Movie Monday 12/30

We are enjoying the holidays, visiting family out of town (yes, again! third time this month). I seem to finally have the yeast overgrowth under control, though I am still on Diflucan. However, the first day after we arrived here, I got a killer sore throat and congestion - usually the starting signs of a long, difficult crash that often ends with bronchitis. I'm not feeling completely crashed - a bit low in energy - but I do still have some congestion and a cough is starting. I just hope I can make it back home without things getting much worse. A long day spent in an airport when crashed is torture.

Anyway, with everyone home for the holiday break and now visiting my father-in-law, we have had a little time for movies:

Before Christmas, we watched The Holiday with our sons. My husband and I had seen it before, but our sons hadn't. It's a fun, sweet holiday story with a great cast. Kate Winslet plays a British woman from a small town who wants to get away to help herself recover from a toxic relationship. Cameron Diaz plays a young woman in LA who creates movie trailers for Hollywood production companies and just broke up with her long-time boyfriend. Both women want to get away from their lives, and they connect on a house-sharing website and agree to switch homes for two weeks. Their homes and their lives are very different, so lots of fun ensues. Of course, there are love interests to help heal their wounds: Jack Black plays a sweet music composer who works with Diaz's character in LA, and Jude Law plays the adorable brother of Winslet's character. We all enjoyed it - it's a nice modern take on the holiday movie.

Here at my father-in-law's house, we all watched The World Is Not Enough, a James Bond movie starring Pierce Brosnan. It is the typical Bond movie, with a complicated plot, cool gadgets, and lots of fast-paced action and explosions. I'm not a big Bond aficionado myself, but my husband and sons said this wasn't one of the better ones. I agree that Brosnan isn't the best Bond - he didn't seem to have that classic Bond confidence and unflappable calm. But it was an action-packed movie that everyone from my 15-year old son to my 88-year old father-in-law enjoyed, so if you like action, it's good for a little escape from reality.

In between, we have been watching lots of The Mentalist (season 5) and Modern Family (season 4), two DVD sets that we gave our sons for Christmas, both excellent, as always.

Have you seen any good movies lately?

Movie Monday 12/23

With my college son home and the holiday break in full swing, we were able to watch some movies this weekend.

Both boys were occupied with friends in Friday night, so my husband and I watched Frozen Ground, a very creepy movie about a serial killer in Alaska. If tension and suspense keep you up at night, it's better to skip this one! It was an excellent movie and very well made, with an outstanding cast. Nicholas Cage plays the state trooper heading up the investigation, and John Cusack is chilling as the psychotic killer who is a loved member of the community. Vanessa Hudgens gives a surprisingly emotional performance - far different than her role in High School Musical! - as a prostitute who was beaten and raped by the killer but managed to escape. The movie takes place in Alaska in winter, so it is a very dark setting and a darker theme, especially when we found out it was based on a true story. It was gripping and compelling, with nail-biting suspense, and thoroughly chilling.

Saturday night, our younger son had friends over, so we watched Arbitrage with our 19-year old son, a movie we'd seen previewed on the DVD we watched the night before! This one is free on Amazon Prime right now. It was another suspense movie but of an entirely different sort. Richard Gere stars as a wealthy business man who seems to have it all - good looks, a beautiful wife (played by Susan Sarandon), a loving family, and a thriving business. He's on the cover of Forbes, and is closing a deal to sell his business for over 400 million dollars. Then things begin to slowly unravel, after he is in an accident and his various lies come back to haunt him. "What a tangled web we weave..." It's a good movie with a great cast and a complex plot that keeps you guessing.

Have you seen any good movies lately?

Symptoms of and Treatments for Yeast Overgrowth

Yes, I am still here! Sorry for the long silence here at the blog. As most of you know, I have had a very difficult fall and have been severely crashed for much of the past 3 months. With the holiday season on top of that, I just haven't had any time/energy at all for writing (my book blogs and commercial writing have been neglected also!). But I am back now - back to feeling pretty good and back here on the blog.

As it turned out, much of my suffering the past three months was due to yeast overgrowth, a fact that I didn't figure out until about a month ago. I wanted to share my recent experiences with you in the hopes that perhaps it might help some of you.

Yeast (aka candida) are a type of fungus that normally live in small amounts in your mouth and digestive tract. Problems occur when the yeast increases and/or good bacteria in your gut that normally keeps it in check decreases. One common cause of this yeast overgrowth is taking antibiotics - they kill off all the bacteria in your system, including the good stuff that lives in your digestive tract, allowing the yeast to take over. This is what happened to me this time. Back in September, I took 5 days' of Zithromax for bronchitis. Under normal circumstances, such a small amount of antibiotics wouldn't bother me (especially since I take probiotics every day - see below), but ever since I was treated for Lyme disease (over 3 years of antibiotics every day), I've had occasional flare-ups of yeast overgrowth.

For those of us who have ME/CFS, we don't even need antibiotics to cause yeast overgrowth. Since immune system and GI dysfunctions are an integral part of our illness, yeast overgrowth is a very common occurrence, though one that is often missed or not diagnosed.

How did I know I had a problem with yeast overgrowth? Well, it took me many weeks to figure it out, even though I've experienced it before. My symptoms included fatigue that was much worse than usual and severe flu-like aches all over my body; in fact, the aches these past few months were some of the worst I have experienced in my 12 years with ME/CFS. Increased brain fog is also common with yeast overgrowth. At one point, I looked back at my records and saw that of the past 60 days, I'd only been well enough to leave the house 14 days. That's far worse than is normal for me. For a long time, I assumed that the virus that triggered my crash initially (and started my bronchitis) was the reason for the prolonged crash.

I finally figured out that yeast was responsible when I noticed that my tongue hurt, especially when I ate certain foods (anything bitter, sour, or sugary). The light bulb finally went off at that point, and I ran to the bathroom mirror. Sure enough, I had active thrush on my tongue. Thrush is one sign of a yeast overgrowth - when you stick your tongue out, it looks like a whitish or yellowish fuzz on the back of your tongue and mouth. It generally makes your mouth hurt or feel sore, as mine was feeling, though sometimes it's your throat that feels sore - something easily excused by "normal" CFS symptoms!  While I usually get thrush in my mouth when I have yeast overgrowth, some people get vaginal yeast infections or an itchy feeling around the vagina or anus.

So, what do you do about it? Well, I should have gone directly to my doctor, but instead I tried to treat it myself first (and lost another month to the couch!). There are lots and lots of herbal remedies and supplements that can help, as well as dietary changes, but I wasn't making much progress with those approaches. They definitely helped, but I found that if I had even the tiniest bit of sugar, my symptoms returned. I finally went to see my doctor a couple of weeks ago, and she prescribed an anti-yeast medication (the two most common ones are Diflucan and Nyastatin). This time, it had gotten so bad that it took me a full 10 days on Diflucan before I finally began to feel better...and then it was like someone had flipped a switch!

Here are all the remedies that my son (who is currently being treated for Lyme disease) and I have tried for yeast overgrowth:

* Probiotic: Probiotic are the healthy bacteria that normally live in your GI tract; they also affect the immune system, so it's a good idea for anyone with ME/CFS to take them daily and to double the dose when you are on antibiotics (always take it at least 2-3 hours away from antibtiocs so the meds don't kill off the good bacteria). I take New Chapter All-Flora (dairy free), 1x/day normally and 2x/day during a yeast flare-up; my son takes HMF Forte brand, which was recently rated as having the highest amount of active bacteria.

* Saccharomyces Boulardii: This is a specific type of probiotic that is most effective against yeast. Ever since my Lyme treatment, I take it every day (as does my son). I am now taking it 2x/day until I get the yeast under control.

* Phytostan: This supplement blend was recommended by a Lyme treatment guide that I read, but it seems to have been discontinued just this week. Its main ingredient is caprylic acid, plus other anti-yeast ingredients, so I found an alternative that seems to be comparable, NOW brand Candida Support. My son and I are both currently taking it 2x/day. (NOTE: Phytostan has been discontinued but there are lots of anti-yeast supplement blends available)

* ADP (emulsified oil of oregano) and/or Olive Leaf Extract: Both of these herbal supplements are potent anti-fungals, antivirals, and antibacterials. Our Lyme doctor recommends ADP, and we have taken Olive Leaf for years when exposed to a virus. One potential problem, however, is that both of them could possibly kill off good bacteria while also killing off yeast. Currently, we both take one or the other 1x/day.

* Grapefruit Seed Extract: Another supplement recommended in Lyme treatment guidelines to prevent overgrowth of yeast. We both take it 2x/day for now; I will probably stop once I get this under control again.

Raw, unfiltered apple cider vinegar:  This is NASTY tasting stuff! My son tried it once and said no way, but I took it every day for a while, until I started the Diflucan. Lots of websites recommend this for yeast - I have no idea if it helps, but it seemed to at the time. 1 Tbls diluted in water, 1x per day as needed.

Tea Tree Oil:  Another herbal remedy I've read about - you can add a drop to your toothpaste (and brush your tongue, too) or add a few drops to a cup of water and gargle/rinse your mouth with it. Again, pretty nasty tasting, but it did seem to help, especially if you have active thrush in your mouth.

Avoid Sugar, Refined Carbs, Yeast, and Alcohol: OK, this is the one that's been the toughest for me, and I still can't convince my son to try it (even though his Lyme doctor told him at the last visit that sugar is like poison for him!). People with ME/CFS already avoid alcohol (since it makes OI so much worse), but the rest has been tough for me. However, I did find that it helped. That's when I finally went to the doctor - when the yeast seemed to be improving and even a single bite of something sugary would make it flare up again. I miss my square of dark chocolate at night! (not to mention fruit). Just like you see when you bake something with yeast, yeast literally feeds on sugar, so this can be an important step in difficult cases.

Diflucan or Nyastatin: These are prescription medications and are often necessary when yeast overgrowth has been present for a long time or is stubborn. Like I said, taking Diflucan finally flipped the switch that got me back on my feet, so I am grateful. I have been on it for 16 days so far and still can't eat sugar without a flare-up, so I will probably need to stay on it a bit longer. My son has been on it for years, as part of his Lyme treatment (and I took it every day when I was being treated for Lyme, too). I know people who were totally incapacitated by Lyme disease even after their treatment, until they took an anti-yeast medication and were magically better. I highly recommend seeing your doctor sooner rather than later if you suspect yeast overgrowth or have signs of thrush or yeast infection.

Here is a general overview on diagnosis, treatment, and prevention of yeast overgrowth. And here is a far more complex article on yeast overgrowth that might be helpful specifically for those with ME/CFS. This ties in with methylation issues which are very, very common in people with our illness. This is a complex topic for another day, but we have been investigating this in depth because it is certainly a huge factor in my son's illnesses...and after reading this article about the connection between methylation and yeast, I am now wondering if it might be critical for me as well. If you like, skip past all the details about methylation and focus in on the "Recommendations for reducing yeast overgrowth" at the bottom. We haven't tried many of these yet, though I plan to.

So, that's been my recent experience - another of many examples where I thought I knew all about a topic and then I found out I had a lot to learn! I hope this is helpful.

And, please, let me know if you have some tips or remedies for yeast overgrowth that I didn't mention here. I am still relying on Diflucan at the moment and still unable to eat any sugar (plus my son is constantly battling yeast overgrowth), so any information is greatly appreciated!

* P.S. Please see my later post on Timing of Supplements as to when to take the anti-yeast supplements and probiotics. I had it all messed up at first!

The Invisible Illness

Sorry I haven't posted in so long. We spent most of last week in my hometown, Rochester, NY, visiting family for the Thanksgiving holiday weekend. As you can imagine, it was exhausting, but I did enjoy seeing everyone. It took us 11 hours on the road to get there Wednesday (with a stop at the Lyme doctor who is sort of but not exactly on the way), then there was a BIG family gathering each day with a different branch of the family. Then, an 8-hour drive home on Sunday (most restful part of the weekend!)

Anyway, I managed OK while we were gone by resting a lot at my dad's, but I am still not doing well overall. I've been struggling with yeast overgrowth for months now. I think I am finally getting it under control (I promise a post on all the remedies I've tried when I am feeling better), but this week I have still been feeling pretty horrible, especially in the second half of each day, with sore throat and severe flu-like aches. Each afternoon and evening has been a major struggle for me, both physically and emotionally.

A couple of times this week, I have been reminded of why ME/CFS is called an Invisible Illness.

The first time was on the phone with a family member who'd been in Rochester with us. She remarked on how great my son had seemed, so full of energy that he must be doing much better. In fact, as most of you know, my son has been much worse the past six months (and this relative knows that), and I explained that on the day in question, he'd spent all morning and afternoon in bed because he felt so terrible after playing with his little cousins the night before. He was in such bad shape that morning, he was lying on the floor, until he decided to just go back to bed. But, by late afternoon, he had rested enough to be able to play football and laugh with another set of cousins...and THAT is what everyone saw. Invisible.

This week, even though I was feeling awful and knew I shouldn't, I went to my neighborhood book group Wednesday evening. I'd tried to rest as much as possible all day, but I was still not in good shape. I figured I could manage just sitting on someone's sofa for a couple of hours and talking, but I was wrong. The aches quickly deepened, my orthostatic intolerance flared up, and brain fog began to set in. After an hour, I was feeling horrible. I tried pulling my feet up on the couch and sitting cross-legged (for OI) which helped temporarily, but my symptoms continued to worsen. I was slumped way down, with my head against the back of the sofa, and began to have trouble concentrating and speaking. When I went to the bathroom, I had trouble walking normally and had to shuffle along slowly.

So, of course, I figured it must be obvious to all my friends and neighbors around me. Nope. When I mumbled that I needed to go because I was having a bad day, a close neighbor/friend who has health problems of her own was surprised: "Really?" she asked. By this point, I was ready to curl up on the ground and burst into tears, and I was stunned to realize that no one could tell. How is that even possible? Invisible.

My husband often says that no one outside of our household can possibly understand or even imagine the bizarre life that we live. People only see us when we are well enough to be out; no one but our immediate families are there to witness the days or weeks spent lying prone. It's been months since I've been well enough to manage the grocery store - my husband had to go again tonight to restock. It makes me feel lonely to realize what an isolated world we sometimes live in, that even among close friends and family members, our suffering - even when severe - is often invisible. 

WEGO Post #19: 3 Tips for Caregivers

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic: 3 Pieces of Advice for Caregivers.

That was actually yesterday's topic, but you should be used to my always being behind by now! Besides, this is a timely topic that deserves attention because November is also National Family Caregivers Month, a time to recognize the unsung heroes in our lives: those who devote themselves to taking care of ill family members or friends. For more information, plus resources like books and websites for caregivers, check out this older post on National Family Caregivers Month from November 2009.

I have unusual insight on this topic because I am not only a chronically ill person who sometimes needs help myself but also a caregiver of my two sons. Thank goodness they are both doing OK at the moment and in school, but they've both had CFS (one mild and one more severe) since 2004, and my older son also has Lyme disease and two other tick-borne infections. So, I have had many years of caring for them when they are in bad shape or crash (my older son has been completely incapacitated at times). Those are difficult times, indeed, when I am sick myself but also needing to take care of them.

So, from first-hand experience, here are my Top 3 Tips for Caregivers:

Take Care of Yourself. It seems obvious, but even for healthy caregivers, it is easy to overlook your own needs when you are so focused on taking care of someone else. If it seems selfish to think of yourself when your loved one is suffering, just remember that you'll be no good to them if you don't take care of yourself and maintain your own health (as much as you can). Eat a healthy diet, get enough rest, exercise if you are able to, and get outdoors as much as possible. Doing these things for yourself makes you a better caregiver.

Connect with Others. It is so important to connect with other people in similar situations and so much easier now with the internet! In a recent post on favorite quotes, I included this one:

“Friendship is born at that moment when one person says to another, 'What! You too? I thought that no one but myself...'.”
          - C.S. Lewis

It is such a powerful feeling when you meet (whether in person or online) someone in the same situation as you, someone who instantly understands the challenges you face. It feels like a huge relief, like a weight being lifted from your shoulders, when you are able to talk to someone else who totally gets it. If you are a parent taking care of a sick child, teen, or young adult, consider joining our Facebook group for Parents (just send me a quick e-mail or leave a comment here or on my Facebook page to let me know who you are - that way I can approve your membership right away without a background check). If you are some other sort of caregiver - a spouse taking care of a sick partner or a child taking care of a sick parent, etc. - then try that blog post from November 2009 - there are plenty of links there for caregivers.

Take a Break. Though similar to #1, Take Care of Yourself, just taking care of yourself on a daily basis isn't enough. You also need to take a break once in a while. Find someone else - a friend or family member, someone from church, a professional caregiver - who can take over your duties for a while, and get out of the house!  Whether it's an hour-long lunch with friends or a weekend away by yourself, getting away from your duties is rejuvenating and will help you to be a calmer, more patient caregiver. A year and a half ago, I had ignored all of this advice for too long, had two sick kids at home, and got to the point where I felt like I was just going to explode. An impromptu weekend away by myself helped immensely. Having no responsibilities and no one to take care of but myself for 24 hours felt life-changing, and I came back a better caregiver for my sons. If you can't manage a weekend (mine didn't cost anything - I stayed at a friend's beach rental in the off-season!), at least get out by yourself once a week or so - not to go to the drugstore or grocery store but to do something just for you. See a movie, go shopping for yourself, have lunch or dinner with friends, go to a museum...whatever fulfills and restores you.

Being a caregiver is a never-ending, challenging, and often thankless job. I hope these tips help to make things easier - and if you are the ill one, then encourage your caregivers to do these things!

WEGO Post #15: 3 Favorite Chronic Illness Blogs

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic: 3 Favorite People to Follow on Social Media. Since I have avoided Twitter, Pinterest, and Instagram so far (seems like they would suck up too much energy - I can barely keep up with Facebook and blogs as it is!)...so I am focusing on my 3 Favorite Chronic Illness Blogs:

Wow, it's hard to pick only 3. I may have to cheat a bit here. I'm going to divide these into two categories: Informational Blogs and Supportive Blogs.

Informational Blogs are those you can count on for the latest information on research, advocacy, and other important, ever-changing topics that I just can't keep up with on my own. In this category, I rely especially on two excellent blogs:

Jennie at Occupy CFS - Jennie was a lawyer in her pre-illness life, and she has a rare talent for distilling complex information into understandable bits. She is an excellent writer and has the ability to report on complicated, even controversial topics with uncommon grace and a lack of bias. Besides, I have met Jennie (she lives near me), and she is a kind and delightful person. I rely heavily on Jennie to sift through all the information and keep me up-to-date.

Research 1st...which I see has just (a few minutes ago) announced its new name and location, Solve CFS Blog - This is the official blog of the CFIDS Association of America which has proven itself over the years to be the #1 resource for keeping up-to-date on research news, as well as other news of interest to those with ME/CFS. I have relied on this website for almost 11 years, ever since my diagnosis, and the blog they started last year has proven very useful in staying current on all the latest news.

Supportive Blogs - these are the personal blogs written by other people with ME/CFS, the ones that are great for honest accounts of what life is really like with chronic illness and for finding emotional support. Here are some of my own personal favorites:

My World, written by Upnorth, a Canadian woman who has had ME/CFS for over 11 years, is a beautifully written blog that often includes nature photos or artwork. Upnorth writes eloquently of the ups and downs of life with this crazy illness and has an upbeat, positive attitude. Although we have never met, she's become a good friend of mine.

Infinite Daze by Baffled - Like many of us with chronic illness blogs, she writes of her own daily struggles, but she also often writes of medical issues, healthy eating, and even some much-needed humor. Another excellent blogger who has been around the blogosphere for many years and has become a good friend.

Mummy and M.E. and MEcuperate by Jennifer Barber - Mummy and M.E. is Jennifer's blog, about being a chronically ill mom of young kids, and MEcuperate is the website she started last year to provide a place for people with ME/CFS to gather - a virtual clubhouse for talking about books, movies, recipes, crafts, and yes, illness, too. I enjoy both the blog and the website, and Jennifer has also become a virtual friend.

OK, so that's 5 in all.  I could just go on and on here - there are so many great blogs out there that I follow! But these are a good sampling of the ones I have followed most closely.

What blogs or other social media resources are your favorites?

WEGO Post #13: How Has Illness Changed You?

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic:

Evolution
Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?

 Wow, this is a big topic, but I will try not to be too long-winded. The past 11 1/2 years of living with chronic illness have dramatically changed my life. I think their word - evolution - is a good one because for the most part, parts of me that were already present have been enhanced while other parts have faded, in a slow, gradual process of change.

I have always seen myself as strong, capable, independent, and confident, so suddenly finding myself helpless and at the mercy of an unpredictable illness was a severe blow, requiring significant changes to my normal ways of approaching life. Before illness, if I ran into a challenge - sick child, looming deadline, insane travel schedule - I attacked it full-on: push through, do more, sleep less. My life philosophy back in those days was work hard and play hard, though having children definitely began to slow me down a bit. I was also a perfectionist and often put pressure on myself to get it all done and do everything well.

I must admit, those tendencies are still here, under the surface, but I have had to accept that I can not do it all anymore. This has definitely been an evolution, not an overnight change, in slow steps, often one step forward and two steps back. Since I usually operate at about 40-60% (and sometimes even lower) of the energy level and stamina that I had before becoming ill, I have been forced to adjust my expectations for myself. Sure, a part of me still wants to do everything, but I know where my limits are and I work hard to stay within them.

Similarly, I have had to lower my standards - for housecleaning, for cooking, for entertaining, for just about everything. Cleaning is a guaranteed crash, so I just don't even attempt it; I wait for our cleaning service to come every other week (a luxury in the old days but now a necessity) or ask my husband or son to help and often just live with the mess. I do still love to cook and do still have high standards for making tasty and healthy meals, but those meals are simpler these days, as I know I can't spend much time on my feet. In the old days, I would have been horrified at the thought of serving take-out to house guests, but now I know that if we are having visitors, my energy will be especially limited and I need to conserve it however I can. (Coincidentally, my mother called while I was writing this to ask me what I can cook and bring for Thanksgiving dinner! I explained that the 8-hour trip will take all my energy, and I won't be able to do any cooking. She didn't get it, just kept saying what a great cook I am. Sigh...see, in the old days, I would have let her talk me into doing more than I know I can manage, but now, I know that attempting to bake pies the day before a big trip like this would leave me with no energy left for enjoying my family's company. Still evolving...)

I am still very goal-oriented, but the nature of my goals has changed somewhat. I do still have similar writing goals to before I got sick, but I have had to accept a much slower pace of progress. I know I can only manage an hour or so (at most) of productive time per day for writing. Other goals have become simpler, focused on basic self-care: to take a short walk and do at least 10 minutes of gentle yoga a few times a week, to rest when I feel bad, to try to see friends once a week. I do still tend to set too many goals and think I can accomplish more than I can, even though I have adjusted my goals downward constantly.

As for values, I think certain values that were present before have become more prominent through my illness experiences, particularly the importance of family and helping other people. These have always been important to me, but with so many other aspects of my life stripped away, they have taken on a greater emphasis in my life. The experiences of having three of the four of us in our household seriously ill all at the same time changed all of us - we know that those ties that bind us together can never be broken, that we will always be here for each other, and that together, we can face any challenge.

Experiencing severe illness together has left our family more resilient and more accepting of the normal ups and downs in any life. We know we need to roll with the punches and take things one day at a time, so when something bad happens (like last week, when our college-aged son came home very ill), we tend to take it more in stride. Learning first-hand that you have little control over your own life is a hard lesson, but it tends to allow you to handle the bad stuff more readily.

Our experiences have also made all of us more empathetic. It has always been important to me to help others and to feel like I am doing something valuable - that turned out to be my strongest "career anchor" back at the beginning of my engineering career (we had to take all sorts of quizzes on career anchors!). Since becoming ill, though, helping others has become a significant part of my life. When our kids got sick and we eventually found treatments that helped him get back to school, helping others became even more important. Somehow, helping others makes our own difficult experiences feel more worthwhile.

Well, I have babbled on for too long, I think. How about you? How has illness changed you?

Movie Tuesday 11/12

Too much to do yesterday with both boys at home and too achy to blog in the evening, so Movie Monday is a day late this week. I didn't want to skip it, though, because we watched a lot of movies last week!

My oldest son is home from college in a major crash. Unfortunately, it is likely that he has mono (still waiting for the blood test results), so this could last a while. He had a very rough week and was understandably upset over having to leave school and all that he's missing, so we watched a LOT of TV and movies together to cheer him up. With two teen sons at home and my husband, we watched a lot of action movies in particular (though hang in for the last and best one below if you're not a fan of action). Although they were all good movies and interesting, I have seen enough fighting, shooting, and blood to last me a lifetime this week! Anyone want to join me in a chick flick? Please?

Friday night, we watched Parker, a crime caper movie starring Jason Statham (who we loved in The Italian Job) as a criminal with a conscience named Parker. He will only steal from those who can afford it and never kills an innocent person. Yes, high standards, indeed! Nick Nolte stars as an old thief (and father of Parker's girlfriend) who sets Parker up with a crew for a major heist at the Ohio State Fair. Parker makes his rules clear to the crew, but something goes wrong, and an innocent bystander dies. The crew fights afterward over the outcome and how to split the take, and the four men leave Parker for dead by the side of the road. Parker is not, of course, dead, and makes it his goal to get revenge on the four remaining crew members. He moves to West Palm Beach where they are busy planning their next heist, and enlists the help of novice real estate agent Leslie, played by Jennifer Lopez. The plot is great and the acting is good, but be warned that this is a very violent movie! Lots of guns, knives, and blood and lots of f-words.

Along similar lines, the next night we watched Olympus Has Fallen, another movie with a great cast, intriguing plot, and lots of violence. Aaron Eckhart plays the President of the US, Ashley Judd is the First Lady, and Gerard Butler plays a Secret Service Agent who used to protect the first family but was moved to a desk job. Terrorists take over the White House and take the President and several from his cabinet hostage. Morgan Freeman plays the Speaker of the House, who has to take charge with so many of the leaders kidnapped. As you can see, this is an all-star cast, and they all do a magnificent job with this tense thriller. The details of the terrorist attack, surrounding politics, and possible solutions are absolutely fascinating, prompting lots of thoughts of What If. But, like Parker, this is a very violent movie, with lots of guns and lots of blood. The terrorists are ruthless and leave a lot of civilians and White House staff dead on their way to capture the President. So, it's an excellent movie, but don't say I didn't warn you, if you don't like violence or can't handle movie tension.

Sunday night, we browsed through the free movies on Amazon and ended up watching Equilibrium, a dystopian sci fi thriller that...guess what? Yup, it turned out to be very violent. Less blood this time but lots of guns and shooting. In this bleak future after World War 3, a frightening leader has ensured ongoing peace by outlawing emotion. Citizens are required to inject themselves with a pharmaceutical cocktail every day that suppresses all emotion. In addition, anything that might cause someone to feel something - art, music, books, and apparently most colors other than gray - have also been outlawed. Christian Bale stars as Preston, a Grammaton, one of the elite police force who seek out and destroy contraband and "Sense Offenders" (his partner is played by Taye Diggs). One day, Preston drops his dose of meds and gets a glimpse of what he's been missing. The plot is unique and engrossing, but again, skip this one if you don't like violence.

And finally, last night, we watched a completely peaceful movie without a single gunshot or drop of blood! Another freebie on Amazon Prime, Robot & Frank is a movie I've been wanting to see for a long time, and all four of us enjoyed it immensely. Frank, played fabulously by Frank Langella, is a retired cat burglar struggling with the beginnings of dementia in the near future. He lives on his own in a small house in rural New York state. His son comes to visit once a week, grudgingly, and his daughter is always calling from exotic places to say hello, but otherwise, he is on his own. When he sees that his Dad's memory is getting worse, his son brings Frank a robot caretaker to watch over his health and keep him safe. Resistant at first, Frank comes to see the robot as a friend, and finds a new purpose in his life in teaching his new friend his burglary skills. Also starring Susan Sarandon, Liv Tyler, and James Marsden, this movie is wonderful - warm, tender, and funny. And, I so want my own robot now! They could revolutionize life for the chronically ill.

Have you seen any good movies lately?

WEGO Post #11: How My Daily Nap Saves Me

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic:

Veteran’s Day
For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11^th hour on the 11^th day of the 11^th month. Do you have a task you complete every day at the same time that helps you with your chronic illness? How long have you been doing this, how has it helped?

Something I do every day at the same time that helps my illness? Easy. That has to be my daily nap.

When I first learned about CFS and saw the CDC's information about it online, I went to the library, sat down in the health area, and looked for books that might tell me more. I found two books and brought them home: Dr. Bell's fabulous The Doctor's Guide to CFS: Understanding, Treating and Living with CFIDS and a memoir/nonfiction book called Chronic Fatigue Syndrome: A Comprehensive Guide to Symptoms, Treatments, and Solving the Practical Problems of CFS by Gregg Charles Fisher. Both books blew my mind (for the first time in a year of illness, I was reading about a condition that exactly matched my own experience), but Fisher's book brought me to tears.

As I read about Fisher's experiences (he and his wife both got ME/CFS at the same time and were severely disabled by it), I sobbed on my couch - every bit of it was so familiar to me. This was the first time I learned about the exercise intolerance inherent in ME/CFS and understood why I kept crashing. Fisher explained something else in his book that changed my life - the concept of proactive rest. He explained how people with CFS need to rest before we feel like we need it, how we need to bank rest ahead of time, and how a habit of proactive rest can help us to feel better all the time.

I have been taking Fisher's advice for the past 10 years. I take a nap every day after lunch, no matter what else is going on in my life, and it helps me cope better with my limitations every day. Without that nap, I am a wreck by 4 pm and useless in the evening. With the nap, I can usually manage to make dinner for my family and enjoy their company. Occasionally, I can even manage to go out in the evening with friends. On a really bad day, I take two naps - one in the morning and one in the afternoon.

Sure, it kind of sucks to live my life according to a toddler's schedule - I never schedule anything in the afternoon because I know it's the time of day when I feel my worst - but the alternative (crashing every day by dinnertime) is much worse. I even take that nap when we are traveling in the car (eye mask, ear plugs, and a pillow help) or when we are away from home.

My nap does not interfere with my nighttime sleep; in fact, I sleep much worse when I am over-tired from not resting. It took some practice to get into a routine where I fall asleep every day, but now it is a habit. To help fall asleep at nap time, I take 2-3 Valerian tablets (a mild herbal sedative, like chamomile, that wears off quickly for me), put on warm socks (I read a study where warm feet help you fall asleep quicker and it's true!), make my room as dark as possible, and read for about 15 minutes. I usually sleep between 45 - 90 minutes every afternoon.

So, that's my daily habit - what routine helps you to feel better?

(Although Dr. Bell's book is still fabulous, it is a bit out of date, but I was happy to see that Fisher's book has been updated and is even available on the Kindle now).

    

WEGO Post #8: Favorite Quotes

To celebrate National Health Blog Post Month, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. Today's topic is 3 Favorite Quotes.

This is an easy one for me! I discovered these first two quotes in my first year of illness, and they have provided a lot of support and comfort over the years:

"You can only see as far as your headlights, but you can make the whole trip that way."
          - E.L. Doctorow

I think I actually found this one on a bottle of Jones soda! And I have since learned that Doctorow was talking about writing, but none of that matters. This quote is perfect for a life with chronic illness and learning to live one day at a time, sometimes just one moment at a time. We are relearning that lesson this week.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'"
          - Mary Anne Radmacher

I came across this one in a catalog on a plaque and started sobbing! It was just what I needed to hear at that time. I printed a picture of the plaque and kept it in my bathroom, where I have re-read it at the end of many bad days. This really gave me strength - to understand that sometimes the best we can do - the most we can do - is just to wake up the next morning and do our best again.

And finally:

“Friendship is born at that moment when one person says to another, 'What! You too? I thought that no one but myself...'.”
          - C.S. Lewis 

This one perfectly describes the many friendships I have made online, with people I've never met in person but feel very close to (I can see my son rolling his eyes!). One of those friends, Annie, is co-administrator with me of a Facebook group I started for Parents whose children have ME/CFS and related illnesses. Annie added this quote to our group description, and it describes exactly how we all feel about each other and the group. Same with people I have gotten to know through blogging and through other illness-related Facebook groups. There is such power in those shared experiences; no one else in the world can truly understand what we live with and what our daily lives are like.

So, those are my three favorite quotes - do you have any?

(P.S. If you have a sick child/teen/young adult and want to join the Facebook parents' group, please leave me a comment, e-mail, or message on Facebook or on my Facebook page for this blog - it'll save a lot of time doing a background check if I know you legitimately belong when I see your member request).

WEGO Post #6: Mary Poppins Carpet Bag

Did you know that November is National Health Blog Post Month? No? I didn't, either. To celebrate, WEGO Health is hosting a 30 Days, 30 Posts Challenge for health-related bloggers. Each day, they have a different topic for a short blog post, with a Facebook page for posting links. I thought I'd try participating as much as I can manage.


So, I am jumping in at Day 7 - today's topic is Mary Poppins Carpet Bag: what do you carry in your purse/bag/backpack?

First and foremost, I never go anywhere without food and my water bottle! My bottle doesn't actually fit in my purse but I always carry it, and there are always little snacks in my purse in case I go too long between meals and hypoglycemia hits! My water bottle contains lots of ice (I like my water icy cold, even in winter), water, and lately, a quarter teaspoon of Elete, an electrolyte solution (the extra salt helps keep me upright). For food, I often have a mini baggie with a handful of almonds or peanuts or cashews. Sometimes I also have a granola bar, though most of those contain dairy and/or are high in sugar. I love KIND bars, but they are 200 calories each, so I only indulge in them rarely.

I also carry a wide range of medications and supplements - the zipper pocket in my purse is full! There is a baggie of ibuprofen, a baggie of Valerian (in case I need to take a nap in the car), Sudafed and aspirin in case of headache, Immodium, Gas-X, and lots of Lact-Aid.

Oh, and I always carry with me copies of medication lists for myself and each of my sons. My older son and I each have a list that is a full page long, showing all medications and supplements. It is in table format, with columns for Medication, Strength, Dosing (i.e. time of day and number of times per day), Reason, and for Social Security, I had to add Start Date and Prescribing Doctor. I wish I could include a copy here, but I don't know how to do that! I carry these with me in case of emergency, but they are also VERY useful when one of us sees a new doctor - there's no way I could write all these down every time! I just attach the list to the forms and print a new one when I get home.

Otherwise, it's the normal stuff in my purse - my wallet, sunglasses, phone, lip balm, and lately, reading glasses.

How about you, Mary Poppins? What do you carry with you?

A Change of Scenery

The beach is so peaceful and relaxing.

 Sometimes a change of scenery can do wonders!

As most of you know, I've been going through a bad period this past month, and last week was just as bad. Friday I pretty much hit bottom - severe sore throat, horrible aches, exhaustion. I did something I rarely do and stayed in my pajamas in bed all day. By afternoon, my mood matched my physical condition - all of these down days finally got to me, and I was feeling pretty depressed.

I dragged my chair out onto our sunny deck, laid in the sunshine, and watched some inspirational TED talks - that often helps, and it did this time, too.

Rehoboth Beach Boardwalk

Things began to turn around in the evening. I started to feel just a bit better, our son got invited away for the weekend, and my husband and I suddenly had a weekend alone in front of us. We've been trying to get away together for a long time - over a year! - so we made a snap decision to just get out of town. Of course, we had no reservations, and it was too late to use the Bed & Breakfast gift card my mom gave us for Christmas last year. So, we made a quick reservation at our favorite inexpensive hotel at the beach (Rehoboth Beach here in Delaware) - just making that reservation lifted my spirits!

Enjoying a relaxing breakfast

Saturday morning, I was still somewhat achy but definitely feeling better. We packed a quick overnight bag - well, actually, it wasn't that simple, as you probably know - we CFSer's do not travel light! I packed an overnight bag, all my medications, just-in-case medications, my own pillow and blanket in case I needed to sleep in the car, etc. By 12:30 pm, we were at the beach and on vacation! It was such a great feeling just to be away and on our own, with no responsibilities! For me, just being out of the house was a huge relief.

A short walk on the beach.

We had a wonderful 24-hour getaway together. We took a short walk on the beach (I wore my heart rate monitor, of course), ate at our favorite restaurants, splurged on fudge and homemade donuts, watched episodes of The Good Wife on my laptop in bed, and even managed a tiny bit of shopping at our two favorite stores there - a bookstore and a retro toy store. I still wasn't quite feeling up to my normal baseline, but I felt pretty good and managed quite well. It's that Vacation Paradox again - I can handle a lot more activity on vacation because there are no stress or obligations to use up my limited energy.

I had a brief crash again Monday afternoon and evening and thought I was in for another bad week, but today was better - not great, but OK. My college-aged son is not faring so well this week - for the first time in over a year of college, he had to come home last night to rest because he felt so horrible. He's got a severe sore throat, swollen glands, and some congestion, so I fear he may be starting what I went through a few weeks ago. Hopefully, he will rebound more quickly than I did because he can't afford to miss a lot of school. For now, I am giving him extra immune system meds and supplements, feeding him his favorite foods, and trying to take care of him.

The weekend away refreshed me - I feel like I am starting fresh this week! 

A beautiful day at the beach...though a bit chilly!

Still Down and Out

I had all sorts of plans for informative posts this week but have had another looooong week of being crashed and feeling awful every day.

I did have a few good days last week but otherwise have been down and out for almost a month now. No idea what's up this week but the immune symptoms are through the roof (sore throat, horrible flu-like aches) even with my Imunovir.

So, just wanted to stop in quickly to let you know I am still here...and still not up to much writing.

I am getting frustrated by the lack of progress and the fact that I have no idea why I'm crashed now. At least the past few weeks I knew I'd been exposed to a virus and developed bronchitis.

Also frustrated because I keep making plans and then having to cancel them.

Can I have a brief whine?  I want to take a walk! I want to go to the store when I need to! I want to make weekend plans with my husband! I want to have fun with my kids! I want to go out with my friends!

OK, I feel a little better...now I'm taking a cup of herbal tea and going back to bed to read. This is the first time in YEARS that I just stayed in my pajamas this morning - couldn't face a shower or getting dressed. Hopefully, I will perk up soon and get back to my usual routine.

Help Support an ME/CFS Documentary

A woman with severe ME has started a project to make a documentary about ME/CFS. They've already made a great start, but they need help! There are several ways that we can all help right from our beds and couches.

Check out their video:



Then you can donate to their Kickstarter fund - donations as low as $1 are accepted. Just think - if everyone with ME/CFS donated just $1, they'd end up with millions to make this important documentary!

You can also help by spreading the word. From their Kickstarter page, you can share on Facebook or Twitter or embed the video in a blog post as I've done here. You can also read more about the project on that [age.

They've already made a fabulous start to this important project - just think what they could do with proper funding!

Movie Monday 10/21

As most of you already know, I was badly crashed for much of last week, continuing a two-week bad cycle, but was starting to feel better by the weekend. Feeling pretty much back to my "old self" now - not my actual old self from 12 years ago, but my usual old self post-CFS. I even took a walk today around my neighborhood - it felt absolutely glorious to be out in the sunshine, moving!

We enjoyed a couple of good movies this weekend:

Friday night, we watched The Avengers with 15-year old Craig. Our older son saw it with college friends last year at the theater, but the rest of us missed it. It was very entertaining and helped to fill in the blanks from last week's viewing of Iron Man 3. You know all those superhero/Marvel comic movies that have come out in recent years? Well, The Avengers pulls them all together into a single storyline. A villain comes along who is too powerful for any one superhero to tackle alone, so all those various heroes come together (reluctantly) - Iron Man, Captain America, The Hulk, and Thor, along with former Russian spy The Black Widow. As you might imagine, that makes this an action-packed movie, with lots of suspense and fight scenes. But it also has a good sense of humor which we all enjoyed. At the end, I said it was good but the ending battle scene went on a bit too long...and my husband and son both said, "What?? It wasn't long enough!" It all depends on what you like. The star-studded cast makes this movie enjoyable for most, though - how can you go wrong with Robert Downey, Jr., Mark Ruffalo, and Chris Hemsworth (Thor) in one movie?

Watching The Avengers made us all curious about the new TV show, Agents of SHIELD, that just started last month. The premise is that it picks up right where the movie left off - after the battle of New York and the superheros fleeing off to wherever superheroes go. The agents of the title are on the lookout for others with superhero power so that they can protect them from those who would exploit them. So, we watched the first episode last night, and it's pretty good.

My son went to his Homecoming dance Saturday night, so my husband and I watched another movie, Star Trek Into Darkness. This is the second movie in the new Star Trek series, featuring Kirk, Spock, and the rest of the original crew when they were young and just starting out. Yes, another action-packed movie (that's life when you're the only female in the household!), but I enjoyed it. The Enterprise's crew heads out to deep space to go after a rogue Starfleet agent who has bombed headquarters. If you are a long-time Star Trek fan, like my husband (and me to a lesser extent), there are a lot of inside jokes here and connections to be made with stuff that happened later in the original TV series and the earlier movies. Entertaining, but I think I've seen enough explosions and fights to last me a while now.

Have you seen any good movies lately?

In Search of Severely Ill, Bedridden ME/CFS Patients

I saw this announcement in the New Jersey CFS Association's newsletter:

"Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:

We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!"

Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can't normally get out to see any doctor, let alone one of the best in the world.

In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.

If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.

P.S.  I checked with Dr. Lapp - this survey is international (though in the second stage, where they reach out to try to help those who are housebound, they may be limited to the US) - so everyone who has severe ME/CFS and/or is bedridden or housebound, please stand up...err...lie down and be counted!

Slowly Coming Back to Life

After a severe crash that lasted over two weeks, I am slowly coming back to life and returning to "normal," whatever that means for me! I was really getting frustrated this week, to still be feeling so awful and having to stay horizontal all the time. Last week, I had a good attitude about it - I could tell from the way it started that it would be a major crash, the sort that only hits me about once a year now - so I settled in to rest and wait for it to go away, resigned to spending a week on the couch. I even made a pre-emptive appointment with my doctor for Friday because I knew this type of crash with congestion always turns into bronchitis for me (I think when this happens it is triggered by exposure to a virus). I thought I was on top of things.

But this was more like a once-every-two-years crash! As one week passed by, then 10 days, I started to get impatient and frustrated. Last Saturday night, I missed out on one of our local CFS family gatherings that I always look forward to. We even had a family visiting from out of state, so I really wanted to be there. How pathetic is it when you're not well enough to go to a party for sick people??

So, I kept resting, and I did feel a little better last Sunday, after spending another Saturday on the couch. I expected Monday morning to be a fresh start, and I was ready to get back to work and be productive again. But I woke up Monday morning after 10 hours' sleep still feeling exhausted and achy all over, still congested and coughing.

I had one big thing planned for this week: my neighborhood book group's 125th book celebration Wednesday evening. We were meeting at a local restaurant to celebrate and have our book discussion...and I had made the arrangements and chose the next group of books to vote on. I did not want to miss it, so I tried to be good and listen to my body (something I'm not always good at) and rest aggressively (I love that term!). By Wednesday, though, I still felt awful. I stayed on the couch all day, took a longer nap than usual, and tried to avoid stress and exertion. Finally, at 5 pm, an hour before dinner started, I needed to make a decision. I went back and forth - yes or no? - and agonized over it. Finally, my son said, "Mom, what's the big deal? Just go and come home early if you need to." I realized he was right, and, completely fed up with missing out, I decided to go - I got dressed (in something other than sweats), even put on a little make-up, and I went! It felt like such a victory! And I did think I might be feeling better but wasn't sure I could trust my feelings.

The evening turned out great. I managed it fine, feeling better and better. I took of my shoes under the table and sat cross-legged on my chair to ward off OI. I also took Sudafed before I went - I was still congested but also figured it would be good for OI plus its stimulant effects wouldn't hurt! It was such a joy to be with other people and talk. I am normally a very social person - I was not meant to live an isolated life alone in my family room!

That turned out to be an OK decision. By pure dumb chance (and a lot of rest), I really did turn the corner that evening and started to slowly feel better. My stamina was still quite poor for the next few days even though I felt better, so I tried to take it easy and come back to "normal" life bit by bit. Yesterday, I managed a short walk with my husband at our local nature center - it was so wonderful to be outdoors and moving again!

Today is Sunday which is always a busy day for me - my older son comes home from college for a few hours, and I need to refill all our medications (12 weekly reminder boxes between the 3 of us!), plus I usually make his favorite pancakes for breakfast and a nice Sunday dinner. So, I am hoping not to overdo today so that Monday - this time - really will be a fresh start!

Movie Monday 10/14

sigh...still badly crashed, going on two weeks now. This is a bad one - perhaps the worst I've experienced in several years. I think it was triggered by exposure to my son's cold. By the end of last week, it had developed into bronchitis, and I was hoping that starting antibiotics would help. I felt even worse on Saturday - maybe from the exertion of going to the doctor's office and the drugstore - and was still stuck in horizontal position. I missed out on our local CFS group's potluck dinner, though my family still went. I felt a little better Sunday and thought it was finally over, but I woke up this morning worse than ever - again, I probably did too much, too soon yesterday.

So, I haven't had the energy for writing much here, but I have been posting brief updates and comments on my new Facebook page for Learning to Live with ME/CFS. If you are on Facebook, check it out and click "Like" to get blog updates and join the conversations!

Anyway, with all this time spent on the couch, I saw two movies this weekend, one with my family and one on my own when they all went out Saturday evening:

Friday night, my husband and I and our 15-year old son watched Iron Man 3, and we all enjoyed it very much! With all superhero/comic book movies that have come out in the past 5 years or so (and there have been a LOT of them), the Iron Man movies are my favorite, perhaps because of the considerable charms of their leading man, Robert Downey, Jr. In this one, Downey returns in the title role as Tony Stark, with his sidekick played by Don Cheadle (now called Patriot Man by the US government), and his now-girlfriend Pepper Potts, played by Gweneth Paltrow - how can you miss with these three accomplished actors? A new villain is on the scene, a mysterious terrorist who calls himself The Mandarin, played hilariously by Ben Kingsley. As with previous Iron Man movies, there is a lot of action, amazing technology, and cool stunts, as well as an engaging storyline and a nice dose of humor.

Saturday night, with my family away at the party I wanted to go to and maybe feeling a little sorry for myself, I cross-referenced 50 Best Romantic Comedies Of All Time with movies free on Amazon Prime and came up with Chasing Amy. Made in 1997, it stars a young Ben Affleck and Jason Lee as Holden and Banky, best friends and comic book writing partners. They meet another comic book creator named Alyssa whom Holden falls for almost immediately. There is a catch, though: Alyssa is openly, blatantly, and proudly gay. She and Holden become good friends, but he wants more. Meanwhile, Holden's close relationship with Alyssa begins to come between his and Banky's 20-year long friendship. I really liked this movie, especially the fact that it was unique and unlike any other movie plot I'd seen before. Not your typical light and fluffy rom-com, it has some funny moments but also delves fairly deep into serious questions of what is love, what is the difference between sex and love, and what does it take to build (or destroy) a relationship. The film earns it R rating with plenty of very frank talk about sex, so you might want to skip this one if that makes you uncomfortable. For me it was a welcome distraction from a rotten week, and I found that the characters really stuck with me afterward.

Have you seen any good movies lately?

P.S. If you are also interested in what I've been reading (plenty of reading time last week!), check out the Monday post on my book blog.

Learning to Live with ME/CFS on Facebook!

I am severely crashed this week - my once a year, major, stuck in bed kind of crash. At least it's usually just once a year now instead of all the time like it was at the beginning. I suspect my son's cold last week triggered this.

So, I haven't done any writing this week (or much of anything else for that matter), but I did manage to set up a Facebook page for this blog. I've been meaning to do this for a while. I've noticed blog traffic generally slowing down lately (not just on my blog), as more and more people "hang out" on Facebook and interact in groups there. Also, in managing my own Facebook account, I often have to say no to friend requests from blog readers and others in the online CFS community. I decided long ago to keep my Facebook "friends" limited to just family and close friends I know in person (or know very well) - otherwise, it just becomes too complicated for me to keep track of. But I know that some people with CFS use Facebook almost exlcusively to connect with others with CFS.

So, with all of those considerations, I now have a Learning to Live with ME/CFS Facebook page! Check it out and "like" it, and you will be able notified of new blog posts right on Facebook. I am also hoping it provides for more interaction among blog readers - now you can leave comments here or on the Facebook page. Even though I removed the word verification from the comment section on this blog (and believe me, I get some really awful spam because of that!), I still sometimes hear from people who say they wanted to comment but didn't know how.

So, "like" the new page, and I look forward to seeing you there!

I am still trying to figure out how to put a link to the Facebook page in the sidebar here, but hopefully that will be up by next week.

Movie Monday 10/7

Rough week followed by a rough weekend and an even rougher Monday. I've been in bad shape lately - seems to be a typical virally-induced crash since my son had a cold/sinus infection recently. Since I started Imunovir, I rarely get these kinds of crashes from virus exposure anymore, but it still hits me once in a while. And today's rainy weather probably isn't helping. Crazy illness, right? We ended up having to give up our plans of camping this past weekend, so it turned out to be an entire Plan B Week!

Anyway, we stayed home so I could rest. Our son had a friend sleep over Saturday night, so my husband and I watched At Any Price, a family drama starring Dennis Quaid and Zac Efron, as a 3rd generation farmer named Henry and his son, Dean, respectively. Henry has not only successfully run the farm he inherited from his own father; he has expanded it and his business steadily. He is an aggressive businessman, as the opening scene shows when he drags Dean along to the funeral of another local farmer in order to buy the man's land from his grieving family. Henry pins his hopes on his oldest, beloved son, Grant, taking over the family business, but Grant (who was a great student and football star) is off exploring the world and showing no signs of coming home. Younger brother Dean, who has lived in his brother's shadow and struggled for his father's approval, also has other plans - he wants to be a race car driver. Dean is good at racing and has made a name for himself; he's a local star who wins a lot of races and a lot of attention, from everyone except his dad. It's an intricate family drama with plenty of conflict, and the actors are all excellent, including supporting roles by Kim Dickens as Henry's wife and newcomer Maika Monroe as Dean's girlfriend. Both Henry and Dean are wrapped up in their own dreams with little regard for the people around them, and, of course, their goals are in direct conflict with each other. Their problems escalate - due to their own flaws and impulsive actions - and have far-reaching effects on their family, friends, and neighbors. It's a good movie (Ebert's very last "thumbs up" before his death!), but it's quite a downer. Even when things wrap up at the end and many of their problems have been resolved outwardly, it's not exactly a happy ending.

We have also been trying lots of new TV shows and enjoying some of our old favorites, with the fall TV season in full swing. With our 15-year old son, we've been enjoying Bones, Glee, Amazing Race, and lots of comedies (his favorites!) like New Girl, Big Bang Theory, and new shows like The Crazy Ones, the Michael J. Fox Show, Dads, and Brooklyn 99.

My husband and I like the new shows Sleepy Hollow and Blacklist and are enjoying our old favorites like Grey's Anatomy and Elementary.

Have you seen any good movies or TV shows lately?

ME/CFS Case Definition - News and Views

There have been some startling and ground-breaking developments in the ME/CFS world in the past few weeks. I have postponed writing about them because I wanted to have the mental energy to consider all sides of the issues and to think it through myself. Things have been hectic here at my house, and I've had two rough weeks CFS-wise (probably because of my son's cold and sinus infection). I didn't want to delay getting this news out to you any longer.

So, here is a brief recap of the events of the past week or two. I have tried to keep things simple here, but you can click any of the links for more detailed information:

1. At the end of August, the US Department of Health & Human Services (HHS) announced that they planned to start a process to develop a clinical case definition of ME/CFS (i.e. a definition of the illness that doctors can use to diagnose patients). Now, this is clearly something that is desperately needed for ME/CFS patients; however, the proposal also named a single contractor, Institute of Medicine (IOM), to develop the criteria. This rang some alarm bells in the ME/CFS patient community because IOM has been working on a similar definition for Gulf War Illness (a chronic illness that has a lot in common with ME/CFS). There have been some concerns raised about this IOM process with Gulf War Illness, as described in the article linked to above.

2. That HHS announcement set off a complex chain reaction with the community of ME/CFS patients, doctors, and experts. Many people, fearing that IOM would approach this project without involvement from bona fide ME/CFS experts and patient input, participated in a letter-writing campaign to HHS to stop the IOM initiative. Apparently, all of the letters had some effect because two major things happened on the same day in late September:

• The HHS officially announced that the Institute of Medicine (IOM) would immediately begin a study on developing Diagnostic Criteria for ME/CFS, in response to a 2012 CFSAC (CFS Advisory Committee) recommendation and that the process will include stakeholder input, including patients and practicing clinicians. You can read the rest of the details about the process at the link above.
• A group of 35 of the top U.S. clinicians and researchers in ME/CFS sent a letter to HHS Secretary Sebelius, asking her to stop the IOM process and announcing that they had come to agreement on a single clinical case definition that's already been developed, the Canadian Consensus Criteria (CCC). This is huge and unprecedented! The 35 signatories include many of our most respected ME/CFS experts - names that you have probably heard over and over again through the years, including Dr. David Bell, Dr. Leonard Jason, Dr. Daniel Peterson, Dr. Nancy Klimas, and many more. Patients gave a collective cheer! For this group of highly regarded experts to come together and announce their solidarity behind a single case definition is a huge step forward. You can read their letter here and further discussion and explanation here.

3. As you can imagine, both of those announcements caused a lot of uproar, and individuals and organizations alike scrambled to consider all of the facts and decide what their position would be. Stand behind the 35 experts and the CCC? Support the HHS and the IOM process and trust that they will do what they say and include real experts and patients? Somewhere in between? Some of the 35 experts who signed the letter stand by it 100% and don't want the IOM process to move forward. Others feel cautiously optimistic that the IOM will conduct the process as stated, with stakeholder input, and that it might be beneficial, especially if the CCC is used as a starting point.

4. Through the Freedom of Information Act (and thanks to Jennie of the Occupy CFS blog), details of the IOM's statement of work (SOW) have been published and disseminated. You can read the details in this blog post that Jennie wrote. It does appear that IOM is saying all the right things with respect to stakeholder involvement and a solid process that uses existing data, criteria, and information.

5. Meanwhile, in social media and through e-mail, comments, opinions, and a fair amount of vitriol have been flying back and forth among patients. Most don't trust the government (with good reason based on past problems), many are applauding the 35 experts, some are attacking experts whose names didn't appear on the list. Unfortunately, emotions are running high and not all of the discourse is respectful and constructive; many people are being reminded of the rifts that occurred in our patient community during and after the XMRV research a few years ago.

6. After carefully considering all the facts and input from patients and their own Board, the CFIDS Association of America just announced its position on the HHS/IOM contract to develop diagnostic criteria for ME/CFS. Their statement provides a nice, concise summary of the facts, so it is helpful to read from that perspective. They are basically saying that they want to support this process as it moves forward, using their expertise and resources in the best way possible. They say that the CCC is a great starting point, that the IOM process could have value if it is done as laid out now, and that the IOM needs to be held to its commitments, with swift action taken if they fall short of their promises (to include patient input, to include ME/CFS experts, to use existing criteria, studies, and research as a starting point, etc.).

As for me, I am mostly in agreement with the CAA's statement. Some in the patient community no longer trust CAA because they feel that by working directly and closely with the government (CDC, NIH, HHS) the Association has turned its back on patients. I have a different view. I think that realistically, nothing major is going to happen for our illness unless the government agencies who control all aspects of health management (research, treatments, doctors, etc.) are on board. I feel that the best way to move forward into a better future - one that includes clear diagnostic criteria and effective treatments - is to work together with these agencies, in a cooperative and respectful way.

From a more personal perspective, I try to stay away from all of the anger, bitterness, and vitriol that crop up during controversies like this. Those kinds of negative emotions just make me sicker - often far sicker than even physical exertion - and I simply can't afford that. Of course, I am angry over past mistakes the government has made and its past ignorance of ME/CFS and lack of support. But I can't let that anger get the best of me and make me even sicker. That's in the past. More recently, there have been positive signs: CFSAC meetings incorporating more patient interaction and input, FDA workshops held to gather patient input, and even this very initiative. I honestly believe that most people involved with these processes - on all sides - believe they are doing the right thing. Though we have seen single cases in the past where an individual was doing something wrong and knew it (for instance, the infamous misappropriations of funds by the CDC), those are the exceptions. I firmly believe that taking sides and turning this into an emotional battle will not benefit anyone.

Look at all of this from the positive side - the HHS finally wants to develop a real clinical case definition for ME/CFS (and they are even calling it ME/CFS!). Wow. That is something we have desperately needed for decades. Indulge for a moment in a dream of how things could change over the next few years: there could be a single, agreed-upon definition - developed by patients and experts - that all medical personnel have access to and are educated about. Wow!

Yes, there are lots of potential problems along the way, plenty of challenges to face, and a lot of hard work to do, but let's take a moment to celebrate this momentous occasion and get ready to move forward!