Living with Uncertainty

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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!

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?

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.

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?

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 newer fitness bracelets that are so popular, like Fitbit and other brands, that track all sorts of data and send it to your smart phone. Many of these 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 one 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. Some of the newer or more expensive Fitbit models may do the same now, but read the details carefully.

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!