Wednesday, April 29, 2015

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?


Monday, April 27, 2015

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?

Friday, April 24, 2015

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.)

Tuesday, April 21, 2015

Recipe: Mostly Sugar-Free Dark Chocolate Bark

A little over a year ago, my son and I 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 out mitochondrial function and energy. It has definitely helped (though we both still have yeast flare-ups and have to stick to the diet). Note that if you read that older post linked above, my son is doing much better now and no longer needs to be as strict as when he started - we both eat a fairly standard Paleo diet now with plenty of variety, including fruits.

Finding a source of dark chocolate treats with little to no sugar was a priority for both of us! We tried commercial sugar-free chocolates and found a couple that we liked OK (Weight Watchers' brand peanut butter cups and WW or Whitman's brand toffee squares are both pretty good), but they do contain some dairy, we shouldn't eat too much of the sugar substitutes they contain, and the chocolate they use isn't really top quality (we are connoisseurs, after all). We also both enjoy super-dark chocolate - if you look for 80% cocoa or higher, it contains less than 5g of sugar per serving. But, again, that's not a perfect solution.

So, I experimenting with making our own dark chocolate bark, starting with unsweetened chocolate (baking chocolate) and adding small amounts of Stevia and coconut sugar (which is OK for Paleo and for yeast). Here is the resulting recipe (and here is an earlier recipe I posted for Chocolate Sunflower Butter Cups):

Finished Chocolate Bark - Ready to Eat!

Mostly Sugar-Free Dark Chocolate Bark

4 oz (1 package) unsweetened baking chocolate
1 tsp Stevia
1 Tbl coconut sugar

Optional Additions:
Unsweetened coconut
Sunflower seeds
Pumpkin seeds
Chopped nuts
  1. Chop up chocolate into small pieces and put in a glass bowl or 4-cup glass measuring cup. Microwave in short intervals, 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 (some of the chunks will still appear solid but will incorporate into the melted portion as you stir). Add Stevia and coconut sugar, 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. 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 hates coconut, so he liked a mix of pumpkin and sunflower seeds in his. You could also use some chopped nuts, though seeds are less inflammatory than nuts for those with immune disorders.
  4. Spread the mixture out on a piece of waxed paper on the kitchen counter (I put a layer of foil under the wax paper so the hot mixture doesn't melt the wax onto the counter) and let cool at room temperature.
  5. 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 and coconut sugar are acceptable for both Paleo and anti-candida diets and won't feed yeast. The coconut sugar doesn't dissolve completely - it leaves a slightly crystalline texture in the chocolate. If you don't like that, you can experiment with using just Stevia, but if you add too much, it may have an off-taste.


© Suzan L. Jackson 2015
(Do not reprint or publish without written permission from the author)

Warm Chocolate Bark after being spread on wax paper


Monday, April 20, 2015

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?

Monday, April 13, 2015

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!

Sunday, April 12, 2015

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!

Friday, April 10, 2015

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?

Friday, April 03, 2015

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!