The Challenges of Being a Sick Parent

On April 6, my article was published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent. I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of.

I have written about this topic many times here on my blog - you can click on the "parenting" category at the bottom of this post to read older posts like Who Takes Care of Mom? and Taking Care of Me.

For this article, though, I also turned to some experts - other sick parents. I asked for their input on the biggest challenges of being a parent with a chronic illness and also their tips and incorporated those into the article.

I would love to hear more feedback from other sick parents. Take a look at the article below & let me know in the comments:

What are YOUR biggest challenges as a parent? And what are your tips for coping?

The full article is reprinted here:

The Challenges of Being a Sick Parent

Living with chronic illness is a huge challenge, but when you are a parent, there are additional burdens to bear. Parents are supposed to be the caretakers, always putting their children’s needs first. There is a lot of pressure in today’s world to be an involved parent – to go to every school function and sports game, to volunteer for your child’s organizations, to give amazing birthday parties, and more. Plus, most parents love their children unconditionally and want to give them the best of themselves. So, what happens when mom or dad is the one who needs to be taken care of?

Based on my own experiences and those of other sick parents, being a parent with chronic illness brings many difficult challenges. First and foremost are feelings of inadequacy, self-pity, and – the big one – GUILT. You may feel bad about all the things you can’t do with your kids, the plans you had for being an ideal parent before you got sick, your kids having to take care of you instead of the other way around, and even that your kids don’t know the real you, the person you were before you got sick. These feelings of guilt and inadequacy can eat away at you, adding to the physical pain and discomfort you already feel from your illness and even making you sicker.

From a practical point of view, there are the challenges of how to get everything done – around the house, taking care of the kids, and shuttling them to activities. Many of us still have old expectations from our lives before getting sick, of getting everything done, being a perfect parent, and juggling house, kids, work, and more. Not being able to do it all anymore can make us feel even more guilty and helpless. These kinds of negative feelings – piled onto the pain and exhaustion of your illness – can leave you feeling impatient and angry, perhaps even lashing out at your family, which can lead to even more guilt, in an endless cycle.

So, what can you do to break this cycle and be a better parent while sick? Parents in an online support group helped to come up with these coping tips:

Accept the new you and your life as it is today.

To your kids, you’re just Mom or Dad – they accept you as you are and love you. You need to accept yourself as you are now, too. This is your life for now. It’s not how much you can do that matters; it’s how much you love them.

Spend time together.

Maybe you can no longer take them to a museum or water park. Focus on spending time together in a way that you can manage – enjoying a movie or TV show together, reading a book in bed, playing a quiet game – and treasure your time with them. Show them that you enjoy their company. It’s trite but so very true: their childhoods really do go by in a flash, so cherish each day.

Drop the guilt.

No more guilt or self-pity: you are enough, just the way you are. Instead of wallowing in feeling bad about what you can’t do, focus on your kids. What brings them joy & makes them happy? Instead of guilt when you can’t do something, cultivate a Buddhist principle called mudita, finding joy in the joy of others. Share in your family’s joy even when you can’t participate. Have them send you photos, text them while they are out, and experience their joy vicariously. When your child comes home from an outing all excited, give him or her your full attention and share in their enthusiasm, even if you can’t share in their activities.

Take care of yourself.

As parents, our natural inclination is to sacrifice our needs and put our kids first. But the more exhausted and sick you are, the harder it is to be the kind of parent you want to be. So, take care of yourself– physically & emotionally – so that you can be there for your kids when they need you.

Lower your expectations.

Part of accepting yourself as you are now is dropping those old expectations of the ideal parent. It’s OK to get cupcakes from the store for your child’s birthday, not to volunteer at school, and to let the house get messy. It’s even OK to limit your kids to just one activity at a time, as we did – they may be better for it, with downtime to be creative and relax. Focus on spending your limited time and energy with your kids. For events outside the house, concentrate on those that are most important to your child and plan to rest before and after. Let go of the rest.

Get help.

With your partner, family members, and friends, decide how to maintain the house and yard. Don’t be afraid to ask for help – your loved ones want to help you but probably don’t know what you need. Don’t forget to get the kids involved in helping with the chores! Enlist parents of your kids’ friends to help with carpooling. When an event comes up that you can’t attend, invite grandparents or other family members or family friends. Hire help if you can afford it – consider this no longer a luxury but a necessity in your budget.

Looking back at my sons’ childhoods and the young adults they are today, I can tell you first-hand that there are some silver linings to being a parent with a chronic illness. Your kids will grow up with more empathy and compassion than most and will grow into caring adults. Having to help around the house makes them more responsible and independent. If you previously worked outside the home, you will be present more and have more time with your child than most parents do. This can result in closer relationships than most parents and children have, especially as they grow up. In a slower-paced life, your kids will grow up with a greater sense of peace and the ability to find joy in small moments every day. It’s not easy, but you can be a good parent in spite of your illness. Your children may actually be better for it in the long run.

Movie Monday: Hidden Figures

Yes, I know it is Tuesday...but it FEELS like Monday because of the holiday yesterday. Besides, I have a backlog of movie reviews to write and nothing new to review on TV, and I already wrote a TV Tuesday post on the summer shows I am looking forward to. So, it's Movie Monday, despite what the calendar says!

Last weekend, my husband and I rented Hidden Figures from Redbox, a movie I've been dying to see since it was released in theaters this winter. It was just as good as I'd heard and earned every one of its many awards and nominations.

Hidden Figures is an adaptation of the book of the same name, based on the real-life story of the team of female African-American mathematicians who served a vital role in the space program in its early years, despite rampant discrimination. Never heard of them before? That's the whole point of this wonderful movie!

As the story opens, we see Katherine Johnson, played beautifully by Taraji P. Henson, as a young girl in West Virginia who is a math whiz. Her crazy skills get her a place in a prestigious school, years ahead of her peers and supported by her proud parents. Katherine grows up to work at the new government agency NASA, as a "computer," one of a roomful of black women who toil away in the basement doing the mathematical calculations necessary to support a whole team of engineers trying to conquer the space race. Mary Jackson, played by Janelle Monae, and Dorothy Vaughan, played by Octavia Spencer, also work as computers with Katherine.

Dorothy is the de facto leader of the group, though her superior, the white Mrs. Mitchell, played by Kirsten Dunst, won't recognize her as such, so she doesn't get the title - or the salary - of supervisor. Mary is tapped to assist a group of engineers and yearns to be an engineer herself, but she's not allowed to take the necessary night classes because the local high school where they are held is for whites only. Katherine - still just as brilliant as in her childhood - gets moved up to the main group of scientists and engineers who are working to catch up with the Russians in getting a man into space and back. The supervisor of the group, Al Harrison, played by Kevin Costner, requested the best mathematician available and was surprised to see Katherine, a black woman, show up.

All three women are portrayed in the movie - their personal lives, their careers, and their struggles - but Katherine is at the center of the film. Her calculations of flight trajectories, launch windows, and return paths were critical in getting John Glenn back home safely from the first Mercury mission that put a man into orbit and dozens of other missions during her long career with NASA. Despite Katherine's brilliance, she encountered huge obstacles at work, including horrible discrimination from her white male co-workers, from not being able to drink from their coffee pot to having to walk for miles across campus and back to use the only black women's restroom. Her co-worker, Paul Stafford, played by Jim Parsons, is particularly hesitant to give her credit where due, though her supervisor, Al, eventually sees her talent and supports her.

This is a stunning, horrifying, glorious story of overcoming obstacles and achieving your dreams. All three of the main women (and, I'm sure, the rest of the computers as well) faced significant challenges, not the least of which was being invisible to their white coworkers, but their strength, perseverance, and dignity are inspirational. Though Katherine is at the center of the movie, we also see Mary and Dorothy deal with their own struggles and climb their own mountains.

It's a wonderful movie, all the more powerful because it is true. In 2015, the real Katherine Johnson, at age 97, was presented with the Presidential Medal of Freedom by President Obama. The open discrimination these talented women faced is stunning to see, especially since these events occurred only about 60 years ago. It is uplifting and moving to see each of them break through barriers to achieve her goals. The acting - as you might guess from the all-star cast - is outstanding, and the three lead actresses are especially affecting in their performances. It's an incredible story, ending with a joyful feeling of triumph.

Hidden Figures is currently out on DVD or you can rent it (streaming) on Amazon for $4.99 (link below for both). It is only available on DVD through Netflix, not streaming.



    

New Article at ProHealth: When Your Kids are Chronically Ill

My latest article has been published in ProHealth's Inspiration Corner: When Your Kids Are Chronically Ill. You can read the full text of the article at that link (and I will post the full article here on the blog in a month).

As readers of this blog know, I have plenty of experience in this area, since my own two sons got ME/CFS at ages 10 and 6. They are now 22 and 19, so we've dealt with chronically ill kids for well over a decade. Our youngest is now fully recovered after 10 years with mild ME/CFS that was well-controlled by treating Orthostatic Intolerance. Our older son has had a tougher time, also taking on Lyme disease and two other tick infections (bartonella and babesia) when he was about 12 (though they went undiagnosed for over three years). He is now in college, living mostly on his own. He still struggles with ME/CFS and the three infections, though with treatment he is able to take three classes a semester, work part-time, and enjoy an active social life.

In addition to all that personal experience, I crowd-sourced this article with input from the parents in our Parents of Kids & Teens with ME/CFS and Related Illnesses group on Facebook. The parents there had some wonderful ideas on not only how to support your kids but also on how to take care of yourself, as the role of constant caretaker is a tough one (and many of the parents are sick themselves, like me).

If YOU have children, teens, or young adults who are chronically ill, check out the excellent advice from our group in the article. You are also welcome to join our Facebook group for parents (keeping in mind that is is ONLY for parents or other adult caretakers of sick kids, teens, and young adults). There are parents in the group whose kids have ME/CFS, fibromyalgia, Lyme and other tick infections, EDS, POTS, and other related conditions. Just click the Join button at that link. Then watch your Facebook messages because that's how we confirm membership for the group.

Do you have advice for other parents of sick kids?

TV Tuesday: Occupied

Last week, I wrote on my TV Tuesday post about being in-between TV seasons right now - the spring shows that are just wrapping up and the ones we are waiting to return this summer. We hit that conundrum again this week. Our 22-year old son is home sick from college, and we finished the two shows we've been watching with him - Colony and Travelers (both highly recommended - reviews at the links). So, we searched the streaming services for something new to try that all three of us might like.

We found Occupied, a Norwegian thriller set in the near-future. Climate change is the biggest challenge in this future world. The U.S. has become energy-independent and pretty much stick to themselves. Europe is running out of fossil fuels and starting to panic. In the midst of these challenges, Norway has decided to do something unprecedented. They have developed a way of producing clean energy using Thorium (a real element and a real, though distant, possibility for fuel production). In response, with their giant new Thorium energy plant open, they have decided to halt all production of oil and gas in the Black Sea. The EU and Russia are not too happy about this development because they aren't yet ready to give up fossil fuels. They threaten Norway with sanctions.

In the first episode of Occupied, the Prime Minister of Norway, who is in the Green Party, announces to the world that they have halted oil and gas production. There is swift action from the EU and Russia, and Russian forces quickly enter Norway and take control over the oil rigs out in the Black Sea. Ostensibly, the Norwegian government is still in place, but little by little, it becomes obvious that Russia has more control over their country than first appeared.

Against this backdrop, the show focuses not only on the Prime Minister and his cabinet but also on two families involved. Hans is one of the Prime Minister's guards - a Secret Service-like position. His wife has just been appointed a judge, and they have an adorable little girl. Thomas is a reporter for a small newsmagazine and an old friend of the Prime Minister's, though they now run in very different circles. Thomas is determined to get to the bottom of what is really happening in his country with the Russians. His wife, Bente, runs a failing restaurant that could be saved by new wealthy Russian patrons. They have two children.

We've only watched the first two episodes so far, but we are eager to see more. Much of the dialogue is in Norwegian (and some Russian), with subtitles, though there is some English spoken, too. The plot is intriguing, and there is plenty of suspense in seeing how the situation will escalate. In this early part of the show, the entire country seems precariously balanced between independence and being occupied (you know which way that will go just from the name of the show). The actors are all engaging and interesting. We're all enjoying it so far and can't wait to see what happens next!

Note that we are also enjoying another Norwegian show, Lilyhammer, that is equally good though much lighter, about an American mobster relocated to Norway as part of Witness Protection.



The first season of Occupied is available on Netflix. You can also purchase Occupied on Amazon for $1.99 an episode or $11.99 for the first season.

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?

    

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!

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).



    

NOW Is the Time...To Order Probiotics!

My stock of probiotics for the summer

(Updated 5/22/20)
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? (NOTE: written long before the COVID-19 pandemic) 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 F). 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--buying so much at once and storing it--might not be ideal, but I think it's better than having probiotics delivered when the temperature is in the 90's (probably much 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 used to.

Locally bought and 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, in the fridge 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.

Probiotics We Take Now (or Have Taken)
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 2 capsules twice a day for each of us). The Renew Life Ultimate Flora (also available through Amazon, at the link) is the one that we buy locally, in our health food store; it contains 50 billion units. Xymogen products, like ProBiomax DF 30, can be purchased directly through Xymogen at the Whole Scripts site at the link (you may need a password from your medical professional to log in) or this one from Pure is similar. I often alternate that one with Doctor's Best Probiotic, which contains 20 billion units total of multiple strains. Culturelle is a common probiotic, found in any drugstore or grocery store; however, we buy the Health and Wellness (Pro-Well) 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 is an excellent price on this type of Culturelle, well below what you usually find in local stores.

When my son began seeing a new medical group in 2019, after developing severe GI problems, they noted his yeast overgrowth and switched him from this collection of probiotics to Mega SporeBiotic (1 capsule, twice a day). The specialists explained that this would help him get over the yeast overgrowth, and you have to consider more than just numbers but also the types of strains. I recently switched as well. We both still take saccharomyces boulardii since it is specific to yeast.

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.

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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:
• Solve ME/CFS Initiative
• Open Medicine Institute (click in the upper right corner to donate)
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day!  Help to spread the word!

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

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!

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?

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:

• Meet with your local representatives
• Ask friends or family members to speak for you, either going to DC or meeting with your local reps 
• Participate online
• Make phone calls
• Donate to support awareness and lobby day activities

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!

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.