Thursday, July 30, 2015

Two Essays on Living with Chronic Illness

I'm back, finally, after a very long and difficult month. My dad went into hospice this month after a year-long battle with melanoma and passed away two weeks ago. We have been away most of the month - by his side in hospice, on a vacation planned long ago, and back in Rochester again for his memorial service this week.

So, now we are trying to return to normal life (or as normal as our life gets, as my husband says!). We came back home to car repairs, appliance repairs, college tuition due, and a host of other urgent matters to take care of.

While I catch up and try to to get back into a more normal routine, I thought I'd share two recent essays of mine on chronic illness that were published while we were away this month:

The website Mamalode published my essay 5 Things I've Learned From Living with Chronic Illness in early July. Please take a look and share it with your friends and family - it's a positive perspective on this crazy life we all lead, but it is also applicable to healthy people, too. Everyone can benefit from slowing down, simplifying, and finding more joy in the little things.


Last week, the ProHealth website (which I highly recommend for up-to-date and accurate information on our illnesses) published my essay Riding the Chronic Illness Roller Coaster, about the emotional ups and downs of living with chronic illness and how to cope during the difficult times. It's a topic I have often written about here on my blog that we all struggle with, whether we've been sick for 1 year or 20 years.

I would love to know what you think about either of these topics - you can leave comments on either website or right here on the blog.

And I hope to get back to regular blog posts soon, once I get all this urgent stuff taken care of!

Saturday, July 18, 2015

New Essay on Chronic Illness Published

Sorry I have been absent from the blog for a while. My dad just passed away this week, and we spent a week by his side in hospice in my hometown (Rochester, NY). I won't be posting here much for another week or so, as we will be traveling a lot and going to the service. My dad fought a brave battle against melanoma, and we are grateful that we had a full year with him after his diagnosis and spent many weekends together. It's still hard to believe he is gone.

On a lighter note, my essay, 5 Things I've Learned From Living with Chronic Illness, was published on Mamalode this month - it describes some of the silver linings of our family's illnesses, a positive view of this crazy life we all lead! Hope you will check it out. I'd love to hear what you think.

I'll be back to blogging regularly when things settle down a bit.

Dad and I dancing at my wedding

Sunday, July 05, 2015

Weekly Inspiration 7/5: Living Beyond Limits





Amy Purdy, who lost both her legs and her kidneys and spleen to meningitis at 19, starts out this inspiring TED talk with this thought-provoking question:


"If your life were a book and you were the author, how would you want your story to go?"

From there, she describes her own experiences in this emotional, heart-wrenching, funny talk, from her hospital bed to becoming a professional snowboarder and Dancing with the Stars competitor. She focuses on using her imagination to overcome her limits in new and unique ways. Check out her brief but inspiring talk:



Although our situations with ME/CFS are very different than hers, there are plenty of parallels, and her positive, can-do attitude is inspirational.

When I think about her key question, above, my answer is, of course, that I would like a happy ending to my story; I would like to be victorious over my limitations, as she has been.

For me, personally, this comes down to two main strategies that I have taken with my illness and my life:
  • Find joy in every day.
  • Never stop trying to get better - trying new treatments, keeping up on new research, working as I can to strengthen myself and improve my quality of life.
Essentially, I feel it is important to always keep striving for answers and improvements, while also enjoying life right now as well as I can, in light of my current restrictions.

How about you? "If your life were a book and you were the author, how would you want your story to go?"

Wednesday, July 01, 2015

Update & Stress

I just realized I haven't posted anything here in a week and a half, so I thought it was time for a quick update.

I've mentioned before that my dad has been battling stage 4 melanoma for the past year, and things have worsened considerably the past month or so. The cancer has now spread to his brain and the spots on his liver are affecting his digestive tract. He's been hospitalized twice in the past two weeks, and we went to visit him last weekend, during his brief time at home (which all explains where I've been).

We had a good weekend with him, though he was horribly weak and frail. Still, we made the best of it and enjoyed a card game, watching old home movies together, and enticing his appetite back with some of his favorite foods. Unfortunately, he was back in the hospital just 24 hours after we left, with swelling in his brain. My sister is there with him now, and we are back at home, anxiously waiting for news.

So, yeah, a lot of stress...and you know what that means when you have ME/CFS. I've been doing OK, but my symptoms are flared up a bit today, and I am just feeling run-down and worn out. Besides worrying and waiting for an update, I am anticipating additional trips there (about a 7-hour drive away), probably last-minute and unplanned. We have some limited vacation plans this month, so I'm a bit worried about that, too, though we'll actually be traveling within NY state, not too far from where he lives.

That's where I've been! Sorry for the blog silence - I will try to get back to posting more regularly.

Monday, June 22, 2015

Movie Monday 6/22

We had a very quiet weekend here, just my husband and I most of the time. We enjoyed a movie Saturday night on DVD:

Arthur Newman is about one of the oddest road trips you will ever see! Wallace Avery, played by Colin Firth, has hit bottom. He's divorced, his teen son wants nothing to do with him, and now he's lost his job. Even his girlfriend seems to barely tolerate him. So, he does what anyone would do - he gets himself a new identity and leaves town to start a new life. On his first night on the road, he meets a woman who's been arrested for stealing a car and has overdosed on something. Mike, played by Emily Blunt, seems to be very different from Wallace (now Arthur), but they begin to travel together and gradually come to realize they have a lot in common. They go on a wild rampage together, on their way to Arthur's job interview. It's a warm, funny movie that starts out sad but is ultimately hopeful and optimistic. We both enjoyed it very much.

Have you seen any good movies lately?

Sunday, June 21, 2015

A Tribute to My Dad for Father's Day

One of my earliest memories is when, at four years old, I ran out to the breezeway and greeted the kind man my mother was dating with, “Are you going to be my Daddy?” I somehow knew even then that he was the perfect father for me, and he officially became my father when my parents got married a short time later.

He’s not my biological father, but that has never mattered to either him or me. He officially adopted me when I was five years old, and he’s been my dad ever since. He is still one of the kindest, most loving men I’ve ever known, and I couldn’t have chosen a better father.
             
Even back in the 70’s and 80’s – before it was common for fathers – he always took an active role in the lives of me and my sister. We did a lot of things together as a family: camping, hiking, and our annual vacation at the beach. On Saturday nights, we played games together in front of our fireplace. My dad was the champ at Parcheesi and never would have let us win on purpose. He was always fair-minded and kind.
             
He was just as kind to my friends, greeting them by name when he came home from work and always taking an interest in what I was doing. Whenever he came home and saw my best friend, Michelle (which was almost every day), he would say teasingly, “Oh, no! It’s Michelle!” and she’d erupt in a fit of giggles. She knew, just like I did, that he genuinely liked me and my friends. He had a great sense of humor. He even put up with my annual slumber party of screaming little girls in the basement!
             
Dad didn’t just get involved in my life; he involved me in his, too. He was in the trucking industry, and for a while when I was a kid, he had his own business and small truck, making deliveries to local stores and businesses. When I had a day off from school, he’d take me along with him for what he called “pick-em-ups and deliveries.” I rode around town beside him in the red truck, and we’d stop for donuts and lunch. I felt so special sitting next to him, especially when he introduced me to his regular customers.
             
Besides all the day-to-day fun we had together, my dad was always there for special events. We were a family that celebrated everything, and he came to every dance recital and school function, usually with his movie camera. He always let me know that he was proud of me.
             
At my wedding, Dad and I danced together. I chose one of his favorite songs, “Through the Years” by Kenny Rogers, and its lyrics were perfect for our relationship. My family and friends gathered in a big circle around us, and most of them were crying! Dad and I thought that was funny, as we enjoyed our dance together.
             
When my husband and I became parents ourselves, my dad became Grandpa. He was just as loving and kind with our two sons as he had been with me and my sister. From the time they were little, he has always been actively involved with them, playing with them on the floor or outside, playing games together with the whole family, and letting them know he loved them.
             
Last summer, my dad was diagnosed with melanoma, now stage 4. He’s had surgeries, radiation, and immunotherapy, and this past year has been a struggle. My sons, both busy teenagers now, will still drop everything to go visit him and Grandma (a day’s drive away). They play cards with him or watch TV or a movie, and they love his sense of humor. It means so much to me that they love Grandpa just as much I do.
             
Our relationship began in a loving way when he not only accepted me as his daughter but treated me no differently than my sister, his biological daughter. It has only grown stronger over the years. From my dad’s example, I learned patience, kindness, and tolerance. I have come to recognize and appreciate his influence more the older I get. I feel so fortunate to have him as my father, and he’s taught me a lot about being a parent myself.

Friday, June 19, 2015

Social Exhaustion in ME/CFS

I love my extended family - but a weekend together is a marathon for me!
I've been thinking about how exactly to describe this bizarre thing where just being with other people can totally wipe me out...I guess "social exhaustion" is as good as any description, though it's still not quite accurate.

I experienced this horrible, bizarre aspect of ME/CFS again last weekend. My mom and her husband came for the weekend. I had invited them - in fact, encouraged them - to come, and I really enjoyed having them here. We had a great weekend - my sons were both home, we watched old home moves, played games, had some great meals, and talked and laughed a lot. All in all, it was a lovely weekend with family.

Except...that I was totally exhausted by dinnertime Saturday - wiped out, worn out, barely keeping my head up, frazzled, and wrecked. I tried to be polite for a while. I really wanted to play a game while everyone was here (I love games!) or watch more of our home movies, but I was just...so...tired. I finally gave up at 9 pm and went upstairs to bed, while everyone else (including my kids!) stayed up well past midnight.

Getting up to my room and into bed was such a huge relief! Lying down flat in a completely quiet room and reading my book felt so good. I think my mom was a bit put out the next morning, when she asked me why my light was still on an hour later. Even after 13 years, she tends to take it personally when I need a break or can't manage being with everyone any more. I don't blame her - it's a hard thing for anyone to understand, how being with people you love could be harmful.

It feels like some of it is energy depletion - no different than doing too much physically - and some of it is over-stimulation. The noise of being with other people, the chaos of a large group (or even a small group), trying to keep track of conversations going on - it all results in just too much for my mind to process. Even a quiet, brief gathering like my book group has this effect on me. How can sitting in my neighbor's comfortable living room discussing a good book for 2 hours with friends be too much for me? I don't know, but when I get home from book group, I am feeling so over-stimulated ("wired but tired") that I have to take a half Ambien in order to get to sleep (which I rarely need any more). I needed to read for awhile this weekend after I went up to bed - to give my brain some time to calm down and recover, to soothe my frazzled nerves..

My beloved neighborhood book group with author Rachel Simon

I think this is part of why I love our camping trips so much and find being outdoors so rejuvenating. Having just the four of us together, with no phone or TV or computer, is soothing, quiet, and easy for me to manage. The natural world - clouds, trees and flowers, breezes - is naturally soothing and a balm from the usually over-stimulating modern world.

Energy-wise, my body reacts to being in a social gathering much the same way it reacts to physical exertion - too much and I crash. It's over-exertion of a different kind, but with the same effect.

All of this is hard for me to accept because I am naturally a very social person. I love being with people, talking with friends or being with family. I had a lot of friends in high school, was president of my sorority in college, and quite the party girl throughout school and into my 20's. I was always the one to organize an outing or a party, the one to want to stay out later, invite more people, keep going. I used to love to host gatherings at our house. Even now, it's hard to accept that something I enjoy so much could have such a negative effect on me.

Fortunately, with all of the improvements I've made over the past 10 years or so, my ability to tolerate social situations has improved, too. I love seeing my friends or going to my book group or, yes, spending time with my family. But my body tells me when it is too much. I usually limit myself to one major social event per week (and yes, going to a book group counts as "major"!). Sometimes, I can manage a second social outing, especially if it's just being with a couple of close friends. I know when I've hit my limits - and my close friends can tell, too! I've been told I visibly droop when I've had too much social interaction, sliding down further and further into my seat.

When I've had too much - like happened this weekend - it is such a relief when I am finally by myself, in quiet solitude. Just a normal Sunday wipes me out this way, with my college son and father-in-law coming over for dinner and everyone home from school and work. I love having everyone together, but by the end of the day, I've had enough. Monday morning - waking up to a quiet house, all alone - is like a soothing balm to my exhausted mind and body. I can recover from social exhaustion pretty well now, but I need that soothing quiet time with no stimulation. It's vital to my well-being.

Is it the same for you? Do you get over-stimulated and wiped out even from the most pleasant social interactions? How do you cope?

Monday, June 15, 2015

Movie Monday 6/15

We had a really hectic, busy week so not a lot of time for movies. My mom and her husband came to visit this weekend, and I gave her a set of DVDs containing all of our home movies from when I was a kid (I had them converted from the old 8 mm films recently). So, we had a lot of fun watching old home movies on Friday night! I never get tired of them and love seeing so many family members who are now gone.

My husband and I did watch one movie last week on Thursday evening, The Theory of Everything, the biographical movie about Stephen Hawking's early life. Hawking is the famed physicist with ALS (Lou Gehrig's Disease) who wrote A Brief History of Time. Actor Eddie Redmayne did an amazing job of capturing Hawking in each stage of his illness. As the movie opens, Hawking is a carefree graduate student with a great sense of humor at Cambridge, impressing his professors and fellow students with his intelligence and insights. He meets and falls in love with Jane, an Arts major, but before their relationship can progress very far, Stephen's clumsiness becomes more serious, and he is diagnosed with ALS, a damaging and progressive disease, and given two years to live. Jane loves him, though, and they get married in spite of his prognosis. He continues to work (and amaze the experts in his field with his breakthrough theories), and he and Jane have a baby. As Stephen's illness progresses, Jane has to become his nurse as well as his wife. The movie follows him and their relationship through several decades (it's no spoiler to say that he beat his dire prognosis, since he is still alive today, 50 years later!). We both enjoyed this fascinating look into Hawking's inner life. What he has accomplished in spite of his severe and ever-worsening disability is absolutely incredible and very inspiring.

Have you seen any good movies lately?

Sunday, June 14, 2015

Weekly Inspiration - Acceptance


This week I thought I'd combine my newer Weekly Inspiration feature with my old Quote It Saturday feature (though today is Sunday) and get our inspiration from two quotes from one of my all-time favorite books, Life After Life by Kate Atkinson (review at the link - no spoilers). I only just read this book in January, but I absolutely loved it, and it immediately rose to the top of my favorites list!

In the novel, Ursula relives her life over and over again (I love that kind of plot), and each time she dies (and she dies a LOT), she starts over again, being born in 1910. She's only aware of these many lives in a hazy sort of deja vu way, but, as you can imagine, this kind of experience makes her somewhat philosophical. Here are two of my favorite quotes/thoughts from Ursula:

"'Amor Fati,'" Ursula said. "Nietzsche wrote about it all the time..."

'Love of fate?'

'It means acceptance. Whatever happens to you, embrace it, the good and the bad equally. Death is just one more thing to be embraced, I suppose.'
          - Ursula in Life After Life by Kate Atkinson

"Life wasn't about becoming, was it? It was about being. Dr. Kellet [her therapist] would have approved this thought. And everything was ephemeral, yet everything was eternal, she thought sleepily."
         - Ursula in Life After Life by Kate Atkinson

I like the Nietzsche concept (perhaps I should read some of his books), and I thought it applied perfectly to life with chronic illness. Stuff happens - in every life - and if you want to be happy, you need to accept what happens, embrace it, and learn to live with it. I think the second quote is a similar concept - to focus on being, rather than becoming. Live in the moment because each moment is fleeting. We can't live our lives waiting for what is coming or we will miss everything.

If you are looking for some great summer reading, I highly recommend Life After Life and also the companion novel Atkinson just published in May, A God in Ruins, about Ursula's brother, Teddy (no, he doesn't relive his life, but there are still some surprises). I just finished that one, so I will try to post a review this week.

(And, by the way, both books are over 400 pages so qualify for my Big Book Summer Challenge, so if you plan to read one of them - or another big book - this summer, sign up for the reading challenge and join the fun!)

What do you think about these quotes? About acceptance? About being rather than becoming?

Hope you are enjoying the weekend!

Monday, June 08, 2015

Movie Monday 6/8

We took a mini vacation last week, camping at Shenandoah National Park, but it was cool, rainy, and very foggy the entire time. So, we escaped into town in the evening and went to the movies! The theater in Luray, VA, was hot pink on the outside and had about 8 tiny theaters inside. Ours had about 6 rows of seats and a screen not much bigger than the TV at my mom's house! In this photo, the suits of armor on either side were life-sized, so the screen was only about 5-6 feet high.

Our tiny movie theater - we had it all to ourselves!

After much deliberation, we saw Poltergeist in the tiny theater. We just shared the original Poltergeist with our sons last summer, and they really wanted to see the new version. I had my doubts since the original is so great, but I have to admit, they did a good job with the remake. It follows the same basic story as the original (what? you've never seen it?)...a family moves into a house in a suburban neighborhood and soon finds out that it is haunted by a poltergeist. As with the first movie, the little girl is the main target (and is just as adorable), and in the remake, she begins talking to these "imaginary friends" as soon as they move in. Things escalate quickly from there, until the family calls in the supernatural experts. As with the original, the movie is very well-done, not strictly horror because of the in-depth plot and good acting, though it is plenty scary with some jump-in-your-seats moments. They did a nice job of updating the story by using modern technology, including cell phones, tablets, and a drone camera that is able to show the audience what is happening behind the scenes in the supernatural world. We all enjoyed this very good update of an old favorite, but you might want to pass it up if you don't manage suspense well!

Once we got back home (a day early!) and the kids both took off with their friends, my husband and I got a DVD on Friday night - we finally got to see Mockingjay, Part 1. We both read - and loved -  the entire series (The Hunger Games by Suzanne Collins) and have been wanting to see this latest movie adaptation for a while. I have to admit, I did not have a great attitude going into it because I was annoyed that Hollywood had taken a relatively short book and turned it into 2 movies. But, this excellent adaptation quickly won me over. If you are familiar with the basics of the earlier books/movies (a future world pits children and teens against each other in an annual to-the-death contest that is like reality TV on steroids), this last portion (well, part 1) of the story continues after the latest Hunger Games has ended. Panem (what is left of the US) has degenerated into war, with the Districts beginning to revolt against the Capitol. Katniss is at the center of the action, with a group of revolutionaries wanting to use her in a propaganda campaign to convince the Districts to join the revolt. I was blown away by everything about the movie - it was all so well-done. As with the first two movies in the series, it featured great acting, excellent scripts, lots of action, and amazing special effects. I was brought to tears at one point. If you haven't experienced this series yet, you are missing out! The books were top-notch - The Hunger Games, Catching Fire, and Mockingjay (reviews at the links - no spoilers) - and the movie adaptation have been excellent.

Have you seen any good movies lately?


Monday, June 01, 2015

Movie Monday 6/1

My husband and I actually considered going to the movie theater this weekend, but between the cost and the challenges of fitting it into my nap/meal schedule, we decided to use a promo code for a free DVD from Redbox instead. It's nice to see a movie on the big screen once in a while, but it's also very nice to watch it while horizontal on my couch, with herbal tea and dark chocolate by my side and the ability to take bathroom breaks without missing anything!

We watched Nightcrawler, a movie that our college son had recommended. It stars Jake Gyllenhaal in his creepiest role ever! He plays Lou Bloom, an enthusiastic thief always on the lookout for a new opportunity. One night, while cruising around LA, he encounters a horrible car accident and witnesses a freelance videographer (a "nightcrawler") shooting footage to sell to a local TV news station. He steals a bike and heads to a pawn shop to buy a police scanner and video camera, then hires a desperate young man as his assistant, and he's in business. Right from the start, he is breaking the rules and crossing professional lines in order to get the most gruesome shots possible, and he finds a good customer in Nina, played by Rene Russo, a local TV news producer looking to move her career forward who has no compunction about running Lou's grisly footage. Things escalate as Lou seeks to get more and more cutting-edge crime scene photos, and he even begins to modify the scenes to get better shots, until he finally crosses the line and puts people in danger. The key to this movie is Gyllanhaal himself, who is just so creepy, with his wide-open eyes, sly grin, and overly earnest manner. It's a unique and suspenseful drama with plenty of action that we both enjoyed.

Have you seen any good movies lately?

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?