Sunday, May 21, 2017

Weekly Inspiration: Lessons from Books

It's been a while since I've written a Weekly Inspiration post because I have been either traveling or busy on the weekends lately, when I normally write them. I finally have a quiet Sunday morning at home.

The focus of today's inspiration is a wonderful book that I am just in love with: Books for Living by Will Schwalbe (my review at the link). Schwalbe is the author of the best-selling The End of Your Life Book Club, which you may have heard of, where he chronicled his mother's last months and the books that he shared and discussed with her. I read Books for Living for Booktopia, a wonderful weekend event that brings together authors and book lovers (that was one of my trips and one that required two weeks to recover from - but it was worth it!). So, I not only read his book but also got to meet the author - he is just as warm and witty as his book.

You can read my full review at the link, but Books for Living is a series of essays about lessons the author has learned from a wide variety of books. Each chapter/essay focuses on one book and one lesson learned. My copy of the book is filled with dog-eared pages: books I want to read, quotes I want to remember, life advice, and more. So, today, I just want to share a few of my favorite quotes that are applicable to a life of chronic illness and that I found inspirational. I hope this will inspire YOU to read the book yourself (or listen to it on audio).

From the chapter on The Importance of Living by Lin Yutang (published in 1937), on the lesson of Slowing Down:
"...he wrote that he is "quite sure that amidst the hustle and bustle of American life, there is a great deal of wistfulness, of the divine desire to lie on a plot of grass under tall beautiful trees of an idle afternoon and just do nothing." The quote from Lin that at first seems to sum up his philosophy is this: "If you can spend a perfectly useless afternoon in a perfectly useless manner, you have learned how to live." "
          - Books for Living by Will Schwalbe, on The Importance of Living by Lin Yutang

According to Lin's standards, then, we must really know how to live! This chapter and this passage struck me because Slowing Down is one of the primary lessons I have learned from living with chronic illness. If I don't spend some time resting and doing nothing each day, then I suffer severe consequences. Of course, we aren't choosing to slow down, we are forced to, but it can still be a valuable and instructive part of our lives.

The other way this passage strikes me is that I am not naturally the kind of person who can "spend a perfectly useless afternoon in a perfectly useless manner." In fact, I have a lot of trouble doing nothing or even slowing down. Yes, I take time out for my daily nap every afternoon and I make sure I get to bed early so I can get my 9 - 10 hours of necessary sleep at night. But when I am up and feeling OK - or even feeling a bit bad but not totally crashed - I have trouble relaxing and taking time out to do nothing. In fact, I think I feel even more pressure than normal, healthy people to be productive because my productive time is so limited. So, this chapter - and especially this passage - are lessons I can still learn from. I definitely want to read The Importance of Living by Lin Yutang.

From the chapter on Stuart Little by E.B. White, on the lesson of Searching, the last part of the last passage, on lessons learned from Stuart:
"...But more than anything: Try to be as cheerful and optimistic as you can be in the face of whatever comes next."
          - Books for Living by Will Schwalbe, about Stuart Little by E.B. White

Schwalbe points out that in this classic children's book, Stuart is faced with one challenge after another, but he perseveres with a bright optimism, always cheerful and polite and kind. I like to think that I have faced my illness in the same way (once I got past the despair and depression of those early years). The basis for my emotional well-being while living with chronic illness is acceptance of my life as it is and never-ending optimism about the future and what new research may bring us. Who knows? Maybe I learned this from reading Stuart Little when I was a kid!

From the chapter on What I Talk About When I Talk About Running by Haruki Murakami, on the lesson of Napping:
"Dr. Campbell [an oncologist] realized that even though he had cared for many hundreds of people who were dying, his thoughts about the end of life might be misguided: "A continuously intense life can be exhausting. Keith [a patient] had no bucket list of activities to complete before he died. He longed for a minute that didn't matter: perhaps for time to take a nap or watch something silly on television without feeling guilt or regret. He needed relief from the feeling that he was wasting precious time, not the added pressure of life's greatest to-do list. I now realize that humans require down time. Quiet time is necessary to process all that happens to us on a daily basis - let alone over the course of a life." "
          - Books for Living by Will Schwalbe

Of course, napping and resting are necessities for us, but the lesson still holds true: it's not only OK to slow down and do nothing, it is necessary and rewarding. This fits together well with the first quote I posted, above, about Slowing Down. It's again a lesson that I need to learn from because I often resent having to interrupt my day to nap, and the better I feel, the more I revert to that "continuously intense life," with the result that I feel overwhelmed and pressured (and later, exhausted). Instead, I need to embrace my down time and my daily nap and recognize that they are valuable to me as a person and not just necessary for my sick body.

From the chapter on Giovanni's Room by James Baldwin, on the lesson of Connecting:
"Shortly after reading Giovanni's Room, I would come across a quote from Baldwin:

You think your pain and your heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, or who had ever been alive."
          - Books for Living by Will Schwalbe

I think we can all relate to this. At the beginning of my illness, my pain and heartbreak isolated me, but then I began reading books written by others with ME/CFS, and I felt connected. I sobbed while I read my first memoir by someone else living with this illness because he was describing MY life. Until then, I thought I was alone; I didn't think anyone on earth could possibly understand what I was going through.  Later, reading blogs and "meeting" others with ME/CFS online provided that same sense of connection. In this way, books can not only entertain us but connect us to others in a way that is, sometimes, life-changing and life-saving.

I know this is a long post...but it could have been much longer! I included here only a few of the dozens of inspirational quotes that I tagged in my copy of Books for Living, and I highly recommend the book. The short, individual chapters, each covering a different book and lesson, make it easier for those with cognitive dysfunction to read because you can manage it in small bits at a time. Or you might try it on audio if you struggle with reading.

How about you: what lessons have YOU learned from books?

    

Tuesday, May 16, 2017

TV Tuesday: Coming Up in Summer 2017

(NOTE: you can link to my past reviews of all of these shows at the links provided below).

It's that time of year again - that between-seasons time on TV. Most of our favorite spring shows have wrapped up for the season (or will soon): The Americans, Blindspot, The Catch, Quantico, and Colony. I have also recently finished up several of the shows I watch on my own during lunchtime: American Crime, No Tomorrow, and Chewing Gum.

My husband and I are filling our evenings catching up on our favorite streaming shows: Bosch, Catastrophe, and Lilyhammer. And I suspect we will be watching a lot of movies through the rest of May!

But what's up next?

Here's a sneak peek at some of our summertime favorites, with the dates they come back, plus some new shows we want to check out...and a couple of sad cancellations!

We might as well get the bad news out of the way: 

NBC has cancelled Aquarius, the crime show about Charles Manson in 1969, starring David Duchovny as an LA detective. It won't be returning for season 3. If you missed this show, you can watch season 1 for free on Netflix or catch both seasons on Amazon Prime for $1.99 an episode or $21.99 a season. It was excellent. You can see my review here.

It looks like BrainDead won't be coming back, either, but it's one season last summer was original and hilarious and very much worth checking out. It's free on Amazon Prime (at the link), and you can read my review here.

I enjoyed Feed the Beast last summer, but AMC cancelled this drama starring David Schwimmer after just one season.

And Fox seems to be still on the fence about Wayward Pines, a show that my husband, son, and I all enjoy. No word yet on whether there will be a season 3.


Here's what we are looking forward to and when the new seasons premier:

June - The Last Ship, season 4 - I couldn't find a specific date, but this excellent post-apocalyptic action drama is supposed to return in June.

June 4 - The Next Food Network Star - my guilty pleasure when I get an hour to myself at lunchtime!

June 4 - Fear the Walking Dead - I'm not so much into zombies, but my husband & son will be tuning in again.

June 5 - Stitchers, season 3 - my husband and I enjoy this unique blend of crime show and sci fi

June 9 - Dark Matter, season 3 - another sci fi show we enjoy

June 9 - Orange is the New Black, season 5 - We can't wait!! My husband and I LOVE this amazing prison drama that is one of the highest-quality TV shows ever. Season 4 ended with a giant cliff-hanger, so we are on pins and needles waiting to see what happens next. The best news? Netflix has renewed the show for a total of 7 seasons!

June 10 - Orphan Black, season 5 - BEST. SHOW. EVER. Seriously, this show is amazing in every way - my husband, son, and I love it. If you haven't seen it yet, you are missing out! Check out my review at the link and catch up (details at the end of my review on where to find it). This will be the final season.

June 28 - Younger, season 3 - one of those shows I like to watch by myself (in my male-centric home!) when I get some time alone. It just gets better & better.

A couple of notes:

Two past summer shows have moved to fall 2017 premier dates for their new seasons: Mr. Robot (10/1/17) and Stranger Things (10/31/17 - perfect) - can't wait!

New shows we want to check out in summer 2017:

 The Mist is based on a Stephen King short story and will air on Spike starting June 26. The trailer (below) looks like it might be a bit violent for me, but I am willing to give it a try. It reminds me a bit of Under the Dome, another TV show based on a Stephen King novel, and it looks like something my husband will definitely like.



Gypsy is starting on June 30 on Netflix. It's a thriller series about a psychologist who gets too close to her patients - looks and sounds very creepy!




Salvation begins on CBS on July 10. It's a sci fi thriller about an asteroid on a collision course with Earth in six months. Looks like a good one!



The Sinner will premier on USA Network on August 2. It's based on a best-selling thriller novel about a young mother who commits horrific acts of violence and has no idea why, starring Jessica Biel. Another one that looks violent but also compelling.



Whew, that's quite a line-up for summer!

What new or returning shows are you looking forward to this summer?

And please let me know if you have any recommendations for shows we can stream (on either Netflix or Amazon Prime) during May, while we wait for all these great shows to start!

Monday, May 15, 2017

Movie Monday: Arrival

Every once in a while, a book or movie just so blows me away that I am tempted to write a one-sentence review: "You must read this book/see this movie!" That's the case with Arrival, a movie my husband and I watched Saturday night and that I have wanted to see ever since its release to theaters last November. It more than lived up to my high expectations.

Arrival focuses on a linguist named Louise Banks, played wonderfully by Amy Adams, who lives by herself and teaches at a university. As the movie opens, we see her at home and at school, with a voice-over addressed to her daughter about beginnings and endings while we see images of her with her daughter, from her birth to her premature death from an incurable disease as a young woman. On this day, though, Louise doesn't even get to begin her class on languages because a worldwide crisis has occurred that has the attention not only of her students but of everyone else on the globe. Twelve identical-looking alien ships have arrived on Earth in various, wide-ranging locations. They are just hanging there, in mid-air just above the Earth's surface, with the whole world wondering what they want and why they are here.

Colonel Weber, played by Forest Whitaker, comes to Louise's office. He's familiar with her talents in linguistics because she previously worked on a military project with him, helping to translate in a difficult situation. He's come to her now because the U.S. military is looking for a linguistics expert to try to communicate with the aliens and find out what they want from humans. She quickly packs a bag and is raced to the site of the alien ship, in Montana. There, she is joined by Ian Donnelly, played by Jeremy Renner, a theoretical physicist. Each of them is given a team of specialists to guide, and the pair are quickly taken to the alien ship to "meet" their visitors up close.

I won't give away any more because this movie is filled with fascinating, breath-taking twists and turns. Suffice it to say that, as you might expect, the aliens have an entirely different way of communicating than humans do, and learning to converse with them is a serious challenge. Adams, Renner, and Whitaker are all excellent in this film, and it is filled with suspense, as the scientists race against time.

As a science fiction movie, Arrival is wonderful, with truly creative and unique aliens and alien technology and language. But that is only the tip of the iceberg. This is mainly a movie about humans and about communication. As Louise and Ian struggle to communicate with the aliens, all kinds of miscommunications occur between the humans located around the globe, all working on the same project. In addition, Arrival delves deep into issues of memory, time, and what it means to be human. Toward the end, you encounter some truly mind-bending surprises that are wonderfully thought-provoking - something I always enjoy in a movie.

I absolutely loved this unique and thoughtful movie that is also suspenseful, and my husband did, too. I was disappointed that our DVD didn't contain any extras because I wasn't ready to leave this world, but I later read that you should patiently wait after the end of the movie because there is a "making of" documentary that rolls after the credits. I wish I'd known that before! I could watch the whole movie over again today.

You must see this movie!

Arrival is now out on DVD (we rented from Redbox) and is available from Amazon to rent for just $3.99 (or you can purchase the DVD).



    

Sunday, May 14, 2017

NOW Is the Time...To Order Probiotics!

My stock of probiotics for the summer
This week, box after box arrived at our house loaded with dozens of boxes and bottles of various probiotics. So, what's the deal? Is the apocalypse coming soon? I sometimes think that after watching the morning news, but no, that's not why I bought so much probiotic all at once. It's because summer is coming! Every year at this time, I stock up on all of our probiotics and buy enough to last us until mid-September.

The reason is that those little probiotic capsules contain live cultures; the tiny bacteria inside need to be kept alive in order for them to remain effective (probiotics are the "good bacteria" that live naturally within your gastrointestinal tract). The bacteria will die under high heat, so it is best to store them below 70 degrees F (and absolutely below 80 degrees). In fact, most strains of probiotic are quite fragile and must be stored carefully. Even properly stored, probiotics will gradually lose their effectiveness the longer you keep them. So, my summertime strategy might not be ideal - buying so much at once and storing it - but I think it's better than having probiotics delivered when the temperature is in the 90's (probably higher in warehouses and trucks), and I have no control over shipping conditions. After what I have read today while preparing this post, I will be keeping my stock in our extra fridge downstairs for the summer, rather than storing them at room temperature like I usually do.

Locally bought & kept in fridge
An alternative approach, which I also use, is to buy your probiotics locally, somewhere where they are kept refrigerated. We buy one of our brands of probiotics this way, at our local natural foods store, and I keep it in the fridge at home, as shown here. They tend to be more expensive in our local store than online, but the store sometimes has sales.

So, why should you take probiotics in the first place? They are really essential for anyone with ME/CFS or any kind of immune disorder. First, they help to support the immune system. Did you know that 80% of your immune system resides within your gastrointestinal tract? So, with the immune dysfunction at the heart of ME/CFS, all of us should take some good quality probiotics, with a variety of strains in them. Another factor that makes probiotics even more important is that many of us - including my son and I - have developed yeast overgrowth, either due to the immune dysfunction or to over-use of antibiotics or both. Taking high-dose, high-quality probiotics is a key part of treating yeast overgrowth (which needs to be treated because it can make you feel awful). And finally, anytime you (or anyone else) take antibiotics, you should double up your daily probiotic dose. Those antbiotics will kill off all of the bacteria in your system, including the good ones in your gut, so they need to be replenished.

One final note: if you are diary intolerant (as are 30% of ME/CFS patients), then be sure you are buying probiotics that are not dairy-based. It should say right on the label. As for yogurt, it does contain some active cultures and can be a good source of probiotics for those who can eat dairy; however, it's hard to tell how much probiotic you're getting, some studies show that the probiotics don't all survive (they get gobbled up by other bacteria in the yogurt), and be aware that most yogurts contains loads of sugar, so stick to plain types.

So, come up with your own summer strategy for probiotics. Will you order now and store them in the fridge (or anywhere cool, dark, and dry) this summer? Or buy locally where they are kept refrigerated? Maybe order some now and then buy locally refrigerated types toward mid-summer? However you decide to proceed, make sure that the probiotics you do buy are stored properly and kept away from heat, light, and humidity. Otherwise, all that money is wasted...and more importantly, you won't be getting any benefit from them.

For more information, this article is very informative and includes references at the bottom to scientific studies for further reading. Note that the article is on a probiotic brand's website, so the last two paragraphs include a sales pitch, but the rest of the article is purely informative (also note that our dietician told me that this type of SBO - soil-based organism probiotics - are not a good choice for us, but it might be different for you).

The links below show the probiotics that we take now or have taken in the past. Our dietician helped us come up with this multi-strain approach. The Saccharomyces boulardii is a strain that is specific to yeast, which is why we take so much of it. The Renew Life Ultimate Flora (also available through Amazon, as shown below) is the one that we buy locally, in our health food store; it contains 50 billion units. Xymogen products, like the ProBiomax DF 30, can be purchased directly through Xymogen. Also note that Culturelle is a common probiotic, found in any drugstore or grocery store; however, we buy the Health & Wellness type, which has 15 billion units in each capsule (their other, more common type is labeled Digestive Health and has only 10 billion units) - the Amazon link below is an excellent price on this type of Culturelle - well below what you will find in local stores.

I'm interested to hear what your probiotic strategies are, especially in the upcoming hot months, and which brands you have found to be most effective?


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.

                   

Friday, May 12, 2017

2017 ME./CFS International Awareness Day

Today is International ME/CFS Awareness Day...and we can use all the awareness we can get!



There are lots of easy ways for you to help spread the word. Refer to my advocacy post from last week for a whole bunch of ideas and links for Awareness Day activities. And it's even more important that we spread the word to our elected officials, so this post includes a link to a quick & easy form for sending a message to your Congressional representatives - there is a Congressional briefing on ME/CFS next week, so that action is urgent.

And I use this day to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May 12th is the exception each year. Here is what I posted on my Facebook wall last May 12 for my friends and family:

"Today is International ME/CFS Awareness Day. Most of you know that Jamie and I both have ME/CFS, but you may not know what that means, especially since the U.S. name, Chronic Fatigue Syndrome, is very misleading. ME/CFS is actually a serious & debilitating immune disorder that has dramatically changed our lives the past 14 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives..but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need to get a LOT of extra sleep, I can't get through the day without a nap after lunch, almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. We have found some treatments that each help a little, but nothing helps a lot. We each take 60-70 pills a day, at 6 different times of day. And even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks at a time. A simple infection like bronchitis can knock us out for months. But, we are the lucky ones. Many people with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - even understand what ME/CFS is, so this Awareness Day is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or Lyme which Jamie also has & has similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far!"


Feel free to copy that, edit it to fit your own situation, and share it with your own friends and family.



This year, there is a new option to share: a wonderful project started by a good friend of mine. She asked a bunch of ME/CFS patients to each create a number square that shows how many years they have been sick. You can see the final graphic above and share it from this Facebook group - it is quite powerful, and I shared the picture with my friends and family on Facebook this morning.


You can also edit your profile pics on social media with either a blue ribbon or a #millionsmissing filter. I changed my Facebook profile to this one this morning, with an explanation of the things I am missing due to ME/CFS (including backpacking!). Here's one option, and another on Twibbon.

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on CFS
  4. Our public testimony on pediatric CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
  • You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
  • You can even earn money for CFS research when you use a search engine:
Happy Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

Wednesday, May 10, 2017

URGENT: Link to Send a Quick Message to Congress About ME/CFS


As I mentioned on the blog last week in my advocacy post for ME/CFS Awareness Day, it's very important for us to contact our Congressional representatives: to tell them about ME/CFS and let them know that Awareness Day is this week. And now there's another reason to contact them right away: #MEAction and the Solve ME/CFS Initiative are hosting a Congressional Briefing on ME/CFS next week, on Capitol Hill.

Even better, the two organizations have made it very easy for all of us to tell our Congressional representatives about the briefing and Awareness Day with a fast and easy form to fill in.

I did it myself this morning, and it took less than 10 minutes to send a detailed note about ME/CFS to all 3 of my Congressional reps (Delaware is a very small state!).

So, do it right now - hop over to this link and fill in your contact information, click Show Me My Officials and your reps will show up across the bottom of the page, add in a few lines about your own personal experience in the space provided (I wrote about myself, my two sons, and the 35 families in the local support group I started), and click the Send button. That's all there is to it.

I was feeling bad that I can't manage to go to DC next week to join a friend for in-person Congressional meetings and the briefing, but at least I was able to tell my representatives my story.

Join in - it only takes a few minutes! Imagine the impact when all these Senators and Representatives are inundated with messages from constituents telling them how ME/CFS affects their lives. In this age of shrinking budgets and huge cuts proposed to the NIH, it's more important than ever for our voices to be heard!

Tuesday, May 09, 2017

TV Tuesday: No Tomorrow

I was recently searching Netflix for something new to watch by myself at lunchtime. My time alone is very limited, and I enjoy watching some lighter, fun, girly shows while I eat lunch that the males in my household would never watch! I had finished Good Girls Revolt, This Is Us (sob), and The Girlfriend's Guide to Divorce and was looking for something new along those lines. I came across No Tomorrow, a fun romcom from CW with some surprising moments of depth and warmth.

The premise of No Tomorrow is a little silly, but it grows on you. Evie, played by Tori Anderson, is an adorable and earnest young woman who works in quality control for an Amazon-like online marketplace. Evie has recently broken up with her boyfriend, Timothy, played by Jesse Rath, and is starting to realize that she plays it safe too much and lives a fairly sedate and restricted life. Cue Xavier, played by Joshua Sasse, a bearded, beanie-ed guy who lives for the moment. Evie is immediately attracted to Xavier's exciting, fun-filled approach to life, but there's a downside. Xavier lives like that because he is a scientist who truly believes that the earth will be destroyed in 8 months by an asteroid. So, yeah, just a little quirky.

Evie gets involved with Xavier in spite of his doomsday countdown and agrees to join him in making an ApocaList, a bucket list of all the things they each want to do before they die (which Xavier firmly believes will be in 8 months). As those two begin working down their lists and doing all kinds of fun and crazy stuff, we are also introduced to Evie's quirky co-workers and best friends. Hank, played by Jonathan Langdon, who believes in his own version of doomsday but plans to survive in a bunker, and Kareema, played by Sarayu Blue, a sarcastic, wild woman who sits next to Evie at work. Rounding out the cast is their boss, Deirdre, played by Amy Pietz, an unemotional hard-ass whom Hank is secretly in love with.

It all sounds very silly, and sometimes it is, but the show has an undercurrent of warmth and sincerity. As Evie and Xavier navigate the challenges in their relationship (and the other characters in their own relationships), there are plenty of serious and touching moments, too. It's basically like a typical romcom movie only in a TV show. I am almost through the first season (13 episodes in all) and enjoying it very much. It's just what I was looking for - a fun show with moments of depth that my action-focused husband and sons would not be interested in! I hope it comes back for a second season.

No Tomorrow was originally on CW (the last 5 episodes are available on the CW website) and is available on Netflix or you can watch it on Amazon for $1.99 an episode or $14.99 a season.

What fun, girly shows do you enjoy?


Wednesday, May 03, 2017

Advocacy Efforts for ME/CFS Awareness Week - Join In!


Next week is the annual ME/CFS International Awareness Day on May 12, and an entire week's worth of advocacy efforts are planned - things that you can participate in in-person or from home. With the proposed slashing of the NIH budget here in the U.S., these efforts are even more important than they usually are - if you think patients with ME/CFS have been ignored by NIH in the past, just wait until the overall NIH budget is cut drastically! It is absolutely essential that we make ourselves heard, especially to our elected officials, both locally and nationally.

Here are some general ideas that  anyone anywhere in the world can do for Awareness Day. I usually add a blue ribbon to my social media profile pic during awareness week and post a brief overview of ME/CFS on my Facebook page for my non-ME/CFS friends and family on awareness day (you can see last year's message here). As usual, I will also post here on my blog, too.

Here in the U.S., there are some exciting events going on all over the country, and the most important of these is a lobbying effort to contact our elected officials. Solve ME/CFS Initiative has partnered with #MEAction to coordinate events for awareness week. This page includes all the details you'll need for awareness week, including timing, links to resources, online training sessions, downloadable documents for you to share with elected officials, and much more. Note that this page also includes sections on what you can do from home, online and by phone.

Much of the actions outlined on that page detail a huge lobbying effort nationwide, with patients and their families and friends reaching out to elected officials to explain what ME/CFS is and why funding is so desperately needed. Again, all the materials and training you need are available on that page, so it doesn't matter if you've never done this before - they are making it easy to get involved. You - or family member or friend - can plan to meet with your representatives in Washington, DC, or locally, but it's important to jump in and make plans NOW.

My family - all four of us - did this six years ago - we participated in a Lobby Day in DC, planned to coincide with a CFSAC meeting. My husband, two sons, and I visited two of our Congressional representatives in Washington and told them all about ME/CFS. At the time, both of my sons and I were all sick with ME/CFS, so our story was one that caught their attention. Every story is important, and it is critical to let our voices be heard, especially now. #MEAction also says that if you or your loved ones are unable to participate in lobby day activities yourself, you can donate to help others speak for you. Even if you are only able to donate $5 or even $1, if we all pitch in, we can have an impact!

Remember that if you are unable to travel to Washington, DC, there are still many ways that you can participate. For lobby day, you can:
All of these options are spelled out on the information page.

In addition, next week, you can do many things to help build awareness without leaving your home or even your bed:
  • E-mail, message, or post on Facebook to your friends and family, to inform them of what ME/CFS is, how it has affected you, and how they can help. 
  • Like the ME/CFS Awareness Day Facebook page for more ideas and up-to-date info.
  • Share information about ME/CFS on social media.
  • Join the #MEAction #BelieveME campaign and share your photo.
So, start planning now (if you want to meet with representatives, you really have to get planning immediately) and think about how YOU will help to build awareness next week! Look for more here next week.

What have you done in the past for ME/CFS Awareness Day? What do you plan to do next week? I'd love to hear your ideas!



Tuesday, May 02, 2017

TV Tuesday: Chewing Gum

I first heard of the Netflix show Chewing Gum (originally a British channel 4 show) on one of my favorite podcasts, Pop Culture Happy Hour. The hosts there (who I often agree with) all seemed to like the show, so I decided to give it a try. At first, I thought it was pretty weird, but it has definitely grown on me, and I am hooked now. I sat down at lunchtime today to watch one episode and ended up watching three of them!

Chewing Gum is a quirky British comedy about a young woman who is naive but who craves some sexual experience. Tracey, played by Michaela Coel, has grown up in a small apartment in London in what I gather is the British equivalent of housing projects here in the US. Tracey is in her mid-20's but still lives at home with her mother, Joy (played by Shola Adewusi), and her sister, Cynthia (played by Susan Wokoma), who are both extremely religious. As a result, she has been seriously sheltered and has little life experience. Tracey's best friend, Candice, played by Danielle Walters, is far more worldly, with a serious (and hunky) boyfriend, though she still lives with her Nan in the projects, too.

At the start of season one, Tracey is determined to finally have sex and lose her virginity - she is more than a little obsessed with this mission! Her straight-laced boyfriend, Ronald, though, is just as religious as Tracey's family and seems immune to Tracey's increasingly aggressive advances. You can tell right away that this relationship isn't going to last long, and sure enough, Tracey is soon dating a white boy from the projects named Connor (though she doesn't dare tell her mother that).

This show is loud, colorful, and outrageous...and a whole lot of fun. Did I mention that it's quirky? Michaela Coel is wonderfully exuberant as Tracey (she also writes the show and created it and says it is semi-autobiographical). Tracey is very childlike, dressing in bright primary colors and wearing her hair in two long braids, and innocent, though she desperately wants to be a sophisticated, worldly woman. She is also incredibly endearing and lovable, and I was rooting for her right from the start.

This show is definitely not for everyone. It is quite crude and very open about sex, though Tracey's attempts to have sex are often more silly than sexy. The show is filmed in a unique way, with Tracey often speaking directly to the audience. It's very, very funny, but it also gives an inside view of what it is like to live in a housing project and tackles topics related to race and religion very frankly. Like I said, I am totally hooked now, in season 2, and can't wait to see what happens next.

Chewing Gum was originally broadcast on Channel 4 in the UK and is available now on Netflix.


Thursday, April 27, 2017

Preventing and Treating Allergies

Flowering trees are one of the biggest allergy culprits in the Mid-Atlantic
Here in the Mid-Atlantic region of the U.S., everything seemed to start blooming at the same time this year, creating an allergy season even worse than usual. We were on vacation in Virginia the week that everything blossomed down there and returned home just in time for our own blooming season, so I had two really bad weeks of allergies in a row. My son, here in college, texted me on our vacation to say his allergies were horrible, so bad that his skin itched all over and he occasionally broke out in hives (spring trees are one of his biggest culprits).

Although allergies are a problem for much of the population, they are even more prevalent in those of us with ME/CFS. The particular type of immune dysfunction that characterizes our disease - a Th2 dominance - makes our immune systems over-react to allergens, making us even more prone to allergies or perhaps even developing them for the first time in our lives after getting ME/CFS. For me, sudden-onset allergies were a precursor to ME/CFS, one of many signs that my immune system was going haywire. I never had any kind of allergies until I was 30 years old, and now I struggle with them year-round.

One way this tendency toward allergy shows itself in ME/CFS is our likelihood of developing food intolerances and allergies. My older son and I used to drink LOTS of milk every day and never had a problem, but we both became dairy intolerant after developing ME/CFS. In fact, a recent study showed that 30% of ME/CFS patients are dairy intolerant, so if you have undiagnosed gastro-intestinal problems, definitely try giving up dairy (and remember to check your medications for lactose).

The other primary way this immune dysfunction shows up in allergies is a response to environmental elements. This can be seasonal - as in the case of my son's spring allergies when the trees blossom - or year-round, as are my own allergies to dust mites and molds. Lucky me - I also have occasional allergy flare-ups when things bloom, like I did this spring.

Allergies aren't just a minor annoyance. Even in healthy people, like my younger son, a bad allergy flare-up can make him feel sick and exhausted. And when you add allergies in on top of ME/CFS (or fibromyalgia or Lyme), allergies can be the straw that breaks the camel's back, worsening all of your "normal" symptoms. It's an additional load on our already-overloaded immune systems. So, what can you do about it?

Prevent Allergies By Normalizing the Immune System
This post explains all about the immune dysfunction in ME/CFS, which is at the heart of our disease. Treating immune system dysfunction can therefore get at the root of ME/CFS and help to improve all of its symptoms. My son and I have found this to be very true, and much of our improvement over the past 10 years has been from treatments aimed at normalizing the immune system. One of those treatments is low-dose naltrexone, which helped us in many ways and is aimed at correcting (to some extent) those immune system abnormalities.

The other main treatment we use to normalize our immune systems is inosine, sold as a supplement in the U.S. (and quite cheap). That blog post linked in the previous sentence has all the details of our use of inosine, what it does, and dosing (which is a bit complicated). As I explained in a post last week on Virally-Induced Crashes, inosine has greatly reduced those kinds of crashes for both my son and I. We used to spend most of the winter relapsed from being exposed to one virus or another, and now that is a rare occurrence.

Much to my delight, though, I noticed another benefit of inosine: my allergies got much, much better. I used to have bad allergy flare-ups several times a year, where my eyes would water constantly, making them so sore and inflammed I couldn't wear my contact lenses, plus the typical runny nose and congestion, which for me also leads to sinus headaches. Now, on inosine, these flare-ups are a rare occurrence. When it happened on our vacation this month, I believe it was because I was taking a break from inosine (again dosing is complicated, and you need to take a break every once in a while). Once I got back on inosine after my two-week break, the allergies cleared up quickly. Note to self: don't take my inosine break in the spring!

Treating Allergies
So, taking inosine has greatly reduced my allergies so that I rarely have a bad flare-up now. My younger son does, though (he's the one who's recovered from ME/CFS), and I still have occasional allergy symptoms. When they hit, there are all the usual over-the-counter remedies that you can find at the drugstore.

Your first step should be to take an antihistamine. Allergies are caused by inflammatory compounds called histamines that your immune system reacts to; antihistamines block these compounds. Most of the prescription antihistamines are now available over-the-counter in the drugstore, so you can take your pick. Claritin, Allegra, and Zyrtec are the three most popular ones, listed in order of strength. We have found Zyrtec to be most effective for us. I take it every night since my allergies are year-round, and my son takes it when his allergies flare-up. Note that the white Zyrtec pills (and very often, any pills that are white - read the labels under Inactive Ingredients) use lactose as a filler, so be sure to get the gel-caps if you are dairy intolerant.

Our doctor explained that there are 2 histamine pathways in the body, and most of these antihistamines only block one of those. Good old Benadryl (diphenhydramine HCl) blocks both pathways, which is why it is so effective...but alas, it knocks most of us out. My husband and son use it at night when their allergies get bad. (Note that I am using brand names here, but most of these drugstore products are now available in cheaper generic versions).

And, of course, you can treat allergy symptoms with decongestants, nose sprays, eye drops, and other remedies aimed at easing symptoms. We usually add a steroidal nose spray to our Zyrtec when things get bad - my son has a prescription one, but again, many of the ones that used to require a prescription are now available over-the-counter. Finally, we take Mucinex anytime any of us is congested - for allergies or other reasons. Mucinex thins mucus secretions which helps to prevent them from becoming infected. Back to the immune dysfunction in ME/CFS - since we are extra-prone to getting bacterial infections, like sinus infections and bronchitis, we take extra-strength Mucinex round-the-clock when any congestion is present.

In addition to the usual remedies in the drugstore, our dietician suggested an herbal supplement called Quercetin, which is known to have an anti-inflammatory effect and block histamine release. She was right - I found it to be fairly effective in my arsenal when allergies flare-up. At those times, I take 2 capsules 3 times a day, between meals. The rest of the year, I keep it in the cupboard.

What About Allergy Shots?
A lot of people have asked me whether they should try allergy shots. That's a decision for you and your doctor to make, but it's not a recommended approach for most people with ME/CFS. Vaccines, including allergy shots, are designed to stimulate your immune system. In the case of allergy shots, the strategy is to start with tiny amounts of what you are allergic to and gradually increase until you become less sensitive to it. The problem is that our immune systems are already WAY over-active against allergens, so further stimulating them is not usually a good idea. It is quite likely to result in a crash or relapse after every shot and perhaps even a permanent or long-term worsening of your condition. In fact, I am pretty sure that allergy shots were what triggered my ME/CFS to start or at least were a primary contributor. I got ME/CFS shortly after starting allergy shots, and I believe - in hindsight - that those helped to overload my immune system to the point where it just "broke." So, talk to your doctor (preferably one who understands the immune dysfunction in ME/CFS), but allergy shots are probably not a good idea for most ME/CFS patients.

So, those are our approaches: first, do what you can to normalize your immune system to reduce your allergic response, then treat allergies with over-the-counter and herbal remedies, as needed. As I mentioned above, the inosine has made the biggest difference for me...and I will not make the mistake again of going off it in the middle of the worst of allergy season!

Have you found anything that helps your allergies?


Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you. Note that this is an excellent price on Mucinex at Amazon - I usually get ours at the drugstore but ordered it as soon as I saw how cheap it was here!

                  

Monday, April 24, 2017

Movie Monday: Passengers

There were some really great-sounding movies released this winter that my husband and I just didn't have time to go see in the theater, and now they are all being released on DVD and streaming. Hurray! After a fun dinner out with friends Friday, we stopped at Redbox and capped off our evening watching Passengers, an intriguing sci fi movie that is kind of like Castaway in space.

5000 passengers and several hundred crew are traveling aboard the luxury star ship Avalon, on their way to a distant planet that houses an Earth colony. Both the ship and the colony are owned by the Homestead Corporation, and these lucky passengers will be starting whole new lives once they arrive. The hitch? The trip takes about 120 years to complete, so they are all - passengers and crew - traveling via autopilot in a state of hibernation.

Something on the ship malfunctions, though, in the first few minutes of the movie, and one of the hibernation pods stops working and wakes its sleeping inhabitant, Jim Preston, played by Chris Pratt. Jim soon realizes he is all alone on the giant ship, the only one awake, and that he has awakened 90 years too early - that means that he will die alone on the ship before he even arrives at the new colony. Things go downhill pretty quickly for Jim, with no company except a robot bartender named Arthur, played by Michael Sheen.

Fortunately for Jim, a second passenger wakes up later, and his sanity is saved. Aurora Lane, played by Jennifer Lawrence, is a beautiful writer from New York who wants to write about the journey and the new colony. Like Jim was, she is upset to find out she woke up when she wasn't supposed to, but at least they have each other. Things are looking up for a while until other aspects of the ship begin to malfunction until reaching a suspenseful crisis point.

We both enjoyed this unique movie that takes place entirely on a ship and has just three actors on-screen (often, just one) for most of the film. Although much of the movie is a love story (this is not a spoiler - it's quite evident from the trailer), there is also plenty of action and suspense, first as they each try to figure out how to fix what went wrong and later as more things begin to go wrong and certain crises come up. The set is gorgeous, on this space-age cruise, and Pratt and Lawrence are both excellent in their roles. For that matter, Arthur is quite charming and amusing himself. The "science" is sometimes a bit iffy, as it usually is in movies like this - I couldn't help wondering why scientists hadn't appreciably increased human lifespan now that they knew how to do things like colonize a distant planet and induce hibernation in humans for decades. But, we were both willing to suspend disbelief and go along for the ride. My husband and I both enjoyed the movie, with romance, a sense of humor, and plenty of suspense. It was a fun journey on a Friday evening!

Passengers is currently out on DVD, available at Redbox or wherever you get DVDs. You can also rent it from Amazon, starting at at $4.99, or buy it digitally or on DVD there (links below). It is not currently available on Netflix.



    

Sunday, April 23, 2017

Weekly Inspiration: Challenges Are a Part of Life

I recently finished reading a memoir that I found very powerful and moving: Lab Girl by Hope Jahren (my review at the link - no spoilers). Ostensibly, it's the life story of a female scientist and her work, but Hope also writes in a very open, honest way about some personal challenges she's faced. I don't want to spoil the book for you with too many details, since she doesn't address these issues until later in the memoir, but take my word for it - they are considerable, sometimes horrifying trials that she still struggles with today. The book also talks a lot about her science and the various problems she's overcome to get where she is today: an award-winning scientist who runs a well-respected lab. She is also happily married with a child she loves and a long-time lab partner who is also her best friend.

Here's what Hope says early on in her book:
"I know damn well that if there had been a way to get to success without traveling through disaster someone would have already done it and thus rendered the experiments unnecessary, but there's still no journal where I can tell the story of how my science is done with both the heart and the hands."
          - Hope Jahren, Lab Girl

She is describing the scientific process in her lab (and why she wrote this book), but she is also talking about life in general and how challenges are just a normal part of life. You have to go through the tough stuff to get where you are going.

This passage struck me for several reasons. First, one of the best lessons that life with chronic illness has taught me is that everyone has their challenges. You may not know it when you meet someone - in fact, challenges (like our illness) are very often invisible - but everyone is dealing with their own stuff. It is just a part of life. You can't have the happy times without the struggles.

I was also struck by this concept that to end up where you are today, you must go through the stuff you went through to get there. There's no short-cut. Now, maybe you're not happy with where you are today or you still focus on your old life and where you should have been if illness hadn't interrupted your life. Nevertheless, down the road, there may be some good - even happy - outcomes ahead for you, outcomes you could never have gotten to on your old path.

I certainly still miss the work I used to do, helping companies do what's right for the environment while also improving their bottom line. That was very rewarding work. But living with chronic illness led me to a completely different life, where I am able to help other people in a totally different way. I can now use my own experiences to reach out to those in need, whether through this blog or Facebook groups or locally. It's a very different life than the one I used to live, but it is just as rewarding.

I think these concepts apply personally, too, not just to your work or purpose in life. Perhaps if I'd never have gotten sick, I would never have learned the value of slowing down or finding joy in small things. I might not be as close to my husband or my kids, if we hadn't spent so many years of sick days together. Certainly, I have lots of good, close friends whom I never would have met in my old life.

It's an interesting thing to think about: how all your experiences - good and bad - have made you who you are today. How, without your struggles, you would be a different person.

I'll leave you with one more quote from the book that really struck me. I wish everyone had Hope's experiences and insights on this topic:
"Working in the hospital teaches you that there are only two kinds of people in the world: the sick and the not sick. If you are not sick, shut up and help. Twenty-five years later, I still cannot reject this as an accurate worldview."
           - Hope Jahren, Lab Girl

How have your struggles made you who you are and led to your life today?

P.S. As I explain in my review, this is also a very funny book - highly recommended!

Thursday, April 20, 2017

Treating Virally-Induced Crashes in ME/CFS

"Crash days" on the couch for me this week!
The title of this post is my own term for those ME/CFS crashes that occur from being exposed to a virus. In our experience, these are the worst kind of crashes and often last the longest, usually much worse than crashes from over-exertion.

This happened to me this week. I spent Easter weekend with 12 other family members, staying in one house for 3 days. So, when I woke up Monday morning with a killer sore throat and feeling horrible, I assumed I had done too much over the weekend. However, crashes due to over-exertion are rare for me now and don't last long (these treatments are why), and when my throat still hurt severely Tuesday and then Wednesday, I guessed that I'd probably been exposed to a virus.

Why Do Viruses Cause Crashes?
Briefly, the specific kind of immune dysfunction that research has shown to be characteristic in ME/CFS makes our immune systems under-react to bacteria but over-respond to allergens and viruses. So, we tend to be extra-prone to catching bacterial infections - like bronchitis, strep, and sinus infections - but we rarely catch viruses, like colds or the flu. However, just being exposed to a virus makes our immune systems over-react with typical immune symptoms, like sore throat, flu-like aches, and feeling feverish (as well as exhaustion, of course). All of this is explained in more detail in this post on Immune System Abnormalities in ME/CFS

Often, the resulting crash is much worse than if we had actually caught the virus like a normal, healthy person. In the past, crashing from exposure to a virus could easily last weeks or even months for my son and I and was a huge problem for both of us in the winter especially.

So, what can you do to prevent and treat virally-induced crashes?

Preventing Virally-Induced Crashes
As my son and I have treated our immune dysfunction over the years and worked hard to normalize our immune systems, we have both been delighted to discover that those crashes caused by exposure to viruses have greatly decreased. We used to both spend much of the winter couch-bound due to all the viruses floating around, but now, virally-induced crashes are rare for both of us. That's why I was so surprised this week when it happened to me (but, to be fair, I was surrounded by lots of kids in school and young adults living in dorms this weekend!).

The key to preventing these kinds of virally-induced crashes is to treat the immune dysfunction that is at the heart of ME/CFS. These treatments have the potential to improve ALL ME/CFS symptoms, since immune dysfunction is central to the disease, but we have found one of the biggest benefits to be reducing our bodies' over-reaction to viruses. This blog post, Treating Immune System Dysfunction in ME/CFS, explains how two different treatments have greatly helped my son and I to reduce those virally-induced crashes. Of the two approaches, insoine has probably helped the most in this regard - we both saw a huge decrease in virally-induced crashes and eliminated that winter slump when we started inosine. Bonus: inosine has also greatly helped my allergies, again by helping to normalize my immune response. Here are more details on Treating ME/CFS with Inosine (it is a cheap and readily available supplement).



Treating Virally-Induced Crashes When They Occur
OK, so crashes due to exposure to a virus have become rare for me now (I even caught a cold in January like a normal person!), but they do still occur once in a while, like this week. When that happens, we keep up the immune system treatments, as described above, but add in some extra supplements.



At the first sign of a virus - in my ME/CFS son or I OR in my husband and younger son, who are healthy - we load up on herbal antivirals. My older son and I already take Olive Leaf Extract and Emulsified Oil of Oregano (regular oregano can upset the stomach) daily, alternating them, to help us both with Lyme disease as well as chronic yeast overgrowth and exposure to viruses. Both of those herbals are potent antivirals, antibacterials, and antifungals.

When I have been exposed to a virus and/or have crashed from virus exposure, I usually add in Monolaurin and L-lysine, both potent antivirals, as well as extra Olive Leaf Extract. I generally alternate them - L-lysine on day 1, Monolaurin on day 2, extra Olive Leaf on day 3, etc. Dosing depends partly on the brand you get, but I take up to 6 tablets of L-lysine a day, up to 3 capsules of Monolaurin a day, and up to 6 capsules of Olive Leaf a day - remember that these are just temporary, while I am feeling the effects of exposure to a virus and/or fighting one off.

When I actually caught a cold in January (a rare occurrence!), I added in Zinc lozenges, which studies have shown can reduce the severity and length of a cold. If my son or I have ANY congestion at all, we also take Mucinex, full-strength (1200 mg) every 12 hours - this thins mucus and helps to prevent bacterial infections like bronchitis and sinus infections from developing, which are the real dangers for us.

If you do develop a bacterial infection - chest tightness or cough for bronchitis or severe sinus congestion that lingers for a sinus infection - then you must see a doctor as soon as possible and get on antibiotics. Since our immune dysfunction makes us extra-susceptible to bacterial infections, it's important to treat them immediately before they develop into more serious infections, like pneumonia. Most doctors will look for high fever with any of these infections, but since temperature regulation is also dysfunctional in ME/CFS, you may not have one. My son and I have a "normal" body temperature of about 97.5 F, which is typical for those with ME/CFS, so a temperature of 99 F is actually a fever for us, and a fever above 100 F is rare. Unless we get to see our regular doctor who understands ME/CFS, we have to explain this every single time to whichever doctor is in the rotation that day for sick visits (we also explain the immune dysfunction that makes us more prone to bacterial infections).

So, to spend less time in bed or on the couch and more time living your life, first work on normalizing your immune system by treating immune dysfunction. Then, when you do crash from being exposed to a virus, take extra herbal antivirals to help your body fight it off.

And me? Today is Thursday, and I am definitely doing better than the past three days this week. I am still nowhere near my normal functioning level, but I am using my laptop (reclined in bed), compared to yesterday at this time when I was flat on my back with my eyes closed. Best of all, my sore throat was gone when I woke up this morning, a sure sign in ME/CFS that I am feeling better. I will continue to take the extra antivirals and rest more until I am back to my usual self.

Below are links to the products that we like best for herbal antivirals. Some of these can probably be found in local drugstores or health food stores (though likely more expensive) and some are less common and need to be purchased online. The ADP is an emulsified oil of oregano that our Lyme doctor recommended years ago and we still use. We couldn't take regular oregano capsules, as they upset our stomachs.


Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.