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?

Monday, January 26, 2015

Movie Monday 1/26

Well, my college son is STILL home sick, sick wiped out from mono in November. Spring semester starts in 2 weeks, so the count-down is on! He is determined to be ready to move back by then. When he got up today and I asked how he felt, he said thoughtfully, "Not terrible." That's an improvement!

So, we are still watching a lot, though last week we focused more on TV shows. He and I are making our way through the early NCIS seasons, currently on Season 3, at lunchtime. With my husband, the three of us have been watching Elementary, Scorpion (love that show!), The 100, and we just started Backstrom last night (great so far). We finished The Mentalist season 6 and are still working on Castle season 6, both Christmas gifts for the boys. And the whole family enjoys Bones and finally finished Firefly - we made that one and only season last! I have heard good things about True Detective and Black Mirror, but we are trying to find someplace where we can see them (we don't have Netflix or Hulu Plus).

As for movies, we watched one on Friday night:

We watched The November Man, starring Pierce Brosnan, one of six films released last year featuring, as one reviewer put it, "aging hitmen coming out of retirement for one last job." Yup, it's true - count 'em up. We enjoyed this one. Brosnan is an ex-CIA agent living a quiet life when he is asked to help extract an old colleague (and his ex-lover) from an undercover job in Russia that has turned dangerous. He does this but is shot at in the process by a group of agents, one of whom he recognizes as the young man he himself trained years earlier. It's a bit confusing at first because it seems like it's US agents trying to kill other US agents (yup, it is), and you aren't sure who the bad guys are. So, this movie is full of suspense, with a nice complex plot that keeps you guessing and, of course, plenty of action including the usual car chases and shooting. Can you tell I am tiring of thrillers?

Which TV shows do you enjoy? Have you seen any good movies lately?

Saturday, January 24, 2015

My ME/CFS Improvements in 2014

I can't believe it's almost the end of January already! Things have been very busy here, my college son is still home and incapacitated by mono that hit in November, and I am behind in pretty much everything. But I finally took some time to sit down and look back at how I did this past year, with respect to my illness, and I was thrilled to see the improvements in black and white!

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). I just jot that number in the lower left corner of the day on a monthly calendar before bedtime. I also track how much exertion I had that day, out of 5 (5 being a lot and 1 being little).  At the end of each month, I calculate a few quick numbers: average of how I felt, average exertion, and % of days crashed (for me, that's a day rated 4 or 5).

This week, I took a look back at all those numbers and put them in my Excel spreadsheet (sorry, I used to be an engineer!), and was thrilled to see the positive improvement in all areas!

How I felt overall improved to an all-time high average of 2.3, better than anytime since I got sick 13 years ago! That's a 10% improvement over 2013 which is really great.

My % of days spent crashed in 2014 reached an all-time low of just 8% on average. In my worst years, I spent 20 - 23% of my time crashed and unable to do anything. My worst month last year was once again October when bronchitis hit, as it was in 2013 (which stinks because I love the fall!). However, in October 2014, I was crashed 32% of the time, while in October 2013, I was crashed a whopping 52% of the days! That's a big improvement. I noticed that this year when I went through that rough period, I had a lot of days that I rated a 3 - where I had symptoms and didn't feel good but was still functioning.

I was also excited to see the upward trend in exertion. In 2014, my average exertion level (out of 5) was 3.7, the highest it's ever been since I first got sick with ME/CFS. My exertion levels have been steadily increasing over the past 5 years or so. In real life, that means I am able to do more, to be more active, and am spending less time lying on the couch and more time living my life.

So, where did all this improvement come from? Well, I keep track of that, too! Each year, I set goals for myself and try to set measurable objectives for each one (here are some examples of my health-related goals from 2013). I also keep track of any new treatments or approaches we have tried.

New treatments or changes to treatments in 2014 that might have helped me improve include:
  • Switching to a Paleo diet in February (if nothing else, this helped get control of yeast overgrowth which I discovered was a HUGE issue for me)
  • Focus on controlling yeast overgrowth - changing the diet, adding more probiotics, adding a bunch of anti-yeast supplements, plus some prescription antifungals when it flared up. We've also tried mouthwashes and even probiotic toothpaste when the yeast flares up. Here are details of our experiences with yeast overgrowth and what has worked.
  • Changing Dosing of Low-Dose Naltrexone - after many years on LDN, we switched to taking it every other day and saw a nice boost in energy, just like when we first started it. Details on LDN and dosing here. We also further refined our dosing schedule for inosine and switched from Rx Imunovir to inosine (sold as a supplement in the US). More on treating immune dysfunction, including use of inosine, here.
  • Increased 5-MTHF Dose - Per our dietican/biochemist's advice, I increased my dose of 5-MTHF (a form of folate) from 400 mcg a day to twice a day. She said that I shouldn't go too high because of my genetic profile but that small increases might help. This has to do with methylation, something we have been focusing on for a couple of years now.
  • Continued to Exercise in a way that doesn't crash me - For the past several years, I have focused on VERY gradually improving how and how much I exercise. The result is improved muscle tone (which helps OI and other aspects of ME/CFS) and improved stamina (which helps everything!). Last year, I improved a small amount on how much I walk (my goal is 3 times a week) and held onto my gains from the previous year to do muscle-building exercise at least twice a week (which I managed about 70% of the time) and starting every day with 10 minutes of gentle, on-the-floor yoga.  I have managed this with the help of beta blockers, using a heart-rate monitor, and listening to my body, going very, very slowly. Exercise has long been a dirty word in our world since it causes post-exertional crashes. This exercise intolerance is a key characteristic of ME/CFS; however, deconditioning only makes us sicker. Newer advice from the top ME/CFS doctors indicates that even the sickest among us can exercise safely and in a way that won't make us crash by following some specific protocols. For instance, if you lie on your back, your heart rate won't rise as much, and you can begin with tiny, tiny leg lifts while in bed. My muscle-building work is all done lying on the ground, and I've really made some gains this way! Dr. Klimas has even produced a series of videos to help explain these concepts and get you started.
So, all in all, it looks like 2014 was a pretty good year for me, health-wise, despite my two months of being crashed this fall. I tried some new things, improved the dosing of older treatments, and continued to make gains with exercise and conditioning. I was more active than I have been at any time since first getting sick in 2002, I felt better on average, and I spent less time crashed. Woohoo!

Next up, I finally need to tweak my goals and objectives for 2015!

How was 2014 for you? Did you try some new things? Did you improve last year or have a worse year?

There are lots and lots of effective treatments available for ME/CFS, including medications, supplements, and lifestyle changes. I have found that nothing helps a lot, but there are a lot of things that help a little...and those little improvements add up over time. Maybe 2015 will be your year to improve!

Monday, January 19, 2015

Movie Monday 1/19

Sorry I didn't write on the blog all last week. I had something scheduled every single day (a situation I try to avoid) so was out running around constantly, just getting home in time for a late lunch and collapsing until the next day when it started all over. Whew.

Our college-aged son is still horribly sick and couch-bound, after getting mono in November (on top of his ME/CFS and Lyme & other tick infections). It's getting frustrating and depressing, for him and for us.

As usual, we helped to keep him amused with lots of his favorite TV shows and movies, so it was another movie week filled with mostly thrillers! As he and I settled in with a thriller Thursday night, with his dad out of town and his brother gone on a ski trip, he sighed and said, "Just what the doctor ordered." Movies can provide that escape hatch when you need it. Here's what we watched:

Thursday, he and I continued our Liam Neeson marathon (Taken and Taken 2 last week) with A Walk Among the Tombstones. Neeson plays Matt, an alcoholic ex-cop who works as a private investigator. He's hired to find whoever kidnapped and killed the wife of a guy whose brother goes to Matt's AA meetings. Before long, he realizes the case is bigger and more complicated than it first appeared, and it becomes a personal  quest of his to find the psychos who are responsible. Along the way, he picks up a wise-cracking but kind black kid living in the streets as a sort of partner. It was a very good movie, with plenty of suspense and a good mystery, plus some heartfelt emotion as the resolution of the case slowly begins to heal both Matt and his new sidekick.

Friday night, when my husband got home from his trip, the three of us watched Guardians of the Galaxy, one of the most popular movies of 2014. This one was off the thriller track, though still filled with lots of action. It's a sci fi superhero movie from Marvel but with plenty of humor and a bit of tongue in cheek. It's about a group of misfits from around the galaxy, including Chris Pratt as Peter Quill who was abducted from earth as a child. Another of those misfits is a living tree that walks and (sort of) talks (he's pretty much unbeatable in a fight), and another of them is a wise-cracking genetically altered racoon named Rocket who works as a bounty hunter. Ok, that sounds kind of stupid, right? Well, it kind of is, but in a warm & funny way. As you would expect from a superhero movie, these misfits end up with the fate of the entire universe in their hands and decide to set aside their differences and selfish goals in order to save the galaxy. It's a fun ride with a really awesome 70's soundtrack (compliments of the mix-tapes and Walkman Peter had in his backpack when he was abducted). Even though my son referred to the songs as "old-timey music," he did enjoy the music, too. There is nothing too dark or disturbing about this movie - it's good for some old-fashioned escape, adventure, a few laughs, and good music.

Finally, we watched Gone Girl (I know, two recent releases in a row - that's a record for us!). My husband and I both read the book last year, though our son hadn't. All three of us enjoyed the movie. If you were somehow living in a cave during the Gone Girl phenomena, it is about a marriage between Nick and Amy that seems ideal on the surface but is revealed - bit by bit - to have plenty of cracks when Amy disappears suddenly. There is lots of psychological suspense in this film, as you go back and forth trying to figure out just who is the bad guy. Some of the detail of the book was left out, but it ends in the same unsatisfying (but clever) way. The two lead actors - Ben Affleck as Nick and Rosamund Pike as Amy - both do an outstanding job in their roles. By the way, my husband and I both enjoyed another Gillian Flynn novel, Sharp Objects, more than Gone Girl (you can read my recent review here).

Have you seen any good movies lately?

Friday, January 09, 2015

Weekly Inspiration: How and Why to Forgive

I have been struggling a lot lately with forgiveness in my personal life. Despite wanting to let things go, I know that I am holding onto a lot of old hurts and resentments, especially with one family member in particular. Things came to a head over the holiday season, as they do occasionally, and we had a huge fight, and all those old resentments that I was trying to forget came to the surface again. Most of these hurts date back to the first years of my illness, when I felt like I really needed my family - perhaps for the first time ever in my otherwise content life - and they weren't there for me. There was a lot of denial on this side of the family, and I was deeply, deeply hurt. Those wounds are still tender now, almost 13 years later. I wrote more about my ups and downs with family and what I have learned in this older post (very funny and telling that when I wrote this post in 2012, I thought that all those old hurts and resentments were behind me!)

After this latest blow-up at Christmas-time, I realized I needed to focus more on forgiveness. I've tried in the past, but I'm obviously not completely succeeding. Holding onto this resentment is not only harming my current relationships, but it is also harming my health - I can feel how those resentments eat away at me, cause me stress, and make me sicker. I know that I need to recognize that the people who hurt me are not going to change, and, in this case, won't ever even admit that they did anything wrong or apologize (to do so, they would have to admit to themselves how much they hurt me). I realize it's up to me - I need to move past these old hurts, and I need to forgive.

In my search for support, I came across this wonderful playlist on TED.com: How (and Why) to Forgive. It's a collection of 6 short talks, all on aspects of forgiveness. There are excellent talks on compassion, on the Golden Rule, and even on forgiving a parent that I found directly applicable to me. But even the talks that I thought at first didn't apply to me - like the first few about forgiving strangers whose actions dramatically harmed someone or changed their life - are also applicable. They made me think, "If these people could manage to forgive these strangers who harmed them so much, then certainly I can forgive my family member with whom I also have so many wonderful, loving memories in addition to the hurts." And I dare you to watch the short talk from the two mothers on opposite sides of 9/11 without a tear or two!

In short, this weekly post is all about inspiration, and these talks have all inspired me. Check them out for yourself. Playlist: How (and Why) to Forgive.
(sorry - since it's a whole playlist, I couldn't imbed the video this time - you'll have to follow the link to the TED website)

I know from lots of discussions with others with ME/CFS that we all have hurts and resentments in our lives - the friends and family who don't understand, who weren't there when we needed them most, who continue to say and do hurtful things. Whether you want to repair and maintain those relationships or not, I think we can all benefit from forgiveness and letting go of that black scourge of resentment that makes us sicker.

What are your hurts and resentments that you need to forgive? Better yet, please let me know if you have been successful in forgiving someone who hurt you or any other resources that might help me in my own quest.


Monday, January 05, 2015

Movie Monday 1/5

Last week, I wrote about all the scary movies my son and I watched while my husband was out of town. This past week was Thriller Week! My younger son was out of town, so my husband, our college son, and I binged on thrillers (their favorite kind of movie!). Although I am starting to yearn for some girly TV and movies, after having our college son home sick the past 6 weeks, these were all excellent thrillers:

On New Year's Eve, our college son (who's had mono on top of his ME/CFS and Lyme and now has bronchitis, too) dragged himself off the couch to go to his best friend's annual New Year's Eve party. Our high school son was at the beach with his girlfriend's family, so it was just my husband and I! We chose a free movie on Amazon Prime: Hours, a thriller set during Hurricane Katrina in New Orleans. We used to live in NOLA, so this was of great interest to us. Nolan brings his wife, Abigail, into the hospital just as the hurricane hits because she has gone into labor five weeks early. His wife dies in childbirth (no spoilers - this is in the first minutes of the movie), but their baby girl survives and is placed on a ventilator. Soon, the hurricane hits hard, and the hospital is evacuated, but no one seems to have the equipment to transport the baby with her ventilator. Eventually, Nolan is left all alone, with his newborn infant relying on the machine to survive. The power goes out, everyone leaves, looters take over...Nolan and the baby face unbelievable odds. It is a fast-paced, heart-thumping survival tale that is surprisingly riveting given that Nolan (played by Paul Taylor) is often the only person on the screen.

On New Year's Day, with all of us wiped out and recovering (it's really not fair that we can't drink but still feel horribly hung-over), the three of us decided to splurge and actually buy a movie on Amazon Prime. My son really wanted to see Taken, since we've been inundated with previews on TV lately for Taken 3. Liam Neeson stars as Bryan, an ex-CIA operative who is trying to rebuild his relationship with his 16-year old daughter, Kim (played by Maggie Grace or as we call her, Shannon, after her character on Lost). Against his wishes, she takes off to Europe for the summer, though he has insisted she take an international phone and call him to check in. During her first check-in call, his worst fears are realized as she and her friend are kidnapped. Friends of his in law enforcement guess that she has been taken by white slave traders from Albania and that he has only 72 hours to find her before she disappears forever. Bryan sets off on his own, using all of his questionable "skills" to try to track her and the men who have taken her. It's a nonstop action thriller, with lots of car chases through the streets of Paris, guns, and fights. And it's every parent's worst nightmare. The moment it ended, our son said, "We have to see Taken 2!"

So, the next day I went to the library and borrowed Taken 2 which we watched last night. It's the same kind of high-action thriller with the same characters. The Albanian mafia wants revenge against Bryan for shooting their sons, brothers, etc. They kidnap he and his ex-wife while they're on a trip to Turkey, and Kim has to pitch in, with her father's instructions, to help rescue her parents. Again, lots of action, car chases (this time through the narrow streets of Instanbul), shooting, and fighting. As with Taken, the actors all do a great job and the heart-thumping action is nonstop. Both are excellent thrillers. Now, we'll have to see Taken 3 when it comes out!

On TV, we've been making our way through the boys' DVD Christmas gifts - season 6 of The Mentalist and season 6 of Castle, two family favorites.

Have you seen any good movies lately?

Saturday, January 03, 2015

New Heart Rate Monitor

My favorite Christmas gift this season was a surprise - my husband gave me a new heart rate monitor, a Mio Alpha, that works without a chest strap! I wondered whether these new models were any good, but it actually works much better than my old ones with chest straps...and it is so much easier to use that I have been wearing it a lot more.

My new Mio Alpha - love it!

In case you are wondering why someone with ME/CFS would want a heart rate monitor, check out this post on monitoring heart rate in order to prevent post-exertional crashes. It really works, and is an excellent way to regain some control over your life. I also take beta blockers to lower my heart rate, which has greatly improved my ability to be active without crashing. Between the beta blockers and the heart rate monitor, my last two years have been far more active. I can now cook meals, go to the grocery store, take walks and short hikes - all without crashing afterward! And even when I am not so active - like now, typing on my laptop - I can manage sitting up most of the day instead of lying down all day like I used to. These two things together have really changed my life and improved my quality of life greatly.

This new heart rate monitor represents another step forward for me. The Mio Alpha just goes around your wrist, like a watch, and detects your pulse in your wrist. Previously, I had two different Polar brand heart rate monitors, both of which used chest straps. The first one worked quite well for a while. I bought a new chest strap when it quit working consistently, and that helped for a while. Last year, my husband got me the newest Polar model (FT4). I had trouble with it right from the first day. The instructions said to moisten the chest strap under water - that method worked fine with the older model, but the new one didn't have the absorbent pads on it, so water just ran off. As a result, I couldn't get a consistent reading from it. A friend recommended using electrode gel instead of water, and that worked a little better but it was still not reliable. Besides, having to carry the gel with me and go through the trouble of half-stripping down to get the chest strap with gel on me was very inconvenient.

I went back to using my old Polar for a while this past year, but eventually, neither one was reliable. I'd wet the chest strap and/or smear it with electrode gel, but while wearing it, my reading would suddenly go to 0 or over 200 or I'd just get an error reading. It got to the point where during a 20-minute walk, it was only reading correctly for about half the time. Very frustrating.

I am thrilled with the new Mio Alpha. It provides consistent readings - I haven't seen the reading go out a single time since I got it on Christmas Day. It seems to be very accurate - readings on my neighborhood walk (which I've done hundreds of times) track closely to what the Polars showed (when they worked!). And best of all, it is incredibly convenient! I can put it on my wrist in the morning and just forget about it until I need it. Then, when I go for a walk or put in a load of laundry (which has a surprisingly severe effect on heart rate!) or do anything active, I just push a button, and it tracks my heart rate - accurately and consistently.

One final word. There's been a recent article making the rounds lately about wrist heart rate monitors not being as accurate as the ones with chest straps. Note that the Mio Alpha (and perhaps there are other brands) is a continuous heart rate monitor - that's pretty much all it does. The article is focused more on the new fitness bracelets that are so popular - Fitbit and other brands - that track all sorts of data and send it to your smart phone. Those do NOT provide a continuous heart rate readout - you have to push a button to see your heart rate at that moment - and apparently, the article says those readings aren't all that accurate. For people with ME/CFS, you really need a continuous heart rate monitor - one that gives a constant readout of heart rate and where you can set an alarm for your Anaerobic Threshold (AT), so you know when it's getting too high. You can still use a Fitbit or similar device for other purposes, but we need something more constant and accurate for heart rate, if you want to prevent crashes.

So, I am starting the new year out well, with a wonderful new heart rate monitor to help me be even more active with even fewer crashes this year! I have taken a walk outside almost every day since Christmas, so I am off to a good start!

If you want to know more on this topic, there is an excellent Facebook group called ME/CFS - Pacing with a Heart Rate Monitor that is focused solely on this subject.

On a hike with my family last week - sunshine makes me happy!

    

Monday, December 29, 2014

Movie Monday 12/29

Hope you are enjoying the holiday season! This is going to be an oddly timed Movie Monday - no holiday-themed movies for us the past two weeks, but my son and I binged on scary, creepy movies the week before Christmas! My husband was out of town, so we decided to watch all the movies we've wanted to see that he refused to watch us...which are the scary ones or thrillers where a child is involved. All of these were very good, though I did suffer from a few chase dreams that week! So, if your illness is such that your sleep can be disrupted by too much adrenaline, then better to watch these early in the day.

We started with The Call, a thriller starring Halle Berry as Jordan, a 911 operator working in L.A. Jordan is experienced and very good at her job, until the day she makes a mistake that results in a teen girl being murdered. That incident is so disturbing to her that she loses her confidence and moves into a training position instead. One day, taking a group of 911 operator trainees through the bustling call center, an inexperienced operator gets a call from a terrified teen girl named Casey, played brilliantly by Abigail Breslin, who's been abducted and is in the trunk of a speeding car with a disposable phone that doesn't have a GPS chip. Jordan instinctively takes over the call, as the city's emergency services mobilize to try to find the girl before it's too late. Jordan and Casey bond over the phone, as the situation becomes more and more dangerous. Eventually, Jordan takes things into her own hands and sets out to find the girl before she ends up like her previous caller. This is a taut, edge-of-your-seat thriller with excellent acting that we both loved.

Next, we watched a creepy ghost story we've both been dying to see, The Woman in Black starring Daniel Radcliffe of Harry Potter fame. I've heard rave reviews of both the original book and the movie adaptation. The story takes place in an isolated British town sometime in the past (I'm guessing maybe 1910-20 based on lots of horse-drawn carriages and one rare car in the town).  Arthur Kipps, played by Radcliffe, is a lawyer who's been sent to settle the estate of a woman who lived outside town in a house surrounded by a deep marsh that becomes a small island when the tide comes in. Paperwork in the house is a mess, and Arthur decides to spend the night there to sort through it all and finish quickly, so he can spend the weekend with his son and nanny (his wife died in childbirth). Something strange is going on in town, though, and the townspeople don't want him staying at the house - or even staying in town at all. He gradually discovers a ghostly presence bent on revenge. It's a very creepy movie, filled with dark, foggy nights and mysterious, spectral occurrences. We both enjoyed it very much, and my son was excited afterward to show me a trailer for a sequel!

Finally, we watched Prisoners, another thriller we've both been wanting to see that my husband refused to watch because it deals with two little girls being kidnapped (he still wouldn't budge when we explained it's about the investigation, not the girls). Hugh Jackman plays Keller, father of 6-year old Anna, while Terrence Howard plays the father of Anna's best friend, Joy. The two girls disappear on Thanksgiving evening playing outside, while the close family friends enjoy the holiday together. Jake Gyllenhaal plays Detective Loki who investigates their disappearance. Following a lead of an old RV parked in the neighborhood that day, Loki quickly apprehends Alex, a local man with diminished intelligence, but there is not enough evidence to hold him. Crazed with grief and panic, Keller turns vigilante and takes matters into his own hands, while Loki continues to investigate the case. This is a fast-paced and unpredictable thriller, filled with unexpected twists and turns that kept us guessing right up until the final moments - it was our favorite one of the three.

Have you seen any good movies lately? Scary thrillers or sweet holiday films?

And if you like to read, check out our Bookish Christmas, with the books we gave and received as gifts this year, and today's What Are You Reading Monday on my book blog to see what we've been reading this holiday week.

Sunday, December 28, 2014

Weekly Inspiration: Laura Hillenbrand

Most people with ME/CFS are aware that our #1 celebrity who shares our illness is the highly-acclaimed author Laura Hillenbrand, who wrote Seabiscuit and Unbroken. Both books spent hundreds of weeks on the best-seller lists and were made into very popular and acclaimed movies.

Much of the general population, however, has no idea that Hillenbrand has been horribly ill for the past 27 years and is mostly housebound. Even fewer people know that her horrible illness is ME/CFS. Because she is rarely able to leave her D.C. townhouse, she's not in the spotlight like other brilliant authors. She's not able to give book readings at bookstores, go on talk shows, or even attend the recent gala premier of Unbroken. So, her inspirational story and her life often stay in the shadows.

I was thrilled to see that the New York Times recently published an excellent interview with Hillenbrand that highlighted her unique challenges and little-known illness in an article titled The Unbreakable Laura Hillenbrand. It's not a perfect article, and the description of ME/CFS is sparse (clearly not much background research was done), but it's a very good article. The author does focus on Hillenbrand's illness and mainly on its effects on her research and writing processes, and it provides some much-needed attention to our illness which is rarely seen in mainstream media.

For a more complete version of Laura's story of ME/CFS, check out the wonderful personal essay she wrote herself, A Sudden Illness, that was published in the New Yorker on July 7, 2003. Here on the New Yorker's website, you can see how the essay appeared and read an abstract. A blogger has posted the entire essay in a pdf file.

So, Laura Hillenbrand is this week's Weekly Inspiration, both for her efforts to help publicize her illness and the effects of ME/CFS and also for her amazing achievements in the face of such monumental challenges. As a writer myself, I find her accomplishments truly inspirational and nothing short of miraculous.

Wednesday, December 24, 2014

A Plan B Holiday Season!

I mentioned here last month that we had to cancel our Thanksgiving week plans to travel and see family because my college son came home sick with mono that week (on top of his ME/CFS, Lyme, and other tick infections). Well, now we've had to cancel two more trips! When I wake up feeling bad and have to cancel my plans for the day, I usually call it a Plan B Day (my way of coping and adjusting), but this is turning out to be an entire Plan B holiday season!

Staying home for Thanksgiving turned out to be a doubly good thing when my husband came down with the flu and spent a full week in his recliner. One week later, my 16-year old son came home from a soccer tournament with a concussion. We took him to Urgent Care the next morning but weren't too worried - we figured his headache would clear up in a day or two. Two weeks later, we took him to a special Concussion Clinic in our area to see our local specialist.

All in all, our younger son missed two weeks of school - he returned this week for the last day and a half before winter break. Medication prescribed by the concussion specialist helped his headache go away, but even short car rides make him motion sick. The specialist told us last week no car rides over 15 minutes.

So, we once again found ourselves cancelling travel plans - both our weekend plans to travel to CT to celebrate Christmas with our family (I invited them here instead, but they declined - a long story) and also our long-planned vacation in the Florida Keys this week and next. We were supposed to leave the morning after Christmas for a 20-hour drive! Yeah, way out of the question.

So, as always, we are trying to roll with the changes and make the best of things. Our older son is finally showing small signs of improvement after a month home sick - he managed two social activities at our house this past weekend - and our younger son seems to get better every day, as he recovers from his concussion.

The chance to spend the full holiday season relaxed at home is actually a rare opportunity. We normally leave for Oklahoma the day after Christmas to visit my father-in-law. We just moved him out here near us this fall (hence, the rare December vacation plans!), so it's been more than 10 years since we stayed home for New Year's Eve and weren't traveling the week after Christmas. The kids are glad to have some time during the break with their friends. And I am looking forward to starting off the new year not exhausted from travel and with a pile of unpacking and dirty laundry to face!

Hope you are also ready to enjoy the holiday season with your family and friends, no matter what life (or ME/CFS) throws at you!

Our annual Cookie/Grinch party with our oldest friends, a favorite holiday tradition!


Saturday, December 20, 2014

Weekly Inspiration: Slow Down!

Did you know there's a whole Slow Movement going on? People advocating Slow Food, Slow Schools, and just generally slowing down your life. As technology continues to speed up our lives, this idea is becoming less fringe and more mainstream.

Those of us with ME/CFS were way ahead of the trend! Our lives are all about slowing down. Interestingly, I actually left my travel-heavy career two years before getting sick, in an effort to slow down our lives with two small children. Ironic, right? About the time I was considering going back to work part-time to bring in some income, ME/CFS came along and slowed me down for good.

But if you're like me, our fast-paced modern world still sneaks into my life (especially my online life), and I still battle some bad habits from my pre-illness days. In fact, while listening to this TED talk about slowing down to enjoy life more, I realized I was seriously multi-tasking, eating breakfast while making a grocery list while watching a talk on slowing down! Yes, I see the irony.

I really enjoyed this short talk - the presenter makes some excellent points, and I loved the story about reading to his son and their relationship. In this hectic holiday season, I think we can all use a reminder to set aside the electronics, slow down, and enjoy our families:



Hope you are enjoying the holiday season with your family!

How do you slow down and make time for family?

Wednesday, December 17, 2014

$500,000 Reserach Grant for ME/CFS Epigenetics Study

Great news for the new year!

The Solve ME/CFS Initiative (formerly the CFIDS Association) has been granted $500,000 to further the study of epigenetics (basically how our genetic profile interacts with our environment and affects us) in ME/CFS. They are partnering with well-respected ME/CFS clinician and researcher Lucinda Bateman and her Fatigue Consultation Clinic and also Patrick McGowan of the University of Toronto to further the epigenetic research they began in 2012.

You can read all about the details in this Solve ME/CFS Initiative blog post.

What a wonderful way to start a new year!

Tuesday, December 16, 2014

Movie Monday 12/15

We watched two holiday movies last week, both modern classics, as well as starting in on our collection of classic children's Christmas specials on VHS. My college son is home with mono and his younger brother has a concussion and can only watch a small amount of TV, so the familiar, short Christmas specials are just right for him.

I finally convinced my older son to watch Love, Actually, which is one of my favorite holiday movies - and also one of my all-time favorites generally. He wrinkled his nose and said, "It's a romantic comedy," but I explained it's really about all kinds of love including a father and his stepson, brother and sister, and even long-term friendship. Mostly, I think he agreed to it because I was upset that night - had a bit of a meltdown from all the stress lately - and he was humoring me. But, of course, he ended up loving it! You just can't help but love this feel-good movie. It takes place at Christmas time and involves a huge all-star ensemble cast (it was the first movie to take this approach of multiple, intersecting storylines peopled by big stars and has been much-copied since). It moves back and forth between different storylines, all involving some form of love, gradually surprising you with how some of them are connected. So, Hugh Grant plays the new Prime Minister of Britain who has a crush on his assistant, while Bill Nigh is fabulous as an aging pop star who is hoping that the horrible Christmas version of his big-time pop hit will be the #1 holiday song on the radio. Liam Neeson plays a recent widower trying to connect with his grieving stepson (who has his own first crush). Emma Thompson plays a busy mother whose husband is considering an affair. Keira Knightley plays a newlywed who wonders why her husband's best man doesn't like her. And Colin Firth is a jilted lover who escapes to a quiet country house in France to work on his suspense novel and forget about love. I've tried not to give away any of the surprises in this summary because that's half the fun. There are some sad points in the stories, but mostly, it is a joyful, fun movie with lots and lots of laughs. My son loved it, and I exchanged my depressed real-life tears for happy movie tears, even though I've seen it several times before. This is the ultimate uplifting holiday movie.

I also convinced both of my sons to watch a holiday movie from the 80's with us, Trading Places (are you seeing a pattern here? At ages 20 and 16, my sons usually meet any suggestion mom makes with eye rolls!). They were both sick and bored enough to give it a try. If you've never seen it before, Trading Places is a comedy starring Dan Akroyd, as a wealthy young man rising to the top of his stock trading firm, and Eddie Murphy, as a disadvantaged small-time con man who lives on the streets. Through some unusual circumstances, the two trade places, and it doesn't take long for Murphy's character to adjust to the good life and Akroyd's character to hit bottom. Jamie Lee Curtis also appears - wonderfully - as a hooker with a good heart and big dreams. Oh, and it takes place at Christmas time, so that's the holiday connection. It's all good fun, with plenty of laughs and a happy ending.

So, those are two good movies to watch this time of year, if you are looking for some light, uplifting holiday cheer (note that both are rated R so are not for younger kids).

Have you seen any good movies lately? What are your favorite holiday films?

Thursday, December 11, 2014

Weekly Inspiration: The Art of Stillness

I enjoy - when I can find the time - inspirational videos or essays, and whenever I post one here on my blog, I get plenty of positive feedback. So, I thought I'd start a weekly feature, Weekly Inspiration, which will not only allow me to share these inspirational pieces with you, but will also ensure that I take a bit of time to myself each week to find and enjoy something inspirational.

I often find my best inspiration among the large library of TED talks, and this week is no exception. I listened to a talk by Pico Iyer, a travel writer, on The Art of Stillness and knew immediately that I wanted to share it with my blog readers.

Now, you may think this sounds a bit silly. Who knows more about stillness than those of us with ME/CFS, forced to rest every day and spend much (or all) of our time lying down, in bed or at home. But he is talking about mental stillness, not necessarily physical stillness.

I don't know about you, but my life has changed dramatically over the last 5-10 years. I find I am now constantly on my laptop, on the internet, checking e-mail, blogs, Twitter, interacting with my Facebook groups, etc. While the online interaction has been helpful to me in some ways, it has also definitely been a detriment to mental stillness. That's part of what Iyer talks about here - the need to take a break, to let your mind rest. Since rest is so critical to ME/CFS, we need to make sure we are taking time for real rest in this way.

Enough from me - check out this wonderful, inspiring talk:



Now, turn off that computer and discover for yourself the art of stillness.


Monday, December 08, 2014

Movie Monday 12/8

My son is still very sick with mono, so our movie and TV marathon continues.

We focused more on TV shows this week. We binge-watched season 2 of Orphan Black - BEST SHOW EVER! It is so compelling, it's absolutely addictive. To tell you too much about it would be to deprive you of some wonderful suspense, so suffice it to say it is about clones and is incredible. Give it a try - you won't be able to stop (we watched it free On Demand and on Amazon Prime). Now, we can't wait for season 3.

We also finished season 1 of Extant, a new sci fi show starring Halle Barry as an astronaut of the future  and featuring a life-like android child and an alien presence run amuck. It was also very good. We've also been watching Scorpion, Elementary, and all three of the NCIS shows. Only problem is that my husband and I are getting behind on the shows we normally watch together.

And we watched two movies:

Earlier this week, we watched After Earth, starring Will Smith and his son, Jaden Smith, and directed by M. Night Shymalan. When it was first released, we heard it didn't get great reviews, but all of us really liked it. It takes place in the future, when humans live on Nova Prime, after an apocalypse forces them to leave Earth. During a routine space mission, a ship crash lands on Earth, leaving the father and son as sole survivors on what is now an inhospitable planet. Dad's legs are broken, so it is up to his son to go on a rescue mission to the tail end of the ship, which landed a long ways away, to get the emergency beacon. The movie is nonstop suspense, and we were very impressed by Jaden's performance as a panicked and desperate adolescent alone in a strange place.

Last night, we watched The Lincoln Lawyer, starring Matthew McConaughey as swaggering defense attorney Mickey Haller. Despite the fact that my husband and I both read the book by Michael Connelly and saw the movie before, we didn't remember the details and enjoyed watching it a second time! And our son enjoyed it as well. It's a great suspense movie, with lots of twists and turns, as Mickey tries to defend a rich young man accused of rape and assault.

Our son also watched Gladiator starring Russell Crowe during my nap yesterday, and he enjoyed that one, too.

Have you seen any good movies lately?