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

(Updated 2/23/24) 


If you have ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), long-COVID, or Lyme disease, and achiness, extreme fatigue, and/or cognitive dysfunction (brain fog) are prominent symptoms for you, and/or you’ve noticed some soreness or visible thrush in your mouth or itchiness in your vaginal area, you should see your doctor to look into the possibility of yeast overgrowth (candida) as an underlying cause. Yeast overgrowth is very common in ME/CFS and long-COVID due to our specific kind of immune dysfunction and in Lyme and other tick infections due to antibiotic use. 

It amazes me every time I go through this just how horrible yeast overgrowth makes me feel and how it worsens all of my ME/CFS symptoms. When yeast overgrowth is flared up, none of my usual ME/CFS treatments seem to help the way they normally do, and I am exhausted and achy and unable to get off the couch, with even minimal exertion (that I can normally tolerate) causing a worsening. With yeast overgrowth under control, I feel pretty 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 for people with ME/CFS and Lyme disease (and other bacterial tick infections).

In fall 2014, my ME/CFS had been worse than usual for months. The source of that worsening was a flare-up (again) of yeast overgrowth aka candida, after I needed strong antibiotics for bronchitis/early pneumonia two months earlier. This post describes what treatments work for us (my son also struggles with yeast overgrowth with his ME/CFS and after several years on antibiotics for Lyme). 

Another bad yeast flare-up in summer 2023 led to further discoveries, and I updated this post. It appears I am a slow learner, though! I was horribly crashed in the last three months of 2023 and thought yeast overgrowth was treated effectively, until one of my doctors noticed I still had thrush on my tongue. That resulted in re-learning how critical diet is in controlling yeast, and now in early 2024, with yeast overgrowth under control, I am feeling better than I have in many years!

Why Is Yeast Overgrowth a Common Problem in ME/CFS?
First, some basics. Many, many people with ME/CFS  and long-COVID 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. This study from Pitt found that a particular cytokine, IL-17, helps to suppress yeast overgrowth, as did this NIH review of studies on IL-17 and yeast. Several studies specific to immune function in ME/CFS have shown our IL-17 is often low. Many studies and experts have found yeast overgrowth as a factor in many patients with ME/CFS. And this study digs into the details of immune dysfunction in ME/CFS and a connection to yeast overgrowth.

Yeast or candida is naturally occurring in our bodies and is not damaging normally. Problems occur when the yeast takes over (i.e an overgrowth) and crowds out the good bacteria in the GI system. 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. Because yeast overgrowth often occurs when you take antibiotics, people being treated for Lyme disease and other tick infections are at especially high risk. Our Lyme specialist was the first one to prescribe antifungals for yeast overgrowth for both of us. In addition, the immune dysfunction of ME/CFS makes us more susceptible to bacterial infections than most, so many of us get recurring infections, like bronchitis, sinus infections, and ear infections, that require the use of antibiotics. But even without antibiotics, the immune dysfunction of ME/CFS and long-COVID alone makes yeast overgrowth a common underlying factor.

Symptoms of Yeast Overgrowth
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 and is 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 decades and often get thrush, I have never had a vaginal yeast infection). Many of us with ME/CFS have yeast overgrowth that extends throughout our GI tract, even if we can only see it in the mouth.

However, many of the symptoms of yeast overgrowth in ME/CFS and Lyme 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 two months in fall 2014 wracked with flu-like 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. Similarly, with a more recent flare-up, in 2023, I couldn't figure out why I was so exhausted and couldn't get rid of the flu-like aches, until my doctor looked in my mouth, and ... yup, again!

At first, in 2014, 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 only partly effective. When I went to see my doctor after more than a month on Diflucan (fluconazole, 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.  Since then, I have remained on fluconazole daily. I had similar struggles in 2023, even with the anti-fungals! This time, it was my diet that was the key. Sometimes, it takes ALL of the treatments listed below to finally get yeast overgrowth under control.

Treatments for Yeast Overgrowth
Here are the treatments we’ve tried to get yeast/candida under control, in rough order of what to do first:


I just relearned how important diet is in controlling yeast; don't skip this step! 

Depending on how severe the yeast overgrowth is, you may need to severely restrict your diet, at least temporarily. Yeast feeds on sugar and, to a lesser degree, on grains (especially refined grains). There are three main diet options to help control yeast, from least restrictive to most:

  • Paleo: no sugars (except limited natural sugars), no grains, no dairy, no legumes, no alcohol. This diet has been shown to be helpful for those with immune disorders.
  • Keto (full name--ketogenic): moderate protein, very low carb, high fat diet, avoiding most sugars, grains, legumes, starchy vegetables, and alcohol. This puts your body into ketosis, where it burns fat for fuel instead of carbs. It generally results in weight loss and improvement in blood sugar, blood pressure, cholesterol, and other health measures.
  • Carnivore: is what it sounds like! Only meats, fish, seafood, eggs, and butter (if you can tolerate it, some high-fat dairy like cheese and cream are OK). A study from Harvard found that 89% of those with autoimmune disease who tried the carnivore diet saw significant improvement in their disease (ME/CFS is not strictly autoimmune but it is an immune disorder). It is also no-carbs, so there is nothing to feed yeast.

In my blog post about a paleo diet, I explained our own "modifications," but I don't recommend that! I think that's what got me in trouble last year and allowed the yeast to get bad again. Stick to paleo, keto, or carnivore. While I said I was eating paleo, my diet had slipped over the years, gradually becoming less paleo, with exceptions for sugar and grains creeping in more and more often. I was also eating plenty of starchy vegetables that feed yeast.

With this latest terrible flare-up, in 2023, what finally got rid of the yeast overgrowth (after trying everything else in this post) was going to a strict, no carbohydrates, carnivore diet (more info on what I did and how it helped in the video at the link; also includes explanation of paleo and keto diets). Yes, it is difficult at times, but it is better than feeling so horrible. In fact, I've been on this strict, mostly carnivore diet (I have a few bites of non-yeast-encouraging veggies each day) for almost two months now, and it's not hard at all because I am so thrilled to be feeling so good! I am back to walking, going out with friends, and doing all the things I want to do and have not had a single post-exertional crash since I started the diet. That makes it easy to stick with. My doctor suggested sticking with strict carnivore for three months, and after that, I will probably transition to more of a keto diet.

Step one to control yeast is to eliminate sugar in all forms. Check labels because sugar is added to all kinds of foods. Once yeast is under control, you may be able to tolerate a small amount of honey or coconut sugar and small amounts of fruit, but at first, eliminate all sugars and sweeteners except xylitol and stevia (we like Truvia brand which contains stevia and erythritol). Most sugar alcohols (they end in -ol on ingredient lists and are present in many products labeled "sugar-free") also feed yeast (and can upset the stomach) and should be avoided, but erythritol and xylitol have actually been shown to fight yeast. Use in small amounts, though, to avoid stomach upset. Stevia is a natural, no-calorie sweetener that does not feed yeast and will not upset your stomach. Normally, with the other treatments on this list, I can tolerate some fruit, but when it's as bad as it has been recently, I eliminate that, too. Blueberries and other berries are the least likely to feed yeast and watermelon is very low in sugar. Avocados have almost no sugar, so they're OK, too. I'm even eating a quarter of an avocado occasionally on my mostly carnivore diet. 

All grains and especially refined grains (bread, white rice, pasta, anything made with flour) will also feed yeast--your body reacts to these in the same way as sugar. Start with eliminating sugars and grains. If that's not enough, also eliminate starchy vegetables (potatoes and most root vegetables). If that's still not enough, you may have to further restrict carbs of all kinds.

Search online for "anti-candida diet" to find lots of information and resources. I found this Anti-Candida Diet article helpful. Check out my delicious recipe for a Paleo Chocolate Smoothie, with great health benefits and options for a yeast-friendly smoothie. And for a treat, try my recipe for Sugar-Free Chocolate Bark.


Probiotic strength is shown by the number of billions of active cultures in each capsule. We take probiotics every day, but when yeast overgrowth flares up, we increase the dose. Renew Life is a good brand that contains 12 different probiotic strains, including those that are important if you are taking (or have taken) antibiotics. When I take antibiotics or have a yeast flare-up, I switch to this stronger variety of Renew Life, with 50 billion units. With this latest yeast flare-up, our functional medicine specialist recommended TruBifido, in addition to the others I usually take. Saccharomyces boulardii is a specific type of probiotic that works against yeast, so you should take that (we take 2 twice a day) as well as general probiotics, with a variety of strains in them, daily. 

We take saccharomyces boulardii and regular probiotics every day, all the time. I add the Renew Life (50) and TruBifido when the yeast flares up. Probiotics must be taken away from (by at least 90 minutes to two hours) 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 bedtime. 

Antifungal Supplements and Herbals: 

There are many natural substances that have antifungal properties that can be taken separately or together. Some combination products include multiple ingredients, but read the labels carefully to be sure you can tolerate all ingredients (for instance, Uva Ursi is a diuretic and not good for those with ME/CFS; some can not tolerate berberine because it lowers blood sugar, etc.) Natural antifungals include:

  • MCT Oil - Medium-Chain Triglycerides, a component of coconut--contains caprylic acid.
  • Coconut oil or other unsweeetened forms of coconut (note that coconut contains monolaurin, caprylic acid, and MCT oil)

NOTE: Careful not to take too much caprylic acid, MCT oil, and coconut oil together - they all come from the same source (coconut oil) and too much can cause diarrhea.

Antifungal toothpaste is another option. Thanks to a blog reader for suggesting it! Our dietician said she uses it, too. This brand contains probiotics, xylitol, grapefruit seed extract, and silver (note that some recommend swallowing silver solution, but that can have serious health risks). 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).
You can also rinse with herbal antifungals. We have used a few drops of tea tree oil in a small cup of water as a mouthwash (spit it out!), and our dietician recently recommended rinsing with Nystatin mouth rinse (requires a prescription). Do NOT use regular mouthwash that contains alcohol, as it will feed yeast.
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 (fluconazole), Nystatin, and less commonly, ketoconazole. For stubborn cases (like ours!), it can be more effective to alternate between two or more of them. 
Ketoconazole should only be used short-term; I just took it for a month when my yeast flared up badly and wasn't responding to other treatments. Normally, I take Diflucan (fluconazole) every day to keep the yeast in check; my son alternates Diflucan and Nystatin. My doctor said chronic yeast overgrowth is also very common in HIV/AIDS and other immune disorders, and so she feels comfortable keeping me on prescription antifungals long-term, as she does for those other patients.

If you want to avoid prescription medications, then you will have to get extra-strict with diet to get yeast overgrowth under control, possibly going to a carnivore or keto diet and severely limiting all carbs. However, I'm eating mostly carnivore now (no carbs) and still need the prescription antifungals for now; I am hoping to be able to reduce my dose soon.
Whew. Yup, we are doing all that, and until I switched to a carnivore diet, I was still struggling to keep the yeast overgrowth under control! But since I got more strict with my diet, switched prescription antifungals for a month, and added some extra supplements and probiotics, I feel a whole lot better--no more aches! My energy is great, and I'm able to be quite active without crashing. Our previous dietician (who is also a biochemist) and our current functional medicine specialist both say the diet is absolutely critical--you have to starve the yeast to get them under control.
I want to emphasize that this regimen usually keeps both of us feeling quite good: no aches, no thrush in the mouth, no exhaustion (unless we overdo), and excellent mental clarity. When we cheat on the diet, skip probiotics, or reduce the antifungals, our symptoms flare up. In fact, last summer after getting it under control, I splurged on a half cookie Saturday evening with friends and a chocolate croissant Sunday morning (I was craving a treat!), and things got worse again. I doubled up the antifungals, took extra probiotics, and got back to my strict diet, and within 48 hours, I was feeling better again. Hopefully, as I continue to improve, I will be able to relax the diet a little bit (at least add some fruit back in), and not see such a big effect. But I have learned my lesson this time and know I can't go back to regularly eating sweets and grains. Once I get past the initial three months of (mostly) carnivore diet, I will probably transition to more of a keto/paleo approach, but I know now that I can't cheat the way I was before.
It's still amazing to me what a difference it makes in my overall illness to have the yeast overgrowth under control, and it's the same for my son.

Do you have yeast overgrowth/candida?

What has worked for you to help control it? Please share your tips and advice in the comments!

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to 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 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.
* 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:
  • - 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!
  • - 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.

Tuesday, November 18, 2014

Movie Monday 11/17's Tuesday already. But I didn't want to miss the opportunity to tell you how much I enjoyed watching a classic this weekend:

My husband and I watched Rear Window, the classic suspense film from Alfred Hitchcock. Confession time: this was the first Hitchcock movie I have ever seen! Can you believe it? My husband had seen this one before but happily watched it again. Jimmy Stewart stars as L.B. Jeffries, a photojournalist with a broken leg who is stuck in a wheelchair in his tiny apartment during a heat wave. He can't wait to get back on the road with his camera, and is horribly bored. Only visits from his nurse and his wealthy & fashionable girlfriend, Lisa (played by Grace Kelly), break up the monotony. In between their visits, he amuses himself by watching his neighbors through the rear window. He lives in a courtyard apartment, so there is plenty to watch across the yard. He even makes up silly names and stories for some of his neighbors. One day, though, he sees some unusual behavior across the way from a traveling salesman whose invalid wife is suddenly absent. L.B. guesses (half jokingly) that the man killed his wife and chopped her up. As the days pass, though, events in that apartment seem stranger and stranger, and L.B. even gets Lisa and his nurse in on the guessing game and amateur sleuthing. The question is: is this another of L.B.'s silly stories or did a murder really take place? The movie starts out slowly, but the suspense builds right up to the end and kept me guessing. I really enjoyed seeing these famous Hollywood stars and was surprised to see how well the old film holds up. I definitely want to watch more Hitchcock classics now! My husband says Vertigo is next.

NOTE: When I looked up Rear Window to grab the photo above, I discovered that the movie was remade in 1998, starring Christopher Reeve (post-accident) as the man in the wheelchair. It's rating wasn't nearly as high as the original, but it might be fun to watch it and compare the two (besides, I love Christopher Reeve).

Have you seen any good movies lately? And which Hitchcock film is your favorite?

Sunday, November 16, 2014

The Battle Continues

Just a quick update since I haven't been posting much here recently.

I haven't felt well (or at least, my normal baseline) since mid-September. Back then, you may recall, I ended up with bronchitis. The usual 5 days of Zithromax didn't do the trick this time - my bronchitis actually got worse and began to develop into pneumonia, so the doctor put me on a stronger antibiotic, Cipro, for another week. That finally got rid of the bacterial infection but left me struggling once again with yeast overgrowth.

We know a lot about yeast problems in our house - we've fought this battle many times before! So, from the time I started the first round of antibiotics, I was already on a super-strict diet and taking loads of extra-strong probiotics and all the antifungal supplements in our arsenal. None of that mattered - I still developed yeast overgrowth.

This has been a stubborn case. I've been taking prescription antifungals for about 6 weeks now, and I still have some visible thrush in my mouth. Worse are the immune systems - terrible aches all over, every day.

To make matters worse, I've been extra busy around here: running my car to the shop and the DMV to try to beat my re-registration deadline (I thought I'd left plenty of time until my car failed inspection the first time!), driving all over town taking my father-in-law to doctor's appointments, plus my own commitments. So, bottom line - it's just been a really difficult couple of months.

My doctor saw me again Friday and switched me to a stronger antifungal med, alternating days with the one I've been taking. I hope this works because I've been feeling so frustrated and fed up with all this. I also have a cervical biopsy scheduled for Tuesday after an abnormal Pap smear, so I've been worried about that (I went through the same thing about 10 years ago and it turned out fine, but now I know how much the biopsy hurts!). All of this just has me feeling like I'm on the edge of an emotional breakdown - you know what I mean? Sometimes with this illness, you just feel like you can't take anymore.

I've been planning to write an in-depth blog post on yeast overgrowth/candida, but I keep waiting until I resolve my own problem so I can write about what finally worked - no luck so far! In the meantime, if you are also struggling with yeast problems, you can check out this older post on yeast overgrowth for some information.

Hopefully, these new meds will finally do the trick. I'll keep you posted. Wish me luck!

One joy lately: the brilliant fall colors! I hate to see them go.

Monday, November 10, 2014

Movie Monday 11/10

My husband and I enjoyed a rare quiet, relaxing weekend! Our son was out of town, and we ignored the never-ending to-do lists and just took it easy for a change. We took a walk together on a lovely fall day, started a jigsaw puzzle (it's been years since we've done that!), read good books, met friends for dinner, and enjoyed a really good movie:

Nothing quirky this week - we went for a mainstream hit that got great reviews: Begin Again, starring Mark Ruffalo, Keira Knightley, and Adam Levine, in a musical romantic drama/comedy that doesn't fit the usual genres. Ruffalo plays Dan, a music executive who used to be on top but is now struggling (and often drunk). One night, Dan hears Gretta (played by Knightley) singing in a bar and is blown away by her original song and her voice. He convinces Gretta to embark on an ambitious project with him. Gretta is still getting over a betrayal by her boyfriend Dave (played by Levine) who is now off making a name for himself as a singer/songwriter, in what Gretta had assumed would be a partnership. The project that Dan and Gretta take on gives them both a fresh start (hence the title). The plot description alone doesn't do this movie justice because its magic is in the actors and music (and the script is great, too). Ken and I both really enjoyed the film; it's uplifting and full of hope and will leave you tapping your feet and singing along...and believing in second chances.

I enjoyed the music so much that I listened to some of the songs on YouTube today, like this one sung by Keira Knightley (she really did her own singing in the movie and is surprisingly good!):

The video includes scenes from the movie. I liked the music so much that I plan to buy the soundtrack.

Have you seen any good movies lately?

Friday, November 07, 2014

Claim Your Illness Experience, Don't Let It Claim You

I like to start my morning by listening to a TED talk while I eat breakfast - something funny or enlightening or inspirational. This morning, I cam across a talk by a cancer survivor that really hit home.

Though her own bad experience was cancer, she is talking about bad, life-changing experiences in general here - whether it is cancer or rape or an unfair firing....or illness, in our case. And although, we don't usually recover from ME/CFS or become "survivors," a lot of what she discusses here is very relevant to us. The one line she repeats often in this talk is:

"Claim your bad experience; don't let it claim you."

She talks about the dangers of defining yourself by these bad experiences. No matter how sick we are and how limited in our lives, we can still define ourselves by our roles and passions, beyond just being sick. I love her opening question about defining yourself. So, check it out for yourself - it's a short talk, only 16 minutes long:

Oh, and the bit about cancer awareness panties alone is worth a good laugh, at the very least!

She's given me a lot to think about, including how much time I spend every day immersed in our world of illness. Hope you find it just as thought-provoking as I did!

So....three things that define me: I am a writer, a book lover, and a parent.

Wednesday, November 05, 2014

The Perils of Traveling with ME/CFS

In front of Jackson Square, our first day
On September 30 this fall, my husband and I celebrated our 25th anniversary. We had planned a long weekend trip to New Orleans, where we used to live when we first met, dated, and married. We were excited about the rare getaway on our own, but I was also very anxious about various aspects of the trip and worried about how I would handle it all. I've written previously here about my strategies for managing air travel and about how well I usually do on our annual summer camping vacations, but I knew that a city vacation had its own unique perils. To make matters worse, I hadn't been feeling well during the two weeks before our trip - not totally crashed but not good either. As is sometimes the case, whatever could go wrong did! Here are some of the things I was concerned about and what worked (and didn't work) on our trip....and some of the things that went wrong that I hadn't anticipated!

Plain and simple, the biggest worry of all for those of us with ME/CFS, no matter where we go. In this case, I was particularly worried because New Orleans (and most cities, I suppose) is a walking city. 

As I knew would be the case, we did a LOT of walking - we walked to meals, wandered the French Quarter, walked while shopping and sight-seeing. We occasionally took taxis and used the streetcars a few times (a lovely form of transportation in New Orleans), but we still did a lot of walking. I knew, based on how I'd been the previous two weeks, that I was doing too much, but I felt like it was our 25th anniversary. I wanted the trip to go well, and I didn't want to ruin it for my husband.

Ha! What's nightlife for someone who goes to bed by 10 pm every night? Yet, New Orleans is a city for night owls. Walking around the French Quarter, we passed a nightclub (and I use the term loosely) called The Dungeon where we used to go with friends many years ago. It doesn't even open until midnight! So, yeah, that was out. There are a lot of live music venues in the Quarter, but most are crowded, many are standing room only, and all are very noisy. Thankfully, my husband didn't want to put up with the loud noise, either, so that worked out OK. Most evenings, after dinner, we just walked around a bit, peeking into shops, taking in street performers and the other (ahem) sights of Bourbon Street, but I couldn't handle much walking at that time of night.

One thing we did that worked out great was to visit Pat O'Brien's famous piano bar. We went in at about 8 pm, so there was no line (a benefit of going to bed early!) and got a seat at a crowded table right near the two pianos. No, I didn't order any Hurricanes. But I did come up with a brilliant idea, since I can't have alcohol, caffeine, or sugar, which leaves me without many choices in a bar! I ordered Bloody Mary mix without the vodka - I not only had a fancy drink to sip on, but tomato juice is loaded with sodium, so it was helping my Orthostatic Intolerance as well!

We had a blast at the piano bar. They played and sang a wide variety of music, everything from 70's ballads to 80's rock to current pop songs, with a smattering of oldies and classic New Orleans' tunes. We had a lot of fun singing along. I was starting to wear out after about an hour, but we stayed for almost 90 minutes.

And as for being back in our hotel room by 9 (sometimes 8:30) every night? I apologized to my husband for being such a party pooper, but he reassured me he was worn out and ready to go back, too!

You would think that after 12 years of living with this illness and taking piles of pills every day, it would be impossible for me to forgot my medications. But apparently, it's not. Despite my repeated checks before we left home that I had all my meds packed in my carry-on, plus all the over-the-counter stuff I might possibly need, when we arrived at the hotel, I realized I forgot the most important medication box that I have: my bedtime meds. These include the medications I take to correct sleep dysfunction, allowing me normal, refreshing rest at night (extra important on a trip); my beta blocker that keeps my heart rate down to normal levels so I can walk and be active without crashing; and my birth control pills which hold my hormone levels steady to prevent migraines, as well as the obvious function of preventing my period (which makes me crash). I was panicked - a 4-day trip without those essential medicines would be a disaster.

So, we spent much of the first 24 hours of our anniversary trip trying to replace my meds. During our first dinner out, I had to excuse myself to talk to the doctor on call to explain my predicament. Of course, it was a Saturday night, so there were no pharmacies open until 10 am the next day. The next morning, I was on the phone again, back and forth with the doctor and the pharmacy. I had to wear my heart rate monitor and be careful, as without the beta blockers, my heart rate was much higher than normal.  Finally, my meds were ready to pick up...but they were out of stock of one of them which had to be ordered from another Walgreen's. We took a cab to that drugstore and finally - around noon on Sunday - had all my meds again and were able to resume our vacation. But the damage had been done - a night without good quality sleep and hours of walking without beta blockers had already taken its toll.

One of many amazing meals!
Food, oh, the food! This is one of the primary reasons to visit New Orleans, and we had many favorite restaurants we wanted to visit. Seafood, desserts, local specialties - there is just so much to enjoy there! I am dairy intolerant and have been on a Paleo diet (no grains, no dairy, little sugar) since February. In some places, especially with main courses, it was easy to stick to my dietary restrictions - fabulous fresh fish or shrimp with local vegetables or a salad is what I would have ordered anyway. When it came to dessert, I threw all the restrictions right out the window. That double-chocolate caramel bread pudding the first night was well worth the stomach upset later! For our anniversary dinner, we treated ourselves to a superb restaurant that we went to when it first opened 24 years ago. We thoroughly enjoyed the food on our trip, though I'm sure ditching the diet (and especially the sugar and dairy restrictions) contributed to my growing exhaustion and my later problems. I did really miss sampling all the fabulous beer and wine in New Orleans, though, especially since I was young and healthy when we used to live here - it was hard to compare my current circumstances with the times we used to spend in these places, before ME/CFS, and sometimes a bit depressing for me.

Unforeseen Circumstances
All of these were things I'd more or less foreseen and/or worried about, but by Monday, another common travel issue took me by surprise. I woke up Monday morning with a tightness in my chest and a mild cough. For me, that means just one thing: bronchitis. The classic immune dysfunction of ME/CFS makes me extra-susceptible to bacterial infections, and those symptoms ALWAYS lead quickly to bronchitis for me. I don't know whether I picked up a germ on the plane on the way down or already had it in my system when we left home, but by the time we flew back on Tuesday, I felt truly awful, with chest congestion and a cough, coupled with crushing exhaustion and aches. I ended up with an extra-nasty case of bronchitis that didn't respond to the first round of antibiotics and turned into pneumonia. I finally got rid of those infections a few weeks ago but then was left with a bad flare-up of yeast overgrowth from the antibiotics - despite taking all kinds of precautions - that I am just now recovering from six weeks later.

So, all in all, it was a difficult trip for me, though there were certainly things that I enjoyed. It was good to be back in our favorite city but also hard for me to be there as such a different person than I used to be. Travel is difficult under the best of circumstances, and several things on this trip went wrong. I definitely do better on our camping road trips, where we bring our own little home on wheels with us and go at our own pace. We have wanted to go to Europe for years (though we can't afford it right now because all our money goes to medical expenses!), but this short trip to New Orleans reinforced to me how difficult it is for me to travel in this way - airplanes, cities, hotels, walking, etc.

What have been your experiences with travel? Do you have any tips for making things easier?

Our 25th anniversary dinner at Bayona, an old favorite