All of this bodes well for me - I am a very smiley person (as you could probably tell from my writing and my frequent use of exclamation points! I'm trying to cut down.) The smallest things can make me smile - flowers blooming out my window, a bright blue sky or interesting-looking clouds above my deck, even a vibrant shade of nail polish (I am currently wearing Not a Cloud in the Sky).

Now, I need to go check out my old yearbook, like Gutman describes in that research, to see who turned out successful and happy!

Hope you are enjoying this lovely holiday weekend. Find something to smile about today.

Bright nail color makes me smile, as do blue skies!

Friday, May 22, 2015

Double Your Donation - One More Week Only!





I meant to write this post over a week ago, but I've had my hands full here. This time of year is always extra-busy when you have kids, but with a high school junior in the household, it's even busier, with SATs, ACTs, prom, etc. This week, we had his Junior Ring Ceremony and he went on a class trip to Six Flags. I'm looking forward to a quiet holiday weekend!


Anyway, to the point...

Until May 30, an anonymous donor has offered to match donations made to the Solve ME/CFS Initiative, a very worthwhile charity that puts almost all of its contributions directly toward research through its Research Institute Without Walls. They've sponsored some excellent research studies in the past and have helped to move the state of knowledge of ME/CFS forward, bringing us closer to effective treatments and hopefully, a cure.

So, take a moment to make a donation to SMCI before May 30, and it will automatically double!

Give what you can and then relax and enjoy the holiday weekend.

Monday, May 18, 2015

Movie Monday 5/18

It was a big week for movies for me - I saw three excellent movies last week:

My husband took his dad to Atlantic City for his 90th birthday, so I chose a movie billed as "quirky," which my husband doesn't always appreciate! I watched Hector and the Search for Happiness and absolutely loved the feel-good movie! Based on a book that was an international best-seller (and that I now want to read), this movie is about a very average man named Hector, played by Simon Pegg, who lives in England and works as a psychiatrist. Hector is depressed because he realizes he's not happy, and if he doesn't know how to be happy, then how can he help his patients to find happiness? He decides to take an open-ended trip, leaving his long-time girlfriend - played by Rosamund Pike - at home while he goes in search of the secret to happiness. Everywhere he travels, he takes notes and draws sketches, asking everyone he meets what makes them happy. As Hector travels from Shanghai to Tibet through Africa and to Los Angeles, he encounters all kinds of people and learns many varied lessons about happiness which he dutifully writes and draws in his notebook. He encounters a wealthy businessman, Tibetan monks, African crime lords, and even his college girlfriend. Along the way, Hector gets all the excitement he was seeking (and more) - some of it wonderful and some of it terrifying. And, as you might expect, he learns the truth about happiness. I loved this warm, funny, uplifting movie with a great sense of optimism and fun.

My son had oral surgery on Friday, so I got a movie I thought he might enjoy: St. Vincent, starring Bill Murray (whom my son has enjoyed in many other movies). Our son's girlfriend arrived soon after, though, and he immediately ditched us, but my husband and I thoroughly enjoyed this comedy drama. Murray plays Vincent, a classic grumpy old man who lives in a run-down house, drinks through his days, and gambles away most of his money. Melissa McCarthy plays Maggie, his new neighbor and a single mother. Desperate for after-school care, she agrees to let Vincent babysit her 12-year old son, Oliver. You can imagine what happens next, as Vincent takes Oliver along to the track, teaches him to gamble, and hangs out in his favorite bar with him. This movie - and Vincent - are full of surprises, though, and there turns out to be a lot more to Vincent than meets the eye. Naomi Watts co-stars as Daka, a pregnant Russian prostitute. There are plenty of laughs in the film but also heart-warming moments, especially toward the end - yes, I even cried! This is another feel-good movie that we both enjoyed very much.

Saturday night, with my son and his girlfriend watching old movies in the basement, my husband and I rented Unbroken, a movie we've both been wanting to see since we both read - and loved - the best-selling book by ME/CFS patient (and acclaimed author) Laura Hillenbrand. Unbroken tells the story of Louis Zamperini, played by Jack O'Connell, an Olympic runner who goes to war. His plane is shot down, and he and some of his shipmates survive more than a month lost at sea, only to be "rescued" by the Japanese and sent to a POW camp led by a cruel and sadistic man. You know from the title that Louis survives, but it is the what and how that make this such a remarkable story. In addition to Hillenbrand's incredible book as base material, the Coen brothers wrote the screenplay, and Angelina Jolie directed the film. All that talent shows - it is a moving, powerful movie about overcoming impossible odds. Caution: as you might imagine from the subject matter, there are some very violent and difficult scenes in this film, though it is ultimately uplifting and about the power of the human spirit to overcome, survive, and thrive.

So, we had a great movie week - have you seen any good movies lately?

(And if you like to read, check out what we're reading this week at my book blog).

Saturday, May 16, 2015

Post-Exertional Malaise Survey

Before
Dr. Leonard Jason of DePaul University, a longtime ME/CFS advocate and researcher, is conducting a study on Post-Exertional Malaise using an online survey that anyone with ME/CFS can participate in.

The aim of the survey is not only to characterize what post-exertional malaise is and how it affects patients but also to determine what words and phrases best describe it.

I took the survey this morning, and it took me about 20-30 minutes to complete it, so set aside a bit of time before you start. It is mostly multiple choice with a few short answer parts where you can use your own words to describe exertion intolerance, how it affects you, and how to explain it to others.

This is a great opportunity to help move ME/CFS research forward without leaving your bed or couch! So, click the link above and do your part today. The better that researchers understand and can describe post-exertional malaise (there HAS to be a better term than that!), the closer they will get to figuring out how to treat or even cure it.

After

Tuesday, May 12, 2015

Today is International ME/CFS Awareness Day

It's International ME/CFS Awareness Day!

Looking for ways to help spread the word? Here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"I don't normally say much here about our illnesses, but today is International ME/CFS Awareness Day. ME is Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the cringe-worthy name the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and my sons have had it since 2004, though one is now recovered after 10 years of mild illness. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. We have had some success with treatments, though we take piles of pills every day and our lives are still dramatically different than they were before ME/CFS. We are the lucky ones; many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

I also plan to post other Awareness Day posts today - the Solve ME/CFS Initiative has lots of them to share, from the past week or so. Like my Facebook Page for this blog to see what I post today so you can share to your own wall.

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. My own article, CFS: An Invisible Illness, published on Lively Woman (now BlissTree)
  5. Our public testimony on pediatric CFS at last year's 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)

Monday, May 11, 2015

Movie Monday 5/11

Rough week for us here. My Dad has been battling stage 4 melanoma for the past year and has been pretty stable with his treatments (both chemo and immunotherapy), but last week, he started to have balance problems. An MRI showed multiple lesions in his brain - the news I have been dreading all this past year. They started radiation therapy immediately, and he may need surgery to remove the largest tumor.

When we found out, we changed our weekend plans to spend Mother's Day weekend with my mom and (with her blessing) instead drove to Rochester, NY, to spend the weekend with my Dad and his wife. He was feeling OK this weekend, other than being very tired (they have him on steroids which are disrupting his sleep), and we thoroughly enjoyed our time together.

We watched some old home movies - so much fun! - and also rented a DVD Saturday evening:

We watched Predestination, a twisty-turny sci fi suspense movie starring Ethan Hawke. Hawke plays a Temporal Agent, part of a secret government agency that uses time travel to prevent horrific crimes from occurring. His current project/obsession is a bomber from the 1970's who destroyed many lives, culminating in a huge explosion in 1975 that leveled city blocks and killed over 10,000 people - that's what Hawke's character wants to prevent. I don't want to say anymore about the plot because this movie is full of surprises! I wasn't even sure if I should mention the time travel element because that surprised me, but my son says it was obvious from one of the very first scenes (I can be a little slow!) and I see that even the briefest movie descriptions online mention that. This movie will leave your brain spinning with each new development, with an ending that makes you say, "Wait a minute. What?" But in a good way. We all really enjoyed it. It's a clever, suspenseful movie filled with the kinds of paradoxes that make me love time travel stories.

Have you seen any good movies lately?

Tuesday, May 05, 2015

What the Rest of the World Sees

I've written often lately about the improvements I've made over the past few years and how much more I am able to do now. One aspect of this illness has gotten worse, though, as I've felt better overall: the invisibility of my illness. The more I am able to be out and about "in the real world," the less that others around me understand how much I struggle. And true, I do feel better than I used to, but other people just don't understand that that is only part of the story and that I am still very ill overall.

My closest friends are wonderfully understanding - I am blessed with such compassionate, kind friends. They know first-hand that I have to stop often when we take walks to wait for my heart rate to come down or that I often have to say no or even cancel plans at the last minute when I really want to go. And, of course, my husband understands because he lives with me. With increased stamina, I am even more likely than before to push too hard or do too much - he's usually the one warning me to listen to my body and slow down!

The rest of the world, though - acquaintances, friends that don't spend as much time with me, and certain extended family members - see someone who looks vibrant and energetic when they see me. They think that my restrictions are self-imposed, that I'm exaggerating my illness, sometimes even that I am looking for attention. Nothing could be further from the truth. I would give anything to live a free and active life again - to eat whatever I want, to have a glass of wine or a beer once in a while, to exercise intensely and do all the things I am longing to do.

Because I am a generally happy person, usually smiling and cheery, and can now be out and about more, most people have no idea that every single moment of every single day is a struggle, that I have to be constantly vigilant about what I am doing, eating, and how I am feeling. Some think (I know because they have said so) that I "focus too much on my illness." They just don't understand that to ignore my limits for even a brief period of time is to sentence myself to worsening symptoms and a crash. That constant mental monitoring is exhausting in itself! I would love to be free of it.

One family member is clearly resentful of all the times in the past we have had to cancel plans at the last minute. They don't understand that if we cancel something we have been looking forward to, it's not on a whim or because it's too much trouble - it means that at least one of us is literally unable to get up off the couch, that we are incapable of traveling.

It's even worse with our son. Now that he is in college, living in his own apartment with friends, and even has a part-time job (a new victory!), people look at him and think he is fine. They don't realize that those 3 classes he takes each semester use up every last bit of his energy, that he struggles every day to keep up with his friends. They may see him do active things because he yearns to be "normal," but they don't see the days afterward that he is crashed, lying on the couch staring blankly at the TV, unable to get up. They don't realize the anguish he feels in not being like everyone else, the worry over being able to keep up, the deep distress over not being understood by even his closest friends. Like me, he has a positive, happy disposition, so people assume he feels fine.

I don't mean to dwell on the negative. I am blessed in many ways and am very, very grateful for the gains I have made these last few years. Sometimes, though, it is frustrating and demoralizing to be constantly misunderstood. It is a paradox. If I cover up my struggles and act like everything is fine, then people underestimate my illness and its effects and perhaps even think I am exaggerating it. On the other hand, if I am too open and honest about my struggles and limitations, then people think I focus too much on illness or they pity me. It's a fine line to walk. I am just grateful that there are some people close to me who know what my life is really like.

What are your experiences with what people see versus the reality of your life?

Monday, May 04, 2015

Back From My Trip - Victorious!


Northshire Bookstore - Manchester, VT
I am back from my 4-day trip to Vermont, victorious! I had a wonderful weekend and managed my ME/CFS successfully - I feel like I have returned from battle!

I was worried about the weekend but spent a lot of time preparing for the trip (see my pre-trip post) and I had high expectations for this event that I have been dreaming about attending for years.

My expectations were exceeded! It was an amazing weekend. There were 80 book loving attendees, 8 authors who hung out with us all weekend, the two hosts, and an incredible bookstore, all in a picturesque New England town (Manchester, VT). For an avid reader/book lover like me, this was total nirvana! Booktopia was an apt name.

My mom and I
As for managing with ME/CFS, it did indeed feel like a marathon to me, but a really fun marathon. I stuck to my routine, making sure to get regular meals and taking my afternoon nap, even when it meant missing out on things I wanted to do. All that preparation definitely helped. My mother was a wonderful traveling companion - she was considerate of my needs, supportive, and a lot of fun, too. In fact, I think this weekend trip was really great for us, healing some rifts from recent conflicts and bringing us closer together by sharing something that we both enjoyed.

Some of our new friends!
One of the best parts of the weekend was meeting so many wonderful people who love books as much as I do. For someone who normally lives a very restricted life with a lot of time spent at home, it was hugely energizing to be out among people and socializing. I am a very social person by nature and sometimes the solitude and isolation of life with a chronic illness feels a bit constrictive (even as I yearn for and cherish that quiet solitude because I need it so much). In particular, we really hit it off with two other women - best friends - who'd come to the event together and found we had a lot in common. What a thrill to make new friends after living so cautiously for so many years!

Although I was exhausted by the end of each day, the hardest part was the driving. Each segment of the trip (from my house to my mom's and then to VT and then the return) was 3 1/2 hours long, which is pretty much the outer limit of my stamina for driving on my own (my mom helped with the CT/VT legs). Sunday was especially hard, since I did it all in one day, with a nap in between the two parts at my mom's house. I was so glad to arrive home last night and lie down on "my" couch!!

Interestingly, the whole thing was very over-stimulating for me. I am still totally wired - couldn't even nap properly this afternoon. My husband suggested I take a half an Ambien at bedtime last night because we were reading in bed (or trying to) and I just kept chattering to him! He knows that just going to my neighborhood book group for 2 hours can over-stimulate me, and this was 4 days' worth of social activity! My head is still just spinning from all the great conversations, interactions with authors, and activity.

So, all in all, it was a big success. I was exhausted at times, but I never developed more serious symptoms (like sore throat or flu-like aches) or crashed completely. It will probably take me a few days to fully recover and come down from my high, but it was so much fun!

I never could have managed something like this five years ago (you can see some of the treatments that have helped me improve in my 2011 and 2014 summaries).

Have you ever managed to get through a special event since becoming ill?

Me and author Cristina Henriquez

Wednesday, April 29, 2015

Preparing for a Trip

I am leaving tomorrow on a 4-day trip, and I have been awash in preparations for it all week. I've written here before about air travel with ME/CFS and how I manage that, but this is (or should be) much simpler - I'm driving. Still, though, in order for me to successfully manage this short weekend trip, I have to spend a lot of time preparing for it. I feel like a military leader about to go into battle!

For starters, it's just a 2-day event, but I needed to spread it out over 4 days in order to allow for plenty of downtime on the way there and back. And I have the option to give myself a 5th day, if I'm not well enough to finish the drive home on Sunday. I'm going to a Booktopia, 2-day book event in Manchester, VT, for book lovers and readers. I've wanted to go to this for years but never thought I could manage it. When I heard this would be the last year for the event, I decided to give it a try and asked my mom to join me.

Manchester is about 7 hours from my home, so I am breaking the trip into two segments (and getting some help). Tomorrow, I'll drive the first half to my mom's house in CT. I need to leave in the morning because morning is my higher-energy time, so when I arrive at her house at about 1 pm, I will take my usual afternoon nap. She and I plan to go out to dinner together, and then I will go to bed early.

First thing Friday morning, we will drive together the rest of the way to VT. Check-in for the event is between 12 and 1 pm, so we'll need to hit the road early. That means I need to get up extra early so that I have time to make my usual veggies & eggs for breakfast - otherwise, I won't have the energy to manage the long trip. Once we get there and check in, my mom will jump right into some of the fun events planned, while I will go back to our inn and take a nap.

From there, I am hoping the 2 days spent in VT will be manageable for me. I do have to skip the scheduled activities in the afternoon (which means missing the author I most wanted to see) so that I can take my nap - I just can't make it through the day without that. But I am planning to participate in the morning and evening activities. Thankfully, things wrap up by 9 pm each night. It will be something like a marathon for me, but I should be able to handle it.

The other aspect that I am concerned about and planning for is food and meals. I eat a Paleo diet - because I am intolerant to some foods, other foods feed my yeast overgrowth and make me sicker, and I feel better if I stick to the diet. For an activity-packed weekend like this, I need all the help I can get! In addition, like many people with ME/CFS, I have low blood sugar, so I am always worried about where my next meal will come from! My husband teases me for carrying food with me everywhere, but it's necessary. I will be packing a snack bag today, with foods that I can eat that won't upset my stomach or make me feel worse. I have been studying the event schedule to see how I can fit in 3 full meals each day in between activities!

To make matters more complicated, I will need to eat dinner at 5 pm before the evening session rather than wait until 8 or 9 pm when most others will be eating and will need to eat a full breakfast in the morning when I first get up. No food = no fuel = collapse. Not much choice in the matter.

So, I have lists all over the place - to-do lists, packing lists, food lists. I have plotted out my driving time and my meals in great detail. I have printed maps, instructions, event information, and searched for local restaurants. I am trying to take it easy today - no walks despite the nice weather! - to conserve my energy for tomorrow. I will load the car with my water bottle, Paleo snacks, pillow, all my meds, and extra meds just in case. I have planned everything that I can plan, and by tomorrow morning, I will need to just cross my fingers and hope for the best - wish me luck!

What helps you when traveling?


Monday, April 27, 2015

Movie Monday 4/27

Another great movie week for me! I watched a documentary, a top movie in the theater (!), and an excellent movie on DVD, too:

I have been wanting to watch more documentaries, and I finally started last week. I always hear about great documentaries, so I decided to include some in my lunchtime viewing. My first one was Without a Home, an award-winning documentary about homelessness. Young director Rachel Fleisher shot the film over a four-year period in Los Angeles. She drives around the city and finds six different homeless people/families to profile. There are two addicts (one who manages to get clean and one who fails), a family all living in a tiny room, a young woman who is mentally handicapped due to childhood abuse, and others. Rachel chose a variety of people in a variety of situations, which gives you a broad idea of the scope of the problem, the different reasons someone might become homeless, and the barriers to getting back on their feet. In the process, she becomes a part of the story herself, as she gets involved in their lives and does what she can to help. It was an enlightening and very moving film, and I cried both tears of happiness and sorrow. Ultimately, Rachel shows what it is like to be homeless, how challenging it can be to dig out of that situation, and the deep and complex issues that contribute to the problem.

I have been dying to see the movie Wild ever since it was released because I loved the powerful memoir (book review here) it was based on. When I saw it listed as part of our local city's annual Film Festival last week, I invited a friend along to see it with me (we both love the outdoors). Wild is the true story of a young woman named Cheryl Strayed who set off on the Pacific Crest Trail with absolutely no preparation for a 3-month long, 1000-mile hike in the hopes of literally saving her life. Cheryl spiraled downward into ever-more destructive behavior after her mother died from cancer, cheating on her husband with strangers, drinking to excess, and even using heroin. This is the story of her epic long-distance hike but also of her healing emotional journey along that trail. It starts with her first setting out on the trail (as an experienced backpacker, it hurt me to see how poorly prepared she was!) but flashes back to how she got to that point. While it is moving and emotionally powerful, it is also funny and entertaining. This is an all-star, top-notch film from every perspective. Reese Witherspoon was so moved by the book that she bought the film rights and starred in the movie, and she is absolutely amazing in this role, just as powerful as Julianne Moore in Still Alice (who won the Best Actress Oscar). In addition, Nick Hornby wrote the screenplay, and the scenery is just stunning. Brilliant from beginning to end and highly recommended.

Finally, my husband and I watched The Judge Saturday night at home, a movie we've both been wanting to see for a while. This is another movie with an all-star cast and excellent acting, including Robert Downey Jr. in the lead role as Hank, a successful, cutthroat Chicago lawyer who goes home to his small town for his mother's funeral. His father, played by Robert Duvall, is a prominent local judge, and it's clear from the start that he and Hank are estranged. Hank's two brothers (one of them played by Vincent D'Onofrio) have stayed in town, but all three sons call their father "Judge," as does everyone else in town. Hank plans to leave as soon as the funeral is over, but a tragedy occurs and before long, his father has been arrested and accused of murder. Despite their differences and animosity for each other, Hank can see that his father needs his help, so he stays to defend him. We loved this suspenseful and emotionally powerful movie. It's a legal drama but mainly it is about family relationships and overcoming past hurts.

Have you seen any good movies lately?

Friday, April 24, 2015

Ground-Breaking Research Into ME/CFS Immune Dysfunction

I am about two months late with this exciting update in the world of ME/CFS research. I've had more than my share of bad days this winter and spring, and I also wanted to gather more information so that I could better explain the impact of this ME/CFS research breakthrough.

On February 25, Columbia University's Mailman School of Public Health (note: major university) announced the results of its Center for Infection and Immunity's exciting new research to identify the exact characteristics of the immune dysfunction in ME/CFS. Columbia sent out a press release summarizing the research, with the full study report available here.

A word of warning before you read the press release or any news stories based on it: whoever wrote it was very poorly informed about past ME/CFS research and proclaimed this new study, "the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder." Eeek - yeah, completely cringe-worthy.  Someone in PR got a bit carried away with that one. Of course, we all know there have been plenty of studies showing the physiological abnormalities present in ME/CFS over the past two decades. Back in 2007, Dr. Nancy Klimas summarized many of these findings in her report, Chronic Fatigue Syndrome: Inflammation, Immune Function, and Neuroendocrine Interactions, which cites over 30 different scientific studies (and by the way, is an excellent scientific article to share with doctors). Since then, there have been more studies on immune dysfunction in ME/CFS.

So, try to ignore the flagrant errors in the headlines surrounding this new study, and let's instead focus on what IS ground-breaking about it:
  • It was the largest ever (by far) study of ME/CFS immune dysfunction, involving almost 300 patients and over 350 healthy controls from multiple locations. Since many previous ME/CFS studies have been very small (often due to a lack of funding), the mere size of this study is big news. The smaller studies are often ignored in literature reviews, like those recently done/in progress with P2P and IOM - this one will not be ignored.
  • It was also the broadest ever immune study of ME/CFS in terms of scope, looking at 51 different immune biomarkers in blood plasma samples.
  • It was headed up by a world-renowned virologist, Dr. Ian Lipkin, which brings immediate credibility and visibility to the study (something ME/CFS studies rarely get) and included eleven other co-authors who include the world's top ME/CFS clinicians and researchers, including Dr. Nancy Klimas, Dr. Daniel Peterson Dr. Jose Montoya, Dr. Susan Levine, Dr. Lucinda Bateman, and more. This combination of credible outside researcher plus top ME/CFS specialists is unique to date.
  • For the first time ever, this study identified significant differences in immune function between early ME/CFS patients (less than three years) and those who've been ill for more than three years.
In short, the study showed that early-stage patients who'd been sick for less than three years showed elevated levels of many different cytokines (immune markers), indicating an immune system over-reaction that is familiar to all of us who've suffered from recurring sore throats, swollen glands, flu-like aches, and other immune-related symptoms. These results support the long-held theory that ME/CFS is a "hit-and-run" event, where some sort of infectious trigger (mono and Lyme are common ones) sets off an immune system over-reaction that continues even after the infectious agent itself quiets down, similar to a car stuck in high gear. This theory has been generally accepted among experts and patients for many years, but this study provides even more evidence.

A completely new development from this study was the finding that there is a difference between early-stage patients and later-stage patients. Three years seems to be the turning point, and after that, certain immune markers (various cytokines) show a marked decrease. The report itself includes details of all 51 biomarkers measured - which ones were high in the early stages, which ones were low, and which ones shifted after the 3-year mark (there are lots of graphs in the report to help explain the results).

One thing that confused me - and that I'm still not certain I completely understand - is how this new research fits into the already-understood aspects of immune dysfunction in ME/CFS. Two points have been reiterated over the many years of studies:
  • ME/CFS is neither a condition of autoimmunity nor of immune deficiency; instead, our unique type of immune dysfunction is a mixed bag - certain immune elements are over-active and others are under-active.
  • ME/CFS is a condition of Th1-Th2 imbalance, usually identified as Th2 dominant. I explained this in an earlier post about immune dysfunction in ME/CFS, but briefly, it means that our immune systems tend to over-react to viruses and allergens and under-react to bacterial infections, among other things. Certainly, our own experiences here, with my sons and I, have always born this out - allergies got worse with ME/CFS, we developed new food intolerances, we rarely "catch" viruses like colds or flu (though the resulting immune stimulation from exposure can feel like a virus), and any tiny bit of congestion always turns into a secondary bacterial infection, like bronchitis or a sinus infection.
From what I read about this new study, it doesn't negate those previously held theories about ME/CFS but adds more detail to our understanding of the immune dysfunction and shows new evidence of a difference between early and later-stage disease that hadn't been observed in a research setting before.  Personally, my son and I still seem to have the same type of immune dysfunction (though definitely fewer sore throats), though that may be in part due to our treatments aimed at normalizing the immune system which might reduce these differences. If anyone knows differently or understands it better than I do, please share your knowledge!

Finally, I asked a few questions of Dr. Susan Levine who is a co-author of this study, Chairperson of the CFS Advisory Committee, and our own ME/CFS doctor. Her comments on the meaning and effects of this new study include:
  • The differences in early- and late-stage patients found in the study mirror what she often (though not always) sees in her own patients - newer ME/CFS patients tend to have more prominent immune-related symptoms like sore throat, swollen glands, flu-like aches, etc. while patients in the later stages of the disease tend to have pain and cognitive dysfunction as more prominent symptoms (of course, all have the tell-tale exhaustion and post-exertional crashes).
  • As for immediate applications for patients, that is probably still a bit farther off. She said that the kind of cytokine testing done in the Columbia study is not yet available in commercial labs. This may not change anytime soon until there are ways to treat the abnormal cytokine levels - currently, there is no impetus for labs to add these tests.
  • In comparing the short-term and longer-term patients, she said they "are also looking at site variability, differences in gender and ethnicity and other environmental influences (urban vs suburban vs country dwellers) to see if there is an impact."
  • "While these are interesting findings, it would be good to look at T, B, and NK cells in addition, as well as autonomic dysfunction, metabolic changes, and pain levels in these `short duration' versus `long duration' patients to see if there is some additional correlation with other parameters."
So, essentially, this is exciting new research that does represent some breakthroughs and new ideas, though there may not be much immediate effect that patients will see. The finding of a difference in short-and long-term patients will certainly be of interest to clinicians who may slightly vary their treatment protocols for newer versus longer duration patients; however, the overall immune dysfunction is still a mixed bag, meaning that medications to suppress or stimulate the immune system will still have limited efficacy for ME/CFS patients. We are still best off trying to treat with immune modulators to normalize the immune system.

And, of course, this new study brought much-needed visibility to our disease and should provide plenty of fodder for further study and new interest from other outside researchers. And, hopefully, those silly headlines along with the hard data will finally put to rest the outdated idea that ME/CFS isn't a "real" disease.

Does this study fit with your own ME/CFS illness history? Did you notice a change or difference after the 3-year mark?

(For more information, see articles published by The Atlantic and by Science Advances.)

Tuesday, April 21, 2015

Recipe: Mostly Sugar-Free Dark Chocolate Bark

A little over a year ago, my son and I switched to a Paleo diet and got super strict on limiting sugar in an effort to get our yeast overgrowth/chronic thrush under control and to improve out mitochondrial function and energy. It has definitely helped (though we both still have yeast flare-ups and have to stick to the diet). Note that if you read that older post linked above, my son is doing much better now and no longer needs to be as strict as when he started - we both eat a fairly standard Paleo diet now with plenty of variety, including fruits.

Finding a source of dark chocolate treats with little to no sugar was a priority for both of us! We tried commercial sugar-free chocolates and found a couple that we liked OK (Weight Watchers' brand peanut butter cups and WW or Whitman's brand toffee squares are both pretty good), but they do contain some dairy, we shouldn't eat too much of the sugar substitutes they contain, and the chocolate they use isn't really top quality (we are connoisseurs, after all). We also both enjoy super-dark chocolate - if you look for 80% cocoa or higher, it contains less than 5g of sugar per serving. But, again, that's not a perfect solution.

So, I experimenting with making our own dark chocolate bark, starting with unsweetened chocolate (baking chocolate) and adding small amounts of Stevia and coconut sugar (which is OK for Paleo and for yeast). Here is the resulting recipe (and here is an earlier recipe I posted for Chocolate Sunflower Butter Cups):

Finished Chocolate Bark - Ready to Eat!

Mostly Sugar-Free Dark Chocolate Bark

4 oz (1 package) unsweetened baking chocolate
1 tsp Stevia
1 Tbl coconut sugar

Optional Additions:
Unsweetened coconut
Sunflower seeds
Pumpkin seeds
Chopped nuts
  1. Chop up chocolate into small pieces and put in a glass bowl or 4-cup glass measuring cup. Microwave in short intervals, stirring in between, until chocolate is mostly melted (the exact time will depend on your microwave; I usually start with 1 minute, stir, then another 45 seconds).
  2. Stir chocolate (some of the chunks will still appear solid but will incorporate into the melted portion as you stir). Add Stevia and coconut sugar, to taste, and stir well. The amounts listed above will give you the equivalent of very dark chocolate. Add more if you like yours sweeter. Microwave for another 30-40 seconds and stir again.
  3. Add whatever additions you like and stir. I love coconut, so I add lots of unsweetened flaked coconut to mine, plus some sunflower seeds for a bit of salty crunchiness. My son hates coconut, so he liked a mix of pumpkin and sunflower seeds in his. You could also use some chopped nuts, though seeds are less inflammatory than nuts for those with immune disorders.
  4. Spread the mixture out on a piece of waxed paper on the kitchen counter (I put a layer of foil under the wax paper so the hot mixture doesn't melt the wax onto the counter) and let cool at room temperature.
  5. When solid, break the bark into pieces. Store in an airtight container or plastic bag at room temperature (refrigerating chocolate can change its taste and texture).
NOTE: Stevia and coconut sugar are acceptable for both Paleo and anti-candida diets and won't feed yeast. The coconut sugar doesn't dissolve completely - it leaves a slightly crystalline texture in the chocolate. If you don't like that, you can experiment with using just Stevia, but if you add too much, it may have an off-taste.


© Suzan L. Jackson 2015
(Do not reprint or publish without written permission from the author)

Warm Chocolate Bark after being spread on wax paper


Monday, April 20, 2015

Movie Monday 4/20

I have been neglecting this blog! I didn't have any time last week for any writing at all, so it's not just the blog - things have just been busy, plus I wasn't feeling well last week (my one week out of 15 when I get my period). I am doing better now and hoping to finally catch up on some posts this week that I have been meaning to write for ages!

First, my weekly Movie Monday post...We saw two movies last week, one a recent Oscar contender and the other an extremely obscure movie from the 1950's!

Friday night, we rented The Imitation Game, starring Benedict Cumberbatch as Alan Turing, the brilliant but socially awkward man who helped win WWII by decrypting the famed German Enigma code. Keira Knightley co-stars as the only woman working on Alan's team. We both enjoyed this historical drama very much. Neither of us knew much of the story before we watched the movie. The film moves back and forth in time between Alan's childhood being bullied at boarding school and his reliance on his one beloved friend there, his work on Enigma during the war, and a point after the war, in the 1950's when a local police officer decides to investigate Turing, thinking he might be a spy. In this way, you get insight into Turing's personality and his life, as well as the behind-the-scenes story of his top-secret work that changed the fate of the world. Cumberbatch did a marvelous job as Turing, and Knightley's character gave me insight into what it might have been like to be a very intelligent woman at a time when women had few choices in life. Overall, an engrossing and entertaining movie.

Saturday night, we watched a really bizarre movie from 1952 called The 5000 Fingers of Dr. T with some good friends. Our friend remembered watching this movie on TV when he was a kid, so when it aired last week on TCM, he recorded it. As you can probably tell just from the title, this is one weird movie! It was written and developed by Dr. Seuss, which tells you most of what you need to know. It's the story of a boy named Bart who takes piano lessons from Dr. Terwilliker. Bart dreams that he is trapped in a crazy castle, held captive by the evil Dr. Terwilliker, who wants to capture 500 boys to all play on his giant piano. Yeah, as evil plots go, this is a strange one! The whole movie is surreal but lots of fun. Oh, and did I mention it's a musical? So, picture a bunch of Dr. Seuss books all combined together, with lots of singing and dancing, along with doses of Alice in Wonderland, Willie Wonka, and Wizard of Oz. The whole thing is very Seussian - the sets, the colorful costumes, the song lyrics - so this is perfect for Seuss fans. It's strange, but I enjoyed it - lots of fun! I think our sons would have liked it when they were little.

Have you seen any good movies lately?

Monday, April 13, 2015

Movie Monday 4/13

Last week was an extraordinary week for us, movie-wise. My husband and I were camping at the beach and the weather was pretty much the worst imaginable - low 40's and raining for days! So, instead of lying by the campfire in the evenings, we went to the movie theater not once but twice!! It was a real thrill for us. We shared popcorn (not Paleo, but a nice treat) and enjoyed the warm, dry theater and two good movies (plus another on DVD when we got home):

First, we saw The Second Best Exotic Marigold Hotel at the theater. We both loved the first movie, The Best Exotic Marigold Hotel, for its humor and sense of joy, and though reviews of the sequel said it wasn't as good, we enjoyed it just as much. The same fabulous all-star cast is back, including Judi Dench, Maggie Smith, Bill Nighy, and more, as residents of the now-fixed-up-but-still-shabby-chic hotel. Dev Patel (of Slumdog Millionaire fame) is also back as the indomitable Sonny whose disposition matches his name. Now, Sonny is preparing for his wedding and is also in negotiations with a large corporation for a franchise for a second hotel he wants to open nearby, based on the success of the first. He's told that an anonymous guest will come to check out the hotel. When the handsome Richard Gere arrives, Sonny assumes he is the reviewer. The expected farcical comedy follows but with the same warmth and sense of heart of the first movie and the same humorous yet honest exploration of aging. This movie even comes complete with a Bollywood-type musical production. We left the theater with big smiles on our faces - a guaranteed feel-good, uplifting movie and a lot of fun.

The next night, we went back to the theater to see Insurgent, the sequel to Divergent, based on the series of books by Veronica Roth. As you might guess, this one was pure action and suspense. Tris, played by Hollywood's latest hot new star, Shailene Woodley) and Four are back as their dystopian community organized by factions begins to break down. War seems inevitable, and much of the movie is about deciding who to believe and who to follow, as the displaced Dauntless faction searches for a place to belong and Tris tries to make peace with her Divergency. This movie is pretty much nonstop action, with lots of running, fighting, jumping, and chasing, but it is all set within an interesting and unique dystopian plot. There is plenty of suspense here, and we enjoyed rooting for the good guys.

After getting home from our cold, wet camping trip, we were happy to be back on our couch and recliner, respectively, to enjoy another good movie. We had a free rental from Redbox, so we watched Interstellar, a movie we've both been dying to see since its theater release and that our college son loved. Interstellar is set in a dismal future, where nonstop dust storms are ruining the world, the only crop that will still grow reliably is corn, and there is a worldwide hunger crisis. Most people have to become farmers and are just barely hanging on. Matthew McConaughey plays a father who trained as an astronaut before the space program was dismantled and is now a reluctant farmer. He has a son and a daughter whom he loves and is particularly close to 10-year old Murph, his daughter. That makes it especially hard when an opportunity comes up for him to journey deep into space on a long-term mission to basically save the human race. He goes, along with a group of scientists, including one played by Anne Hathaway, to find another planet that humans can survive on. This is an epic movie covering generations about topics as far-reaching as family, the future, the human race, and the nature of time. My son and I both loved it and were especially moved by one surprise element. My husband enjoyed it for the most part but thought it was a bit too long (it is long, at just under 3 hours) and complicated. I loved every moment of it and found it suspenseful, moving, and thought-provoking, blending science fiction with a family drama.

So, we had a great movie week! Have you seen any good movies lately?

New ME/CFS Guide for Clinicians

Back in February, I wrote about the big news that ME/CFS had a proposed new name, SEID, and its first-ever diagnostic criteria in the U.S.

The IOM group that developed the criteria took that a step further and came up with a relatively brief and easy-to-use ME/CFS Guide for Clinicians. You can print the guide at that link (just 20 pages, total) and share it with your doctor (some of those pages are title, table of contents, members of the committee, etc. - the heart of the document is nicely summarized and includes easy-to-use charts and graphs). In fact, share it with every doctor you see! This straightforward, clear explanation of ME/CFS had the potential to make a huge difference where it counts: with the family doctors, nurses, and primary care physicians who are so often the first medical professionals that someone with ME/CFS encounters.

I've printed a copy to take to my own doctor when I see her on Friday. She already knows how to diagnose ME/CFS - she diagnosed me after a year of mystery illness that no other doctor could figure out. However, I am hoping she will share it with the other doctors and nurse practitioner in her practice.

So, print a copy now and help to spread the word!

Sunday, April 12, 2015

Weekly Inspiration: Emotional First Aid

Earlier this week, I wrote here about happiness and optimism. Lots of people told me they could relate to that post, that they too found joy in small things. One online friend said she herself was in a similar state of mind right now, having also come through a recent bad period and finally feeling a bit better - she described it as " a ridiculous enthusiasm for everything" (a perfect description) and told me how excited she was over the amazing omelet she made herself for lunch!

But, I know that there are at least as many of you out there who could not relate to that post, who are not happy, who feel overwhelmingly beaten by this terrible disease, and who feel that you have nothing to look forward to. As another friend put it, sometimes "one is simply dealing with this minute and the next, and hoping for some point of light and solace in that dark place, as the most we can manage." And I get that that, too, because I have gone through periods like that, early in my illness even experiencing true depression for the first time in my life.

Today I found this TED Talk that I hope will be helpful to you. It's by a psychologist named Guy Winch who talks about "Why We All Need to Practice Emotional First Aid." He speaks to the need for emotional hygiene, just like physical hygiene, though something that most of us overlook.

In his talk, he discusses loneliness, helplessness, failure, rejection, and focusing/obsessing over negative things - all crippling emotions that can actually affect our physical health if they go untreated or are not addressed. He explains how our emotions can fool us and the importance of  prioritizing our psychological health, that we should treat emotional pain just like we do physical pain. You can listen for yourself, in this short talk:



I really enjoyed this talk and found it fascinating. Even with my current positive state of mind, I learned some tips here that will be useful to me - his section on ruminating over negative things really hit home for me!

I hope you find this talk as inspirational as I did. Enjoy this weekend...and remember to take care of your mind as well as your body!

Friday, April 10, 2015

Living for Today and Looking Forward to Tomorrow

Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?

Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).

I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.

I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.

Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.

Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.

I still feel like I'm not explaining this well.

Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.

At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.

I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.

What are you looking forward to? What makes you happy?

Friday, April 03, 2015

Essay Published on Mamalode

My essay, While They Are Sleeping, is featured today on the home page of the Mamalode website (and will be available all month).

This is an older one that I wrote many years ago, back when our sons were just 6 and 3 years old, about checking on them while they slept each night before going to bed myself. It's something that I think any parent can relate to and makes me feel quite nostalgic, since my "boys" are now 20 and 17 and tower over me!

I hope you enjoy the essay - please share it with your friends!

Monday, March 30, 2015

Movie Monday 3/30 - the TV Edition

We didn't watch any movies this past week (nor the week before, since we were away for the weekend for my grandmother's funeral), so I thought I'd do a TV edition of Movie Monday.

Some people think we watch a lot of TV at our house, but as most of you probably understand all too well, it's a nice activity to enjoy with family members when you are too wiped out to do anything else! I pretty much hit the wall by 7 pm each evening, so my husband and I enjoy watching a couple of our favorite TV shows together, before we go up to bed at 9:30 to read. In addition, I usually watch something by myself at lunchtime - it's a nice way to wind down before my nap and give me a chance to watch something that the rest of my male-centric household won't watch with me! Finally, when my college son comes home on Sunday afternoons, he is usually completely worn out from the weekend, so he likes to catch up on some favorite shows with us. Here are some of our current favorites airing at this time of year:

My husband and I have a long list of shows that we enjoy watching together each evening. Some are old favorites, like Grey's Anatomy (my husband has pretty much had enough of it but I still love it and he still watches it with me) and The Good Wife (still as fabulous as ever!). We also enjoy The Blacklist, which just gets better and better, and Perception, a lesser-known series currently in its 3rd season about a schizophrenic neurology professor, played wonderfully by Eric McCormack, who helps the FBI solve cases.

Two of our current favorites are The Americans, about Russian spies living as a regular American family in the 1980's - an amazing show that is better every season! - and Madam Secretary, a new show starring Tea Leoni as the Secretary of State and Tim Daly as her husband, a renowned Religious Studies professor. It has its flaws - sometimes the problems are wrapped up a bit too easily - but Leoni and Daly are both excellent, as is the rest of the cast, and we are enjoying it. And, of course, Mad Men comes back for a final season this week!

On DVD, we have just finished watching the final episode of the final season of Treme, one of the best TV shows ever! It's set in New Orleans (where we used to live) after Hurricane Katrina. The music is just incredible, and the characters now feel like old friends - we were sad to say goodbye to them this weekend. If you've never seen this show, check it out.

It is rare that we can talk our 17-year old son into sitting and watching a TV show with us - he is usually running off to be with his friends or his girlfriend! Mostly, he likes sitcoms, and some of our favorites include Brooklyn 99, The Goldbergs (set in the 80's), Modern Family (best comedy EVER), and our latest discovery, Fresh Off the Boat. He will occasionally watch Bones with us, one of his old favorites. There is just one new drama that he will enthusiastically watch with us: How To Get Away With Murder. Wow, this is a unique, fast-paced legal thriller that will keep you glued to the screen. We all love it.

When our older son comes home on Sundays, he loves to catch up on The Following, The 100, Elementary, or NCIS - New Orleans with my husband and I. He and his Dad watch Vikings while I take my nap - they love it!

Finally, I look forward each day to relaxing over lunch with something the rest of the family won't watch with me! Two of my favorites were Parenthood and Glee, which both recently ended - forever! Like Glee, we all used to watch The Amazing Race together as a family, but everyone else lost interest, so I am watching that on my own now, too - I still enjoy it! Sometimes, I watch The Mysteries of Laura, which is fun, and I've been working my way through season 1 of The Gilmore Girls lately. If I am rushed for time, I like About a Boy or Moms and am enjoying the brand-new sitcom Younger.

How about you? What are your favorite TV shows? I am especially interested in any recommendations for me to watch on my own, now that Parenthood and Glee are both gone. Any girly-type stuff you especially like? I did enjoy the first episode of Outlander, but that was the only free one. We watch TV On Demand or on Amazon Prime or get DVDs from the library. Any recommendations? What are your favorites?

Sunday, March 29, 2015

Weekly Inspiration: Celebrate!

I thought I'd pull from my own writings for this week's inspiration post, about our attitude of celebration.

At our house, we have always celebrated both minor and major holidays and events in a big way, but this approach became even more important after the three of us got sick. There is nothing like a little celebration to lift the spirits, whether it's for a major holiday, a minor holiday, or even something totally made up! My essay, Celebrate Everything Big and Small, recently published on the Mamalode website, describes how we add celebrations to our lives as a way to add joy to every day. The essay focuses in on the holidays of this time of year - from New Year's through Easter - but if there are no holidays coming up and we need a pick-me-up, we sometimes have Mexican Fiesta Night or some other made-up event.

This older blog post, The Joy of Celebrations, focuses in even more on adding celebrations to a life of chronic illness. Even if you are severely limited and can't cook, you can still celebrate all occasions in your own way - order take-out, ask a family member or friend to put up some decorations, wear a special color for a holiday, listen to appropriate music (I got a CD of Mexican guitar music from the library for Mexican Fiesta Night!), or maybe watch a holiday-themed movie.

Adding celebration and joy to your life is more a matter of attitude than of doing certain activities, and it is even more important if you have kids who are sick.

Now that our sons are 17 and 20, I can see that growing up with this celebration attitude has paid off. Our 20-year old son lives in an apartment with friends on a local college campus, and he and his friends are always hosting parties with really creative themes: they had a James Bond party last year and a Dark Party this year where the only light came from flashlights. I recently asked our son why there was an old pair of red suspenders in the car (which came from the costume box they used when they were little), and he said nonchalantly, "Oh, I used those for our Old Man Party." That's my boy!

So, the next time you are feeling a bit down or have had a bad day or week or month, plan a mini celebration! It'll lift your spirits and take your mind off your illness for a bit. We could all use a little extra joy in our lives.

My son and his two best friends at their James Bond party

Wednesday, March 25, 2015

Yeastie Beasties Got Me Again

Just thought I owed you all a quick post to explain why I've been so absent the past few weeks. I haven't even had the time/energy for my usual Weekly Inspiration posts every week.

Yeast overgrowth/thrush/candida got me again. This has become a chronic problem for me (and for my son, also) that keeps flaring up periodically. It seemed to come from nowhere this time, knocking me flat with extreme flu-like aches and exhaustion for over a month. I figured it out sooner this time than with past flare-ups, but it still took me a full month on antifungal prescription medications before I started to feel well, at the end of last week.

Since there was no obvious trigger this time (for instance, I hadn't been on antibiotics recently) and I have been sticking to all my natural yeast overgrowth prevention approaches (strict diet, strong probiotics, and lots of antifungal supplements), I was puzzled as to why this happened now and hit me so hard. Looking back at my records (it's so helpful to keep track!), I saw the following sequence of events:
  • July - September - took doxycycline (an antibiotic) for Lyme disease (a new infection that I caught early and was able to get rid of fairly easily this time)
  • Early October - got bronchitis and then pneumonia which required two rounds of antibiotics - Zithromax and Cipro
  • Severe yeast overgrowth flare-up (is it any wonder why?) starting in mid-September and continuing through to mid-November - it took about a month of antifungal medications to get that under control.
  • Early February - yeast overgrowth flares up again, just after Mardi Gras 
So, based on that, I am thinking that I didn't completely get the yeast under control back in the late fall - I stayed on the antifungals just long enough to start feeling better and get rid of the thrush in my mouth, but it is likely that there was still too much yeast down in my GI tract. With that being the case, all it took was a couple of days off my usual strict diet (I did have some King Cake and bread pudding for Mardi Gras!) to trigger another bad flare-up.

So, this time, even though I am feeling better this week, after 4 weeks on alternating Diflucan and Ketoconazole, I am going to stay on the antifungals longer (switching to just Diflucan today) in order to make sure the yeast is really under control and I won't be back in the same crisis in another month. A friend who's a veterinarian also suggested taking a preventive dose of antifungals just one or twice a week long-term - she said it works for the animals she treats with chronic yeast problems. So I will probably try that, too, if my doctor agrees.

If you have never considered yeast overgrowth as a factor in your illness, you should. It is very common in people with ME/CFS, especially those who've been sick longer than 3 years, due to the particular type of immune dysfunction we have. It can make all symptoms worse but especially brain fog, flu-like aches, sore throat, and exhaustion. Here's more information on diagnosing and treating yeast overgrowth.

As for me, I am happy to be feeling like myself again (my ME/CFS self but still)! My baseline these days is actually pretty good, and I am thrilled to be back to taking walks and doing small bits of weight work...and just being able to go to the grocery store or drugstore and get off the couch!

Tuesday, March 24, 2015

Live Webcast Tomorrow on IOM Report

Announcement from Solve ME/CFS Initiative:

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You can watch the briefing live by registering at this link - you must register ahead of time to get the link to the live webcast. I just signed up - it only took a minute.

I was surprised to see that Morgan Fairchild is an ME/CFS patient - I had no idea!

Here's my summary of the IOM report and announcement from last month.

Wednesday, March 18, 2015

Celebrate Everything, Big and Small

My essay, Celebrate Everything, Big and Small, is featured today on the website Mamalode for their March Celebration theme.

Although I wrote the essay for a general audience, it does reference our life with chronic illness. The theme of this essay - that you can add joy to every day of life with celebrations of all kinds - is especially relevant to anyone living with chronic illness.

St. Patrick's Day was yesterday, but we still have the First Day of Spring coming up on Friday and Easter just around the corner. We can always find excuses to celebrate!

I hope you enjoy the essay and that is inspires you to celebrate everything, big and small, in your own way and embrace those moments of joy!

Monday, March 16, 2015

Movie Monday 3/16

I continued to battle the yeast demons last week but finally started to feel a bit better on Thursday, after 3 full weeks on antifungals. Not quite out of the woods yet but getting better and slowly returning to my own normal.

We had a mostly quiet weekend here, though we did manage to get out for dinner Saturday night and then got a DVD to watch:

I was very excited to see Before I Go To Sleep at Redbox! We both read the book and loved it (here's my book review), so we've been wanting to see the movie since its (too brief) theater release. Its release was mostly overlooked last year with all the buzz about Gone Girl at the same time, though I much preferred Before I Go To Sleep when I read both books. The movie adaptation was well done.

Nicole Kidman stars as Chris, a 40-year old woman with a type of amnesia where she can only retain 24 hours of memories. Whenever she goes to sleep, her recent memories, before the age of her mid-20's, are wiped clean (this type of amnesia really does exist, as described by Oliver Sacks in his book Musicophilia). So, she wakes up every morning thinking she is in her mid-20's and having no recollection of her husband who is asleep in the bed next to her. Her husband, Ben (played by Colin Firth), has covered the wall of their bathroom with photos of the two of them and their life together and Post-its reminding her of the important details of their lives. Every morning, she wakes up terrified, and he calms her down and patiently explains that he is her husband and that she had an accident and lost her memory. It's a frightening, yet repetitive routine. Every day is pretty much the same until Chris starts seeing a therapist who gives her a camera to make a video journal each night before bed to help her remember things. With the help of the camera and the therapist, Chris begins to remember things, but nothing makes sense to her.

This is an exciting thriller based on a unique premise. The movie does a great job of putting the viewer inside Chris' perspective so that you don't know who to trust or what to believe, and the tension mounts as Chris slowly begins to put some of the pieces together. A few details were different than the book, but the movie sticks pretty closely to it in most respects. We both enjoyed it.

Have you seen any good movies lately?