I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002.Both of my sons also got ME/CFS at ages 6 and 10. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.
My older son was home last night, and we were both pretty worn out, looking for a light, fun escapist movie, so we watched the new Netflix original, Murder Mystery, which fit the bill perfectly.
Jennifer Aniston plays Audrey, a hairdresser who loves to read mystery novels, and Adam Sandler plays her husband, Nick, a NY cop who's failed the detective exam three times. They've been married for 15 years and have never been on a honeymoon, so they take a long-dreamed-of trip to Europe. On the flight over, Nick falls asleep and when Audrey wanders up to first class, she meets Charles Cavendish, a very wealthy man played by Luke Evans. After chatting on the flight, he invites Audrey and Nick to come on his yacht and sail around the Mediterranean. The two New Yorkers are treated to luxury like they've never seen before, with other guests on the yacht including a beautiful movie star and a famous race car driver. It turns out that the purpose of the voyage is the wedding of Charles' elderly uncle to a beautiful young woman. The uncle surprises the small group of family and close friends by announcing that he is writing them all out of his will and instead leaving everything to his fiance. Soon, the uncle is dead. At the next port, Inspector de la Croix (sounding very much like Inspector Clousseau) boards the ship and begins to question its guests. Nick and Audrey find themselves the prime suspects in a murder, and as they race across the region to try to clear their names, the body count continues to grow.
This playful film takes a classic whodunit (and a closed-room mystery, since there was only a small group on the yacht) and turns it into a fast-paced farce. All of the characters are exaggerated stereotypes, in a classic mystery style (some reviewers have said it reminds them of Clue). Audrey's experience reading mystery novels is used in humorous ways, as is Nick's police experience (and lack of detective status). The settings are gorgeous, as are most of the people. As is often the case on TV and movies, it's sometimes hard to imagine how Nick ended up with beautiful and poised Audrey, but hey, we went along for the ride. That's what this movie is - a fast ride through the water and streets of Europe, as Audrey and Nick try to solve the mystery. There are car chases (in amazing cars), gunshots, and other typical mystery tropes, as well as lots of dead bodies to keep the amateur detectives busy. Parts of the movie feel a bit predictable but the mystery itself kept surprising us. It's not a great movie but a fun little romp when you feel like some mindless escape...which was exactly what we needed last night.
Murder Mystery is a Netflix original so is available exclusively on Netflix.
Nothing is more joyful than a great, big, uncontrollable belly laugh, the kind that leaves you breathless. Laughter not only brings joy but also a host of actual physical and emotional health benefits. Laughter:
Reduces levels of stress hormones (something that those with ME/CFS have a lot of trouble with)
Triggers the release of endorphins, which cause a cascade of positive physical effects in the body and brain
Reduces your blood pressure, if it's high
Improves the immune system and boosts T-cells (something we definitely need!)
Improves mood and acts as a natural anti-depressant
Improves cardiac health and works your abs! (now there's a work-out we can do)
In short, laughter not only feels good; it is also good for us.
This laughter-filled TED Talk by Sophie Scott, Why We Laugh, explores the underpinnings of laughter - why we do it, different types of laughs, responses in our brains, and how laughter is contagious:
I think she is right about laughing more and harder when you're with others because some of my biggest and best bouts of laughter come when I am with my family and we are telling a story we've all heard 100 times - we will all get laughing so hard that tears are streaming down our faces!
My son and I have often used "laughter therapy" throughout the long years of our chronic illnesses. When he was younger and home from school for weeks (or months) at a time, we'd watch old TV shows on TV Land. Many of them made us laugh, but our favorite was I Love Lucy - it could get us belly laughing on our worst days! This was one of our all-time favorite scenes, from an episode when Ricky thinks he's losing his hair, so Lucy gives him a series of "treatments":
Lucy gives Ricky hair treatment - YouTube
ha ha ha - gets me every time! Old scenes from the Carol Burnett show - especially those featuring Tim Conway - have the same effect on me. Look up the dentist skit or Carol Burnett Show bloopers, which are mostly the cast members cracking each other up - Sophie Scott is right - laughter is contagious! Oh, never mind - I have to include one more clip:
Best Carol Burnett Show Bloopers - YouTube
For more funny (and more current) TV shows, check out my list of TV Reviews and scroll down to comedies.
With movies, our go-to for our worst days is Planes, Trains and Automobiles, starring John Candy and Steve Martin. We can pretty much quote the entire movie from start to finish but it still keeps us laughing out loud, sometimes so that we can hardly catch our breath! Every scene in this movie makes us laugh, but this one is a favorite:
Going the Wrong Way - Planes, Trains & Automobiles (5/10) Movie CLIP (1987) HD - YouTube
We quote that scene to each other all the time between the four of us! For more funny movies, check out my list of Movie Reviews and scroll down to comedies.
I also love books that make me laugh, even if they are also sad in parts. Some of my favorite laugh-out-loud novels include (reviews - with no spoilers! - at the links):
I've been a bit absent from the blog lately, dealing with some serious crises with our son, who is 24 with ME/CFS, Lyme, bartonella, and babesia. While we are digging into the underlying causes and looking for solutions, we have found a treatment to ease many of his worst symptoms - CBD or cannabidiol, a component of hemp with none of the psychotropic properties of marijuana. I'll share our experiences and what we've learned so far.
He returned home temporarily after living on his own for a while, and we discovered he had some new and devastating symptoms. He's been suffering from anxiety, plus crippling stomach pains (we knew there was nausea and vomiting from a recent switch in Lyme treatment but didn't know about the pain). He's lost 40 POUNDS since January and could barely eat when he got home. We are already waiting for results of a comprehensive 3-day stool test plus a slew of blood tests, so we are still waiting on those to shed some light on cause of the stomach pains. We are suspecting ulcers now, based on his description of the symptoms (burning pain inside his stomach). We got him started with a psychologist recommended by a good friend, and are taking care of him at home and reassuring him that his only responsibility right now is to get well, and, of course, trying to feed him good stuff.
We discovered CBD this weekend, and it is making a HUGE difference for him, so I wanted to share that plus see if others have any more info on brands, types, methods, etc. His anxiety is definitely easing since he came home, but we were away visiting family this weekend, and he woke up Saturday morning with severe stomach pains, unable to eat, plus bad joint pain from his Lyme. We had talked about trying CBD, so he found a dispensary two miles from his Grandma's house (we were in New York state) and asked if he could try it. My husband took him there while I was napping and got him a vape pen loaded with CBD. Within 5 MINUTES of the first dose, he felt great! Stomach pain gone, joint pain gone - it was absolutely miraculous. I got up from my nap and he was smiling and had eaten lunch - total 180-degree turn-around. He felt good and fully enjoyed the rest of the weekend and was able to eat.
Although I knew that many other patients - including many of the kids/teens/young adults represented in our Parents' group - have used CBD with success, I hadn't paid much attention to it before. My education on CBD began a few weeks ago when I read this article in Delicious Living magazine, ironically unaware at the time of our son's new symptoms. The article begins by explaining what CBD is:
"CBD (cannabidiol) is a component of hemp—a plant that looks a whole lot like marijuana. In fact, they’re both Cannabis sativa plants. The key difference? Hemp is grown to have a legal limit of less than 0.3 percent THC.
When people think of getting high on marijuana, it’s the THC (tetrahydrocannabinol) they’re thinking of: Marijuana typically has THC percentages in the teens.
In other words, nobody is getting stoned on CBD—it’s the clean cousin of marijuana’s THC.
While CBD and THC are very different, they are both plant chemicals known as cannabinoids. There are about 100 different cannabinoids in the cannabis plant (researchers are still counting)."
I recommend reading the rest of the article, as it was quite enlightening to me and refers to some of the research that's been done so far, as well as anecdotal evidence of the many uses of CBD.
Today, almost a week later, his disposable vape pen had run out, and he had some stomach pains this morning, so I ran to our local natural foods store and was happy to see they had a nice selection of CBD products AND someone on staff who was knowledgeable about them. I chose this Plus CBD Oil Spray in the lowest concentration (the one shown at the link) and brought it home to him. He tried it right away, and it worked immediately, as the vape pen had, and eased his stomach pain enough that he could eat lunch with me! Only problem is that I got him the unflavored, and he says it tastes pretty bad, so tomorrow, we'll take it back and exchange it for one of the flavors (peppermint or cafe mocha) - our local store has a money-back guarantee and said we could bring it back if there was any problem!
A local friend suggested we go through the official Delaware dispensaries, so we will check with our doctor when we see her next week, but in the meantime, this seems to be working well. It's so important for him to be able to hold food down, both to gain some weight back and to get the nutrition in him (not to mention being able to take his meds!). Next week at our appointment, we will also get back all the results of the many tests and hopefully get to the bottom of what's causing his stomach pain, but in the meantime, this easing of symptoms is very important.
We are relieved and thrilled that the CBD is working so well, and we are seeing our son come back to life and seem like his old self, but I also have so many questions! Who else has used CBD, for which symptoms, and for how long? Is the vape pen or oil the best option? What other methods have you tried? Our son read that the vape pen is the fastest-acting but doesn't last long and that edibles will last longer (and obviously go right into the stomach). One problem with edibles is that many of them are filled with sugar (gummies, brownies, etc), and he is on a sugar-free diet due to chronic yeast overgrowth. The guy in the store said that the gel capsules wouldn't be as effective as the vape or oil/mouth spray. Would love to hear more from all of you brilliant people!
Please share your own experiences and/or questions in the comments. As we learn more, I will post it here on the blog.
My husband's not a huge fan of comedies, but we usually have at least one comedy show in progress that we watch together, when we don't have time for a full hour-long drama. This winter we finished up House of Lies starring Don Cheadle (which is very raunchy and funny!) and decided to try another Showtime comedy, Weeds. We just started season 3 and are enjoying its edgy comedy and mild suspense very much.
Nancy Botwin, played by Mary-Louise Parker, recently lost her beloved husband to a sudden heart attack and is struggling to support her two sons, Silas and Shane, on her own. She lives in Agrestic, an upper class California suburb with cookie-cutter McMansions (and seemingly cookie-cutter lives for its residents). Nancy knows that many of her outwardly straight-laced neighbors and fellow parents indulge in smoking pot, so she decides to make some money on the side to help her maintain the lifestyle they are used to. She asks her friend Conrad, played by Romany Malco, to introduce her to his aunt, Heylia (played by Tonye Patano), who is a dealer. Nancy's brother-in-law, Andy, played by Justin Kirk, moves in ostensibly to help her with the boys, though he's actually broke and quite a pothead himself and very much like having a third kid around! Kevin Nealon plays Doug, Nancy's accountant, who also likes to get high and helps Nancy set up her business. Elizabeth Perkins stars as Celia, a haughty and self-absorbed neighbor (and sometime-friend) who ends up running an anti-drug campaign in their neighborhood, with no idea that Nancy is dealing.
Just the set-up is funny: as the opener to the show (accompanied by the song "Little Boxes") indicates, Agrestic is filled with identical houses and almost-identical families living seemingly perfect lives. Just below that perfect surface, though, are marriages falling apart, affairs with fellow residents, and lots and lots of people getting stoned to get through their lives. Mary-Louise Parker is wonderful in the lead role, with an excellent and entertaining supporting cast. The plot reminds us a bit of Breaking Bad, in that Nancy gets started in the drug business to support her family but ends up getting pulled further and further into the criminal world, until she is in over her head. It's one of those shows where just when you thought things couldn't get any worse...they do. But it's less dark and more funny than poor Walter's story. There are, of course, some silly stoner scenes, especially when Andy and Doug hang out together, but most of the plot centers on Nancy (who doesn't usually get high) and her efforts to run a business without getting pulled into the dark side of the drug scene. She is fearless (sometimes stupidly so!), and there are plenty of laugh-out-loud moments in every episode, plus some suspense as to whether she can manage to get out of whatever current crisis she is mired in. We are thoroughly enjoying it, and it makes a nice change from the one-hour drama shows we mostly watch - a fun palate cleanser.
There are 8 seasons in total, and we are currently on season 3 (though it's hard to imagine how much worse things could get for Nancy!). Weeds is a Showtime original, so it is available on their streaming service and also on Netflix. It is also available on Amazon for $1.99 an episode or $9.99 for the first season of 10 episodes, and it is available on DVD.
I watched the first episode of the new Netflix series Dead To Me on my own at lunchtime and immediately thought, "Oh, my husband will like this one, too!" So he watched the first episode and agreed, and we've been watching it together ever since. It's very hard to review this suspenseful, warm, funny TV show because there are surprising plot twists right from the very first episode, so I'll tread carefully here to avoid spoilers...
Christina Applegate (of Married with Children fame) stars as Jen, a grieving widow and mother of two sons. Her husband was recently killed - suddenly and violently - in a hit-and-run, and it's clear from the opening scene that Jen isn't coping well, when she says horrible things to a kind friend who brings a casserole over and then slams the door (check out the trailer below). Jen finally drags herself to a grief group counseling session and meets Judy, a bubbly, effervescent woman played by Linda Cardellini (who starred in Freaks and Geeks, ER, and Scooby Doo). Judy lost her fiance, and the two women soon bond over sleepless nights and shared grief. They are opposites in some ways, with Jen very sarcastic and tightly wound and Judy a sunny free spirit, but they share a dark sense of humor and help to support each other. Before long, Jen invites Judy to move into her guest house, as their relationship continues to grow.
That's about all I can say about the plot (and about all you will see in the trailer), but there are some surprises in store in this twisty, strange, dark comedy about friendship and grief. The two stars are both outstanding in this show - warm, funny, and emotional (in their own ways). Suspense builds as secrets are slowly revealed. We are both loving this show! The darkly comic tone, suspense, and the theme of female friendship remind us somewhat ofA Simple Favor, the movie we saw last year (definitely check it out). This wonderfully innovative TV show will make you laugh and keep you guessing.
There are ten episodes in this Netflix original show. We have watched eight of them so far, and can't wait to see what happens next!
Have you tried Dead to Me yet?
Dead to Me | Season 1 Official Trailer [HD] | Netflix - YouTube
Last weekend, a bit bored with the same old TV shows we've been following all fall/winter/spring and with a long weekend ahead of us, my husband and I enjoyed some movies, including Like Father, a Netflix movie starring Kristen Bell and Kelsey Grammer that I've been wanting to see since its release last year. It was a fun, warm, delightful film that we both enjoyed.
Kristen Bell plays Rachel, a high-powered ad executive who is such a workaholic that she is late to her own wedding because she was outside talking to a client on the phone. When her phone falls out of her bouquet at the altar, her husband-to-be gives up and calls it quits. As Rachel runs out, she notices her estranged father trying to quietly leave the wedding. Her father, Harry, played by Kelsey Grammer, left when Rachel was just five years old, and she has no idea why he suddenly showed up on her wedding day. The two end up getting drunk - really drunk - together that night, and they wake up the next morning out at sea on the cruise ship that was supposed to be Rachel's honeymoon with her new husband. Instead, she is stuck on the boat with her father, who she barely knows.
As you can imagine, there is lots of humor from the situation, with the father-daughter pair trapped in the honeymoon suite among other happy couples celebrating. But this movie is also poignant and heart-warming, as the two begin to get to know each other and reconnect. There's even a bit of a mystery as to why Harry stayed away for so long and why he showed up now. The supporting cast are all good, including Seth Rogen as a chill teacher from Canada who Rachel picks up, but Kristen Bell and Kelsey Grammer are at the center of the story, and both are excellent in their roles. They are both favorites of ours, so watching them made the movie even better. The whole thing is warm, funny, and uplifting (and the climactic karaoke scene lots of fun!). It's a very entertaining movie that also leaves you feeling good.
This is a Netflix original movie, so it is available exclusively on Netflix.
Like Father | Official Trailer [HD] | Netflix - YouTube
It's not yet the official start of summer, but it's now June, it's hot outside (and we have the a/c on inside), my son is home from college, and we ate local strawberries this week, so it does feel like summer now!
I was trying to decide on a topic for today's Weekly Inspiration and realized there are actually a bunch of relevant topics for summer, all focused on ways to enjoy our summers more, even with chronic illness.
Easy Living?Summer is considered the season of easy living for most people, but living with chronic illness brings it own challenges (as in every season!), from the heat to the kids being home from school to the special challenges of travel. Check out my article, Summertime...and the Livin' Is Easy (Or Is It?), that was published on the ProHealth website for tips on dealing with summer's challenges, as well as ideas for actually enjoying the season.
Hit the Road That ProHealth article includes a few travel tips, but traveling can seem insurmountable for many with ME/CFS and related illnesses. Especially in summer, though, you may need or want to travel to enjoy a vacation with your family or to visit far-flung friends or extended family. This blog post, Traveling with ME/CFS, includes a lot more detail on how to manage travel, including all the accoutrements I travel with to make my travel life more comfortable and do-able and my tips for managing both air travel and road trips.Be sure to read the comments at the end of that post, too, (and add your own!) because some of my readers added some great tips I hadn't thought of.
Get Out! Many of us spend most of our time indoors, due to our limitations, but there are huge benefits to getting outdoors and enjoying nature, even briefly. Lying down on a chair on your deck absolutely counts! And research shows both emotional and physical benefits even from looking out a window or looking at pictures of nature and the outdoors! The research is really pretty amazing. You can read about that, plus my tips for enjoying the outdoors with a chronic illness at my post, Get Out! Nature Improves Health(a previous Weekly Inspiration post), which includes a link to another post on Camping and Enjoying the Outdoors with ME/CFS, as well as the full text of an article I wrote for ProHeath on The Restorative Power of Nature. It really is both beneficial and enjoyable to get outdoors, even just for a few minutes a day.
Enjoy a Book Summer is a great season for reading (you may have noticed the proliferation of articles on "beach reads" lately!), and it's something we can fully participate in, even from bed or the couch! I have always loved reading, since I was a little girl, but since becoming ill 17 years ago, I have really embraced my love of reading - books bring me so much pleasure, even on my worst days. In fact, about the time I started this blog (13 years ago!), I also started a book blog, Book By Book.
If, like many with ME/CFS, you struggle to read because of brain fog, I can help you with that. This post on The Joy of Reading (another article I wrote for ProHealth) provides tips and ideas for those who can no longer read like they used to, including audio books and books written for kids and teens, plus LOTS of great suggestions of some books I have loved in several different categories. To add extra fun to your summer reading, consider joining my annual Big Book SummerReading Challenge. You only need to read 1 book of 400 or more pages between now and September (though you can read more) to participate, and it's a lot of fun interacting with other readers. All the details are at that link.
How do YOU enjoy summer? Do you do anything different to make the season special? Do you have any tips to share on managing the challenges?
Time for me to make some welcome home pancakes for our son, using those fresh, local strawberries!
We are getting a little bit bored with all the TV shows we are keeping up with at this point in the season (especially since we've been watching some of them for 3-4 seasons and are on the 15th or 20th episode of the season now!), so we decided to watch some movies this weekend. Last night, we found a thriller from 2007 on Netflix that sounded good, Fracture, and it lived up to our expectations with plenty of suspense and creeping tension!
Anthony Hopkins stars as Ted Crawford, a wealthy and brilliant man who investigates plane crashes and spends his spare time creating beautiful and intricate marble runs and perpetual motion machines. In the early scenes of the movie, he witnesses his wife and her lover together at a hotel, goes home to wait for her, and coldly shoots her in the head. He is calm and meticulous as he waits for the police, gun in hand. Lieutenant Ron Nunally, played by Billy Burke, shows up with a SWAT team and falls to the floor in shock when he sees the bleeding woman, who is - you guessed it - his lover. Over in the Los Angeles D.A.'s office, Willy Beachum, played by Ryan Gosling, is a quiet and unassuming young man from Oklahoma who has a 97% conviction rate. Although he is being hired by a ritzy corporate firm, he is assigned this one last case, Crawford's, because the police say it is a slam-dunk with the weapon and a signed confession. Willy is schmoozed and distracted by his new firm and especially his new beautiful boss, Nicki, played by Rosamund Pike. He is completely stunned to go to court, expecting a quick guilty plea from the old white-haired man, to find a sly, clever defendant who insists on representing himself, pleads not guilty, and requests that the case go directly to trial without the preliminaries. Soon enough, every single piece of police evidence falls apart, bit by bit, and Willy finds himself struggling to figure out how to convict this man who he knows is guilty.
Anthony Hopkins is at his most Hopkins-esque in this tense thriller, playing with his opponent as only Hopkins can, like a suited, gentlemanly Hannibal Lector. As Crawford, he is intelligent, arrogant, and certain that no one can touch him, further frustrating Willy. The tone is dark, as befits a thriller, but with a subtle sly humor, thanks to Crawford's refusal to take the proceedings seriously. We joked before the movie started that Gosling usually plays a brooding, mostly silent character in his films, and there is some of that here, but at the beginning, you also see Willy as a smiling, happy, upwardly mobile guy with everything looking perfect for his future. Of course, Crawford pulls that easy confidence from him, little by little. As the audience, you watch Crawford shoot his wife in the opening scenes, so you know he did it, but the real mystery here is how can he get away with it? It's a captivating question that kept us rapt and guessing right up until the very last scene.
We love thrillers and mystery/suspense movies, but it seems to us like there aren't as many of them (and certainly not as many good ones) today as there were 10 or 20 years ago.
What movies do you recommend in the thriller/suspense/mystery genres? We also enjoyed A Simple Favor (dark, suspenseful, and funny) and Taking Lives (though it is from 2004 - see what I mean?) recently.
Today, I thought I'd share some inspiration from around the web from other chronic illness bloggers. These wonderful blogs are not all specifically about ME/CFS, but they each have some great tips to share with their fellow chronic illness sufferers. And several of today's picks are about traveling while chronically ill, just in time for vacation season!
What To Do When a Doctor Isn't Listening To You from Kate the (Almost) Great, who blogs about her journey with arthritis. My answer to that question would normally be, "Get out of there and never go back!" but Kate has some really great tips to help you get the most out of any doctor's appointment.
Boost Your Belief and Maximise Your Motivation from the ME/CFS Self-Help Guru. Julie is a great writer, with a strong focus on improving your life with chronic illness and finding joy. She was my editor at ProHealth for many years, so I can attest to both her writing abilities and her deep well of inspiring topics. This post is about a FREE 5-day challenge Julie runs that begins Monday, May 27 (tomorrow!). She's gotten some great feedback from this challenge in the past, which you can read about at the link.
Did Your Chronic Illness Insist That You Spend Your Vacation In Bed?from The Disabled Diva. Cynthia lives with multiple chronic illnesses, and this post includes some great travel tips for those with chronic illness to encourage you to go ahead and take that trip you want to go on but to be prepared to take care of your needs on the road. And if you are planning a trip, you can also check out my own guide for Traveling with ME/CFS, with all of the tips that help me to be able to travel.
How To Plan a Wheelchair Accessible Trip from Travel Breathe Repeat, where Sarah, who has a chronic illness, writes about her travels with her husband. This post has some great tips for traveling when you use a wheelchair.
Hope these great blogs and posts provide some inspiration for the new week for you! If you've seen other inspiring blog posts recently (or written one yourself!) please share the link in the comments below.
“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis
I am still trying to catch up from my many travels the past two months. I finally cleared my e-mail inbox, but the list of things I want to cover here on my blog just keeps getting longer! I'm going to split the news I want to share with you into Community Updates and Research Updates.
Today's focus is on patients, with lots of exciting news from the worlds of patient communities and advocacy:
Our Own Local Support Group The local support group I started nine years ago has grown to about 40 families in our region, with a variety of related conditions including ME/CFS, Lyme, EDS, POTS, and more - some with sick adults and some with sick kids, teens, or young adults. We had one of our local gatherings yesterday, meeting for lunch at a restaurant, with ten from our group able to attend. About half were mothers of sick teens/young adults and the other half were sick themselves, and two people were fairly new to our local group and had never met anyone else before. As always, the experience of meeting others with the same illnesses and experiences was reaffirming and helpful to us all. We talked for almost three hours (then I went home for a 90-minute nap!) about effective treatments, the best doctors in the area, our experiences, and more. It is always a very positive, supportive, and uplifting experience, even for someone like me who's been in the group since the beginning and sick for 17 years. As always, I highly recommend that YOU try to find others in your local community - it is life-changing. This article I wrote, Birds of a Feather - The Joys of Community, tells how our group started and provides tips for finding others in your area.
ME/CFS International Awareness Day and #MillionsMissing This summary and photos from #MEAction of protests and activities held both publicly and online on ME/CFS International Awareness Day all over the world is truly inspiring. Take a moment to read through all the amazing events held on May 12 and to peruse the many photos of patients speaking up, in public and from their beds. Given how isolated and alone most of us were when we started on our illness journeys, it is stunning to see this evidence of patients coming together all over the world to be seen and heard. It gives me even more hope for a better future for all of us. If you didn't have a chance to take part in Awareness Day activities, in person or online, this year, maybe this moving sum-up will inspire you to get involved next year, if even from your couch or bed. After decades of isolation and ignorance, our voices are finally being heard, and it's a powerful thing to see.
Exciting News from Patient Advocate & Community Leader Jen Brea It's been all over the internet this week - Jen Brea, co-founder of #MEAction and the filmmaker who created the ME/CFS documentary Unrest, is officially in remission. This blog post describes in her own words what happened and how she got to this point, and it's a remarkable story, given how severely disabled Jen was at various times and how well she is now (though still working hard at recovery and rehab). In her case, the underlying cause of her ME/CFS was several mechanical factors in her spine and neck that were corrected with multiple surgeries, something she and her doctors discovered entirely by accident. Although obviously, this will not be the case for every (or even many) ME/CFS patients, I do know others like her and it is likely behind some percentage of ME/CFS cases and so provides clues as to the wide variety of causes and factors in our very complex condition. In that post, Jen describes her elation at her remission, yes, but also her grief, trauma, guilt, and hope. Even if Jen's case is entirely different from your own, we should still be able to share in her triumph and learn from her experiences. There is still so much we have to learn about the various causes and factors behind ME/CFS for the millions of people suffering around the world - many of whom Jen has helped with her film, her advocacy, her activism, and her honest reaching out to others.
Jen Brea and her husband
Other ME/CFS Blogs Finally, if you're looking to connect with others with ME/CFS online, Liz of the Despite Pain blog, put together a wonderful list of ME/CFS bloggers. Liz doesn't have ME/CFS herself, but she compiled this list for ME/CFS Awareness Day, in honor of her fellow chronic illness patients who do have ME/CFS and to help build awareness for our cause, which I think is a remarkable way to reach out. Check out her list (including this blog!) and go discover some new-to-you bloggers and other ME/CFS patients. It's a great way to begin building YOUR community!
Do you have any news to share from your local or online community? Leave a comment below to help spread the word and connect to other patients.