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?