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?

Friday, December 05, 2014

My ME/CFS Blog Featured on Be Our Guest Today!


I wrote a guest post, Our New Normal, that is being featured today at the blog Mom's Small Victories for their weekly Be Our Guest feature!

Mom's Small Victories blog is written by Tanya, who has become a good online friend of mine. I found her blog because she writes about books, like I do in my Book By Book blog, but we have a lot more than that in common. Tanya, a mom like me, has Rheumatoid Arthritis (RA), so she also writes about how chronic illness affects her life and her family. And if you're a blogger yourself, check out Tanya's weekly Small Victories Sunday link-up.

My guest post today is a brief version of my family's experiences with ME/CFS - from my diagnosis to my sons' diagnoses to treatments and coping. The focus on the post - as on this blog - is on being positive and finding the value in even painful experiences, so I also write about the unexpected benefits of our new life and what we've gained through living with chronic illness.

So, I hope you'll go check out my guest post and Tanya's blog!

Happy Friday!

Thursday, December 04, 2014

Treating Yeast Overgrowth/Candida


I have mentioned several times since early October that I’ve been worse than usual and going through a bad period. The source of that worsening is a flare-up (again) of yeast overgrowth, after I needed strong antibiotics for bronchitis/early pneumonia two months ago. I was waiting to write about it until I could tell you what worked to get rid of it. I’m not 100% yet but have improved enough to tell you more about what has worked for us (my son also struggles with yeast overgrowth after several years on antibiotics for Lyme).

First off, some basics. Many, many people with ME/CFS have yeast overgrowth, even if they don’t realize it. One reason it is common for us is that it is related to immune dysfunction. One recent study confirms this andidentifies the exact immune markers associated with yeast overgrowth. Yeast or candida is naturally occurring in our bodies and is not damaging normally. Problems occur when the yeast takes over. This often happens after a course of antibiotics because they kill off the good bacteria (aka probiotics) in our gastrointestinal systems that normally keep yeast/candida in check.

Symptoms of yeast overgrowth can vary widely. Some people (like my son and I) get thrush in their mouths. Thrush looks like a white or yellowish coating on the tongue caused by yeast overgrowth. When it gets worse, it can make your mouth and tongue hurt or feel sensitive, especially when you eat sour or bitter foods. Some women develop vaginal yeast infections – another obvious sign of yeast overgrowth (interestingly, though I have struggled with yeast overgrowth for years and often get thrush, I have never in my entire life had a vaginal yeast infection).

However, many of the symptoms of yeast overgrowth are less obvious and far more debilitating. For my son and I, all of our ME/CFS symptoms get much worse – flu-like aches, sore throat, cognitive dysfunction, exhaustion, etc. For me, the worst part is the aches. I spent almost two months this fall wracked with achiness every single day. Amazingly, after experiencing yeast overgrowth so many times before, I didn’t realize what was going on for weeks, until I noticed my mouth was sore. I ran to the bathroom mirror and stuck my tongue out and sure enough, there was obvious thrush in my mouth. Duh.

At first, I tried all the usual approaches (see list below) but to no avail – there was still visible thrush in my mouth and I still felt absolutely awful and was barely able to function. At that point, I asked my doctor to prescribe antifungals (yeast is a fungus). At the normal dosage, even those barely helped. I had to double the dose to finally, finally begin to get the yeast under control. Even that was barely effective – when I went in to see my doctor after more than a month on Diflucan (an antifungal), and she looked in my mouth and still saw the thrush there, she prescribed a stronger antifungal (Ketoconazole), alternating days with the Difucan. I finally started to feel better!

Here are the treatments we’ve tried to get yeast/candida under control, in rough order of what to do first:
  • Take strong probiotics. Probiotic strength is shown by the number of billions of active cultures in each capsule. When yeast overgrowth flares up, we shoot for at least 100 billion units a day. They must be taken away from any antibiotics or even herbals with antibacterial properties (like olive leaf, oregano, or monolaurin) and work best on an empty stomach. We take them before breakfast and before dinner. Saccharomyces Boulardii is a specific type of probiotic that is most effective against yeast, so you should take that as well as general probiotics.
  • Elminate sugar, yeast, and grains from your diet. Depending on how severe the yeast overgrowth is, you may need to severely restrict your diet. Yeast feeds on sugar and, to a lesser degree, on grains. We already eat a Paleo diet (only natural sugars, no grains, no dairy), but I got even stricter to try to get the yeast overgrowth under control. Yes, it is difficult at times, but it is better than feeling so horrible. First thing to eliminate is sugar in almost all forms – a small amount of honey or coconut sugar is OK, and we still eat fruit (at first) and use Stevia for sweetening. You also want to avoid alcohol and yeast (so no bread). If that alone doesn’t work, then also eliminate flour and other grains. I got so desperate, I even eliminated fruit from my diet for a while.
  • Take antifungal supplements & herbals. There are many natural substances that have antifungal properties. I use a product called Yeast Cleanse that includes several of these – there are many other combination products available. Natural antifungals include:
·      Pau D’Arco
·      Tea Tree Oil
·      Caprylic Acid
·      Grapefruit Seed Extract
·      Uva Ursi
·      Olive Leaf, Oregano (we use ADP – emulsified oil of oregano), Monolaurin – these all have natural antibacterial, antiviral, and antifungal properties
·      Coconut oil or other unsweeetened forms of coconut (coconut contains monolaurin)
  •  Use probiotic toothpaste. This is a new one for us, but it is definitely helping. Thanks to a blog reader for suggesting it! Our dietician said she uses it, too. The brand we are using it Designs for Health. I am still brushing with my regular toothpaste, then rinsing, then brushing again (tongue and gums especially) with the probiotic toothpaste (you spit it out but don’t rinse after).
  • Rinse with antifungals. We have used a few drops of tea tree oil in a small cup of water as a mouthwash, and our dietician recently recommended rinsing with Nystatin mouth rinse (requires a prescription) and Argentyn 23. There are others as well. Most you use as a mouthwash – swish and spit – but she said the Argentyn 23 is swish and swallow. I just bought some but haven’t tried it yet.
  • Take prescription antifungals. For both my son and I, ALL of the above still didn’t get our yeast overgrowth under control. In that case, you need to see your doctor and ask for prescription antifungals. The three most often prescribed are Diflucan, Nystatin, and less commonly, Ketoconazole. For stubborn cases (like ours!), it can be more effective to alternate between two or more of them. I am currently alternating days with Diflucan and Ketoconazole. My son has been alternating with all 3 for a year now.

Whew. Yup, we are doing all that, and still struggling to keep the yeast overgrowth under control! But since I started the Rx antifungal rotation, I at least feel a whole lot better (no more aches!) even if the thrush is sometimes still visible. Our dietician (who is also a biochemist) says the diet is absolutely critical – you have to starve the yeast to get them under control.

I’ve felt much, much better the last two weeks (good thing with two very sick people in our household!), but I’m not out of the woods yet. The yeast overgrowth flares up with the slightest amount of sugar, and I’m worried about what will happen when I go off the prescription antifungals. I’m going to try that new Argentyn 23 mouth rinse and just have to wait and see what happens next week when my prescriptions run out.

If achiness or cognitive dysfunction are prominent symptoms for you and/or you’ve noticed some soreness in your mouth, you should see your doctor and look into the possibility of yeast overgrowth as an underlying cause. It amazes me every time I go through this just how horrible it makes me feel and how it worsens all of my ME/CFS symptoms. With it under control, I feel really good and have mental clarity – I even have energy!  - and it’s the same for my son. Treating yeast overgrowth makes a huge difference in overall well-being.

Do you have any other treatments for yeast overgrowth/candida that have worked for you?

         

Tuesday, December 02, 2014

Movie Tuesday 12/2

I didn't have time for a movie post yesterday because I was busy shopping online (Cyber Monday). I got most of my Christmas shopping done - hurray! But I didn't want to miss this post completely this week because we have watched a LOT of movies!

My college son is home with mono, and my husband has been knocked out with a nasty respiratory virus, so we cancelled our travel plans for Thanksgiving and have been watching lots and lots of TV shows and movies. Both of them have been too sick to even read much, so this has been our main form of entertainment, to help pass the time on these long sick days.

We've seen some really good movies this past week - I'll have to stick to short reviews to fit them all in!

We started with The Next Three Days, a unique thriller starring Russell Crowe as John and Elizabeth Banks as his wife, Lara, who is arrested and convicted of a murder she says she didn't commit. John, a mild-mannered college professor, becomes obsessed with proving Lara innocent, while he takes care of their young son. When her last appeal fails, he turns to less legal means to free her. He concocts an elaborate escape plot, with the help of famous escaped convict Damon, played by Liam Neeson. The tension builds as John obsessively works out his plan and finally puts it into action. We all enjoyed this suspenseful film that kept us on the edge of our seats.

Over the holiday weekend, with the library closed, we discovered a couple of good movies on Amazon Prime. First we watched The Perfect Host, starring David Hyde Pierce in a creepy, hilarious role.  John Taylor is a thief looking for a place to hide from the police. He finds a random house in a quiet neighborhood and bluffs his way inside, but the resident, Warwick (played by Pierce) has some secrets of his own. This movie is full of surprises and is a rare suspense movie with a great sense of humor. We all loved this totally unique movie.

Next, we watched The Oxford Murders, a classic murder mystery with a mathematical twist. Elijah Woods stars as an American student named Martin studying at Oxford who wants to find a way to work with the renowned Professor Seldom, played by John Hurt. When Martin's landlord, who is a friend of Prof. Seldom, is murdered and mathematical symbols are left as clues, the student and professor join forces to help the police solve the crime. This one was good but not great, a nice choice for those who like classic mysteries or fans of the TV show Numbers.

Saturday night, we actually convinced my high school son to watch with us (a rare occurrence with his busy social life) when our library request came in: The Hobbit: The Desolation of Smaug. My husband and sons have waited a long time for this one! I liked the book but don't think they needed to take a short book and turn it into 3 very long movies. Despite that, there is no question this is a spectacular movie, with the highest possible production values, great acting, and amazing scenery, costumes, and CGI. It's an epic fantasy, plain and simple.

Sunday, we watched another DVD from the library, Reasonable Doubt, a twisty thriller. Dominic Cooper stars as ambitious Chicago DA Mitch Brockden who is on the fast track to success. Driving home to the suburbs one night, after a drunken evening with his colleagues, Mitch hits a pedestrian who has run into the street. He calls 911 from a payphone but then flees the scene, afraid of what the scandal would do to his career. When the man's murder gets attributed to Clinton Davis (played by Samuel L. Jackson), an angry man who lost his wife and child to a violent crime a few years earlier, it seems that Mitch is in the clear. During the trial, though, Mitch's guilty conscience makes him help prove Clinton innocent. Things aren't always what they seem, though, and this fast-paced thriller keeps you guessing right up to the exciting end.

Last night, we watched another Amazon Prime movie, Flight, starring Denzel Washington as a brash, cocky pilot nicknamed Whip who drinks and snorts cocaine before flying a commercial airliner. Disaster strikes on the flight, and the only thing that saves the lives of most of the people on board is Whip's experience and calm in the cockpit. He might be full of himself and stoned, but he's also a talented pilot. Once the accident is over, the NTSB comes in to investigate, and Whip's intoxication comes to light. It's a taut and suspenseful situation - Whip saved the flight but he also never should have been in the cockpit. Washington gives an emotional performance - we all enjoyed this movie very much.

Whew - that's it for one week! Much more to come this week, I'm sure.

Have you seen any good movies lately?

Giving Tuesday 2014

Today is Giving Tuesday, so it's a great time to contribute to ME/CFS research and other related causes.

Here are some past posts with more information on how/where to contribute:
If anyone has other links to worthwhile charities/foundations related to ME/CFS, please mention them in the comments.

Happy Giving!

Sunday, November 30, 2014

Weekend Cooking 11/30: Turkey & Wild Rice Soup

Each weekend, Beth Fish Reads hosts Weekend Cooking.  I often participate on my book blog, with links to recipes we've enjoyed that week. Sometimes - like this week - I post my own recipes. Since this week's post was a recipe that is gluten-free, dairy-free, and Paleo, I thought I'd also post it here. If you are interested in my past Weekend Cooking posts, you can see them at the link. And if you have any interest in food, head over to the Beth Fish Reads blog, where you'll find lots of links to blog posts about food (not all are about cooking - some are book or movie reviews, etc.).

My college son got mono last weekend, so we had to cancel our plans to travel to spend Thanksgiving with family. By Wednesday, my husband was also sick with a bad respiratory virus. So, we had a very quiet Thanksgiving at home, with just my father-in-law as a guest. I cooked all the traditional foods (thank goodness I have been feeling good this week!), but the smallest turkey I could find was 11 pounds...for 5 of us!

We enjoyed the feast, as well as a dinner of leftovers on Friday, but by then my family was getting sick of the same old stuff, so I used our leftover turkey to make a nourishing soup for my sick family. I based it on the way my mother used to make homemade chicken noodle soup when I was a kid (I still have the basic instructions scribbled down in a strange short-hand in the back of an old recipe book!). Since we are eating a Paleo diet for medical reasons, I subbed wild rice (which is actually a grass, not a grain) for noodles, which turned out delicious. Here's the recipe...in case you were wondering what to do with all that left-over turkey (for those outside the U.S. who didn't have lots of turkey leftover this week, you can also make the soup with fresh or leftover chicken).

Turkey & Wild Rice Soup
(Serves 8)
This is a great way to use left-over turkey after the holidays when you tire of basic left-overs!
Leftover turkey pieces and/or carcass, skin removed *
Tops of celery with leaves
1 small onion, cut into quarters
2 teaspoons olive oil
1 medium onion, chopped
3 stalks celery, chopped
2 teaspoons minced or crushed garlic
1 lb. carrots, sliced
32 oz. (2 cans or 1 carton) chicken broth **
2 cups cooked wild rice
1 teaspoon of sea salt (or to taste)
Fresh ground pepper, to taste
  1. Remove skin from turkey pieces and put in a large stockpot. Add the celery tops and quartered onion to the pot. Add cold water to cover the meat. Bring to a boil, then reduce heat and simmer for 2 hours.
  2. Drain contents of pot through a colander over a large bowl. Set broth aside and allow the meat in the colander to cool.
  3. When cool (it will be just right if you chop your veggies while waiting), sort through the meat in the colander. Discard bones, cartilage, and any other inedible pieces, as well as celery and onion. Chop the turkey meat.
  4. Sauté onion and celery in oil in stockpot over medium-high heat until soft.  Add garlic toward end of sauté.
  5. Add homemade broth, canned broth **, carrots, chopped turkey, wild rice, and seasoning.
  6. Bring to a boil, reduce heat, and simmer covered for 20 minutes, stirring occasionally.
NOTES:
* The amount of turkey we had left over included 2 wings, back, 1 leg, plus a few slices of white and dark meat. I removed the skin to reduce fat.
** Because I started with already-cooked turkey, my broth was a bit light on flavor, so I added the additional carton of store-bought chicken broth. If you start with uncooked turkey and cook the stock for a bit longer, then you probably won’t need the extra broth.
© Suzan L. Jackson 2014
(Do not reprint or publish without written permission from the author)

Friday, November 28, 2014

Life Can Change in a Moment

Ah, yes, that's a lesson everyone with ME/CFS has learned isn't it? Blink and your life can change. We get used to cancelling plans at the last minute, bowing to the whims of this crazy disease, and just going with the flow.

So, that happened to us this past week. We were enjoying a quiet weekend, with plans to leave on Wednesday to spend the holiday weekend with my extended family up in Rochester, NY. Then, bam!, everything changed.

My husband and I heard a loud noise in the middle of the night Saturday, which alarmed us since our younger son was away for the weekend. It turned out to be our older son, home from college in the middle of the night because he was feeling so horrible (and couldn't sleep with a party going on in his apartment!). He woke up Sunday barely able to move, with a severe sore throat and swollen glands. Even more alarming (we tend to get used to sore throats with ME/CFS), he had a temperature of 102 degrees F! This from someone whose normal temperature runs about 97.5 and for whom a "fever" usually means a high of 99 F.

As soon as we finished breakfast, we took him to our local Urgent Care clinic. We thought maybe he had strep throat since people with ME/CFS tend to be more susceptible to bacterial infections. His strep test came back negative, but the mono spot (rapid mono test) came back positive. This is something we have dreaded for many years: one of our sons getting mononucleosis (aka glandular fever in the UK). It is a known infectious trigger for ME/CFS and something that both our boys had always tested negative for, showing no past exposure to the Epstein-Barr virus (EBV).

Of course, we immediately cancelled all our holiday travel plans. Besides the fact that he was in no shape to go anywhere, we were supposed to stay with my dad, who is undergoing chemo for stage 4 melanoma. We couldn't risk exposing him to such a virulent infection.

Before ME/CFS, something like this would have sent me into a panic and upset me greatly. Now, we're used to last-minute changes and cancellations. I was very disappointed we wouldn't be seeing any of our family for Thanksgiving, but there's nothing we could do about it. We accepted the change in plans and made the best of it.

As it turned out, my husband caught a bad respiratory virus starting Wednesday, so it turned out to be a good thing that we (ahem, he) weren't driving 8 hours in a snow storm that day. We had a nice quiet Thanksgiving at home, something that hasn't happened since before our youngest son was born! And we were able to spend the holiday with my father-in-law, whom we just moved to the area a couple of months ago.

Our son is doing a bit better. Of course, the effects of mono can last for months even in a healthy person, but his fever has at least dropped, so he's not quite so miserable as he was. We got him started on Valtrex, an antiviral that works against EBV, immediately, so we are hoping that will help him to kick this sooner. He contacted all of his professors - on the plus side, at least mono is something they will all understand! And he contacted the Disability Office at school to request Incompletes in his classes, since finals are just a week away. He'll probably need to cancel the Winter session class he just signed up for, so he can finish his Fall Semester work.

And that's life with ME/CFS, right? You roll with the punches and adapt. Even when the thing you dread most finally happens, you accept it and move forward. That's one thing I've learned from 12 years of living with ME/CFS. We have little control over our lives, so when something goes wrong, go to Plan B.

Hope all of you in the U.S. enjoyed a lovely Thanksgiving with your families!

Jamie felt well enough to join us at the table for Thanksgiving!

Saturday, November 22, 2014

Contribute to ME/CFS Research While Shopping!

With the holiday shopping season fast approaching, remember you can contribute to ME/CFS research WHILE doing your online shopping!

Since getting sick almost 13 years ago, I've had to switch to mostly online shopping, so I was thrilled to discover that I could contribute to my favorite charities while shopping! It costs you nothing extra - the online stores have agreed to contribute a percentage of each purchase (the amount varies by store) to the charity of your choice.

Here are my two favorite ways to contribute while I shop - your first step should be to select your charity, then start shopping! Let me know if you know of others:
  • iGive.com - click on "Stores" to find your favorite stores (or browse through their categories to discover new ones); click on "Causes" to select the charity you want to contribute to. I contribute to Solve ME/CFS Initiative (formerly the CFIDS Association) - my header on iGive says I have contributed $176 so far, and the Solve ME/CFS Initiative has gotten over $6000 so far from all shoppers!
  • GoodShop.com - works similarly - choose your charity and start shopping!
(I had trouble with with search function on GoodShop, so if you are looking for a particular charity there, you might try typing its full name in or searching alphabetically)

BONUS! From now through December 15, iGive will donate an additional $5 for every new member who joins - just use the link above.

There are plenty of ME/CFS charities to choose from, including:
  • Solve ME/CFS Initiative 
  • Fibromyalgia-ME/CFS Support Center
  • CFS Foundation
  • National Chronic Fatigue Syndrome and Fibromyalgia Association
NOTE: Not all of these use their funds for research - some sponsor support groups or focus more on awareness.

The Solve ME/CFS Initiative has its own list of ways to "shop & give" this holiday season, including handcrafted items, ME/CFS awareness items, and ways to donate your eBay proceeds.

Have fun shopping...and helping ME/CFS organizations at the same time!

Addition 12/1: I forgot to mention Amazon Smile, Amazon's own charity contribution program.