Preparing for a Trip

I am leaving tomorrow on a 4-day trip, and I have been awash in preparations for it all week. I've written here before about air travel with ME/CFS and how I manage that, but this is (or should be) much simpler - I'm driving. Still, though, in order for me to successfully manage this short weekend trip, I have to spend a lot of time preparing for it. I feel like a military leader about to go into battle!

For starters, it's just a 2-day event, but I needed to spread it out over 4 days in order to allow for plenty of downtime on the way there and back. And I have the option to give myself a 5th day, if I'm not well enough to finish the drive home on Sunday. I'm going to a Booktopia, 2-day book event in Manchester, VT, for book lovers and readers. I've wanted to go to this for years but never thought I could manage it. When I heard this would be the last year for the event, I decided to give it a try and asked my mom to join me.

Manchester is about 7 hours from my home, so I am breaking the trip into two segments (and getting some help). Tomorrow, I'll drive the first half to my mom's house in CT. I need to leave in the morning because morning is my higher-energy time, so when I arrive at her house at about 1 pm, I will take my usual afternoon nap. She and I plan to go out to dinner together, and then I will go to bed early.

First thing Friday morning, we will drive together the rest of the way to VT. Check-in for the event is between 12 and 1 pm, so we'll need to hit the road early. That means I need to get up extra early so that I have time to make my usual veggies & eggs for breakfast - otherwise, I won't have the energy to manage the long trip. Once we get there and check in, my mom will jump right into some of the fun events planned, while I will go back to our inn and take a nap.

From there, I am hoping the 2 days spent in VT will be manageable for me. I do have to skip the scheduled activities in the afternoon (which means missing the author I most wanted to see) so that I can take my nap - I just can't make it through the day without that. But I am planning to participate in the morning and evening activities. Thankfully, things wrap up by 9 pm each night. It will be something like a marathon for me, but I should be able to handle it.

The other aspect that I am concerned about and planning for is food and meals. I eat a Paleo diet - because I am intolerant to some foods, other foods feed my yeast overgrowth and make me sicker, and I feel better if I stick to the diet. For an activity-packed weekend like this, I need all the help I can get! In addition, like many people with ME/CFS, I have low blood sugar, so I am always worried about where my next meal will come from! My husband teases me for carrying food with me everywhere, but it's necessary. I will be packing a snack bag today, with foods that I can eat that won't upset my stomach or make me feel worse. I have been studying the event schedule to see how I can fit in 3 full meals each day in between activities!

To make matters more complicated, I will need to eat dinner at 5 pm before the evening session rather than wait until 8 or 9 pm when most others will be eating and will need to eat a full breakfast in the morning when I first get up. No food = no fuel = collapse. Not much choice in the matter.

So, I have lists all over the place - to-do lists, packing lists, food lists. I have plotted out my driving time and my meals in great detail. I have printed maps, instructions, event information, and searched for local restaurants. I am trying to take it easy today - no walks despite the nice weather! - to conserve my energy for tomorrow. I will load the car with my water bottle, Paleo snacks, pillow, all my meds, and extra meds just in case. I have planned everything that I can plan, and by tomorrow morning, I will need to just cross my fingers and hope for the best - wish me luck!

What helps you when traveling?

Movie Monday 4/27

Another great movie week for me! I watched a documentary, a top movie in the theater (!), and an excellent movie on DVD, too:

I have been wanting to watch more documentaries, and I finally started last week. I always hear about great documentaries, so I decided to include some in my lunchtime viewing. My first one was Without a Home, an award-winning documentary about homelessness. Young director Rachel Fleisher shot the film over a four-year period in Los Angeles. She drives around the city and finds six different homeless people/families to profile. There are two addicts (one who manages to get clean and one who fails), a family all living in a tiny room, a young woman who is mentally handicapped due to childhood abuse, and others. Rachel chose a variety of people in a variety of situations, which gives you a broad idea of the scope of the problem, the different reasons someone might become homeless, and the barriers to getting back on their feet. In the process, she becomes a part of the story herself, as she gets involved in their lives and does what she can to help. It was an enlightening and very moving film, and I cried both tears of happiness and sorrow. Ultimately, Rachel shows what it is like to be homeless, how challenging it can be to dig out of that situation, and the deep and complex issues that contribute to the problem.

I have been dying to see the movie Wild ever since it was released because I loved the powerful memoir (book review here) it was based on. When I saw it listed as part of our local city's annual Film Festival last week, I invited a friend along to see it with me (we both love the outdoors). Wild is the true story of a young woman named Cheryl Strayed who set off on the Pacific Crest Trail with absolutely no preparation for a 3-month long, 1000-mile hike in the hopes of literally saving her life. Cheryl spiraled downward into ever-more destructive behavior after her mother died from cancer, cheating on her husband with strangers, drinking to excess, and even using heroin. This is the story of her epic long-distance hike but also of her healing emotional journey along that trail. It starts with her first setting out on the trail (as an experienced backpacker, it hurt me to see how poorly prepared she was!) but flashes back to how she got to that point. While it is moving and emotionally powerful, it is also funny and entertaining. This is an all-star, top-notch film from every perspective. Reese Witherspoon was so moved by the book that she bought the film rights and starred in the movie, and she is absolutely amazing in this role, just as powerful as Julianne Moore in Still Alice (who won the Best Actress Oscar). In addition, Nick Hornby wrote the screenplay, and the scenery is just stunning. Brilliant from beginning to end and highly recommended.

Finally, my husband and I watched The Judge Saturday night at home, a movie we've both been wanting to see for a while. This is another movie with an all-star cast and excellent acting, including Robert Downey Jr. in the lead role as Hank, a successful, cutthroat Chicago lawyer who goes home to his small town for his mother's funeral. His father, played by Robert Duvall, is a prominent local judge, and it's clear from the start that he and Hank are estranged. Hank's two brothers (one of them played by Vincent D'Onofrio) have stayed in town, but all three sons call their father "Judge," as does everyone else in town. Hank plans to leave as soon as the funeral is over, but a tragedy occurs and before long, his father has been arrested and accused of murder. Despite their differences and animosity for each other, Hank can see that his father needs his help, so he stays to defend him. We loved this suspenseful and emotionally powerful movie. It's a legal drama but mainly it is about family relationships and overcoming past hurts.

Have you seen any good movies lately?

Ground-Breaking Research Into ME/CFS Immune Dysfunction

I am about two months late with this exciting update in the world of ME/CFS research. I've had more than my share of bad days this winter and spring, and I also wanted to gather more information so that I could better explain the impact of this ME/CFS research breakthrough.

On February 25, Columbia University's Mailman School of Public Health (note: major university) announced the results of its Center for Infection and Immunity's exciting new research to identify the exact characteristics of the immune dysfunction in ME/CFS. Columbia sent out a press release summarizing the research, with the full study report available here.

A word of warning before you read the press release or any news stories based on it: whoever wrote it was very poorly informed about past ME/CFS research and proclaimed this new study, "the first robust physical evidence that ME/CFS is a biological illness as opposed to a psychological disorder." Eeek - yeah, completely cringe-worthy. Someone in PR got a bit carried away with that one. Of course, we all know there have been plenty of studies showing the physiological abnormalities present in ME/CFS over the past two decades. Back in 2007, Dr. Nancy Klimas summarized many of these findings in her report, Chronic Fatigue Syndrome: Inflammation, Immune Function, and Neuroendocrine Interactions, which cites over 30 different scientific studies (and by the way, is an excellent scientific article to share with doctors). Since then, there have been more studies on immune dysfunction in ME/CFS.

So, try to ignore the flagrant errors in the headlines surrounding this new study, and let's instead focus on what IS ground-breaking about it:

• It was the largest ever (by far) study of ME/CFS immune dysfunction, involving almost 300 patients and over 350 healthy controls from multiple locations. Since many previous ME/CFS studies have been very small (often due to a lack of funding), the mere size of this study is big news. The smaller studies are often ignored in literature reviews, like those recently done/in progress with P2P and IOM - this one will not be ignored.
• It was also the broadest ever immune study of ME/CFS in terms of scope, looking at 51 different immune biomarkers in blood plasma samples.
• It was headed up by a world-renowned virologist, Dr. Ian Lipkin, which brings immediate credibility and visibility to the study (something ME/CFS studies rarely get) and included eleven other co-authors who include the world's top ME/CFS clinicians and researchers, including Dr. Nancy Klimas, Dr. Daniel Peterson Dr. Jose Montoya, Dr. Susan Levine, Dr. Lucinda Bateman, and more. This combination of credible outside researcher plus top ME/CFS specialists is unique to date.
• For the first time ever, this study identified significant differences in immune function between early ME/CFS patients (less than three years) and those who've been ill for more than three years.

In short, the study showed that early-stage patients who'd been sick for less than three years showed elevated levels of many different cytokines (immune markers), indicating an immune system over-reaction that is familiar to all of us who've suffered from recurring sore throats, swollen glands, flu-like aches, and other immune-related symptoms. These results support the long-held theory that ME/CFS is a "hit-and-run" event, where some sort of infectious trigger (mono and Lyme are common ones) sets off an immune system over-reaction that continues even after the infectious agent itself quiets down, similar to a car stuck in high gear. This theory has been generally accepted among experts and patients for many years, but this study provides even more evidence.

A completely new development from this study was the finding that there is a difference between early-stage patients and later-stage patients. Three years seems to be the turning point, and after that, certain immune markers (various cytokines) show a marked decrease. The report itself includes details of all 51 biomarkers measured - which ones were high in the early stages, which ones were low, and which ones shifted after the 3-year mark (there are lots of graphs in the report to help explain the results).

One thing that confused me - and that I'm still not certain I completely understand - is how this new research fits into the already-understood aspects of immune dysfunction in ME/CFS. Two points have been reiterated over the many years of studies:

• ME/CFS is neither a condition of autoimmunity nor of immune deficiency; instead, our unique type of immune dysfunction is a mixed bag - certain immune elements are over-active and others are under-active.
• ME/CFS is a condition of Th1-Th2 imbalance, usually identified as Th2 dominant. I explained this in an earlier post about immune dysfunction in ME/CFS, but briefly, it means that our immune systems tend to over-react to viruses and allergens and under-react to bacterial infections, among other things. Certainly, our own experiences here, with my sons and I, have always born this out - allergies got worse with ME/CFS, we developed new food intolerances, we rarely "catch" viruses like colds or flu (though the resulting immune stimulation from exposure can feel like a virus), and any tiny bit of congestion always turns into a secondary bacterial infection, like bronchitis or a sinus infection.

From what I read about this new study, it doesn't negate those previously held theories about ME/CFS but adds more detail to our understanding of the immune dysfunction and shows new evidence of a difference between early and later-stage disease that hadn't been observed in a research setting before.  Personally, my son and I still seem to have the same type of immune dysfunction (though definitely fewer sore throats), though that may be in part due to our treatments aimed at normalizing the immune system which might reduce these differences. If anyone knows differently or understands it better than I do, please share your knowledge!

Finally, I asked a few questions of Dr. Susan Levine who is a co-author of this study, Chairperson of the CFS Advisory Committee, and our own ME/CFS doctor. Her comments on the meaning and effects of this new study include:

• The differences in early- and late-stage patients found in the study mirror what she often (though not always) sees in her own patients - newer ME/CFS patients tend to have more prominent immune-related symptoms like sore throat, swollen glands, flu-like aches, etc. while patients in the later stages of the disease tend to have pain and cognitive dysfunction as more prominent symptoms (of course, all have the tell-tale exhaustion and post-exertional crashes).
• As for immediate applications for patients, that is probably still a bit farther off. She said that the kind of cytokine testing done in the Columbia study is not yet available in commercial labs. This may not change anytime soon until there are ways to treat the abnormal cytokine levels - currently, there is no impetus for labs to add these tests.
• In comparing the short-term and longer-term patients, she said they "are also looking at site variability, differences in gender and ethnicity and other environmental influences (urban vs suburban vs country dwellers) to see if there is an impact."
• "While these are interesting findings, it would be good to look at T, B, and NK cells in addition, as well as autonomic dysfunction, metabolic changes, and pain levels in these `short duration' versus `long duration' patients to see if there is some additional correlation with other parameters."

So, essentially, this is exciting new research that does represent some breakthroughs and new ideas, though there may not be much immediate effect that patients will see. The finding of a difference in short-and long-term patients will certainly be of interest to clinicians who may slightly vary their treatment protocols for newer versus longer duration patients; however, the overall immune dysfunction is still a mixed bag, meaning that medications to suppress or stimulate the immune system will still have limited efficacy for ME/CFS patients. We are still best off trying to treat with immune modulators to normalize the immune system.

And, of course, this new study brought much-needed visibility to our disease and should provide plenty of fodder for further study and new interest from other outside researchers. And, hopefully, those silly headlines along with the hard data will finally put to rest the outdated idea that ME/CFS isn't a "real" disease.

Does this study fit with your own ME/CFS illness history? Did you notice a change or difference after the 3-year mark?

(For more information, see articles published by The Atlantic and by Science Advances.)

Recipe: Sugar-Free Dark Chocolate Bark

Tasty sugar-free chocolate bark is a treat!

Updated August 26, 2023:

My son and I both have ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Lyme disease. Back in 2014, we switched to a Paleo diet and got super strict on limiting sugar in an effort to get our yeast overgrowth/chronic thrush under control and to improve our mitochondrial function and energy. It has definitely helped. We do both still have yeast flare-ups occasionally and have to stick to a moderately strict diet--we both eat a modified Paleo diet now, as described in this post, with plenty of variety, including fruits. Research shows this kind of diet to be best for those with immune disorders, which includes ME/CFS and long-COVID. When yeast overgrowth flares up again, we tighten up the diet. This post lists all of the treatments that help to control yeast overgrowth, which is very common in ME/CFS and long-COVID due to our immune dysfunction.

Finding a source of dark chocolate treats with no sugar was a priority for both of us! If you read the labels of most commercial products labeled "sugar-free," you'll see that they contain sugar alcohols (end in -ol). While these are zero-calorie sweeteners, they do still feed yeast (with two exceptions, xylitol and erythritol, which actually help fight yeast). Also, many commercial low-sugar or no-sugar chocolates contain dairy, which we are both intolerant to, as are a full 30% of ME/CFS patients.

If your yeast is mostly under control, and you are trying to maintain that state and limit sugar, then super-dark chocolate is a good option. Chocolate labeled with 86% cacao content or higher contains less than 1g of sugar per square. There are lots of brands available if dairy isn't a problem for you, including Ghiardelli, available in most drugstores and grocery stores. Since I am dairy-intolerant, I enjoy Hu or Theo brands, which are vegan/dairy-free (but stick to the darker varieties and watch your serving size, as the sugar content can add up, even in the 70% varieties).

So, I experimented with making our own dark chocolate bark, starting with unsweetened chocolate (baking chocolate) and adding small amounts of stevia (we like Truvia brand with erythritol) or xylitol (erythritol and xylitol both fight yeast). Here is the resulting recipe (and here is an earlier recipe I posted for Chocolate Sunflower Butter Cups):

 

Mostly Sugar-Free Dark Chocolate Bark

Easily doubled or tripled

4 oz (1 package/bar) Baker's unsweetened baking chocolate (inexpensive and available in any grocery store on the baking aisle) or any unsweetened baking chocolate, 4 oz.

1/2 tsp coconut oil (stabilizes the mixture to prevent "bloom")

1 tsp (or to taste) stevia (we use Truvia brand with erythritol) or xylitol

1/2 tsp alcohol-free vanilla extract (like Trader Joe's) - optional

Optional Additions:

Unsweetened coconut

Sunflower seeds

Pumpkin seeds

Nuts, like almonds or cashews

Peanuts
Flaked sea salt (or any sea salt, sprinkled on top)
(go for salted seeds and nuts--good for Orthostatic Intolerance!)

1. Break chocolate up into pieces and put in a glass bowl or 2- or 4-cup glass measuring cup, along with coconut oil. Microwave in short intervals (30-60 sec), stirring in between, until chocolate is mostly melted (the exact time will depend on your microwave; I usually start with 1 minute, stir, then another 45 seconds).
2. Stir chocolate with a silicone sptaula (some of the chunks will still appear solid but will incorporate into the melted portion as you stir). Add stevia, Truvia, or xylitol, to sweeten to taste, and stir well. The amounts listed above will give you the equivalent of very dark chocolate. Add more if you like yours sweeter. Microwave for another 30-40 seconds and stir again.
3. Stir in alcohol-free vanilla.
   
4. Add whatever additions you like and stir. I love coconut, so I add lots of unsweetened flaked coconut to mine, plus some sunflower seeds for a bit of salty crunchiness. My son likes a mix of pumpkin and sunflower seeds in his. You could also use some chopped nuts, though seeds are generally less inflammatory than nuts for those with immune disorders. Lately, I have been making one plain batch, with just sea salt on top, and one batch with peanuts, seeds, or nuts.
   
5. Spread the mixture out on a piece of foil on the kitchen counter, using the spatula to get as much of the chocolate as possible out, and let cool at room temperature.
6. When solid, break the bark into pieces. Store in an airtight container or plastic bag at room temperature (refrigerating chocolate can change its taste and texture).

NOTE: Stevia won't affect yeast, and erythritol and xylitol actually help to fight yeast.

© Suzan L. Jackson 2023

(Do not reprint or publish without written permission from the author)

Warm Chocolate Bark after being spread on foil

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.

Movie Monday 4/20

I have been neglecting this blog! I didn't have any time last week for any writing at all, so it's not just the blog - things have just been busy, plus I wasn't feeling well last week (my one week out of 15 when I get my period). I am doing better now and hoping to finally catch up on some posts this week that I have been meaning to write for ages!

First, my weekly Movie Monday post...We saw two movies last week, one a recent Oscar contender and the other an extremely obscure movie from the 1950's!

Friday night, we rented The Imitation Game, starring Benedict Cumberbatch as Alan Turing, the brilliant but socially awkward man who helped win WWII by decrypting the famed German Enigma code. Keira Knightley co-stars as the only woman working on Alan's team. We both enjoyed this historical drama very much. Neither of us knew much of the story before we watched the movie. The film moves back and forth in time between Alan's childhood being bullied at boarding school and his reliance on his one beloved friend there, his work on Enigma during the war, and a point after the war, in the 1950's when a local police officer decides to investigate Turing, thinking he might be a spy. In this way, you get insight into Turing's personality and his life, as well as the behind-the-scenes story of his top-secret work that changed the fate of the world. Cumberbatch did a marvelous job as Turing, and Knightley's character gave me insight into what it might have been like to be a very intelligent woman at a time when women had few choices in life. Overall, an engrossing and entertaining movie.

Saturday night, we watched a really bizarre movie from 1952 called The 5000 Fingers of Dr. T with some good friends. Our friend remembered watching this movie on TV when he was a kid, so when it aired last week on TCM, he recorded it. As you can probably tell just from the title, this is one weird movie! It was written and developed by Dr. Seuss, which tells you most of what you need to know. It's the story of a boy named Bart who takes piano lessons from Dr. Terwilliker. Bart dreams that he is trapped in a crazy castle, held captive by the evil Dr. Terwilliker, who wants to capture 500 boys to all play on his giant piano. Yeah, as evil plots go, this is a strange one! The whole movie is surreal but lots of fun. Oh, and did I mention it's a musical? So, picture a bunch of Dr. Seuss books all combined together, with lots of singing and dancing, along with doses of Alice in Wonderland, Willie Wonka, and Wizard of Oz. The whole thing is very Seussian - the sets, the colorful costumes, the song lyrics - so this is perfect for Seuss fans. It's strange, but I enjoyed it - lots of fun! I think our sons would have liked it when they were little.

Have you seen any good movies lately?

Movie Monday 4/13

Last week was an extraordinary week for us, movie-wise. My husband and I were camping at the beach and the weather was pretty much the worst imaginable - low 40's and raining for days! So, instead of lying by the campfire in the evenings, we went to the movie theater not once but twice!! It was a real thrill for us. We shared popcorn (not Paleo, but a nice treat) and enjoyed the warm, dry theater and two good movies (plus another on DVD when we got home):

First, we saw The Second Best Exotic Marigold Hotel at the theater. We both loved the first movie, The Best Exotic Marigold Hotel, for its humor and sense of joy, and though reviews of the sequel said it wasn't as good, we enjoyed it just as much. The same fabulous all-star cast is back, including Judi Dench, Maggie Smith, Bill Nighy, and more, as residents of the now-fixed-up-but-still-shabby-chic hotel. Dev Patel (of Slumdog Millionaire fame) is also back as the indomitable Sonny whose disposition matches his name. Now, Sonny is preparing for his wedding and is also in negotiations with a large corporation for a franchise for a second hotel he wants to open nearby, based on the success of the first. He's told that an anonymous guest will come to check out the hotel. When the handsome Richard Gere arrives, Sonny assumes he is the reviewer. The expected farcical comedy follows but with the same warmth and sense of heart of the first movie and the same humorous yet honest exploration of aging. This movie even comes complete with a Bollywood-type musical production. We left the theater with big smiles on our faces - a guaranteed feel-good, uplifting movie and a lot of fun.

The next night, we went back to the theater to see Insurgent, the sequel to Divergent, based on the series of books by Veronica Roth. As you might guess, this one was pure action and suspense. Tris, played by Hollywood's latest hot new star, Shailene Woodley) and Four are back as their dystopian community organized by factions begins to break down. War seems inevitable, and much of the movie is about deciding who to believe and who to follow, as the displaced Dauntless faction searches for a place to belong and Tris tries to make peace with her Divergency. This movie is pretty much nonstop action, with lots of running, fighting, jumping, and chasing, but it is all set within an interesting and unique dystopian plot. There is plenty of suspense here, and we enjoyed rooting for the good guys.

After getting home from our cold, wet camping trip, we were happy to be back on our couch and recliner, respectively, to enjoy another good movie. We had a free rental from Redbox, so we watched Interstellar, a movie we've both been dying to see since its theater release and that our college son loved. Interstellar is set in a dismal future, where nonstop dust storms are ruining the world, the only crop that will still grow reliably is corn, and there is a worldwide hunger crisis. Most people have to become farmers and are just barely hanging on. Matthew McConaughey plays a father who trained as an astronaut before the space program was dismantled and is now a reluctant farmer. He has a son and a daughter whom he loves and is particularly close to 10-year old Murph, his daughter. That makes it especially hard when an opportunity comes up for him to journey deep into space on a long-term mission to basically save the human race. He goes, along with a group of scientists, including one played by Anne Hathaway, to find another planet that humans can survive on. This is an epic movie covering generations about topics as far-reaching as family, the future, the human race, and the nature of time. My son and I both loved it and were especially moved by one surprise element. My husband enjoyed it for the most part but thought it was a bit too long (it is long, at just under 3 hours) and complicated. I loved every moment of it and found it suspenseful, moving, and thought-provoking, blending science fiction with a family drama.

So, we had a great movie week! Have you seen any good movies lately?

New ME/CFS Guide for Clinicians

Back in February, I wrote about the big news that ME/CFS had a proposed new name, SEID, and its first-ever diagnostic criteria in the U.S.

The IOM group that developed the criteria took that a step further and came up with a relatively brief and easy-to-use ME/CFS Guide for Clinicians. You can print the guide at that link (just 20 pages, total) and share it with your doctor (some of those pages are title, table of contents, members of the committee, etc. - the heart of the document is nicely summarized and includes easy-to-use charts and graphs). In fact, share it with every doctor you see! This straightforward, clear explanation of ME/CFS had the potential to make a huge difference where it counts: with the family doctors, nurses, and primary care physicians who are so often the first medical professionals that someone with ME/CFS encounters.

I've printed a copy to take to my own doctor when I see her on Friday. She already knows how to diagnose ME/CFS - she diagnosed me after a year of mystery illness that no other doctor could figure out. However, I am hoping she will share it with the other doctors and nurse practitioner in her practice.

So, print a copy now and help to spread the word!

Weekly Inspiration: Emotional First Aid

Earlier this week, I wrote here about happiness and optimism. Lots of people told me they could relate to that post, that they too found joy in small things. One online friend said she herself was in a similar state of mind right now, having also come through a recent bad period and finally feeling a bit better - she described it as " a ridiculous enthusiasm for everything" (a perfect description) and told me how excited she was over the amazing omelet she made herself for lunch!

But, I know that there are at least as many of you out there who could not relate to that post, who are not happy, who feel overwhelmingly beaten by this terrible disease, and who feel that you have nothing to look forward to. As another friend put it, sometimes "one is simply dealing with this minute and the next, and hoping for some point of light and solace in that dark place, as the most we can manage." And I get that that, too, because I have gone through periods like that, early in my illness even experiencing true depression for the first time in my life.

Today I found this TED Talk that I hope will be helpful to you. It's by a psychologist named Guy Winch who talks about "Why We All Need to Practice Emotional First Aid." He speaks to the need for emotional hygiene, just like physical hygiene, though something that most of us overlook.

In his talk, he discusses loneliness, helplessness, failure, rejection, and focusing/obsessing over negative things - all crippling emotions that can actually affect our physical health if they go untreated or are not addressed. He explains how our emotions can fool us and the importance of  prioritizing our psychological health, that we should treat emotional pain just like we do physical pain. You can listen for yourself, in this short talk:



I really enjoyed this talk and found it fascinating. Even with my current positive state of mind, I learned some tips here that will be useful to me - his section on ruminating over negative things really hit home for me!

I hope you find this talk as inspirational as I did. Enjoy this weekend...and remember to take care of your mind as well as your body!

Living for Today and Looking Forward to Tomorrow

Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?

Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).

I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.

I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.

Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.

Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.

I still feel like I'm not explaining this well.

Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.

At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.

I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.

What are you looking forward to? What makes you happy?

Essay Published on Mamalode

My essay, While They Are Sleeping, is featured today on the home page of the Mamalode website (and will be available all month).

This is an older one that I wrote many years ago, back when our sons were just 6 and 3 years old, about checking on them while they slept each night before going to bed myself. It's something that I think any parent can relate to and makes me feel quite nostalgic, since my "boys" are now 20 and 17 and tower over me!

I hope you enjoy the essay - please share it with your friends!

Movie Monday 3/30 - the TV Edition

We didn't watch any movies this past week (nor the week before, since we were away for the weekend for my grandmother's funeral), so I thought I'd do a TV edition of Movie Monday.

Some people think we watch a lot of TV at our house, but as most of you probably understand all too well, it's a nice activity to enjoy with family members when you are too wiped out to do anything else! I pretty much hit the wall by 7 pm each evening, so my husband and I enjoy watching a couple of our favorite TV shows together, before we go up to bed at 9:30 to read. In addition, I usually watch something by myself at lunchtime - it's a nice way to wind down before my nap and give me a chance to watch something that the rest of my male-centric household won't watch with me! Finally, when my college son comes home on Sunday afternoons, he is usually completely worn out from the weekend, so he likes to catch up on some favorite shows with us. Here are some of our current favorites airing at this time of year:

My husband and I have a long list of shows that we enjoy watching together each evening. Some are old favorites, like Grey's Anatomy (my husband has pretty much had enough of it but I still love it and he still watches it with me) and The Good Wife (still as fabulous as ever!). We also enjoy The Blacklist, which just gets better and better, and Perception, a lesser-known series currently in its 3rd season about a schizophrenic neurology professor, played wonderfully by Eric McCormack, who helps the FBI solve cases.

Two of our current favorites are The Americans, about Russian spies living as a regular American family in the 1980's - an amazing show that is better every season! - and Madam Secretary, a new show starring Tea Leoni as the Secretary of State and Tim Daly as her husband, a renowned Religious Studies professor. It has its flaws - sometimes the problems are wrapped up a bit too easily - but Leoni and Daly are both excellent, as is the rest of the cast, and we are enjoying it. And, of course, Mad Men comes back for a final season this week!

On DVD, we have just finished watching the final episode of the final season of Treme, one of the best TV shows ever! It's set in New Orleans (where we used to live) after Hurricane Katrina. The music is just incredible, and the characters now feel like old friends - we were sad to say goodbye to them this weekend. If you've never seen this show, check it out.

It is rare that we can talk our 17-year old son into sitting and watching a TV show with us - he is usually running off to be with his friends or his girlfriend! Mostly, he likes sitcoms, and some of our favorites include Brooklyn 99, The Goldbergs (set in the 80's), Modern Family (best comedy EVER), and our latest discovery, Fresh Off the Boat. He will occasionally watch Bones with us, one of his old favorites. There is just one new drama that he will enthusiastically watch with us: How To Get Away With Murder. Wow, this is a unique, fast-paced legal thriller that will keep you glued to the screen. We all love it.

When our older son comes home on Sundays, he loves to catch up on The Following, The 100, Elementary, or NCIS - New Orleans with my husband and I. He and his Dad watch Vikings while I take my nap - they love it!

Finally, I look forward each day to relaxing over lunch with something the rest of the family won't watch with me! Two of my favorites were Parenthood and Glee, which both recently ended - forever! Like Glee, we all used to watch The Amazing Race together as a family, but everyone else lost interest, so I am watching that on my own now, too - I still enjoy it! Sometimes, I watch The Mysteries of Laura, which is fun, and I've been working my way through season 1 of The Gilmore Girls lately. If I am rushed for time, I like About a Boy or Moms and am enjoying the brand-new sitcom Younger.

How about you? What are your favorite TV shows? I am especially interested in any recommendations for me to watch on my own, now that Parenthood and Glee are both gone. Any girly-type stuff you especially like? I did enjoy the first episode of Outlander, but that was the only free one. We watch TV On Demand or on Amazon Prime or get DVDs from the library. Any recommendations? What are your favorites?

Weekly Inspiration: Celebrate!

I thought I'd pull from my own writings for this week's inspiration post, about our attitude of celebration.

At our house, we have always celebrated both minor and major holidays and events in a big way, but this approach became even more important after the three of us got sick. There is nothing like a little celebration to lift the spirits, whether it's for a major holiday, a minor holiday, or even something totally made up! My essay, Celebrate Everything Big and Small, recently published on the Mamalode website, describes how we add celebrations to our lives as a way to add joy to every day. The essay focuses in on the holidays of this time of year - from New Year's through Easter - but if there are no holidays coming up and we need a pick-me-up, we sometimes have Mexican Fiesta Night or some other made-up event.

This older blog post, The Joy of Celebrations, focuses in even more on adding celebrations to a life of chronic illness. Even if you are severely limited and can't cook, you can still celebrate all occasions in your own way - order take-out, ask a family member or friend to put up some decorations, wear a special color for a holiday, listen to appropriate music (I got a CD of Mexican guitar music from the library for Mexican Fiesta Night!), or maybe watch a holiday-themed movie.

Adding celebration and joy to your life is more a matter of attitude than of doing certain activities, and it is even more important if you have kids who are sick.

Now that our sons are 17 and 20, I can see that growing up with this celebration attitude has paid off. Our 20-year old son lives in an apartment with friends on a local college campus, and he and his friends are always hosting parties with really creative themes: they had a James Bond party last year and a Dark Party this year where the only light came from flashlights. I recently asked our son why there was an old pair of red suspenders in the car (which came from the costume box they used when they were little), and he said nonchalantly, "Oh, I used those for our Old Man Party." That's my boy!

So, the next time you are feeling a bit down or have had a bad day or week or month, plan a mini celebration! It'll lift your spirits and take your mind off your illness for a bit. We could all use a little extra joy in our lives.

My son and his two best friends at their James Bond party

Yeastie Beasties Got Me Again

Just thought I owed you all a quick post to explain why I've been so absent the past few weeks. I haven't even had the time/energy for my usual Weekly Inspiration posts every week.

Yeast overgrowth/thrush/candida got me again. This has become a chronic problem for me (and for my son, also) that keeps flaring up periodically. It seemed to come from nowhere this time, knocking me flat with extreme flu-like aches and exhaustion for over a month. I figured it out sooner this time than with past flare-ups, but it still took me a full month on antifungal prescription medications before I started to feel well, at the end of last week.

Since there was no obvious trigger this time (for instance, I hadn't been on antibiotics recently) and I have been sticking to all my natural yeast overgrowth prevention approaches (strict diet, strong probiotics, and lots of antifungal supplements), I was puzzled as to why this happened now and hit me so hard. Looking back at my records (it's so helpful to keep track!), I saw the following sequence of events:

• July - September - took doxycycline (an antibiotic) for Lyme disease (a new infection that I caught early and was able to get rid of fairly easily this time)
• Early October - got bronchitis and then pneumonia which required two rounds of antibiotics - Zithromax and Cipro
• Severe yeast overgrowth flare-up (is it any wonder why?) starting in mid-September and continuing through to mid-November - it took about a month of antifungal medications to get that under control.
• Early February - yeast overgrowth flares up again, just after Mardi Gras 

So, based on that, I am thinking that I didn't completely get the yeast under control back in the late fall - I stayed on the antifungals just long enough to start feeling better and get rid of the thrush in my mouth, but it is likely that there was still too much yeast down in my GI tract. With that being the case, all it took was a couple of days off my usual strict diet (I did have some King Cake and bread pudding for Mardi Gras!) to trigger another bad flare-up.

So, this time, even though I am feeling better this week, after 4 weeks on alternating Diflucan and Ketoconazole, I am going to stay on the antifungals longer (switching to just Diflucan today) in order to make sure the yeast is really under control and I won't be back in the same crisis in another month. A friend who's a veterinarian also suggested taking a preventive dose of antifungals just one or twice a week long-term - she said it works for the animals she treats with chronic yeast problems. So I will probably try that, too, if my doctor agrees.

If you have never considered yeast overgrowth as a factor in your illness, you should. It is very common in people with ME/CFS, especially those who've been sick longer than 3 years, due to the particular type of immune dysfunction we have. It can make all symptoms worse but especially brain fog, flu-like aches, sore throat, and exhaustion. Here's more information on diagnosing and treating yeast overgrowth.

As for me, I am happy to be feeling like myself again (my ME/CFS self but still)! My baseline these days is actually pretty good, and I am thrilled to be back to taking walks and doing small bits of weight work...and just being able to go to the grocery store or drugstore and get off the couch!

Live Webcast Tomorrow on IOM Report

Announcement from Solve ME/CFS Initiative:

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You can watch the briefing live by registering at this link - you must register ahead of time to get the link to the live webcast. I just signed up - it only took a minute.

I was surprised to see that Morgan Fairchild is an ME/CFS patient - I had no idea!

Here's my summary of the IOM report and announcement from last month.

Celebrate Everything, Big and Small

My essay, Celebrate Everything, Big and Small, is featured today on the website Mamalode for their March Celebration theme.

Although I wrote the essay for a general audience, it does reference our life with chronic illness. The theme of this essay - that you can add joy to every day of life with celebrations of all kinds - is especially relevant to anyone living with chronic illness.

St. Patrick's Day was yesterday, but we still have the First Day of Spring coming up on Friday and Easter just around the corner. We can always find excuses to celebrate!

I hope you enjoy the essay and that is inspires you to celebrate everything, big and small, in your own way and embrace those moments of joy!

Movie Monday 3/16

I continued to battle the yeast demons last week but finally started to feel a bit better on Thursday, after 3 full weeks on antifungals. Not quite out of the woods yet but getting better and slowly returning to my own normal.

We had a mostly quiet weekend here, though we did manage to get out for dinner Saturday night and then got a DVD to watch:

I was very excited to see Before I Go To Sleep at Redbox! We both read the book and loved it (here's my book review), so we've been wanting to see the movie since its (too brief) theater release. Its release was mostly overlooked last year with all the buzz about Gone Girl at the same time, though I much preferred Before I Go To Sleep when I read both books. The movie adaptation was well done.

Nicole Kidman stars as Chris, a 40-year old woman with a type of amnesia where she can only retain 24 hours of memories. Whenever she goes to sleep, her recent memories, before the age of her mid-20's, are wiped clean (this type of amnesia really does exist, as described by Oliver Sacks in his book Musicophilia). So, she wakes up every morning thinking she is in her mid-20's and having no recollection of her husband who is asleep in the bed next to her. Her husband, Ben (played by Colin Firth), has covered the wall of their bathroom with photos of the two of them and their life together and Post-its reminding her of the important details of their lives. Every morning, she wakes up terrified, and he calms her down and patiently explains that he is her husband and that she had an accident and lost her memory. It's a frightening, yet repetitive routine. Every day is pretty much the same until Chris starts seeing a therapist who gives her a camera to make a video journal each night before bed to help her remember things. With the help of the camera and the therapist, Chris begins to remember things, but nothing makes sense to her.

This is an exciting thriller based on a unique premise. The movie does a great job of putting the viewer inside Chris' perspective so that you don't know who to trust or what to believe, and the tension mounts as Chris slowly begins to put some of the pieces together. A few details were different than the book, but the movie sticks pretty closely to it in most respects. We both enjoyed it.

Have you seen any good movies lately?

Movie Monday 3/9

My husband was out of town all last week and then got stranded in Texas for the weekend, too, due to the snowstorm here, so I watched two movies on my own (and also got hooked on The Gilmore Girls!):

I watched Young Adult, starring Charlize Theron as Mavis, a 30-something divorced author of YA novels. Mavis is clearly unhappy with her life, barely going through the motions and spending a lot of time either drunk or hungover and/or sleeping with strangers. When a baby announcement arrives from her high school sweetheart, Buddy, she gets it in her mind that the answer to all her problems lies in simply winning Buddy back. She heads back to her small hometown, intent on reviving their old romance. Since Buddy is now married and has a newborn daughter, things don't quite go as Mavis planned. While basically stalking Buddy, she runs into another former classmate, Matt, who was permanently disabled by some bullies in high school. This movie was billed as a comedy, but I found it pretty depressing. True, Mavis does make a fool of herself going after Buddy and being stuck in her popular girl high school persona when everyone else seems to have moved on, but it all felt more uncomfortable and cringe-worthy to me rather than funny. Supposedly, it's a dark comedy, but it seemed kind of tragic to me. The movie is very well-done, however, with a good script and acting. It just wasn't my cup of tea.

Chef, in contrast, is an uplifting and thoroughly enjoyable movie about food, family, fatherhood, and friendship. Jon Favreau stars as Carl, the accomplished and talented chef of the title, who is stuck under the thumb of an overbearing restaurant owner, played by Dustin Hoffman. John Leguizamo plays Carl's loyal line cook and enthusiastic best friend. Carl's life seems to be falling apart, as his ex-wife, Inez (played by Sofia Vergara), urges him to spend more time with his son, Percy, and leave the restaurant. She wants him to open a food truck, supplied by her first ex-husband, a quirky guy played by Robert Downey, Jr. Fed up and with few options, he finally gives into the food truck idea, and the whole family heads to Miami to pick it up.

The food porn in this movie is amazing! My mouth was watering, and the grilled cheese scene alone just about killed me (I'm dairy intolerant and miss cheese so much!). But this is far more than a movie about food - it is also filled with great music, family drama, humor, and one of the best road trip scenes ever. They drive the food truck cross-country, from Miami to L.A., in scenes filled with mouth-watering food, foot-tapping music, and a lot of fun. The scenes in New Orleans made me home sick. This film is well-written, beautifully produced, and filled to the brim with excellent performances by great actors. All in all, this is a gem of a movie, filled with joy, and I loved every minute of it. It is guaranteed to put a smile on your face, and those amazing cooking scenes inspired me to get back in the kitchen and get more creative this week!

I almost forgot...I actually went to the movie THEATER to see a movie on the big screen last week! My annual movie venture. A friend and I enjoyed a rare evening out, with dinner and a movie. We saw Still Alice, which is based on a wonderful novel by Lisa Genova. Julianne Moore stars as Alice, a 50-year old world-renowned linguistics professor at Columbia University (though in the book she worked at Harvard) who develops early-onset Alzheimer's disease. She is married - Alec Baldwin plays her husband - with two grown daughters and a grown son. To make matters worse, the kind of Alzheimer's she has is genetic, so her children are also at risk. The movie follows Alice from her first inklings that something might be wrong through her diagnosis and her very quick decline. The movie was just as good as the book, and Julianne Moore really earned her Best Actress Oscar. I cried so hard at one point - while Alice is giving a heartfelt speech during her decline at an Alzheimer's convention - that I actually floated my contact lens right out of my eye and had to run to the restroom to get it back in! Although it is heart-breaking, this movie is also about life and love and the strength of the human spirit. Any movie that can make you feel that much is a winner in my book.

Have you seen any good movies lately?

Weekly Inspiration: How To Talk To Yourself

For this week's inspiration, I have turned to someone I often turn to when I need help coping or need inspiration: Toni Bernhard.

Toni is a long-time online friend who also has ME/CFS, but more importantly, she is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow, as well as the author of a monthly column on living with chronic illness in Psychology Today. I highly recommend How To Be Sick - it's an inspirational and thought-provoking book that has helped me a lot. I still need to read and review How To Wake Up. I think I could use it about now.

In this month's column in Psychology Today, Toni writes about How to Talk to Yourself. As with all of her writing, it is an insightful essay that I found very helpful. In it, she discusses how positive self-talk can help you to feel better and have compassion for yourself. This is something I really needed to hear today, both because of on-going struggles with a bad crash and also ongoing struggles in an important relationship in my life. I want to write out some of the quotes that she includes in this essay in large letters and post them all over my house!

Two of my favorites:

"The greatest griefs are those we cause ourselves" - Sophocles

"Holding on is believing that there's only a past; letting go is knowing that there is a future." - author Daphne Rose Kingma

I hope you find Toni's words as inspirational as I did today. You can link to some of her other insightful posts at the bottom of the page. And I highly recommend her book, How To Be Sick.

2015 Health-Related Goals

Oh, it's March already? Well, I was a little late this year in setting my annual goals since my son was home crashed all January and now I am even later in posting about it, but you know my motto - better late than never!

Instead of resolutions at the start of a new year, I set goals with measurable objectives. The big goals stay pretty much the same from year to year, but the objectives shift and change depending on how things went the previous year, what I want to accomplish in the new year, and my priorities. I used to set annual goals and then forget about them until December (when I'd be disappointed!), but I find that focusing on measurable objectives and tracking them every week helps to keep me on track - I get more done, I feel better about myself, and by the end of the year, I feel I have made progress. In case you missed it, check out my post on my progress & improvements in 2014 (relevant to my health).

I have 6 big-picture goals that never change:

1. To have strong, fulfilling relationships with family & friends
2. To be a writer, writing what I enjoy, and contributing to my family's income
3. To spend time outdoors with friends & family, doing activities that I enjoy
4. To create and maintain a comfortable, happy, nurturing home environment
5. To be healthy
6. To be financially stable enough to take care of our family and reach our long-term goals

So, in this post, I will focus mainly on my objectives for 2015 for Goal #5, though other objectives also contribute to my health, like spending time outdoors, having healthy relationships, etc.

Some of my 2015 Objectives, specifically related to my health:

• Do 4 fun things for myself each week (I tend to focus on others so this helps me remember to do something for myself, too)
• Get together with friends once a week
• Go outdoors at least 10 minutes a day (helps my state of mind SO much!)
• Go camping at least 2 times in addition to vacations
• Try new treatments (we tried 9 new things last year)
• Walk at least 3 times a week
• Do gentle yoga stretches at least 5 times a week, for at least 5 minutes
• Do muscle strengthening at least 3 times a week (this is usually about 10 min, lying on the floor to keep my heart rate down)
• Meditate at least 10 minutes a day
• No computer after 7 pm
• Rest when symptoms flare (a tough one for me!)
• Take one day "off" per month, with no obligations or to-do's 

I did very well on my health-related goals last year, so I have high hopes to continue improving this year. I'm off to a rough start, dealing with a bad thrush/yeast overgrowth flare-up again right now, but even when I am crashed I can do things to help myself, like meditation and forcing myself to rest!

I know I tend to be very analytical and most people probably don't get this detailed in their goals, but do you have any health-related goals for yourself for this year?

Movie Monday 3/2

I felt pretty awful for much of last week with yet another flare-up of yeast overgrowth, so Friday night was take-out and DVD night!

We got Chinese food and watched Philip Seymour Hoffman's last movie, A Most Wanted Man. I'd heard good things about the movie before (especially in light of it being Hoffman's last work), but I didn't realize it was based on a thriller by John Le Carre. Most of his novels are set in the Cold War, but this story is a more modern one, set in the post-9/11 world. First a little history that I hadn't heard before: apparently, the 9/11 attacks were planned and plotted in the port city of Hamburg, Germany. Ever since then, both German and international intelligence agencies have been keeping a close eye on Muslim communities there, searching for any signs of terrorist activity.

In the film, Hoffman works for a small, secret organization in German intelligence, tasked specifically with ferreting out terrorist activity. His group notices a suspicious looking man at the airport, a half-Chechen, half-Russian Muslim man who is acting nervous and evasive. They watch him and everyone associated with him very closely as he moves around the city. Rachel McAdams plays an idealistic young lawyer who specializes in helping those seeking asylum, and William Dafoe plays a banker she contacts about some money that the mysterious man's father left him. Soon, other agencies are interested in the man, too, including the US State Department (with an embassy employee played by Robin Wright). The big question: is this man just an abused and persecuted person seeking refuge? Or is he a terrorist plotting another bombing? Most parties want to apprehend & imprison him first and ask questions later, but Hoffman and his group would rather watch and wait, hoping he will either lead them to more important people in a terrorist network or that he is perhaps an innocent man.

It's a tense thriller, with plenty of suspense. Like all Le Carre adaptations, it's got plenty of plot twists that keep you guessing and is a little bit complicated to figure out at first, but it soon becomes engrossing. This one keeps you wondering right until the last moments. We both enjoyed it very much.

Coincidentally, I just finished a wonderful, moving novel set in Chechnya that gave me the perfect background for watching this movie: A Constellation of Vital Phenomena by Anthony Marra

Have you seen any good movies lately?

(And if you are also interested in what we are reading this week, check out my Monday update at my book blog.)

Happy Illiversary to Me!

13 years ago today, my life changed forever, though I had no idea at the time. I thought I'd share a bit of how it all started (this is excerpted from an essay of mine):

"How it Began: The Beginning of My Journey with ME/CFS

March 2, 2002, was a typically hectic Saturday. I went to a step class at the YMCA. My husband and I ran errands and worked around the house while our two boys played, and we hosted a dinner party for friends. By evening, I was feeling a bit run-down and had a sore throat. I woke up on Sunday feeling rotten and thought, “I must have the flu.”

It certainly never crossed my mind that I might be sick for the rest of my life. I was a healthy, highly energetic 36-year old and was very content with my life. I’d had a successful and exciting career that I’d left two years previously in order to spend more time with my family. I was married to a wonderful man, had two sweet sons, and was launching a new part-time career in freelance writing.  I felt as though my life just kept getting better and better.

Despite feeling awful that Sunday morning, I insisted we go ahead with our plans for a day trip to Baltimore. We stopped for breakfast on our way out of town and drove the hour south to the city to visit the National Aquarium, Harborplace, and the Science Center. I remember that day in Baltimore clearly, even though I felt like I was isolated in a strange kind of fog all day. I sucked on hard candies nonstop to try to soothe my sore throat which was worse than any I'd had in years. I can remember clinging to the railings at the aquarium, barely able to stay on my feet. I had never felt so sick before in my life.

Everyone gets sick once in a while, especially with small children in the house, so I figured it was a virus. Once back home, I settled onto the couch, let my husband take over much of the household work, and waited to start feeling better. After a week, I did feel mostly better and resumed my normal, active life. We even took a planned trip to my sister’s house in Connecticut to see my newborn niece.

A few days later, I felt horrible again – exhausted, achy all over, sore throat. Could I have caught another virus so soon? What was going on? This didn’t seem like any flu I’d ever had before.

After several weeks with no improvement, I went to see my doctor. He ordered blood tests for the most common culprits: mono, Lyme disease, parvovirus, and a basic blood analysis. The good news came back:  everything looked normal. So why was I still sick?

During that first month, I spoke with my grandparents in Rochester, NY. They were both sick also and had been for a full month. Their doctor told them there was a particularly nasty flu virus going around. I hadn’t had any of the gastro-intestinal symptoms they’d had or a significant fever, but I still figured I must have the same thing. They were beginning to recover, so I stayed on the couch and waited for my recovery to begin.

Journal Entry, 3/21/02:

Beautiful first day of spring, but I didn’t get to enjoy it much.  I had a very rough day and felt pretty depressed.  I burst into tears 3 times today – once over a TV show!  I feel very fragile.

I’ve been sick for 3 weeks now, and I’m getting a little scared.  I’m so sick of feeling tired and achy, so sick of the couch, so sick of not getting anything done!  I want my life back!  I want my normal energy back!  I want to exercise and play with the kids and go to the grocery store and feel productive!

I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life. "

© 2015 Suzan Jackson

 I'm sure the rest of that story is familiar to you - a year of blood tests and doctors' visits, eventually a diagnosis, etc. And, here I am, 13 years later.

I am feeling pretty good today (after 10 days on antifungals, finally getting the yeast overgrowth under control again) and in a good frame of mind. At this point, ME/CFS is an integral part of my life. It's hard to even remember life before piles of medication and supplements, afternoon naps, and carefully monitoring my activity level.

I feel like I am in a good place now. Emotionally, I am happy and rarely get depressed any more (though these past few weeks have been a challenge!) Physically, I am doing much better now than I was 5 or 10 years ago and have found quite a few treatments that each help a little bit - those little bits add up to feeling better, being able to be more active, and having an improved quality of life. (Here's a blog post in my most recent improvements).

I still hope for more effective treatments or even a cure, and the research news lately makes me optimistic that there is real hope for all of us (more on that tomorrow!)

So, Happy Illiversary to me! It's not really a reason to celebrate, but it does provide a chance to reflect on how far I've come.