Weekly Inspiration: You're Right Where You Need To Be

This week's inspiration comes from a wonderful memoir I read in November, Seven: In the Lane of Hope by Michael Marini. Michael happens to be a friend of mine, but I would have enjoyed his

memoir even if I didn't know him - it's a warm, funny, and inspiring story about growing up in a family of 13, and his dad's recovery after a medical problem that almost killed him. You can read my full review of the memoir on my book blog at the link above.

Michael has a great sense of humor that comes out in his book, and there are plenty of laughs in a busy family with 11 kids. But the memoir is also about his dad's recovery, after doctors told the family he was dying. His dad sounds like an amazing character; he has all kinds of sayings that he frequently repeats. He had been a runner and later, a running coach, and each of the kids was on the track and/or cross-country teams in school, so many of his inspiring sayings have their roots in running, but when he was incapacitated and later, recovering, he found that they applied equally well. While reading the memoir, I also found that his sayings often applied to my life with chronic illness.

One of my favorites:

"You're right where you need to be."

He used to say this to encourage his kids while running a race, but later, he reassured himself with this line while in the hospital and recovering. I read this book during my 3-month long crash this fall, when I was feeling horribly discouraged and stuck on the couch. Reading this simple line helped me to relax and recognize that everything else could wait and my "job" right now was to rest and take care of myself. I repeated that line to myself frequently this fall.

Michael also included some great passages about happiness and contentment in the memoir. This one was on a plaque in his mom's kitchen that he'd seen hundreds of times but really struck him one day:

"Allow life's beauty to envelop you. Hold no guilt or worry about what should have been or what might be."

It's again about accepting where you are right now, living in the present, and letting go of past regrets and future concerns. Good advice for us all.

Another thing his dad said, in reference to his time in the hospital:

"Sometimes, it's really hard to slow down and appreciate what you got - even if that's exactly what you need."

This also hit home for me while I was spending my fall on the couch resting. I realized my mind was still in "must be productive and get things done" mode, while I needed quiet recovery time and to live in the present.

Another thing his dad said:

"Live for today, dream for tomorrow, and learn from yesterday."

That seems like excellent advice, whether you are living with chronic illness or not!

Have you read any books lately that inspired you? I'd love to hear about them in the comments below.

You can purchase Seven: In the Lane of Hope on Amazon.

My Progress in 2018 and My Goals for 2019

I wrote about my goal-setting process in an article for ProHealth: Setting Goals When You Are Chronically Ill (you can read the full article at the link). There, I explained that I don't set New Year's Resolutions that are unrealistic or soon forgotten. Instead, I have lifetime goals that rarely change, and then I set more specific objectives and targets for each of those goals at the start of every year and track my progress. It's a process that anyone can use - not to make unachievable resolutions  but to set reasonable step-by-step (baby steps!) targets to help you actually get what you want out of life...even in a life of limits, like ours.



You can also look back at my 2015 progress and 2016 goals (those related to health & wellness anyway) and also my update on 2016 progress and 2017 goals.

Lifetime Goals
I set these overall goals for my life many years ago - and then updated them a few years back to better reflect my "new normal" with chronic illness. It's funny how I never even mentioned my health in my original goals - we really do take our health for granted until it fails us!


My Lifetime Goals:

1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
6. To give back, help other people, and be part of a community.

SO THAT, I feel happy and content and can spend my time doing things I love.

2018 Progress
I'm a very data-driven person, so I won't bore you with the details of my progress in 2018, but here is a brief summary of my successes and areas that need further improvement. I'll mainly focus on the things that most of you can relate to, like relationships and health.

How I felt overall remained about the same as 2017 for the first three-quarters of 2018, and my level of exertion was about the same, too - so far, so good. Then, in October, I went into a severe crash that left me mostly couchbound for 3 months, due to a flare-up of my Lyme disease. So, if I include those last 3 months, this year was clearly much worse, but that crash was temporary, and I am now back to my normal baseline. 2016 and 2017 were my best years ever, so I hope to get back to that!

In 2017, I was crashed just 3% of the time (11 days all year!). In 2018, I was doing great up until October and was crashed just 2% of the days! Then, of course, the bottom fell out, so I ended the year with 12% crash days.

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. My annual average for 2016 and 2017 was 2.2, a huge improvement over my early years of illness. In 2018, I was at about 2.3 up until that big crash at the end of the year, so I ended 2018 with an average of 2.5. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.

2018 Successes:
These are the objectives where I came close to or exceeded my targets for this year.

My relationship with my husband & sons (note: our sons are grown and mostly out of the house now):

• Had date nights 2-3 times a month
• Took walks or other time spent outdoors with my husband 2-3 times a month
• 6 overnight trips together
• Spent time each week with our sons
• 2 "trips" with our sons (our vacations didn't work out but we did have "staycations" and visit family together

My health:

• Tried 5 new treatments for my son and I (related to MCAS and Lyme & other tick infections)
• Walked 4 times a week about 80% of the time *
• My longest walk was 1 hour and 50 min! *
• 10-15 minutes of gentle yoga stretches on the floor every morning
• Meditate 10 min every day
• Muscle building 4 times a week about 80% of the time, with substantial increases in weights and reps *

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again.

Areas That Need Improvement:



Other relationships:

• I only got together with friends (my goal is once a week) about 80% of the time in 2018, way down from 2017.
• I didn't stay in touch with my mom, my stepmom, and my father-in-law as much as I'd like to.
• I didn't stay in touch with distant friends much in 2018 (other than Facebook - thank goodness for that!)

Health:

• I had a target of doing a longer yoga session (I have a 30-min tape that works for me) once per month - I didn't do that even once all year! 
• I need to do better about putting away my laptop by 7pm because I know it wears me out in the evening (I'm doing OK with that but there's room for improvement).
• I still need a LOT of improvement on putting away my work and resting when I crash - I only listened to my body about two-thirds of the time.
• I need more fun! I get caught up in writing, helping in support groups, my blogs, and other work and have trouble just relaxing.

2019 Objectives and Targets
I won't bore you with all my detailed targets for writing, family, home & finances, etc., but here are my health-related Objectives and Targets for 2019. Note that many of my targets from 2018 are just carried over to 2019. In many cases, I am making progress but need to keep working at it - remember, baby steps! I did change a few significant things in my Writing targets for 2019, related to my blogs, my freelance work, and the ME/CFS Effective Treatments book I am working on, to try to ease some of that pressure I feel. My biggest problem is trying to do everything at once!




Health-related objectives & targets: 

1. Try New Treatments (this is an objective every year - I never stop searching for things that will help my son and I to improve our health & our ability to function). We'll continue to work on tick infections in 2019, though our new protocol is working well so far, and I'd like to talk to my doctor about mestinon.

2. Take Care of Myself:

• Rest when symptoms flare (3 or higher on my scale)
• Do 2 quiet things just for myself each week (no multi-tasking!)
• No computer after 7 pm
• Do 2 fun things each week that are not TV
• Take one "day off" each month

3. Improve Stamina (again, only possible because I first treated exercise intolerance)

• I am continuing my goals of 10 min of yoga each morning, walk 4 times a week, and do some muscle work (usually lying on the ground to keep my HR down) 4 times a week - I lost some ground this fall, so I am working my way back to where I was.
• And yes, I am going to try again at doing a longer yoga session (30 min) once a month.
• Walk a 5k - yes, really! A friend with ME/CFS inspired me, and I was ready by October - and then that bad crash hit. So, I am going to try again this year.

The targets under Take Care of Myself may seem pretty basic, but I still struggle with taking care of myself, taking time out for fun, resting when I should, and relaxing. In fact, as I've improved, I've naturally wanted to do even more, so these kinds of simple self-care actions are even tougher now. My time and energy are still so limited that I want to be as productive as I can when I am up and feeling OK...so I need these reminders to take some time out for myself.

We are each at a very different place in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. This helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!)

Have you set any goals or objectives for yourself for 2019? How was 2018 for you? Please share in the comments below!

Weekly Inspiration: Forge Meaning and Build Identity

I was looking for an inspiring TED Talk today and came across an old favorite of mine, How the Worst Moments in Our Lives Make Us Who We Are by Andrew Solomon. He is an amazing speaker, and every time I hear him, in a TED Talk or on a podcast, I am moved and find myself trying to write down some of the bits of truth he says. In fact, I think I posted this same TED Talk on the blog before, but it was five years ago, and the link no longer works, so I thought it was worth revisiting.

In this moving, funny, inspirational talk, Solomon explains how we can find meaning in our lives through adversity. In the second half, he talks mainly about his own struggles as a gay man (and earlier, as a bullied child), but he also talks about people who've been imprisoned, parents with disabled children, and other types of adversity as well. His main message, which certainly applies to life with chronic illness, is that through the worst things we endure in life, we can forge meaning and build identity. I love that phrase and end up jotting it down every time I hear him speak! He also says, "You can forge meaning and build identity and still be mad as hell," and talks about how oppression builds the power to oppose it.

Listen for yourself - even though I have heard this exact talk at least twice before, the ending still brings (happy) tears to my eyes:

I hope you find Solomon as inspiring as I always do.

He has also written several books (which I want to read!), including The Noonday Demon, on depression (which won the National Book Award); Far From the Tree, on parenting; and Far and Away, about how travel can change the world.

Have a wonderful week!

        

Weekly Inspiration: Plan for a Wonderful New Year!

Happy New Year!! I had good intentions of posting more often this week (and intend to get back to a regular routine in January), but one of my sons was very, very sick and at home with a high fever and terrible sore throat - turned out to be strep throat that wasn't responding well to antibiotics, tonsillitis, an abscess on one tonsil, and maybe mono (though we're not sure of that last one). So, I spent much of my week making him soothing foods that he could swallow (lots of soups, smoothies, and shakes!) and taking care of him. He is now on antibiotic #3 and a short burst of steroids for the tonsils and feeling much, much better - now I'm having trouble keeping him home! lol This coming week, we'll have both sons home part-time plus a birthday plus two family members heading off on trips...so I will probably (realistically) be posting more starting next week!

When I did have time to work this week, I was immersed in my annual process of reviewing the past year and setting goals for the new year. I'm not quite finished reviewing 2018 - the last part left is illness-related - so I will share that with you when I finish and have a chance to set goals for the new year.

You may be thinking that it's impossible for someone with ME/CFS to set goals (or resolutions, though I prefer goals), especially when this past week, all we've heard online and in the media has been about exercising more and resolving to get fit in 2019! But, we can set our own goals, based on our own limitations. For instance, one of my on-going targets is to rest when I don't feel well - listening to my body has always been a challenge for me! Another target I set every year is to try new treatments. Even though my son and I function well most of the time and are in much better shape than we were 5 years ago, these illnesses still rule our lives, so I am always on the lookout for new treatment approaches that might bring another small step of improvement. For some ideas of treatments that you can try, check out my page on Effective Treatments for ME/CFS.

Maybe you want to improve your diet or learn to knit or draw more or try audio books. Your goals will be based on what's important to you and what you want to accomplish.

But how do you actually set and meet your goals? I created my own system that includes measurable targets years ago before I got sick and adjusted that process for my life with chronic illness. This article I wrote for ProHealth, Setting Goals When You Are Chronically Ill, explains all the details with examples to get you started. This is something that anyone can do. You can also look at my post from 2017, My Progress in 2016 and Goals for 2017. I hope to post this year's goals in the next week or so.

Oh, and I forgot to share some VERY good news. My severe crash of the past three months is finally over! Christmas Day was the first day I truly felt good, with no aches or other crash symptoms, and that has continued. It was a matter of treating my Lyme recurrence (details here) and finding the right balance with a new Lyme treatment protocol, plus getting my immune system to settle down. So, I am starting the new year off right, back to my "normal" baseline and able to be a bit active again.

Have you set any goals for the new year? What would you like to accomplish in your own life?

Movie Monday: Bohemian Rhapsody

I was finally feeling well enough to go out in the evening this weekend, and we enjoyed a nice dinner with friends Friday. I was lamenting that we missed seeing Bohemian Rhapsody on the big screen (because I was badly crashed all fall) when they told me that it was still playing for two more nights in a small theater that usually only shows independent films. I was so excited! So, the next night, my husband and I went out (second night in a row!), grabbed some dinner, and finally got to see this movie about the band Queen that I have been dying to see for months. It lived up to all the hype and my very high expectations - a moving, powerful, joyful (and sometimes sad) story of the band, its unique songs, and its one-of-a-kind lead singer, Freddie Mercury.

Rami Malek (of Mr. Robot fame) takes on the role of flamboyant and larger-than-life Freddie, beginning with his humble beginnings, living with his parents who were Persian and had migrated from India to Zanzibar, where Freddie was born. Brought up in a very traditional household, Freddie - whose real name was Farrokh - wanted to be a musician, though his father wanted him to take a more traditional job, and his mother wanted him to bring home a "nice girl." Watching a local band perform in a pub one night, Freddie sees Mary (played by Lucy Boynton), who quickly becomes his girlfriend and the love of his life. After the show, he approaches the band members with a song he wrote. They laugh at first, but they've just lost their lead singer, and a short sample of Freddie's amazing singing voice convinces them to bring him in. The band soon reforms as Queen, and Freddie's stage presence, singing, and song-writing genius propel them to bigger and bigger venues and finally, an album. The rest is music history, of course. Meanwhile, in Freddie's private life, he marries Mary, but as most fans already know, he eventually realizes he's gay. They break up, and he begins to explore a very different life, though they remain devoted to each other throughout their lives. Freddie lives a hard partying life, like many a rock star, that eventually implodes. The movie ends with the band doing their part of the Live Aid concert, a stunning performance, especially since Freddie had AIDS by then.

I loved every moment of this movie. For much of it - especially the first half - I sat in the theater with a huge smile on my face, trying hard not to belt out each song and disturb my fellow theater-goers! It is pure, joyful fun watching this team of talented musicians come together and become what they were famous for, as they grow closer and also become a family. Some of my favorite parts were those showing behind-the-scenes how they came up with certain very creative songs, like Bohemian Rhapsody and We Will Rock You. Of course, it wasn't all fun and joy; Freddie went through some rough times, too. During those parts of the movie, I cried - and during some of the good parts, too! Any movie that can make you feel lboth joy and sorrow like that is incredible, in my book. Of course, it helps that I am a huge fan of Queen's music, so I thoroughly enjoyed all the music and concert scenes, too. It was an emotional rollercoaster ride that I never wanted to end.

Although it's the tail-end of its theatrical release, check your local listings to see if you can still catch Bohemian Rhapsody  on the big screen through Fandango:  



           

If you missed it in the theater, never fear! It is coming to both streaming and on DVD in January 2019 and can be pre-ordered now.

Just watching the trailer again sends shivers down my spine - check it out:

Lyme Update & Lyme Book Review

Hi, all! Sorry (again) for not being around much. I had a few good-ish days this weekend but then crashed again Tuesday. This major crash started back in mid-October, and I thought I was coming out of it finally, but you know what the chronic illness rollercoaster is like!

Since I believe a recurrence of my Lyme Disease triggered this particular crash (it was a mystery at first because I almost never crash for any reason anymore!), I have been focused on tick infections and recently read an excellent book on Lyme that I wanted to share with you. And if you think tick infections don't apply to you, then start with this blog post on why everyone with ME/CFS or FM should at least look into tick infections (and why testing is not reliable). First a quick family update.

Lyme Update - Our Story (Briefly)
So, for those of you new to my blog, here's a quick recap. I got ME/CFS almost 17 years ago, on March 2, 2002. Both of my sons also got ME/CFS about two years after that. We began the long process of trying treatments and found some that helped (see my Effective Treatments for ME/CFS post), but then I had sudden-onset knee pain and nausea. Since we live where tick infections are rampant (though that is almost everywhere now), I knew immediately I had Lyme disease. Long story short: I started on a 3+ year marathon of treatment. The immune dysfunction of my ME/CFS made it more difficult to get rid of, but I was finally Lyme symptom-free. A few years later, the knee pain started up again, and I thought I had a new Lyme infection, so treated it again. A few years later, it popped up again, and I finally realized it was never gone, just in remission. It recurred about every 3-4 years, including about mid-October this year, when this severe crash began. It took me a while to realize it was Lyme that triggered the crash because this time, the knee pain didn't start right away, though my right eyelid was twitching - weird, I know, but neurological symptoms are common with Lyme.

My older son's story is far more complex. He became ill with ME/CFS, with symptoms almost identical to my own, in summer 2004. Again, treatments (especially treating OI) were helping him & he was doing well, back to school, back in band, and even playing a little soccer again, when he suddenly got worse. Again, knee pain was a clue, and - luckily for him - he tested positive to Lyme (only about 65% who have it test positive). So, we treated his Lyme, but he never quite returned to that good baseline he'd been at before it. Over the next three years, he got worse and worse until he was almost completely incapacitated. We were chalking it up to "just" ME/CFS. At that point, some unique symptoms finally made us realize he had bartonella, another tick infection, so we took him to our Lyme doctor, who confirmed he had bartonella, Lyme, and babesia (another common infection carried by ticks) - he'd probably had all three infections for 3+ years, but our pediatrician only knew to test for Lyme. To make a very long and complicated story short, that was about 8 years ago, and our son has been undergoing treatment for the 3 tick infections since then, first with antibiotics and other meds (babesia isn't a bacteria) and later with an herbal protocol, as well as treating his ME/CFS. He has made very slow progress but has improved, bit by bit. He just graduated from college this summer!

New Lyme Book
So, fast-forward to this fall. I bought a new book on Lyme Disease, The Lyme Solution: A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme Disease by Darin Ingels, ND, FAAEM, and my long crash gave me plenty of time to read it. You can read my full and detailed review of the book on my book blog. Despite over 10+ years of experience with Lyme, I still learned some new things from this book. Most importantly, the author compares various herbal protocols and says that the one we have used for years is often too potent for many people and has the tendency to cause severe Herx reactions (a characteristic worsening that occurs when you treat tick infections or other underlying infections like viruses). That has been my son's experience exactly! A normal dose of the formula he takes is 30 drops a day. After 4 years on it, he can still only tolerate 1 drop a day. So, I was very interested to read that another protocol tends to be gentler and less likely to cause such a severe response.

As a result, we talked to our Lyme doctor (LLMD) and got the OK to try this other protocol, the Zhang protocol, which is based on Chinese herbs. It's only been 3-4 weeks so far for both of us, and we are still Herxing, so we are taking it much more slowly than the author of the book recommends, but I am hopeful. Our son was kind of "stuck" and seemed to not be improving as much anymore and couldn't seem to increase his tiny dose. As for me, well, my Lyme does go into remission, but then it keeps popping up again to wreak havoc every 3-4 years. So, I am hoping this new protocol will help to get rid of my Lyme and help our son to get to the next level of functioning so that he can manage a job and adult life. I'll let you know how it goes!

Bottom line is that this book, while not perfect, was informative, and I do recommend it for anyone dealing with tick infections (or who even thinks there is a possibility of tick infections - it covers the challenges of getting diagnosed, too).

And if you are thinking that none of this applies to you, then I urge you to at least read my blog post, Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections. We knew all about Lyme disease, yet we still missed 3 tick infections in our son for more than 3 years. Testing is not reliable, and the urgency in at least ruling out tick infections is that they can cause permanent neurological damage when left untreated. This is serious stuff, and the consequences of missing it can be serious and permanent. And, if you, too - like us - are struggling with Herx reactions while treating tick infections or other underlying infections in ME/CFS, then check out my post on Managing Herx Reactions (more of our hard-won experience!).

So, that's us these days - trying something new for tick infections while keeping up all our usual treatments for ME/CFS. I am still nowhere close to my normal baseline for the past few years (which was pretty good!), but I am at least sitting up more now & getting out of the house a bit.

Here's to a healthier 2019 for all of us!

You can purchase The Lyme Solution from Amazon in print, e-book, or audio:

Weekly Inspiration: Living in a World Apart

Just in time for the holiday season, my latest article on the ProHealth website, Living In a World Apart, is all about managing family gatherings (especially with loved ones you rarely see) when you have a chronic illness. You can read the full text of the article at the link.

Although I always try to incorporate my own experiences into the articles I write for ProHealth, this one in particular was deeply personal. In it, I share my own experiences - many of them painful - in gathering together with extended family. My own family tends to handle difficult circumstances like chronic illness with denial and avoidance, and at least one family member (perhaps others) firmly believes that I am either "making it up" or at the very least, exaggerating my illness. Of course, learning and living with this has been extremely painful for me and created rifts in some relationships that can never be healed.

Even without those toxic relationships, attending any kind of gathering can be challenging for those with chronic illness - the noise, the crowd, the exertion of socializing, the stress of trying to stick with a restricted diet. Add to all that the fact that the illness itself, with fatigue, brain fog, and pain, can make you feel as if you are in a separate world, even though you are surrounded by family or friends. It's a surreal feeling and impossible for anyone healthy to fully understand. That's what the title of the article means, and I love the photo the editors chose to accompany it:

BUT, it's the holiday season! There are plenty of family members that love me (even if they don't fully understand my situation), and I love them. I made a choice years ago - after much thought - to maintain relationships with my family because they are important to me (and also, the troublesome family members are inextricably mixed in with the kind and caring ones). In particular, I absolutely love spending time with the younger generation - my niece and nephew and my two cousins (my first cousins though they are close in age to my own sons). They are all delightful and fun (and far more understanding than their elders), and I look forward to the few times each year that I get to see them.

So, this article is all about how to navigate the pain and take care of your own needs at gatherings with family and friends - while actually enjoying the event!

I would love to hear about your experiences and especially, what has worked for you to manage - and enjoy! - these kinds of gatherings because as you'll see in the article, I certainly don't have all the answers and could still use some help!

Enjoy the holidays with friends and family!

1998: the last Christmas with the WHOLE family there! Happy memories.

TV Tuesday: Killing Eve

With all the fall shows on cable going on hiatus after their "mid-season finale" (when did that become a thing?), my husband and I were hunting for something new to watch last week. I told him I'd been hearing rave reviews of Killing Eve, which was just nominated for Golden Globes for Best TV Drama and Best Actress, so we tried the first two episodes...and then ended up quickly binging the rest of the first season!

Sandra Oh (of Grey's Anatomy fame) stars as Eve, an American married to a Brit, living in London, and working for MI5 (the UK's version of the FBI) as an analyst in an office. It's clear from the first episode that Eve is eager to do more and has some amazing instincts, but her job definition is limiting. She is assigned to babysit a woman who witnessed a horrible assassination, but she goes above and beyond the call of duty. By the second episode, she is working for a small, secret sub-organization within MI6 (like the UK version of CIA) that is tasked with finding the mysterious assassin who is leaving dead bodies all over the world. The team knows - thanks to Eve - that this deadly killer is a woman. From the beginning, the audience sees this story play out from both Eve's perspective and that of the female assassin, Villanelle, who soon knows that the team (and specifically, Eve) is tracking her. From then on, it becomes a cat-and-mouse game, with Eve and her team chasing Villanelle around the globe, and the two women becoming more and more obsessed with each other.

This show is so unique and completely compelling! We finished the first season in just a few days and were disappointed to find it was over so soon. Sandra Oh, an acclaimed actress already, is excellent in this role, as Eve is first fixated on finding Villanelle and later, more personally fascinated with her, all while her marriage suffers. Jodie Comer, as her nemesis, Villanelle, is less well-known as an actress but is incredible in this role, playing the strangely appealing cold-hearted killer in a way that is utterly captivating. The rest of the cast is good, too, but these two women take front stage as they become locked in psychological warfare - and something like admiration? - with each other. In addition, the mystery and thriller elements of the show provide plenty of suspense. The short first season was over far too soon, and we can't wait for season 2 (due out in 2019)!

Killing Eve is produced by BBC America, and the first season with 8 episodes aired this spring. You can still find it On Demand through your cable company or on the BBC America website, though only episodes 1 & 2 are free in both places, so you can try it out. Spoiler alert: you will love it and want to watch more! You can purchase episodes on Amazon starting at $1.99 each or $13.99 for the entire season. We thought it was well worth the investment.

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

Movie Monday: Trainwreck

Having been homebound for most of the past two months, thanks to a severe crash, I haven't been able to go out with my friends or even make it to my book group meetings, so last week, my two closest friends brought Girls Night Out to me! They came over with take-out Thai food, and we watched a movie in our family room - complete with recliners for everyone. We were looking for a light, funny movie and ended up watching Trainwreck, which was definitely light and funny, though perhaps a bit raunchy for some tastes!

Amy Schumer stars as Amy, a writer working for a men's fluff magazine called S'nuff in New York City (with hilarious article titles). Besides being focused on her career, Amy was brought up to believe that monogamy is not possible, a view instilled in her by her carousing father, Gordon, played by Colin Quinn, to explain why he and her mother broke up. Now, her father is aging, but Amy has stuck with his dysfunctional life philosophy. As a result, she drinks a lot, smokes some weed, and sleeps with lots of guys. Officially, she has a boyfriend, Steve, a muscle-bound hunk played by John Cena, but Amy still has one-night stands with other guys. Her rule is to never spend the night. Then, her editor assigns Amy to write an article about the "sports doctor to the stars," Dr. Aaron Connors. Amy knows less than nothing about sports, but she wants a promotion, so she spends time with Aaron, interviewing him for the article and getting to know him. She's attracted to him - and vice-versa - but he doesn't fit her usual type. He's intelligent, sweet, and kind. Will Amy be able to break a lifetime of conditioning to commit to one man?

Oddly, I think this is the first time I've actually watched Amy Schumer in a movie, even though I know of her, have heard interviews with her, etc. Directed by Judd Apatow, Trainwreck features his signature fast-paced amusing banter throughout (think Knocked Up, 40-Year Old Virgin, Bridesmaids, etc.) and also that same kind of raunchy, silly humor. I think it might have been a bit too raunchy for my friends (especially the one-night stand montage!), though we all laughed. As for me, I tend to prefer a more clever, dry wit in my comedies than such obvious silliness, but I enjoyed it overall. The cast was good, the banter funny, and like all romcoms, it has a happy ending. The side plots about  Amy's relationship with her sister and how they are adjusting to their father's aging were even tender and moving (and still funny). It's a fun, mindless ride for when you are looking for escape (and aren't easily offended!). Sometimes, that's just what you need.

Trainwreck is available for streaming on Amazon, starting at $2.99, or on DVD.



  

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.

Weekly Inspiration: Happiness Is a Choice

Last month, for Nonfiction November, one of the nonfiction books I listened to on audio was Happiness Is a Choice You Make: Lessons From a Year Among the Oldest Old by John Leland. You can read my full review of the book at the link to my book blog.

I really loved this unique, fascinating, and inspiring book. The author is a journalist who spent a full year interviewing and spending time with six elderly people in New York City (details at my review link), all over age 85. My father-in-law is 93 years old, so this book gave me some insights into his life...but I was surprised to find that many of the lessons from the elderly apply perfectly to a life of chronic illness. They are often living with all kinds of physical ailments, plus just age itself has forced them to slow down, and their lives are often defined now by limits. Sound familiar?

Even though I was listening on audio, I frequently hit pause to rewind and write passages in my Quote Journal. Here are a few of my favorites:

"Here was a lesson in acceptance and adaptation. In a culture that constantly tells us to overcome our limitations, sometimes it is more productive to find ways to live with them."

"Problems were only problems if you thought about them that way. Otherwise, they were life and yours for the living."

"Here was a lesson on the myth of control. If you believed you were in control of your life, steering it in the direction of your choosing, then old age was an affront because it was a destination you didn't choose. But if you think of life instead as an improvisation in response to the stream of events coming at you - that is, a response to the world as it is - then old age is another chapter in a long-running story."

          - from Happiness Is a Choice You Make: Lessons From a Year Among the Oldest Old by John Leland

See what I mean? Each of these applies to my father-in-law's experience but also to mine, just in my 50's, as someone with chronic illness (and really, everyone, whether ill or not, could benefit from giving up trying to control everything!). That last one is especially powerful - just substitute chronic illness for old age.

This book really spoke to me and made me think...but it was also entertaining and enjoyable. By the end of it, I felt as if I had spent time with these six elderly people myself. I definitely recommend it - either in print or on audio.

You can listen to a sample of the audio here.

Hope you are having a good weekend!

Updated Information on Treating Herx Reactions

Hi! Yes, I'm still here and still in the midst of this bad crash. I do think I've made some progress and am improving, but slowly.

Quick recap: I went into a severe crash/relapse about 7 weeks ago. This has become extremely rare for me, to crash for any reason at all and especially this bad. In all of 2017, I was only crashed for 3% of the time (11 days)!! I reduced - almost eliminated - post-exertional crashes by treating my Orthostatic Intolerance (OI) with low-dose beta blockers and did the same for virally-triggered crashes by treating the immune dysfunction at the heart of ME/CFS with a variety of treatments. I've been in pretty good shape the past few years - not cured, by any means (I still need my afternoon nap & have limits), but much better and living a fairly active life.

So, this crash seemed to come out of nowhere, and it took me awhile to figure out what was going on. One weird recurring symptom - a twitching muscle in my eyelid - finally tipped me off that the crash might have been triggered by my Lyme disease recurring (Lyme often causes weird neurological symptoms, and I've had this one before). Sure enough, I started treating Lyme again - after about 4 years in remission - and experienced the tell-tale worsening (Herx reaction) that confirmed my theory, with other typical Lyme symptoms re-emerging, like knee pain. That was abut a month ago, and I am finding that I have to proceed very slowly with the Lyme treatment, as I am Herxing pretty badly this time around. That, along with my son's continued struggles with treating his 3 tick infections, made me read a book on Lyme disease and do some more research into the best ways to treat Herx reactions. It turns out that even after 8 years of dealing with this, we still had more to learn!

Herx reactions (worsening) occur not only when treating tick infections but also when ME/CFS patients treat viruses with antivirals or sometimes even when treating yeast overgrowth with antifungals (and treating mold toxins, too). Learning how to properly manage Herx reactions will not only help you to feel better and function better but will also help you to make more progress in knocking out these underlying infections that are often behind many of our symptoms.

So, my Managing a Herx Reaction post is newly updated, with parts of it completely rewritten. I have added new treatments to the list and included dosage information for all of them. This now accurately compiles all of our hard-earned knowledge in one place...but please let me know if I missed anything that has worked for you!

I feel a little better today, though still achy and with some knee pain and lower energy than normal, so I am hoping that I will continue to improve bit by bit and soon get back to my "normal" baseline.

Support ME/CFS Research on Giving Tuesday!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy - all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - Triple Tuesday 2018 - today is the final day of this generous gift - for every $1 you donate, an anonymous donor is tripling your gift! That means if you give $10, your donation triples to $30! They also have another special matching donation today only through Facebook, where Facebook has pledged to match the first $7 million in donations today ONLY (and they still have a ways to go). It's a great opportunity to make your money go farther!
• Solve ME/CFS Initiative - another chance to TRIPLE your donation! Through November 30, any amount you donate to Solve ME/CFS (starting at just $3) will be tripled through a matching donation from an anonymous donor! (note the triple matching gift isn't mentioned on the donation form itself, but I received an e-mail that explained it). You can read about their latest research breakthroughs here.
• Simmaron Research - donate through their website and you can read all about their research results and programs here.
• #MEAction - this organization is focused on patient advocacy rather than on research, but they are doing some great work! They also have a donor who will match up to $25,000 in donations on their website (and they have separate donation buttons for US and UK) or today only, Facebook is matching donations when you donate there.
• ME Association - A UK-based organization that is focused on patient support and advocacy. Here's more about the organization and what they do - click the donate text to set up a one-time or recurring donation.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. You can donate on their website at the link.

And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. And right now, iGive will donate an extra $3 for every new member that signs up or downloads their iGive button using that link above (sign-up is free and super-quick).

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options).

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Movie Monday: Fantastic Beasts and Where to Find Them

Our older son came home for Thanksgiving break this weekend, and I was still crashed, so my husband, son, and I settled in for a night of pizza and a movie! The pizza was delicious - a rare treat since I am usually dairy- and grain-free - and we decided to watch a movie we've all wanted to see since its release in 2016: Fantastic Beasts and Where to Find Them. Harry Potter aficionados will know the title is a reference to a textbook used at Hogwarts and written by Newt Scamander. This movie takes place in 1920's New York.

As the movie opens, Newt, played by Eddie Redmayne, is arriving on a ship into New York. He's been traveling all over the world doing research for his upcoming textbook on magical beasts, and you can tell from his challenges going through customs that his plain, brown suitcase seems to hold some of his research subject matter. Newt is used to life in England, where magical and non-magical (aka Muggles) people live side by side, but here in the United States, the magical world is kept secret from so-called Non-Mags. As Newt struggles to adjust to this and other cultural differences, several of his magical creatures escape, through a series of amusing events. Along the way, Newt meets a non-mag named Jacob Kowalski, played by Dan Fogler, and a fellow witch named Tina, played by Katherine Waterston, who works for the US version of the Ministry of Magic and tries to turn Newt in for letting his magical creatures escape. Another force at work is an organization hunting witches called the New Salem Philanthropic Society. As Newt's escaped creatures wreak havoc and he tries to collect them all, there is an evil force unleashed upon New York City that threatens them all, witches and non-mags alike.

We all enjoyed this exciting, delightful movie very much. It's fun to see the wizarding world during an entirely different era and new place than the familiar Harry Potter stories but told with the same creative energy and sense of humor. The story itself has plenty of suspense and action but also a sense of wonder, especially where Newt's various creatures are concerned. All of the actors are wonderful in this movie, fully inhabiting their roles and making you believe it is New York in the 1920's (but a New York we have never seen!). It's a complex and intriguing plot that pulls you right in. We all loved spending two hours in this unique, colorful, and compelling world.

Fantastic Beasts and Where to Find Them is currently available for streaming on Amazon, starting at $2.99, or on DVD.

If you've already seen this first movie, its sequel, Fantastic Beasts: The Crimes of Grindewald (a villain introduced in this first movie) is currently in theaters. I am hoping to get feeling better in time to see it on the big screen in a recliner theater! Find times and theaters near you:

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.

Videos to Watch While Crashed

Still couchbound

I am still here, on the couch - 5 weeks and counting now. This past week was even worse (hence the lack of blog posts), but I am a tiny bit better today so far. Feeling cautiously optimistic that maybe the end of this crash is in sight. I'll discuss my theories and treatments in another post.

Just wanted to share one way that I have spent my time while unable to sit up, write, or do much of anything. I've been watching videos from a recent ME/CFS research symposium, something I kept meaning to do but normally never have time for.

If you are also limited in what you can do, here are some videos relevant to ME/CFS to keep you occupied (and maybe teach you something or even help you with treatments!):

• Second Annual ME/CFS Community Symposium, jointly sponsored by Stanford and Open Medicine Foundation earlier this fall - this is what I've been watching. It's a playlist, so you can choose which talks to listen to, and this was the day where top doctors and scientists reported on their research projects to the general public, including patients. If you are in need of some hope, the depth and breadth of research, the enthusiasm of the researchers, and the spirit of cooperation will lift your spirits!
• Bateman Horne Center's series of 6 online classes for ME/CFS patients, covering the diagnosis and management of the primary characteristics of our disease, like sleep dysfunction, orthostatic intolerance, and pain.
• Solve ME/CFS Initiative's Webinars - there are two new webinars coming up in December that you can sign up for, but you can also watch older webinars here, on topics ranging from school accommodations to research updates to treatment strategies from top doctors.

Hope those help to educate you and keep you busy! I've been stuck on the couch, but I've learned a lot this week!

Movie Monday: Ricki and the Flash

I had a brief (very brief) respite in my 5-week long crash on Friday, so I made it to my local library - woohoo! Crazy times. I noticed a few people browsing the DVD section, and I realized we haven't borrowed DVDs from the library in years! Between Netflix and Amazon providing movies without leaving home, and a Redbox a couple of miles away, we'd gotten out of that old habit. So, I grabbed a couple of movies for the weekend. That turned out to be a good idea, since my improvement was short-lived, and I felt awful again by Saturday morning. Needing a pick-me-up, we watched a fun movie with a great soundtrack from a few years ago, Ricki and the Flash.

Meryl Streep stars as Ricki (whose real name is Linda), an aging rock 'n roller who left her young family many years ago to follow her dreams in California. She did put out one album but never really hit the big-time. Now, she and her group, the Flash, are the house band for a small but lively bar in California. Her lead guitarist, Greg, played by Rick Springfield (!), is her partner in music and would like to also be her partner in life, but Ricki keeps him at a distance. When Ricki gets a call from her ex-husband, Pete, played by Kevin Kline, that their daughter, Julie, is in bad shape after her husband left her, Ricki gets on a plane. Julie is played by Mamie Gummer, who is actually Meryl Streep's real-life daughter, so their pairing on screen as mother and daughter certainly feels real. Ricki aka Linda is not exactly welcomed home by either Julie or her two grown sons, but she sticks it out and little by little, begins to repair years of damaged relationships and get to know her daughter again...and maybe even help her.

I really enjoyed this movie! Although it might sound odd at first that Meryl Streep is playing a rocker, she's actually (big surprise) wonderful in the role, completely inhabiting it, as she does all of her roles. Kevin Kline is also great (and funny) as the super straight-laced Pete, and it's easy to see that Mamie Gummer gets her acting chops from her famous mom - she does a wonderful job playing the damaged Julie who slowly comes back to life. Ricki's band plays a mix of 70's rock and newer songs, so it's always fun when they take the stage. There is also plenty of emotional depth here, as the estranged family gets to know their missing mother once again, bit by bit. It's a fun, warm, musical, and funny film that is very entertaining. A perfect cheer-up movie for my sick week.

You can stream Ricki and the Flash on Amazon, starting at $2.99, or buy the DVD (or borrow it from your library!)



    

Weekly Inspiration: The Kindness of Strangers

Blanche DuBois famously said in A Streetcar Named Desire, "I have always relied on the kindness of strangers."

That quote is in my head this morning, as I check social media and see an outpouring of support from other patients that is incredibly heartwarming. I am starting week 5 of a severe crash and had an especially rough time this week, having to cancel a long-planned trip to my mom's and wracked with aches and exhaustion so bad that I couldn't even sit up most days. These kinds of severe weeks- or months-long crashes used to be common in the early days of my illness, especially at this time of year, but they have become extremely rare, thanks to a number of treatments that have helped me. In fact, I was only crashed for a total of 3% of the days (just 11 days) last year! That's made this crash even harder for me to deal with, since I am so out of practice.

I wasn't online much this week, unable to sit up and recognizing that even using my laptop while lying down wears me out and is not truly resting. But a few times each day, I would pull the laptop onto my lap, check my e-mails for anything urgent, and check Twitter, my blogs, and the Facebook page for this blog just for fun. And every single time, I was blown away and cheered up by the support from other patients during this ongoing crash. When you feel so isolated and - let's face it - sorry for yourself, knowing that there are other people out there who not only get it but are rooting for you makes all the difference in the world.

If you haven't yet connected to other patients in this way, I highly recommend it. You can join Twitter or Facebook with a pseudonym just to interact with patients, if you prefer. There are pages on Facebook, like mine, focused solely on living with chronic illness, and there are hundreds of groups where you can interact with others like yourself. I run one for Parents whose kids (including teens, young adults, etc) have ME/CFS and related illnesses. Myalgic Encephalomyelitis Global is a nice general patient group. And you can find over a hundred other groups specific to ME/CFS at #MEAction Network. If you have other conditions, look those up, too - there are groups for everything!

I did manage one quick post earlier this week by compiling together some older blog posts: Surviving a Crash - A Look Back in Time. These helped me and I hope they will help you, too!

That's enough blogging for me today. I just wanted to say THANK YOU to everyone who has reached out to me the past few weeks and let you know that you have made a real difference in my life.

Surviving a Crash - A Look Back in Time

Couch, sweats, blanket, book & herbal tea = REST day!

I am now in my 4th week straight of being badly crashed - something that has become extremely rare for me in recent years, thanks to OI treatments and treating immune system dysfunction to prevent virally-triggered crashes. In fact, I hit an all-time low last year of being crashed and unable to function only 3% of the time all year! That's WAY down from a high of being nonfunctional 25% of the time back in 2007. So, this current, unexplained crash has hit me very hard, and I am out of practice dealing with crashes, so it's also been frustrating!

I don't have the mental energy or physical stamina to actually write an original blog post, so here are a few of my favorites on the subject of crashes from the past - enjoy!

• The Boring Sameness of Crash Days - ugh, I am really feeling this one today! I have a looong list of things that need to get done, and I am unable to do any of them. I have been reading a lot and trying to stay off the laptop (not very successfully, as you can see!), but that boring sameness is starting to get to me.
• Feed a Crash - ha ha This is a classic but still true today! For some reason when I am crashed, I want to EAT. Ironic since I am burning no calories and unable to exercise at all.
• Living the Horizontal Life - describes a situation very much like I found myself in this week where I finally stopped fighting the crash and trying to get stuff done and just gave into it and focused on really resting. Also, a nice reminder in this post not to wallow in self-pity because I still have plenty to be grateful for - even more so now, when crashes like this have become so rare.
• Need a Laugh? - my son always says that laughter is the best medicine! This week I have been getting my laugh on listening to Trevor Noah's memoir, Born a Crime, on audio, which is warm, moving, insightful, and very, very funny about his childhood in South Africa as a mixed race child. This old post features 3 links to hilarious websites that never fail to get me belly laughing - all three are still favorites of mine today!

One other thing that occurred to me reading these old blog posts is that I am SO fortunate to be able to just lie on the couch and rest when I need to now. Back in those days when I wrote most of those posts, one or both of my sons was also crashed or at least battling ME/CFS, so no matter how bad I felt, I still had to take care of them, drive them back and forth to school to catch a class or two, etc. They are in their 20's now (and one is fully recovered), so the mostly empty-nest means I can take care of myself when I need to. Something else to be grateful for!

Weekly Inspiration: New Article on Extrovert/Introvert

So, once again this week, my apologies for still not posting the promised follow-up part 2 to my part 1 post, Challenges in Diagnosing Orthostatic Intolerance, on challenges in treating OI. It's coming, but I have still been badly crashed - about 3 weeks now. This is all very puzzling to me because although weeks-long (or months-long) crashes used to be common for me, especially in fall and winter when infections are all around, triggering my immune system to go even more out of control than usual, with treatments, these kinds of crashes (all kinds, actually) have become quite rare. I really can't remember the last time I was down for this long. I am heading to my mom's this week (fingers crossed that I feel well enough to manage it), so I hope to finally get that part 2 post on OI written after I get back.

I have been trying hard to listen to my body (a challenge because I'm out of practice!) and resting. I spent much of my week horizontal and just couldn't handle complicated writing projects (luckily, I was caught up on my paid freelance work).

So, here is a link to an article I wrote for ProHealth that was recently published: Has Chronic Illness Turned Me Into an Introvert? (read the full article at the link). This one is very relevant to me with the way I've been feeling - I have been needing my quiet alone time even more than usual!

I'd love to hear your experiences. Do you now crave quiet solitude and maybe feel a bit anti-social? Do you feel like chronic illness has changed you in any way?