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?

Monday, March 09, 2015

Movie Monday 3/9

My husband was out of town all last week and then got stranded in Texas for the weekend, too, due to the snowstorm here, so I watched two movies on my own (and also got hooked on The Gilmore Girls!):

I watched Young Adult, starring Charlize Theron as Mavis, a 30-something divorced author of YA novels. Mavis is clearly unhappy with her life, barely going through the motions and spending a lot of time either drunk or hungover and/or sleeping with strangers. When a baby announcement arrives from her high school sweetheart, Buddy, she gets it in her mind that the answer to all her problems lies in simply winning Buddy back. She heads back to her small hometown, intent on reviving their old romance. Since Buddy is now married and has a newborn daughter, things don't quite go as Mavis planned. While basically stalking Buddy, she runs into another former classmate, Matt, who was permanently disabled by some bullies in high school. This movie was billed as a comedy, but I found it pretty depressing. True, Mavis does make a fool of herself going after Buddy and being stuck in her popular girl high school persona when everyone else seems to have moved on, but it all felt more uncomfortable and cringe-worthy to me rather than funny. Supposedly, it's a dark comedy, but it seemed kind of tragic to me. The movie is very well-done, however, with a good script and acting. It just wasn't my cup of tea.

Chef, in contrast, is an uplifting and thoroughly enjoyable movie about food, family, fatherhood, and friendship. Jon Favreau stars as Carl, the accomplished and talented chef of the title, who is stuck under the thumb of an overbearing restaurant owner, played by Dustin Hoffman. John Leguizamo plays Carl's loyal line cook and enthusiastic best friend. Carl's life seems to be falling apart, as his ex-wife, Inez (played by Sofia Vergara), urges him to spend more time with his son, Percy, and leave the restaurant. She wants him to open a food truck, supplied by her first ex-husband, a quirky guy played by Robert Downey, Jr. Fed up and with few options, he finally gives into the food truck idea, and the whole family heads to Miami to pick it up.

The food porn in this movie is amazing! My mouth was watering, and the grilled cheese scene alone just about killed me (I'm dairy intolerant and miss cheese so much!). But this is far more than a movie about food - it is also filled with great music, family drama, humor, and one of the best road trip scenes ever. They drive the food truck cross-country, from Miami to L.A., in scenes filled with mouth-watering food, foot-tapping music, and a lot of fun. The scenes in New Orleans made me home sick. This film is well-written, beautifully produced, and filled to the brim with excellent performances by great actors. All in all, this is a gem of a movie, filled with joy, and I loved every minute of it. It is guaranteed to put a smile on your face, and those amazing cooking scenes inspired me to get back in the kitchen and get more creative this week!

I almost forgot...I actually went to the movie THEATER to see a movie on the big screen last week! My annual movie venture. A friend and I enjoyed a rare evening out, with dinner and a movie. We saw Still Alice, which is based on a wonderful novel by Lisa Genova. Julianne Moore stars as Alice, a 50-year old world-renowned linguistics professor at Columbia University (though in the book she worked at Harvard) who develops early-onset Alzheimer's disease. She is married - Alec Baldwin plays her husband - with two grown daughters and a grown son. To make matters worse, the kind of Alzheimer's she has is genetic, so her children are also at risk. The movie follows Alice from her first inklings that something might be wrong through her diagnosis and her very quick decline. The movie was just as good as the book, and Julianne Moore really earned her Best Actress Oscar. I cried so hard at one point - while Alice is giving a heartfelt speech during her decline at an Alzheimer's convention - that I actually floated my contact lens right out of my eye and had to run to the restroom to get it back in! Although it is heart-breaking, this movie is also about life and love and the strength of the human spirit. Any movie that can make you feel that much is a winner in my book.

Have you seen any good movies lately?

Thursday, March 05, 2015

Weekly Inspiration: How To Talk To Yourself

For this week's inspiration, I have turned to someone I often turn to when I need help coping or need inspiration: Toni Bernhard.

Toni is a long-time online friend who also has ME/CFS, but more importantly, she is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, as well as the author of a monthly column on living with chronic illness in Psychology Today. I highly recommend How To Be Sick - it's an inspirational and thought-provoking book that has helped me a lot. I still need to read and review How To Wake Up. I think I could use it about now.

In this month's column in Psychology Today, Toni writes about How to Talk to Yourself. As with all of her writing, it is an insightful essay that I found very helpful. In it, she discusses how positive self-talk can help you to feel better and have compassion for yourself. This is something I really needed to hear today, both because of on-going struggles with a bad crash and also ongoing struggles in an important relationship in my life. I want to write out some of the quotes that she includes in this essay in large letters and post them all over my house!

Two of my favorites:
"The greatest griefs are those we cause ourselves" - Sophocles

"Holding on is believing that there's only a past; letting go is knowing that there is a future." - author Daphne Rose Kingma

I hope you find Toni's words as inspirational as I did today. You can link to some of her other insightful posts at the bottom of the page. And I highly recommend her book, How To Be Sick.

Tuesday, March 03, 2015

2015 Health-Related Goals

Oh, it's March already? Well, I was a little late this year in setting my annual goals since my son was home crashed all January and now I am even later in posting about it, but you know my motto - better late than never!

Instead of resolutions at the start of a new year, I set goals with measurable objectives. The big goals stay pretty much the same from year to year, but the objectives shift and change depending on how things went the previous year, what I want to accomplish in the new year, and my priorities. I used to set annual goals and then forget about them until December (when I'd be disappointed!), but I find that focusing on measurable objectives and tracking them every week helps to keep me on track - I get more done, I feel better about myself, and by the end of the year, I feel I have made progress. In case you missed it, check out my post on my progress & improvements in 2014 (relevant to my health).

I have 6 big-picture goals that never change:
  1. To have strong, fulfilling relationships with family & friends
  2. To be a writer, writing what I enjoy, and contributing to my family's income
  3. To spend time outdoors with friends & family, doing activities that I enjoy
  4. To create and maintain a comfortable, happy, nurturing home environment
  5. To be healthy
  6. To be financially stable enough to take care of our family and reach our long-term goals
So, in this post, I will focus mainly on my objectives for 2015 for Goal #5, though other objectives also contribute to my health, like spending time outdoors, having healthy relationships, etc.

Some of my 2015 Objectives, specifically related to my health:
  • Do 4 fun things for myself each week (I tend to focus on others so this helps me remember to do something for myself, too)
  • Get together with friends once a week
  • Go outdoors at least 10 minutes a day (helps my state of mind SO much!)
  • Go camping at least 2 times in addition to vacations
  • Try new treatments (we tried 9 new things last year)
  • Walk at least 3 times a week
  • Do gentle yoga stretches at least 5 times a week, for at least 5 minutes
  • Do muscle strengthening at least 3 times a week (this is usually about 10 min, lying on the floor to keep my heart rate down)
  • Meditate at least 10 minutes a day
  • No computer after 7 pm
  • Rest when symptoms flare (a tough one for me!)
  • Take one day "off" per month, with no obligations or to-do's 
I did very well on my health-related goals last year, so I have high hopes to continue improving this year. I'm off to a rough start, dealing with a bad thrush/yeast overgrowth flare-up again right now, but even when I am crashed I can do things to help myself, like meditation and forcing myself to rest!

I know I tend to be very analytical and most people probably don't get this detailed in their goals, but do you have any health-related goals for yourself for this year?

Monday, March 02, 2015

Movie Monday 3/2

I felt pretty awful for much of last week with yet another flare-up of yeast overgrowth, so Friday night was take-out and DVD night!

We got Chinese food and watched Philip Seymour Hoffman's last movie, A Most Wanted Man. I'd heard good things about the movie before (especially in light of it being Hoffman's last work), but I didn't realize it was based on a thriller by John Le Carre. Most of his novels are set in the Cold War, but this story is a more modern one, set in the post-9/11 world. First a little history that I hadn't heard before: apparently, the 9/11 attacks were planned and plotted in the port city of Hamburg, Germany. Ever since then, both German and international intelligence agencies have been keeping a close eye on Muslim communities there, searching for any signs of terrorist activity.

In the film, Hoffman works for a small, secret organization in German intelligence, tasked specifically with ferreting out terrorist activity. His group notices a suspicious looking man at the airport, a half-Chechen, half-Russian Muslim man who is acting nervous and evasive. They watch him and everyone associated with him very closely as he moves around the city. Rachel McAdams plays an idealistic young lawyer who specializes in helping those seeking asylum, and William Dafoe plays a banker she contacts about some money that the mysterious man's father left him. Soon, other agencies are interested in the man, too, including the US State Department (with an embassy employee played by Robin Wright). The big question: is this man just an abused and persecuted person seeking refuge? Or is he a terrorist plotting another bombing? Most parties want to apprehend & imprison him first and ask questions later, but Hoffman and his group would rather watch and wait, hoping he will either lead them to more important people in a terrorist network or that he is perhaps an innocent man.

It's a tense thriller, with plenty of suspense. Like all Le Carre adaptations, it's got plenty of plot twists that keep you guessing and is a little bit complicated to figure out at first, but it soon becomes engrossing. This one keeps you wondering right until the last moments. We both enjoyed it very much.

Coincidentally, I just finished a wonderful, moving novel set in Chechnya that gave me the perfect background for watching this movie: A Constellation of Vital Phenomena by Anthony Marra

Have you seen any good movies lately?

(And if you are also interested in what we are reading this week, check out my Monday update at my book blog.)

Happy Illiversary to Me!

13 years ago today, my life changed forever, though I had no idea at the time. I thought I'd share a bit of how it all started (this is excerpted from an essay of mine):

"How it Began: The Beginning of My Journey with ME/CFS

March 2, 2002, was a typically hectic Saturday. I went to a step class at the YMCA. My husband and I ran errands and worked around the house while our two boys played, and we hosted a dinner party for friends. By evening, I was feeling a bit run-down and had a sore throat. I woke up on Sunday feeling rotten and thought, “I must have the flu.”
It certainly never crossed my mind that I might be sick for the rest of my life. I was a healthy, highly energetic 36-year old and was very content with my life. I’d had a successful and exciting career that I’d left two years previously in order to spend more time with my family. I was married to a wonderful man, had two sweet sons, and was launching a new part-time career in freelance writing.  I felt as though my life just kept getting better and better.
Despite feeling awful that Sunday morning, I insisted we go ahead with our plans for a day trip to Baltimore. We stopped for breakfast on our way out of town and drove the hour south to the city to visit the National Aquarium, Harborplace, and the Science Center. I remember that day in Baltimore clearly, even though I felt like I was isolated in a strange kind of fog all day. I sucked on hard candies nonstop to try to soothe my sore throat which was worse than any I'd had in years. I can remember clinging to the railings at the aquarium, barely able to stay on my feet. I had never felt so sick before in my life.
Everyone gets sick once in a while, especially with small children in the house, so I figured it was a virus. Once back home, I settled onto the couch, let my husband take over much of the household work, and waited to start feeling better. After a week, I did feel mostly better and resumed my normal, active life. We even took a planned trip to my sister’s house in Connecticut to see my newborn niece.
A few days later, I felt horrible again – exhausted, achy all over, sore throat. Could I have caught another virus so soon? What was going on? This didn’t seem like any flu I’d ever had before.
After several weeks with no improvement, I went to see my doctor. He ordered blood tests for the most common culprits: mono, Lyme disease, parvovirus, and a basic blood analysis. The good news came back:  everything looked normal. So why was I still sick?
During that first month, I spoke with my grandparents in Rochester, NY. They were both sick also and had been for a full month. Their doctor told them there was a particularly nasty flu virus going around. I hadn’t had any of the gastro-intestinal symptoms they’d had or a significant fever, but I still figured I must have the same thing. They were beginning to recover, so I stayed on the couch and waited for my recovery to begin.

Journal Entry, 3/21/02:
Beautiful first day of spring, but I didn’t get to enjoy it much.  I had a very rough day and felt pretty depressed.  I burst into tears 3 times today – once over a TV show!  I feel very fragile.

I’ve been sick for 3 weeks now, and I’m getting a little scared.  I’m so sick of feeling tired and achy, so sick of the couch, so sick of not getting anything done!  I want my life back!  I want my normal energy back!  I want to exercise and play with the kids and go to the grocery store and feel productive!

I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life. "

© 2015 Suzan Jackson
 I'm sure the rest of that story is familiar to you - a year of blood tests and doctors' visits, eventually a diagnosis, etc. And, here I am, 13 years later.

I am feeling pretty good today (after 10 days on antifungals, finally getting the yeast overgrowth under control again) and in a good frame of mind. At this point, ME/CFS is an integral part of my life. It's hard to even remember life before piles of medication and supplements, afternoon naps, and carefully monitoring my activity level.

I feel like I am in a good place now. Emotionally, I am happy and rarely get depressed any more (though these past few weeks have been a challenge!) Physically, I am doing much better now than I was 5 or 10 years ago and have found quite a few treatments that each help a little bit - those little bits add up to feeling better, being able to be more active, and having an improved quality of life. (Here's a blog post in my most recent improvements).

I still hope for more effective treatments or even a cure, and the research news lately makes me optimistic that there is real hope for all of us (more on that tomorrow!)

So, Happy Illiversary to me! It's not really a reason to celebrate, but it does provide a chance to reflect on how far I've come. 

Thursday, February 26, 2015

What Would YOU Like to Name Our Illness?

What's in a name? A lot, as those of us saddled with the moniker Chronic Fatigue Syndrome have learned the hard way.

As you've probably heard, a new name has been proposed in the U.S. by an expert committee at IOM, established by HHS: Systemic Exertion Intolerance Disease (SEID). Not everyone is thrilled with the proposed new name, though.

Now, you have a chance for your voice to be heard. Two different organizations are conducting simple surveys on the name so you can vote on which name you prefer and why.

The ProHealth website has a very brief survey - just 3 questions - on the proposed name change.

Paradigm Change has a similar survey with a few more questions on the proposed name change.

Each survey only takes about 5 minutes (or less), so take both!

Both surveys have questions about what name you would choose. Not happy with the current options but not sure what to suggest? My top choice is Neuro Endocrine Immune Disease - it gets at the heart of our illness and lets doctors know exactly what is wrong with our systems (basically, just about everything). NEID was talked about over the past couple of years (I didn't come up with it!), so I was surprised when it wasn't mentioned during all these naming discussions.

Click the links and take a moment to let your voice be heard! You CAN make a difference!

Tuesday, February 24, 2015

Shopping Strategies for ME/CFS

I undertook a big shopping expedition today to Target and Trader Joe's. The two stores are about a 25 minute drive away from us, so I only get up there once every 6-8 weeks or so. This time, I hadn't been since before Christmas, so we were out of everything! This was a BIG stock-up day. I also usually manage the local grocery store once a week.

I know that not everyone with ME/CFS can manage any kind of shopping - ever - but for those who have good days and bad days, like me, here are some of my strategies for shopping, to minimize the payback the next day:

Treat Orthostatic Intolerance. Long before you leave for the store, focus on treating OI. If you can stabilize your blood pressure and heart rate, then you can minimize post-exertional crashes and dramatically improve your quality of life. Some approaches to try:
  • Learn how heart rate affects post-exertional crashes and use a heart rate monitor to monitor your own heart rate.
  • Ingest HUGE amounts of salt and fluids - way more than you think you need - in order to increase blood volume and help to stabilize BP and HR. Just adding extra salt to your food isn't enough. Take salt tablets, use sea salt on everything, drink sodium-enhanced drinks like Gatorade or V-8 juice (before buying any kind of "electroyte drink" or drink mix, check the label to make sure it contains a lot of sodium - many don't).
  • Try medications to help stabilize BP and HR, like Florinef, midodrine, and beta blockers. I couldn't go grocery shopping without crashing until I started beta blockers - now I go almost every week with no problem. They reduce my heart rate to more normal levels, so I can be active without crashing.
When you go shopping:
We're Going To Pump You Up!
  • Pump up your blood volume before you go. I usually drink a 12-ounce can of V-8 juice before I go to the store and also carry my ever-present water bottle (which can also be filled with high-sodium electrolyte drink mix). Remember Hans and Franz from Saturday Night Live? "We're Going to Pump You Up." That's your new motto. And yes, this means I have to stop and use the restroom in every store I go to!
  • Wear your heart rate monitor. I don't always do this now because I know that with beta blockers, I can manage grocery shopping without crashing, but I wore it today because I haven't been doing well lately. Set the alarm for your AT (see this post to estimate it), and listen to it - when it beeps, stop and rest, crouching or sitting if you can or at least putting one foot up on the bottom of the cart and breathing slowly and deeply until your HR comes back down.
  • Commit to Slow Shopping. This was my motto today! I'm hoping to start a new trend. This is probably the hardest thing of all for me because I am naturally a fast person. Today, I consciously moved slowly and deliberately - be the ultimate Zen shopper.
  • Avoid lifting your arms too much. I know from using my heart rate monitor that raising my arms over my head raises my heart rate. I was fine most of the time in Target until I went into the dressing room to try on a pajama top - I pulled my shirt over my head and beep, beep, beep!
  • Let someone else bag. Again, moving your arms, lifting things - it all raises your heart rate. Choose a checkout lane with a bagger or let a store employee know that you need one.
  • Ask for help taking your purchases to the car. I was amazed to find that the grocery stores in Oklahoma (where we used to visit my in-laws) do this automatically! It's more self-serve here on the East Coast, but you can always ask for someone to help you - let them help put the bags in the car.
  • Ask someone at home to help bring your purchases into the house. When I first started wearing a heart rate monitor, I was amazed to find that pushing a heavy grocery cart didn't raise my heart rate too much, but carrying even light bags into the house did. Carrying stuff really raises your heart rate dramatically, so get some help. I bring in the frozen/refrigerated stuff myself and leave the rest in the car for when my husband and son get home. If you live alone, ask a neighbor or friend. Sometimes, I shop with a friend - we get to spend time together and she can help me.
So, those are my shopping tips. Do you have any others? What works for you?

Remember - Slow Shopping!

Monday, February 23, 2015

Movie Monday 2/23

We had a busy weekend, with snow days (actually, school was closed for COLD, not snow) tacked on and a houseful of teen boys most of the time, but my husband and I did find time for one movie. I was pretty badly crashed on Friday (yet another yeast overgrowth flare-up), so my husband brought home 5 Guys take-out and a DVD from Redbox - perfect!

We watched Lucy starring Scarlett Johansson. She plays a partying college student away in Taiwan who unwittingly gets mixed up with some nasty characters. They try to use her and several other poor victims in a criminal scheme, but along the way, something unexpected happens - she gets exposed to a drug that allows her to use 100% of her brain, and she develops all kinds of superhuman powers. Morgan Freeman stars as a renowned neuroscientist who explains that humans normally use only about 15% of their brain's capacity. What follows is an international kick-ass revenge fantasy, as Lucy goes after the villains who did this to her while getting in touch with Freeman's character to tell him about what's happened to her. It's a lightweight confection of a movie, basically an action movie with a sci fi theme and lots of very bizarre special effects. We enjoyed it as a fun bit of escapism, but there wasn't much depth to it.

Have you seen any movies lately? What do you recommend?

Sunday, February 22, 2015

Weekly Inspiration: Never, Ever Give Up

Sorry that it's been a few weeks since I've posted a Weekly Inspiration post - crashes, family stuff, big news in the ME/CFS world - you know how it goes. Best laid plans and all....

So, I took some time this morning to watch some TED talks, which never fail to inspire me, and this one in particular caught my eye and then captured my spirit.

It's called Never, Ever Give Up and the speaker is Diana Nyad, the famous swimmer who broke all kinds of records and swam from Cuba to Florida at age 60. Now, you may be thinking, "What could a world-class, record-breaking athlete have to do with me who can barely walk around my own house?" I thought that, too, but she gives a talk that is engaging, funny, and yes, inspiring that applies just as well to us battling chronic illness as it does to athletes trying to achieve their dreams.

It's a short talk but very powerful (and entertaining as well):



I found her talk applicable to us in two ways. First, I thought of my own never-ending quest to find treatments that will help me to improve. I'm not delusional - I know there is no cure right now, and I am way past the point of most spontaneous recoveries (less than 5 years is the usual rule of thumb). But I have spent the past 12 years trying one treatment after another, reading studies, talking to my doctors, and trying anything that seems promising. I haven't found any one treatment that helps a lot, but I have found many treatments that help a little, and those small improvements add up over time, as evidenced by my improvement over the past few years so that I can now do more and have a better quality of life. So, Diana's motto of Never, Ever Give Up resonated with me in that way. I will keep trying new treatments and keep following and supporting the research and keep helping other people to do the same. I never stop trying, and I never stop hoping for a better tomorrow.

The other way that her talk resonated with me is from an emotional perspective rather than a physical one. To Never, Ever Give Up also means to never give up on being happy and finding joy in your life, in spite of your physical limitations. Sure, we all have times when we are down or depressed, but Never, Ever Give Up means to me that while we are trying new treatments and waiting for new research, we can be fully present in our lives and find small moments of joy in every day.

I hope you found Diana's talk as inspiring and entertaining as I did.

What does Never, Ever Give Up mean to you?

Saturday, February 21, 2015

Survey on Access & Quality of Healthcare for ME/CFS

Leonard Jason, renowned ME/CFS researcher at DePaul University is conducting an online survey of ME/CFS patients on their access to healthcare and the quality of that care, specific to knowledge of how to treat ME/CFS.

This is a very important survey, so I urge you to participate at this link. It only took me less than 10 minutes to complete the survey.

Our family has been fortunate in this area for 3 reasons:
  • I happened to stumble upon a local family doctor one year into my "mystery illness" who immediately recognized that I had ME/CFS, after a full year of seeing all kinds of doctors and searching for a diagnosis. She not only diagnosed my illness but knew the basics of how to treat it and was open to trying new things whenever I brought the latest study results to her. I know now, from other ME/CFS patients, just how unusual this is.
  • We have the means to seek out top ME/CFS doctors and travel to see them. My husband has a stable job, and we have been fortunate to see Dr. David Bell before he retired and now see Dr. Susan Levine in NYC. I spent a lot of time and energy finding these doctors and making arrangements for me and the kids to see them. Granted, most of our money goes toward medical expenses and there is not much left over, but I am grateful we have it to begin with.
  • We have excellent health insurance through my husband's job, including out-of-network coverage.
I am well aware that we are lucky in these respects and that the situation is not nearly so positive for most patients with ME/CFS.

That is why it's so important for you to take a few minutes to fill out this survey and make it known just how scarce good quality healthcare for ME/CFS really is.

Friday, February 20, 2015

Opinions & Editorials on the New Name & Criteria

Unless you've been offline for the past week or perhaps living in a cave in the Himalayas, you have probably seen at least some of the flurry of editorials and opinions about the new name - Systemic Exertion Intolerance Disease - and diagnostic criteria for our illness. I wrote about it last week, when it was announced, and included in that post my own opinions, but I've been curious to see what the mainstream media and some of the more prominent figures in our little world think about it all. So, here is a compilation:

The Media
I was thrilled to see that the release of this report was well-distributed to mainstream media news outlets - in all, over 300 articles and stories appeared! Woohoo!! Not all got it right in their reporting (some appeared not to have actually read the report). NBC Nightly News was especially bad in their coverage, which was a huge disappointment. The patient they filmed appeared to be a busy and active mom, despite the voice-over and interview saying she was sick (I'm not doubting she had ME/CFS - but they chose someone whose invisible illness really was invisible).  They capped off the segment with an interview with a "doctor" (she was a rheumatologist who makes frequent TV appearances) who said the best treatments are CBT and exercise! Seriously. With "Exertion Intolerance" front and center in the name. My husband was yelling at the TV screen! I tried to mount a defense and let NBC know they got it wrong, but my efforts were drowned in the bigger news of Brian Williams' suspension.  The Solve ME/CFS Initiative had better luck than I did (their CEO Carol Head was also featured in the segment and was the only bit of accuracy in it!) - they urged NBC to issue a retraction about exercise being a good "treatment" - which they did on their website, though I doubt that many of the millions of viewers who watched the NBC Nightly News will ever see it!

However, some did a good job accurately covering the story and spreading the word:

NPR's article was excellent and accurate and even included a quote from my good friend and outstanding advocate, Jennie Spotila.

The New York Times also ran a good piece (though it was a blog post and not a print article) that was accurate and included some history and quotes from Dr. Rowe, Dr. Bateman, and Leonard Jason.


Science Magazine covered the announcement in their ScienceInsider column and again, did a good job getting the facts right and interviewing real experts.

As always, Cort Johnson of Health Rising did a fantastic job of summarizing the media coverage - this blog post of his includes more excerpts from media outlets like WebMD, MedScape, and Nature magazine.

Our Experts/Our People
It has been very interesting to see the wide variation in responses from our own community of both ME/CFS patients and clinicians, researchers, and other experts. Here's a small sampling:

Jennie Spotilla, advocate extraordinaire, whose blog, Occupy CFS is my favorite source for up-to-date information on advocacy, politics, and inner workings of our illness, wrote a post called Your Move, HHS on the topic that has been on MY mind - what comes next?

Leonard Jason, a well-known and highly respected ME/CFS researcher, wrote a critical editorial on the name change, based on input from patients and his experiences.

Tina Tidmore, an ME/CFS patient and advocate, wrote a very thoughtful blog post on both the criteria and the name that is well worth reading and quite thought-provoking.

And perhaps most importantly, comments on the name change from Dr. Lucinda Bateman, who is not only a well-respected ME/CFS clinician but also served on the IOM committee that recommended the new name.

My opinion? You can read my detailed assessment in my previous blog post, but after having a week to think about it and read all these other opinions and editorials, my opinion is pretty much the same:
  • The criteria is good - a huge step forward since we have NEVER had diagnostic criteria in the US before (a point that many seem to be overlooking).
  • But not great - I would prefer to see symptoms of immune dysfunction (recurring sore throat, swollen glands, feeling feverish, etc.) somewhere in there because those signs were key to finding my own diagnosis (which took a year).
  • SEID is better than CFS (anything is!) but not ideal. I agree that ME isn't scientifically accurate for all patients, and Dr. Bateman makes some excellent points about it already being defined in the UK. I would have preferred something along the lines of Neuro-Endocrine Immune Disease and am confused as to why this hasn't been discussed anywhere. There is plenty of science behind the presence of dysfunction in these 3 systems. I do think there is still the potential for "exertion" in the name to be misunderstood and minimized, but I can live with SEID - for now.
Whew. There's been a lot going on in our world this past week, and hopefully, all of this talk will lead to some action - more research funding and more research!

What are your thoughts?

Wednesday, February 18, 2015

NYC Study Recruiting Patients

The Solve ME/CFS Initiative is helping to recruit study participants for the Pain & Fatigue Study Center at Mt Sinai Beth Israel in New York City. They are conducting a study about Chronic Fatigue Syndrome (CFS). Your participation could help advance knowledge about the cause and treatment of CFS. Despite the vagueness of the study info below, it is specifically focused on ME/CFS aka SEID, not on generalized fatigue. Sounds like a great way to help move research forward!

Contact Michelle Blate at Mblate@chpnet.org and 212.844.6665 with questions or to volunteer.


Tuesday, February 10, 2015

BIG NEWS: New Name, New Criteria!

Well, friends and fellow sufferers, the good news is that we no longer have ME/CFS. The bad news is that we now have SEID: Systemic Exertion Intolerance Disease.

The IOM just announced the results of their efforts to review all the data and research and comb through input from patients and ME/CFS specialists. They have developed a new set of diagnostic criteria and a new name for our illness. Overall, this is fantastic news for all of us patients because with this new criteria comes a campaign to disseminate and inform doctors all over the country. I'm not in 100% agreement with what they came up, but it sure beats what we had.

The Name
Systemic Exertion Intolerance Disease (SEID). It's a mouthful. We finally got rid of the dreaded "f-word," so that's good news. And we've graduated from a Syndrome to a Disease - also good news, in terms of recognition and awareness.

However, I'm not thrilled that this new name still focuses in on just one symptom of our illness. Granted, it IS the central differentiating symptom (Post-Exertional Malaise or PEM), as opposed to fatigue which many illnesses and medical conditions share. However, I'm disappointed that the name is still focused on effects or symptoms rather than on what causes them. I do understand that the exact cause(s) of our illness are not yet fully understood, but experts and patients have known for many years that the basis of this illness is dysfunction in the immune, endocrine, and nervous systems. All symptoms stem from those dysfunctional systems. So, I would prefer one of the Neuro-Endocrine Immune type names that have been considered before.

The Criteria
For the record, we have never actually had official Diagnostic Criteria before, so this is a huge step forward. The criteria the CDC came up with years ago was meant to be used as research criteria.

Without further ado, here is the new SEID Diagnostic Criteria:


It doesn't seem to appear here (which is worrying), but in the presentation, they said there is an addendum that says something to the effect that these additional symptoms may be present:
  • Pain
  • GI problems
  • Sore throat and/or swollen glands
  • Headaches
  • Sensitivity to external stimuli
  • Certain infections can act as triggers
I am disturbed that this list doesn't seem to appear in the official written criteria - I had to go back to the presentation slides to find it.

I think it's great that PEM is now highlighted and required, as it is the single most defining and unique characteristic of our illness. I was also glad to see OI highlighted right in the criteria, not so much for diagnosis but to spread awareness that OI is an integral part of our illness (especially because it is one aspect that is treatable).

I am very disappointed to see that immune symptoms (sore throat, swollen glands, feeling feverish) weren't included because the sore throat was a critical factor for me in finally getting an accurate diagnosis - there were lots of conditions with fatigue but none of them included a sore throat. It was the one thing that told me right from the start that whatever I had was related to my immune system.

One highlight of the panel's conclusions is that co-morbidities no longer preclude a diagnosis of ME/CFS/SEID. In the CDC's 1994 version, if the patient had any other conditions (fibro, IBS, depression, etc.), then they were excluded - again, this is because that criteria was meant for use in research, not for diagnosis. This new criteria mentions common co-morbidities as a diagnostic & treatment tool for clinicians.

Dr. Rowe spoke specifically on pediatrics and explained that the information review they conducted for pediatric cases showed that this same criteria works equally well for children as for adults.

Dissemination
The next step - and perhaps the one that will impact patients the most - is to disseminate this new name and criteria and begin educating doctors across the U.S. The panel emphasized that one of their critical goals was that the criteria would be simple, easy to understand, and available so that ANY doctor, anywhere could use it - primary care doctors, pediatricians, ER doctors, etc. That would be amazing, wouldn't it?

Already today, both the Journal of the American Medical Association and the Annals of Internal Medicine have published announcements about the new criteria - wow! We haven't had that kind of mainstream medical coverage in...well, never. The committee will send the new criteria to all the medical professional organizations, as well as medical publications, in an effort to spread the word.

More Information
This IOM page includes links to detailed information on the new name and criteria.  Here are the Powerpoint slides of the announcement presentation I just watched live. Here is a brief summary report with the main criteria. See the IOM page for more information, including a diagnostic algorithm and key facts.

Is this possible? That a few years from now, regular doctors might be aware of our illness and recognize its signs and know how to diagnose it? Seems like a fantasy, but it could well come true.

Overall, I don't agree with everything the committee concluded, but all of this is a HUGE step forward for ME/CFS...ooops, SEID patients (that's going to take a little getting used to).


Monday, February 09, 2015

Movie Monday 2/9

Our college son who'd been home sick for the past two months moved back to his apartment last week! Woohoo!! Besides being thrilled for him, my husband and I were also glad to be able to catch up on our favorite TV shows that our son doesn't watch. So, we spent our evenings last week catching up on Madam Secretary, Grey's Anatomy, The Blacklist, Sleepy Hollow, Resurrection, The Good Wife, and The Americans (yes, we have too many shows going at once but they are all so good!).

Friday night, we watched a movie...that was neither a thriller nor an action flick! Wow.

We finally had a chance to see Boyhood, which won Best Pictures awards in both the Golden Globes and the Oscars. You may have heard about this ground-breaking movie last year that was filmed over the course of twelve years to capture - in real time - the childhood of one boy, played by Ellar Coltrane. In the movie, he plays Mason, who is six years old when the film opens and eighteen when it ends. It is a unique and effective approach that makes the characters in the movie feel very real. Even though his parents are played by Ethan Hawke and Patricia Arquette, two famous actors, we still fell completely under the movie's spell, as if we were watching a documentary instead of a work of fiction. Mason lives with his sister and his mother. His dad was absent for much of the kids' early lives but moves to Texas to be closer to them at the start of the film. Throughout the twelve years of the movie, their mom remarries twice, the family moves a couple of times, and Mason goes through the typical joys and pains of childhood and adolescence, as well as some more serious struggles with his family. This movie is so completely engrossing and compelling that by the end, we felt like we knew this family in real life. And the next morning, we both said that the movie popped up in our thoughts and dreams all night long! It's really a stunning achievement and a must-see, but be warned - it is a very long movie (almost 3 hours), so start early.

Have you seen any good movies lately?

New ME/CFS Diagnostic Criteria Being Announced Tomorrow

Tomorrow, February 10, 2015, the IOM will release the Report on the Diagnostic
Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
at 11am ET. The event will be available via live webcast at this link.

If you are unfamiliar with the IOM process, here is a summary of what they've been working on that I posted last year.

This should be interesting! So glad this one is in the morning and not during nap time - I should be able to tune in.

Opportunity to Share Your Story

If you became ill with ME/CFS as a child or teen and are now an adult, the Tymes Trust in the UK would like to hear your story.

They are compiling an anthology of stories from adults who got ME as a child, in order to provide support for sick young people and their parents and to help educate the medical community about the special plight of children with ME.

You can read the details and contact information here.

The more we share our stories with the world, the better the outside world will understand the severity and devastation of this illness, especially on young people...so let your voice be heard and tell your story!

Friday, February 06, 2015

Getting Back to "Normal"

Well, not real normal, but we are getting back to our own version of normal!

I explained last week that we now know our college son's 2-month long couch-bound relapse was "just" an ME/CFS-type crash, probably triggered by the flu in November. Well, in the last week, we saw him come back to life! Each day, he seemed more alert, was sitting up more, and seeming more like himself. He was finally able to get back to some schoolwork, and as the week went on, he began to smile and talk more and even laugh. We knew things were moving in the right direction when he began teasing his younger brother again! It was such a relief to see him return to his old self.

On Tuesday, he moved back to his college apartment, thrilled to be back with his friends. He's spent this week studying and making up tests and final exams that he missed at the end of fall semester. He will be ready to start the spring semester on Monday, with his peers. What a relief! There were plenty of times this past month when we wondered if he'd have to take a semester off.

As usual, he is signed up for just 3 classes, but he manages them pretty well and enjoys living on his own with his friends. I know he is thrilled to be back to his own version of normal, too.

Of course, I am still worried about him! I know he won't be able to stick to his diet on his own as well as he did while home, and any sugar or grains can have a fairly immediate negative impact. He's also jumping back into his social life, with plans to go to the movies with friends tonight and go snowboarding (!!) tomorrow. But he is 20, and I need to let him live his own life and maybe make his own mistakes. It's hard to let go when your child has been through so much suffering.

Here at home, I am free! I thoroughly enjoyed getting back to my own routines this week, embracing the quiet solitude in the house, resuming a more regular exercise routine, and having more time for writing. I have been catching up on my favorite TV shows at lunchtime, the ones the males in my house don't want to see, and my husband and I have been catching up on our own favorite shows in the evening (our high school son has his own busy social life).

So, life is returning to normal for us, and we are grateful.

Thursday, January 29, 2015

Living with Uncertainty

Living with ME/CFS means living with uncertainty. This crazy illness is often characterized by ups and downs in seemingly random patterns. As someone who is analytical and likes data & facts, this constant stream of mysteries can drive me crazy.

If I wake up with a sore throat, I immediately start thinking about what could have triggered it. Did I do too much yesterday? The onset of aches in the evening (which is actually very common for me) sets my head spinning – Was it the trip to the grocery store?  The walk two days ago? Was book group too much for me this week? The slightest sniffle can put me in detective mode – Have I been exposed to a cold? Did something set my allergies off? Should I start antiviral supplements or allergy supplements?

The past two months at our house have been one big ball of mystery and uncertainty. Our college son came home sick in mid-November with a high fever (unheard of for him), severe sore throat and swollen glands. The fever alone was alarming, since like many of us with ME/CFS, he has a lower-than-normal temperature of about 97.5 F typically. The highest “fever” he’d had in the past 10 years with ME/CFS had been 99 and all of a sudden, his temperature was spiking up to 103 and 104. This was not “just a crash.”

We took him to Urgent Care that weekend, and they did a mono spot (quick mono test) that came back positive (note: mononucleosis is known in the UK as glandular fever and is caused by the Epstein-Barr Virus – EBV). Well, that explained everything. Previous EBV testing had shown that he’d never been exposed to mono before, and I’d dreaded this happening ever since he was diagnosed with ME/CFS since mono is a known trigger for it.

However, that explanation started to fall apart the following week. Given the uncertainties of ME/CFS, our primary care doctor ordered EBV blood tests, just to be sure. They came back negative. We floated all kinds of theories – maybe he wasn’t making the antibodies to EBV? Maybe the test had been done too soon? And there we were again, stuck in a state of mystery and uncertainty.

His illness certainly seemed to follow the classic pattern of mono – but then again, ME/CFS tends to mimic mono anyway. His high fever lasted about a week, his severe sore throat a few weeks, leaving him totally exhausted and with no energy at all. At first, even reading required too much energy…and he normally loves to read. As weeks passed into months and he stayed on the couch, we grew more and more worried. Because mono is a known trigger for ME/CFS, it could easily cause a long-term worsening. As the holidays passed and then January, we wondered whether he’d be able to return to college when spring semester started in February. Would he even be able to catch up on his remaining work from fall semester?

Last week, during a routine visit to his Lyme doctor, bloodwork was run, and I asked the doctor to include another EBV test. The results came back early this week – EBV was still negative, showing no sign of exposure now or in the past. Moreover, his white blood cell count was very low, and a few other CBC measures were high. Now, my analytical side kicked in again and my tenuous acceptance of uncertainty disappeared. What was going on? Why wasn’t he getting better? If not mono, then what??

I consulted with three different medical professionals – our primary care doctor, our dietician/biochemist, and an Infectious Disease/CFS specialist we see. They all said not to worry about the low white blood cell count – it was just an indication he’d been fighting an infection and should come up on its own. The dietician mentioned some possibilities for the other abnormal lab results, and our doctor ordered the blood tests she suggested. It was the ID/CFS specialist who came up with the answer that set my mind at rest, though.

She said that with two negative EBV tests, he hadn’t had mono and that it was likely he encountered some other nasty virus that triggered a very severe crash. I’d figured as much myself but was still mystified over the initial high fever. Then she added an offhand comment, “Maybe it was even influenza,” and the lightbulb went on! Three days after our son came home sick in November, my husband got the flu. At the time, we thought, “Wow, what a rash of bad luck. Good thing we cancelled our Thanksgiving travel plans,” but now the puzzle pieces were fitting together.

We may never know for sure what knocked our son down so hard, but it is very likely it was the flu. As is typical with viruses and ME/CFS, he didn’t fully “catch” it (no cough or congestion at the time), but he was exposed to it, and it triggered a severe immune response (i.e. ME/CFS crash). Flu explained the rare fever, and it was likely he was carrying the virus and infected his dad.

Even better than an explanation, our son has been – finally – starting to improve the past few days. He’s been able to do some schoolwork each day, and he’s scheduled his make-up final exams for next week. He actually went out on his own yesterday – first time in 2 months! – to drive down to his campus apartment and pick up some things he needed. Most of all, we have seen him coming back to life – smiling and laughing and even teasing his brother.

We are hugely relieved that he is beginning to improve, but you wouldn’t believe how much better I felt just having a theory that made sense and fit the circumstances! Having a logical explanation that fit the blood test results and the symptom pattern made me feel so much better.

It was the same when I was finally diagnosed with CFS a year after getting sick – such relief at having a name for my illness! Not only that, but with a name, I was able to start learning about my illness. This was not just an emotional comfort to me but had very real, practical effects – understanding my illness allowed me to regain some control over my life. This was especially true of learning about the exercise intolerance of ME/CFS – suddenly, I could see a pattern to the seemingly random ups and downs and could avoid some of the crashes. Same thing when I learned about Orthostatic Intolerance a few years later.

So, I guess my pathological need to explain things, to find the cause for every effect, to solve the never-ending mysteries of ME/CFS has some practical benefits. Living with ME/CFS for almost 13 years now, I’ve become more accustomed to living with uncertainty (though I still don’t like it!). I’ve also had to accept that I can’t always find answers, that sometimes a Why goes unanswered. Our family has learned a lot about living with so much uncertainty. We’ve certainly become accustomed to last-minute changes and cancellations, as this past holiday season showed!

How about you? How do you live with the uncertainties of ME/CFS? Any other analytical types out there like me who also constantly try to answer why?