Monday, December 11, 2017

Movie Monday: The Fundamentals of Caring

While my husband was away recently, I selected a Netflix original movie I've been wanting to see, The Fundamentals of Caring. We always joke about watching movies the other wouldn't like when he's away, so I told him this one was about a teen boy in a wheelchair who might die young, and he was happy to miss it! But it turned out to be a very funny, moving story of friendship and hope.

Paul Rudd stars as Ben, a newly trained professional caregiver who went into the field to try to deal with a devastating divorce and loss. Ben gets a job caring for 18-year old Trevor, played by Craig Roberts (he plays David on Red Oaks, a show I enjoyed), who has muscular dystrophy and a LOT of sarcasm. Trevor's mom warns Ben not to get too close to her son because his dad left when he was young, and he was devastated by the loss. But Ben decides to upend Trevor's closely monitored routine and take him on the road trip of his dreams, to see all the strange roadside attractions he's always wanted to see. Despite his mom's misgivings, Trevor and Ben set off in the handicapped van for an eventful cross-country trip. Trevor experiences a lot of firsts on the trip but never loses his sarcastic edge, and along the way, they pick up a cute hitchhiker his age named Dot, played by Selena Gomez, who is dealing with her own  issues.

I really enjoyed this movie. Despite the heavy topics here - severe disability, loss, death, and more - it is filled with a dark humor that often left me laughing out loud. The actors are all excellent, and it's wonderful to see Trevor's life opening up a bit, even though the new experiences are sometimes terrifying to him. Ben helps him to realize his dreams, but along the way - as you might expect - Trevor helps Ben just as much. It's a moving, funny, uplifting film...and it's based on an amazing road trip (one of my favorite things, in real life and in movies).

The Fundamentals of Caring is a Netflix original movie, so it is only available on Netflix.

Oh, and I REALLY liked the movie's theme song, This Is the Only Time We Have by Ryan Miller:

Thursday, December 07, 2017

Throwback Thursday: Diet and ME/CFS & Lyme

For this week's Throwback Thursday, I am pulling together some of my past posts about diet, food, and food intolerances & allergies. This topic is important for anyone with a chronic illness but especially important for anyone with ME/CFS and tick infections, as we have in our house. We learned just how important only gradually, but in recent years, diet has played a big role in helping my son and I to feel better and be able to do more.

Food Intolerances
ME/CFS is an immune disorder, and the particular type of immune dysfunction in ME/CFS causes our immune systems to over-react to the presence of allergens. This means that it is very, very common for ME/CFS patients to suddenly develop food intolerances and allergies to foods they have never had trouble with before. In fact, food intolerances are often behind the gastointestinal symptoms that are an integral part of ME/CFS, and eliminating the problem foods can dramatically improve GI symptoms.

That's what happened with me. Before ME/CFS, I drank about a quart of milk a day and loved cheese, ice cream, and other dairy products. I was skeptical when Dr. Bell, one of the first ME/CFS experts who is now retired, suggested I give up dairy, I didn't think it would help, but I tried it for 2 weeks. I didn't see much difference, so I added dairy back into my diet - Wow! Instant cramping, gas, and other GI problems. I gave up dairy...and my GI symptoms went away completely.

A recent study done by Dr. Peter Rowe (another top ME/CFS expert) showed that a full 30% of the young people with ME/CFS in the study were dairy intolerant - and the number is likely the same in adults, thanks to our immune dysfunction. The study also showed a dramatic improvement in quality of life when those kids who were dairy intolerant gave up dairy.

Note that if you are lactose-intolerant (for me, it is both lactose and casein, the protein in milk), lactose is a common ingredient in many medications. The blog post at that link explains how to manage lactose intolerance generally and lists medications that contain lactose.

There have not been studies done on other common allergens, like gluten, soy, eggs, etc. in ME/CFS, but again, our immune dysfunction makes us prone to food intolerance and allergies, so it's a good idea to check with elimination diets.

Eating Paleo
In the last few years, my son and I have switched to a Paleo diet (with our own modifications), and it has definitely helped with ME/CFS, Lyme and other tick infections, and yeast overgrowth. Paleo basically means no grains, no dairy, no sugar. This blog post describes our approach to eating Paleo for immune disorders, with an explanation of why it's a good diet for patients with these diseases/conditions, how we manage it, and lots and lots of recipes and resources to help make it easier (and delicious!).

In addition to diet being essential in managing yeast overgrowth, diet is also very important in improving methylation, a critical step in improving both ME/CFS and tick infections. Several dietary components, including dairy, gluten, and gliadin, block one of the methylation pathways.

Finally, for details on how diet has helped my son and I improve over the years, see My ME/CFS Improvements in 2014 and How My Son Went From Couchbound to College.

How about you? Have you discovered any food intolerances or allergies? What kind of diet has helped your illness?

Heat Desensitization - Erythromelalgia in Remission!

My EM in early November - red, hot, painful, swollen toes
I scarcely know how to write this blog post because I am still shocked and mystified by this whole thing, but my Erythromelalgia (EM) has been in remission for 2 1/2 weeks now. I am absolutely delighted to be wearing socks and shoes again and able to turn up the house temperature a bit, but I still feel like I might jinx it!

What Is EM?
Briefly, Erythromelalgia (EM) is a very painful condition that causes:
  • Burning pain and redness on extremities - often toes and feet, sometimes fingers and hands, and occasionally up the legs or arms, too. For some people, it also affects the face and ears.
  • Affected areas are hot to the touch and give off heat.
  • Some swelling and inflammation of affected extremities.
  • Cold makes symptoms better; heat makes them worse - this is key and differentiates EM from  other possible diagnoses.
EM is a rare condition in the general population but seems to affect those with ME/CFS, Lyme disease, and Orthostatic Intolerance (OI, including POTS and NMH) far more frequently. This makes sense because these conditions all cause or are caused by autonomic nervous system dysfunction, which is also behind EM. I wrote a blog post last year describing EM and my own experiences in getting it accurately diagnosed. My own EM is seasonal, which is less common, and flares up when the outdoor weather turns cold (usually October through April), even though cold makes it feel better once it has started (I know, it doesn't make any sense).

My Experiences
So, fast-forward to November this year. We had a very warm October, so my EM stayed in remission longer than usual, but it began to flare up in early November, as soon as the outdoor temperature began to drop. Knowing from previous winters that it gets worse when my feet get warm, I kept the house temperature cool (something my husband hates), kept my feet bare, never wore socks and mostly avoided closed shoes, kept a fan blowing cool air on my feet whenever the pain started to flare up, and slept with my feet out of the covers AND a fan blowing on them to try to control the pain enough so that I could sleep.

I made a trip down to Baltimore to see a dermatologist at Johns Hopkins whom I had heard knew how to treat EM, but that visit didn't help much. I spent most of it trying to explain that yes, I DID have EM, even though my toes didn't look that bad that particular morning - I had kept them especially cold all weekend just so I could manage the long drive! He finally agreed (to the diagnosis I already knew I had!) and offered a compounded pain cream. I accepted the prescription for that but told him I'd really hoped to get at the root of the problem and not just treat the pain. I asked if I could try a medication called Trental (pentoxifyline) that is supposed to help ease blood flow, better allowing the blood vessels in the feet to constrict and dilate as they should, to avoid the excessive blood flow to the extremities that causes a bad EM flare-up. He agreed. Unfortunately, though the Trental seemed to help me temporarily the two days that I took it, it wore off during the night with a severe rebound effect, with the burning pain flaring up all over both feet, far worse than usual. After two sleepless nights where I had to keep getting out of bed to soak my feet in cool water, I gave up on that. (Note that Trental does help some patients).

Then we went on a short vacation to Florida. The pain was horrible on the way down there on the plane (I brought a small portable fan to blow on my feet throughout the flight), but I was hoping my EM would go back into remission with the lovely Florida weather, as it had during a similar trip the previous year. Most of the pain disappeared by the second day of the trip and by the fourth day, when we returned home, my feet were in remission again. That's when I decided to try something new.
My feet after 4 days in Florida - pain & swelling gone, redness almost gone

Heat Desensitization for Erythromelalgia
As I explained in that first blog post on EM, I joined a couple of groups on Facebook for EM patients. In one of those, a patient named Bob posted a long explanation of how he "cured" his EM with heat desensitization. He explained how he gradually got his feet re-adjusted to be able to tolerate heat again by soaking them in warm water, increasing the temperature a little at a time (this process sort of "resets" the dysfunctional nervous system). Bob said that, yes, this was incredibly painful at first, since heat worsens an EM flare-up, but he soon began to notice improvements and within a few weeks, his EM was in complete remission, and he was able to wear socks again and treat his feet normally. (Note that this kind of heat desensitization has also been used successfully in other, related conditions like Raynaud's - see my note at the bottom of this post).

Bob's post caused quite a stir in our group! People wanted details on exactly how he did it and had loads of questions for him. Many people began trying Bob's process and reporting back on their own improvements and remissions.

Intrigued by Bob's story, I looked for more information on heat desensitization for EM but couldn't find much. I read the only two books on EM (both about heat desensitization) available on Amazon: Erythromelalgia: How I Fixed It by Carine Prevot ($4.99 for e-book) and Secondary Erythromelalgia Survival Guide by William E. Prowse and Lillie Lemon ($6.99 for e-book). Both books are overpriced since they are each 25 pages or less and poorly written (both needed an editor), but it did add to my body of evidence that heat desensitization does work for some people. Prevot used increasingly warmer hot water bottles that she rested her feet on, and Prowse used a complicated approach involving capsicum cream first and then warm water soaks (NOTE: some of the supplements suggested in the Prowse book would make OI much WORSE so should not be tried by those with ME/CFS or OI).

I did ask the Johns Hopkins doctor about heat desensitization, but he said he'd never heard of it. However, living with this condition was affecting my quality of life more and more. Just a few weeks (in November) of keeping my feet ice cold n an effort to keep the EM from flaring up was already very uncomfortable and frustrating. And all my efforts were sometimes for naught, when the EM flared up anyway with terrible pain, especially at night. I couldn't wear socks (or even shoes much of the time), I couldn't get outside or take walks in the winter like I usually do, and I had already broke down sobbing a couple of times from the pain...and the season had only begun! I really did NOT want to go through another whole winter like this.

My Own Heat Desensitization
We had a lot of travel in mid-November, first that trip to Florida and then 5 days in my hometown of Rochester, NY for Thanksgiving. I was really dreading that part because it's much colder up in Rochester, and people keep their houses warmer (everyone kept their house warmer than us!). I was picturing a painful holiday weekend for me, going barefoot in my relatives' homes, carrying the portable fan with me everywhere. My plan was to try the heat desensitization after we got back home.

At the end of our Florida trip, though, I started to re-think that plan and talked it over with my husband. My feet were already in remission from our warm-weather vacation - why go through another painful week and then endure more pain to desensitize my feet? Although nothing about EM makes much sense, it seemed to make logical sense to us to try to keep my feet in their current - normal - condition. Since my feet felt OK when the weather was about 70-80 degrees, why not just try to keep them at that temperature?

So, when we got off the plane in NJ, I immediately changed into sneakers and socks (all I had with me were toe-less socks!) instead of staying in flipflops like I normally would. It was about 45 degrees out that night. On the 2-hour drive home, I let my husband turn the heat up, and I kept my feet in the socks and shoes instead of attempting to keep them cool. When we got home, I put on - for the first time in 3 years! - warm fuzzy socks. It felt great for the moment, but would the pain hit me later?

My favorite warm, cozy winter socks - I missed you!

It didn't. It was rather anticlimactic but an unexpected surprise. I kept wearing shoes and socks, like a normal person does in November. I dug out my old slippers after three years of not wearing them. I let my husband turn the heat up! And, amazingly, I got through the whole Rochester trip - wearing shoes and socks! - without any pain, redness, heat, or swelling in my feet. I tried to just keep my feet at a normal temperature and not overheat them or cool them down.

Now, it has been two and a half weeks with no pain. I'm still in shock. Notice that I didn't title this post Erythromelalgia Cured! It's too soon to say that, and I do expect that it will flare up at some point. If/when that happens, I plan to follow Bob's protocol and get my feet desensitized to heat again with warm water soaks. I will act immediately and not wait for it to get worse. As Bob described in his explanations, the key seems to be to treat your feet normally. If you have EM and want to know more about his process, you can join the Facebook Group Erythromelalgia - Medicines/Treatment, Information and Support and search for "desensitization" in the search box - Bob's very popular post comes up in the search results.

For now, I am thrilled! I'm wearing socks, shoes, and slippers again, taking walks on cold days, sleeping with my feet under the covers for the first time in three years, and joyfully digging through my collection of whimsical socks. It even makes me happy to see socks in the laundry basket. And I changed my Christmas list - removed yet another pair of flipflops from the list and added in slippers and BOOTS! You can't imagine how exciting this is for me.

I love seeing all those socks at the bottom of the laundry basket!
If you also suffer from EM, I recommend considering this kind of heat desensitization process. Because my EM goes into remission seasonally, I was able to do it without any worsening of symptoms, but you might have to suffer through some worsening at first. Some people report improvement beginning as early as one day into the process, and based on my own experiences, I would suggest starting the process at a time when your EM is naturally less flared up (for me that was mornings).

NOTE for those with similar (though opposite) conditions like chilblains (aka pernio) or Raynaud's disease. I was fascinated to hear that a close friend of mine put her own Raynaud's into remission using a similar heat desensitization process (that approach was used successfully in this study). Because all of these conditions stem from autonomic nervous system dysfunction and related poor vascular control, it seems that they can all benefit from "retraining" your nervous system to respond normally to temperature changes.

Tuesday, December 05, 2017

TV Tuesday: Will & Grace (2017)

I finally checked out the new Will & Grace series last week, and I am enjoying it so far!

In case you slept through the 90's and '00's, Will & Grace was a very popular sitcom that ran eight seasons, beginning in 1998, about a gay lawyer named Will, played by Eric McCormack, who lived with a straight interior designer named Grace, played by Debra Messing. The show wrapped up in 2006. In a move you don't see very often in televisionland, it came back this fall after an 11-year hiatus.

The new Will & Grace is pretty much the same old show that everyone loved, only set 11 years later. Grace is now divorced and has moved back into the same apartment with Will that they used to share (temporarily, she says), since Will's relationship also fell apart. Their friends, Jack and Karen, are always around and still the same outrageous characters they used to be. The four of them experience highs and lows together, with the additional challenges of aging.

At the beginning of the new 9th season, the show gets a bit political, addressing some of what is going on in the U.S. these days (the first episode actually takes place partly at the White House), but otherwise, the show is very much the same as the old days. The actors are still great, and the show is still very funny. I am enjoying the way the writers are bringing in some characters and storylines from the original show to either wrap them up or show what's happening now, including Grace's ex-husband, Leo (played by Harry Connick, Jr.), and Jack's son. I've watched four episodes so far and am enjoying it. It's still hilarious, but it can also be moving as it addresses some serious issues, and it is still just a lot of fun. When it first came back, it was supposed to be a limited run of just 8 episodes, but IMDB now shows a total of 16 episodes for this season AND a season 10 still to come!

And if you enjoy watching these lead actors, we really loved Eric McCormack on both Perception and Travelers (can't wait for season 2!), and I also enjoyed Debra Messing on The Mysteries of Laura, where she plays a very different character, a tough NYC cop.

Will & Grace is now airing on NBC, so I've been catching up and watching episodes On Demand. You can watch older seasons (1 through 8) on Amazon for $1.99 an episode or $14.99 for a season or catch up on the new 2017 season on Amazon for $1.99 an episode or $19.99 for the season.


Monday, December 04, 2017

Movie Monday: Cloud Atlas

I'm waaay behind on my movie reviews - Mondays are just too busy most of the time! So, today's review goes back about a month or so to when my husband and I watched Cloud Atlas. We came into the movie from two different perspectives - I had read the novel it is based on and he hadn't - so we had two different reactions to the movie (probably the opposite of what you would think!).

Let me start by explaining that I LOVED the novel Cloud Atlas by David Mitchell (review at the link - no spoilers). It was one of those books that just blew me away and immediately rose to my list of favorite books of all time. I couldn't wait to see this amazing book brought to life on the screen, but, as I said, my husband hasn't read it yet, so he went into the movie adaptation cold.

This is a tough story to explain succinctly because it is actually a series of six stories, each set in a different time and place and featuring different characters. The stories, though, are linked in clever ways that aren't obvious at first, but as you watch (or read) you see these small connections. The stories begin in the 1800's and move forward in time to the 1990's and then onto a dystopian future filled with life-like robots and finally to a far distant future where technology is gone and humans - at least in this corner of the world - have reverted to a more primitive agrarian life. Each of the stories is engaging and interesting in itself - and each is very different from the others - but what I love most about this movie & novel is the way that it shows how everything and everyone is interconnected, even across centuries, and how one person's actions might affect someone else many years later and across the globe.

I know that usually when you love a book, you aren't too thrilled with the movie adaptation, but I really enjoyed this one. They used some very clever devices to show that interconnectedness in the film that went beyond what you can do in a book. For instance, they used the same actors for completely different roles in each story. So, Tom Hanks and Halle Berry each play 6-7 different roles in this movie, as do the other supporting actors. Sometimes each one plays a lead role in a story and sometimes a very minor one, but these same faces keep showing up in different guises, which just emphasizes the story's theme of interconnectedness. I absolutely loved seeing my favorite book brought to life in this clever way and watched for the tiny details that connected the different stories, sometimes pausing the movie to point something out to my husband. Since each story is so completely different - one is an adventure on the seas, one is a mystery set in 1970's California, one is a romance, etc. - the movie includes pretty much everything - history, suspense, comedy (the story about Timothy Cavendish is very funny!), romance, sci fi, and more.

My husband found the movie somewhat confusing, which is completely understandable given its complexity. Translating a 500-page book to a 2-hour long movie is always challenging, and with a book that encapsulates 5 completely different but connected stories, it's almost impossible. It helps tremendously if you already know the plotlines and how they connect and you can just sit back and enjoy the spectacular production. So, my husband said he enjoyed it OK but didn't love it.

Bottom line: If this sounds intriguing to you, I recommend you first read the book and then see the movie to see how it translates to the screen and to enjoy the clever ways they visually emphasized those connections between stories.

I am very interested to hear what others thought of the movie - whether you read the book first or not. Leave your comments below!

Cloud Atlas is currently available on Netflix streaming or to rent on Amazon for just 99 cents.

Thursday, November 30, 2017

Throwback Thursday: Donate While You Shop!

I had hoped to get this post up BEFORE Black Friday and Cyber Monday, but I am hoping it is still in time to help you...

There are 3 easy ways to donate to your favorite charity while you shop this holiday season (and year-round). It costs you nothing at all - online stores have agreed to donate a portion of the money you spend on their site!

The one I use most often is iGive. You just start on their site (or use their app for mobile devices), choose your store or search for the item you want to buy, and then click through to the online store. iGive shows what percentage each store has agreed to donate, coupons that are available, and they show a running total on your iGive page of how much you have donated and how much has been donated to your chosen charity in total. So far, according to iGive, my own shopping has donated $228 to Solve ME/CFS, with over $6000 total donated! And I didn't have to do a thing (except sign up and click through the site when shopping). You can choose your own favorite charity.

GoodShop works similarly. You can sign up at the link, choose your charity, and then go through the site to your stores when you are shopping online. I use iGive more often, but sometimes a particular store will only be signed up with one or the other donation service. Both show available coupons for your store and also offer search engines.

Finally, Amazon has its own donation service called AmazonSmile. You sign up and choose your charity. Then, anytime you start from AmazonSmile, a portion of the money you spend on Amazon goes to your charity. Since we buy all of our supplements through Amazon, this can add up fast!

These are my three go-to sites for easy donation while I shop. Do you know of others?

Sign up today, and while you do your holiday shopping this season, you can be contributing to ME/CFS research or whatever your own favorite charity is! It's like giving ourselves an extra holiday gift.

Tuesday, November 28, 2017

TV Tuesday: Norsemen

Hi, I'm back! Sorry for the quiet blog, but I was away for most of the past 10 days, first on a rare mini vacation to Florida with my husband and two sons and then up to my hometown, Rochester, NY, for a busy Thanksgiving weekend filled with big family gatherings. It was great to see everyone but completely exhausting, of course. My husband said too bad we couldn't do it in the reverse order and end the week with the quiet, relaxing (and warm) part at the beach!

So, catching up and getting back to business here on the's Tuesday, so that means a TV review! And our 19-year old son introduced us all to a very funny show while we were on vacation: Norsemen, a parody about Vikings in 790 AD Norway.

My older son and husband, who love the TV drama The Vikings, said that Norsemen is a perfect parody of it - even certain scenes they said seemed pulled right out of the dramatic series and played here for laughs. The show focuses on a small Norwegian village, where the strongest males (and one female) of the clan (including their Chief, Olav) go out on raids and return home victorious with the spoils of their adventures. Back at home, Orm, the hapless and wimpy brother of Olav, takes over as temporary Chief. In the very first episode, the Viking crew is returning home from a raid with some new slaves in tow, including a Roman named Rufus, who is not at all happy to discover how this cruise ends! Rufus creates plenty of problems in the small village and is intent on bringing live theater to this remote region.

The laughs come frequently on this very silly but engaging show. What makes it extra-funny are the glimpses of modern life and language woven into the Viking tale. If you look at the actors' names listed on imdb, you'll see it's an entirely Norwegian cast, but we recognized several of our favorites from other Norwegian shows we enjoy, Occupied and Lilyhammer. Think of Norsemen as a cross between Monty Python and The Vikings - very funny, clever, and often just plain silly. It certainly had my husband and sons quoting entire swaths of dialogue over and over all week and laughing hysterically (much in the way that Monty Python and the Holy Grail affects them!) - and, I admit it, I was laughing along with them.  This show is just plain fun and perfect if you need some mindless escape. Note that there is sex and violence in the show - these are Vikings, after all.

Norsemen is available on Netflix, with two short seasons of six episodes each currently available. We hope there are more to come!

I'm not sure this trailer does the show justice, but at least it isn't giving away all the best lines - there are a lot of laughs in this show:

Tuesday, November 14, 2017

TV Tuesday: Friends from College

When my husband was away in Europe for work two weeks ago, I was searching for a new show to binge on streaming and decided to give Friends from College a try. Its all-star cast is very funny, but it also tackles serious topics - the very definition of a dramedy.

As the first episode begins, Ethan, played by Keegan-Michael Key, and his wife Lisa, played by Cobie Smulders who was Robin on How I Met Your Mother, are moving to NYC where they will be reunited with their close group of friends from college. The six friends all went to Harvard together and are now facing their 40's. One of the group, Marianne, played by Jae Suh Park, will be sharing her tiny apartment with Ethan and Lisa until they can find their own place. Max, played by Fred Savage who starred in The Wonder Years as a child, is another of their group, now happily living with his partner Felix, played by Billy Eichner. Nate Faxon, who I enjoyed watching on Married, plays Nick, who is still single and still acting like a college boy. The sixth member of the group is Sam, played by Annie Parisse, who is married, has two adorable children, and lives with her wealthy husband Jon, played by Greg Germann, in a big house in Connecticut.

Viewers know right from the beginning of episode 1 that Ethan and Sam have continued sleeping with each other since college. It was an occasional thing for the last 20 years, but with Ethan now living in NYC, life gets a lot more complicated. The six old friends revert to college-aged behaviors when they get together, much to the chagrin of their spouses. Felix is particularly stumped as to why his usually sophisticated partner, Max, turns into a raucous adolescent with these people.

As you would expect from the cast list, the acting is top-notch, even the supporting roles. Fred Savage is especially good as Max, and of course Keegan-Michael Key is hilarious whenever he is on-screen. There are a lot of laughs here but also plenty of drama. The "close" friends actually have a lot of secrets hidden among them, and the show even deals with some serious issues, like infertility (and of course, infidelity, too). So, it's funny but sometimes with an undercurrent of sadness. None of these people is as happy as they pretend to be to their old friends. I watched the entire first season in that week while my husband was away and enjoyed it. It was definitely a bit darker than I expected - but still funny.

Friends from College is a Netflix exclusive show, available only on Netflix. Season 2 will be released in 2018 - I'll be watching it!

Sunday, November 12, 2017

Weekly Inspiration: Managing Family Relationships - Holidays & Beyond

With Thanksgiving next week here in the US and the start of the holiday season, I thought it was a good time to repost an article I wrote for ProHealth about this time two years ago: Managing Family Relationships - Holidays and Beyond (you can read the full article at that link or below).

While family relationships can be challenging for those of us with chronic illness all year round, the holidays bring special challenges, including being together with a large group of family members all at once, some of whom may not be very supportive of you. Over the years, I have moved from bitterness and resentment and dreading family gatherings to once again enjoying the holidays with my family. This article includes some tips for managing this holiday season...and maybe even enjoying your family for a change!

What has worked for you?

Managing Family Relationships – Holidays and Beyond

Family relationships can be fraught with challenges when you live with a chronic illness, especially one that is often invisible. I speak from experience, as two of my family’s favorite coping mechanisms are denial and avoidance! Though some of my family members have been supportive of me since I first got sick, many others still never mention my illness and pretend everything is fine.

It took me many years to realize they were acting out of denial, that they really did love me, and in fact, their denial may even be based in how much they love me because it is hard to accept that a loved one will never recover. Also, some people just feel uncomfortable and don’t know what to say or how to act when faced with chronic illness in a loved one.

With the holiday season in full swing and lots of family gatherings, here are some of the things I have learned over the years to make spending time with family less stressful and more enjoyable:

Try to Explain – Once (maybe twice)
When I was first diagnosed, I sent out an e-mail to family and friends, explaining what ME/CFS was and how it affected me. After one horrible family vacation, I sent a long letter to one influential family member, explaining how their (non) actions made me feel. Things got better after that. Try explaining to your family how your illness affects you, though it’s best to do this before the big holiday dinner. Don’t get overly emotional and stay away from blaming. Just explain in simple terms what your symptoms are and the things they might see when you are together – perhaps you need to take naps, you can’t be too active or you get sicker, you have dietary restrictions (and why), or how just talking wears you out. Stay positive, matter-of-fact, and brief. Explain that you don’t want pity but just want them to understand your limits.

Accept That Some People Will Never Get It.
It took me many years of therapy and stress, but I have finally accepted that some family members will never get it – they just don’t have the emotional coping skills to deal with my illness in a healthy, honest way. I am OK with that. Certain people are never going to ask how I’ve been (for fear of what I might say!) or if I need to rest. Interestingly, though, since I gave up my expectations, some of them have surprised me in small ways. I learned that I can’t control their actions, but I can control my own response to them. Acceptance and peace feel a lot better to me than constant angst and bitterness.

I have also found that while the older generation may be a lost cause, I have great hope for the younger ones! Though their parents may not say anything about my illness, I always try to be upfront with the kids in my family. When they ask me questions – like why I need to nap or why I’m not eating dessert – I explain to them in a simple, straightforward way with a positive attitude. My niece was delighted to learn that wearing a heart rate monitor allowed me to have fun with her outside (within my limits) without worrying about getting sicker the next day!

Limit Time with Truly Toxic People
Though you can accept that some people won’t ever understand your illness, there may be people in your family who are truly harmful or abusive to you. In that case, it is best to limit your time with them and keep things on a light note when you are with them. Perhaps there is someone in your family who accuses you of “faking it” or someone who yells at you to just get up and do more. If you have already tried (once, maybe twice) to explain your illness to them and they persist, it may be time to just avoid them when you can. I am fortunate not to have anyone truly toxic in my family, so I decided that my family was important to me and that I could accept their avoidance behaviors because they aren’t harmful to me (once I changed my own responses to them).

Take Care of Yourself
When you are with family, take care of your own needs and don’t expect others to do so. I have found that low expectations are the key to good family relationships! Don’t expect much and you won’t be disappointed – and you might just be pleasantly surprised. Enlist someone close to you who understands your illness – perhaps your spouse or child – if you do need help during a family gathering. Mind your dietary restrictions without making a big deal of them, eating what you can and leaving what you can’t. I might ask the cook if the gravy contains milk, but otherwise I take care of myself. After our Thanksgiving meal, I quietly went upstairs to take my nap – my 16-year old cousin had kindly offered me her bed when I first came in that day (see what I mean about the younger generation?).

Relax and Enjoy Your Family!
Once you have let go of unrealistic expectations and accepted your family members as they are, it’s time to just relax and enjoy your family. I may not be able to help in the kitchen, but I can sit in the living room with my feet up and watch football with my family or sit and talk to my cousins…and go to a quiet room to rest when I need to recharge. Try bringing photo albums or home movies to look at during a family gathering so there is some quiet time built into the day for everyone.

Find a role for yourself. In the past decade, I have become the de facto Family Photographer. Photos and memories have always been important to me, so it’s a natural fit. I may not be able to participate in the post-dinner football game outside, but I can sit on the sidelines and take pictures. At the end of every year, I put my photos on a DVD (with my laptop while sitting in the recliner!) and give it to family members as a gift. When my niece and nephew were younger, I used to love to cuddle up with them and read to them – I even brought my own stack of holiday-specific picture books when we got together. They loved it, and so did I. Focus on the things you can do, rather than on your limits.

Enjoy your family gatherings this holiday season…and all year round!

Thursday, November 09, 2017

Throwback Thursday: Treating Herx Reactions

Copyright: antonioguillem / 123RF Stock Photo
Today's Throwback Thursday post is all about treating Herx reactions, something I have been focused on helping my son with lately (and for many years). A Herx reaction (also known as die-off) is basically a worsening of symptoms that occurs when you are treating infections, and it is very common in ME/CFS and Lyme patients. It's caused when the antibiotics or antivirals (or sometimes even antifungals for yeast overgrowth) kill off a bunch of "bugs" in your system that then flood into the bloodstream, causing a severe response from your immune system. It's a fact of life for everyone with tick infections and for most people with ME/CFS who treat tick infections, underlying viruses, or yeast overgrowth. Many patients stop treatment when they get worse, but that is a mistake because those infections are still active behind the scenes and will only make you sicker and sicker. Instead, you need to reduce the Herx reaction (worsening) so that you can tolerate the treatment.

Treating Herx Reactions or Die-Off - Helping Your Body to Detox
This post, Managing a Herx Reaction, provides more detailed information about Herx reactions and summarizes our own experiences in treating my son's Herx reactions (mine with both Lyme and antivirals were short-lived and not too severe). That post includes a long list of recommendations from many sources, including our Lyme doctor and our brilliant dietician/biochemist, that have worked well for our son. I just updated it today.

Last week, I read this blog post at Recovering Kids blog called DETOX the die-off and feel amazing again! (our roadmap to success), which includes even more information about Herx reactions, some of which I had never heard before. So, I can't vouch for everything listed there, but I wanted to share the post because it provides a lot of detailed suggestions. We will definitely be trying some of them.

Treating Underlying Infections
Finally, if you have no idea what I am talking about and have not yet looked into treating underlying infections yourself, I highly encourage you to do that because it often results in significant improvements for those with ME/CFS and sometimes even complete recovery. In fact, for patients who have tried other treatments and nothing seems to help, there are almost always infections behind the scenes preventing them from improving. Treat the infections, and everything gets much better!

The immune dysfunction in ME/CFS causes old viral infections to become reactivated and makes us especially prone to bacterial infections, so treating underlying infections often yields dramatic improvements. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or CMV or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.

The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Tick infections are very widespread now, occurring in every US state and on every continent except Antarctica. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections (including how to find a Lyme specialist near you).

Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).

So, now when you pursue treatment for your underlying infections, you will also know how to deal with any resultant Herx or die-off reaction!

What has worked best for you and your family for Herx reactions/detox?

Monday, November 06, 2017

Movie Monday: Carol

Sticking with my new policy of writing shorter reviews and catching up on my movie backlog in reverse order...I just watched Carol on Saturday night and enjoyed it very much.

Cate Blanchett is wonderful in the title role, as a glamorous wealthy woman in 1950's New York who is in the midst of divorcing her husband, Harge. She adores their little girl, Rindy. While shopping in a department store for Rindy for Christmas, Carol meets Therese, played by Rooney Mara, a young woman working as a store clerk but dreaming of more. Carol leaves her gloves at the counter, and Therese goes to her home (listed on the receipt) to return them. The two women are obviously attracted to each other, though Therese is currently in a relationship with Richard. He wants to get married, but Therese is reluctant. Carol brings light into Therese's life, and the feeling is mutual, but of course, an intimate relationship between two women is strictly forbidden in the 1950's, and Harge uses their budding relationship (and a past affair) as an excuse to demand full custody of Rindy, citing a "moral clause" to prove Carol is an unfit mother.

This is a beautiful, stylistic film that garnered 6 Academy Award nominations, bringing the holiday season in 1952 New York to life, as Carol and Therese fall in love and go on a trip together. Both lead actresses give deep, emotional performances, bringing out both the tenderness of their feelings for each other and the anguish they feel at being kept apart. It's a love story but also a tragedy, as Carol's much-loved daughter is kept away from her. The movie is based on the novel previously titled The Price of Salt by Patricia Highsmith in 1952 and retitled Carol in 1990. I never read the book, but the movie adaptation was visually lovely, romantic, and moving. It ends on a note of happiness, but that comes at a price.

Carol is currently out on DVD and is available for free on Netflix streaming. It is also available for $7.99 on Amazon or included free with a Showtime subscription through Amazon.

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.


Saturday, November 04, 2017

Two-Part Orthostatic Intolerance Article Published

This past month, I was hard at work on a 2-part article for ProHealth website on Orthostatic Intolerance (including POTS, NMH, and more), which has now been published.

You can read Part 1 here - it covers the basics of what OI is, how it affects people with ME/CFS, fibro, and Lyme disease, and how to easily diagnose it in any doctor's office.

Part 2 covers Treating OI, with a wide range of treatments reviewed, including both non-pharmacological approaches and medications.

Both articles include a list of references, if you want to know more - these are the studies that all the information in the articles came from.

Here on my blog, you can read more about OI and how to diagnose and treat it, plus our own experiences, on this recent Throwback Thursday post on Orthostatic Intolerance. There are links in that post to how to diagnose, plus various treatments that have worked for us.

OI is an integral part of ME/CFS and often present in fibro and Lyme patients, too. It is one of the few aspects of our disease that is easily quantifiable with a simple in-office standing test. Once officially diagnosed with OI (and knowing which types you have), then there are many, many different treatments to try. It can take a bit of trial and error to find just the right combination for you, but most people find OI treatments to be life-changing. They certainly have been for my son and I, allowing us to live active lives without crashing so much. Crashes from exertion are rare for both of us now, thanks to OI treatments.

Have you tried any OI treatments yet? What has worked best for you?

Thursday, November 02, 2017

Throwback Thursday: Treating Yeast Overgrowth

Thrush in the mouth Copyright: adam88x / 123RF Stock Photo
Both my son and I have struggled with yeast overgrowth - sometimes called candida - for many years. It is now fairly well-controlled through a combination of probiotics, other supplements, diet, and medication, but it took us both a long time and a lot of trial and error to get to this point.

Yeast overgrowth is extremely common in ME/CFS, due to the particular type of immune dysfunction inherent in our disease. Yeast or candida is a type of fungus that lives naturally in the gastrointestinal tract, including the mouth, and also in the vagina. However, yeast overgrowth occurs when that yeast grows out of control and takes over. This can occur anytime in your life but is especially prevalent for anyone with immune deficiencies (like those with ME/CFS) and anyone who takes (or has taken) antibiotics because they kill off all the good bacteria in the gut that normally keeps the yeast under control.

Yeast overgrowth is one of those sneaky aspects of our disease - it may be a big contributor to your symptoms without you even being aware that you have it! That's how it is for me - when it flares up, I get extra-exhausted with horrible flu-like aches, brain fog, mild sore throat and wonder why, when I haven't overdone and don't seem to have been exposed to any infections. It sometimes takes me a while to realize it's the yeast flaring up again. I get thrush in my mouth when it gets really bad, but some women get vaginal yeast infections and some don't have any obvious signs other than the worsened ME/CFS symptoms. Severe brain fog is a very common sign of yeast overgrowth (or other infections behind the scenes).

This blog post, Treating Yeast Overgrowth/Candida explains all about how to know if yeast overgrowth is a factor for you, why it occurs, and mostly how to treat it. It includes a long list of the treatments my son and I have tried over the years (many of which we still maintain now). I just updated this post this year, to explain how we've maintained control over yeast overgrowth now for many years.

Since yeast overgrowth in ME/CFS stems in part from our immune dysfunction, Treating Immune Dysfunction can also help to control it. That post includes several treatments that have helped my son and I immensely, with all aspects of ME/CFS, including yeast overgrowth.

Loads of high-quality probiotics, some supplements, and sometimes medication can all help to control yeast overgrowth, but diet is a very important aspect of its treatment. This post, Eating Paleo for Immune Disorders: Our Approach, explains all about our diet, which is a modified Paleo diet, with a heavy focus on reducing sugar, yeast, and grains (those things all feed yeast) to help keep our yeast overgrowth under control (our diet also helps with metabolism and mitochondrial function for better energy and brain function). That post includes lots of ideas, links, and recipes for low-sugar treats that are delicious!

So, those are our experiences with yeast overgrowth and the treatments that have helped us to get it under control.

Do you struggle with yeast overgrowth? Is it possibly a factor you weren't aware of? What has worked best for you to get it under control? Please share your experiences in the comments below, so we can all help each other!

Tuesday, October 31, 2017

TV Tuesday: Wisdom of the Crowd

For my Halloween TV Tuesday post (and my last R.I.P. Challenge TV post), I want to tell you about a new detective show with a twist, Wisdom of the Crowd, that my husband and I have been loving. We binged the first four episodes last week and can't wait for more!

If you saw the movie (or read the book) The Circle, the concept here is similar in some ways. Jeremy Pivens stars as Jeffrey Tanner, a high-tech millionaire who made his money (and his fame) with a hugely popular social media platform. Now, he has left his old company to start a new one with a new kind of social media software that crowd-sources crime solving. With him in this new start-up, no-frills company is Sara (played by Natalia Tena), his partner both in business and romance (though they keep their relationship a secret), and Josh (played by Blake Lee), a brilliant programmer, along with some support staff.

Tanner's motivation in this new venture is the death of his daughter, Mia. The police arrested a man named Carlos (played by Ramses Jimenez) who is awaiting trial in prison, but Tanner is certain he didn't do it (and Carlos continues to profess his innocence). The police and even Tanner's ex-wife, Alex (played by Monica Potter from Parenthood) are convinced the killer has been caught, but Tanner wants to put the power of crowd-sourcing behind the case. Information from the case and new clues are posted online (his new program is called Sophe), users comment or use their phone's cameras to add additional data, and Sophe sifts through it all. For instance, when a user posts a not-seen-before video clip of the front of Mia's apartment, showing a mysterious man leaving the night of her murder, users add their own videos and photos from that night and help look for and identify the "person of interest."

Detective Cavanaugh, played by Richard T. Jones, headed up the murder case. Although he's not convinced, he shares some of Tanner's misgivings that they might have arrested the wrong man, and he wants to be absolutely certain, so he accepts Tanner's invitation to help on the sidelines...though officially in the department, the case is closed. Once Sophe catches on and helps to solve a fresh case, the police department starts to pay some attention to it, and Cavanaugh is officially assigned as liaison so the police can use Sophe as a crime-solving tool.

We are four episodes in so far (episode 5 aired on Sunday, but my husband is out of town!) and totally hooked on this suspenseful and unique show. Pivens has a lot of charisma and intensity as Tanner, and I'm also enjoying Jones in his role as the detective. It is suspenseful, as you'd expect, with a new case each episode while they continue to make progress in Mia's older case. I am expecting - as happened in The Circle - for the crowd to go too far at some point in their zeal to help catch a criminal, and there were hints of that in the first episode. We are both immersed in Mia's murder and enjoying the new cases that come along each episode. There is even a sense of humor and a touch of romance in the show. We can't wait to see what happens next!

Wisdom of the Crowd is currently airing on CBS on Sunday evenings. We've been watching it On Demand to catch up. As of today, all five of the first episodes are still posted On Demand (it says that the first one will come off on 11/4) and for free on the CBS website. Once the free episodes are pulled off, they will be available on CBS All Access (CBS's streaming service). It is also available on Amazon for $1.99 an episode or $17.99 for the first season.

Have you seen Wisdom of the Crowd yet? What new shows are you enjoying this fall?

Monday, October 30, 2017

Movie Monday: If I Were You

I have a backlog of movie reviews to write because I have been too busy on Mondays lately to write an extra post. It turns out that "Movie Monday" isn't very convenient for me...but I do like the alliteration!

To catch up, I thought I'd go in reverse order and start with the movie I watched most recently, Saturday night after my husband left for Europe. As usual when he is out of town, I was looking for something female-centric to indulge in. I stumbled onto a movie on Amazon Prime called If I Were You that turned out to be very, very funny, with moments of warmth and emotion, too.

Marcia Gay Harden (don't you love her?) stars as Madelyn, an older woman married for decades with a career in marketing. In the opening scene, Madelyn talks on the phone with her husband, Paul (played by Joseph Kell), and he tells her he will be working late tonight and won't be home for dinner. It's clear that this has become a frequent routine for him. Madelyn stops into a bistro to indulge in a fancy take-out dessert for herself (two servings!) and sees her husband at a corner table having a clearly intimate conversation with a beautiful, young woman. Shocked and flustered, Madelyn hides in a nearby convenient store as the two lovers leave the restaurant.

To her dismay, her husband's lover comes into the store after her, crying and clearly upset. She buys a rope and leaves, sobbing. Madelyn follows her to her apartment, pretending to live in the building. Standing outside the woman's apartment door, she can hear her ever-more distraught tears. Worried she is going to kill herself, Madelyn knocks on the door. Her fears were correct, and the young woman, named Lucy (played by Leonor Watling), invites her in and begins to confide in her. Madelyn doesn't admit that SHE is the wife of Lucy's married man, though she does tell her she just found out that her own husband is cheating on  her. She learns that Lucy and Paul have been having an affair for a while, that Lucy is in love with Paul, and that he just left their romantic dinner to go home to his wife.

Surprisingly, the two women - both upset and in need of someone to lean on - get to know each other and become friends. Since each seems to have good advice for the other, Lucy comes up with a pact that Madelyn reluctantly agrees to: they will each make decisions for the other woman and tell her what to do. Lucy is still completely unaware that they are both upset over the same man.

What follows is a hilarious farce of miscommunications, mistaken assumptions, and a situation that quickly spins out of control. When Madelyn's husband thinks she is the one having an affair, he suddenly turns jealous and possessive and tries to woo Madelyn back. Madelyn encourages Lucy to concentrate on her career and stop obsessing over Paul, so aspiring actress Lucy goads Madelyn into joining her on stage for a very amateur production of King Lear, with Madelyn playing King (Queen) Lear, and Lucy playing the Fool.

This movie is full of surprises around every corner. Marcia Gay Harden is excellent as Madelyn. She normally plays serious drama roles, but she has a great sense of comedic timing. The other actresses and actors are all very good, too. If I Were You is wholly unpredictable, very funny, and lots of fun, from beginning to end. I laughed out loud while watching this movie but also found it heartwarming and honest.

If I Were You is available for free to Amazon Prime members or you can rent it for just $1.99 (link below - it says $7.99 but that's to purchase). It is also available on DVD (second link). On Netflix, it is not available on streaming but is available as a DVD.


Sunday, October 29, 2017

Weekly Inspiration: Staying Connected with Friends While Ill

My latest article on the ProHealth website was published last month: Staying Connected with Friends While Ill. It's all about navigating friendships when you have a chronic illness, from keeping up with old friends, knowing when it's time to let go of a friendship that no longer works, and even making new friends (it's not impossible, even if you are housebound!). I wrote that article in large part based on my own experiences with all of those aspects of friendship - yes, including losing friends directly because of my illness.

That was very painful when it happened (twice), but fortunately, the good examples of friendship have far outweighed the bad in my case, and I am blessed with lots of caring, supportive friends, both from the earlier years of my life and those I met more recently. You, too, can nurture friendships, even if you rarely leave the house.
Eating crabs with my friends
Here's the full text of my article, reprinted here with permission from ProHealth (or you can read it on ProHealth, at the link):

Staying Connected with Friends While Ill

One of the biggest challenges when living with chronic illness is loneliness and isolation. It can feel impossible to stay connected with old friends when you feel as though you have nothing in common with them anymore. After 15 years of living with ME/CFS and Lyme disease (and having two sons with these illnesses), I have experienced the gamut of friendship failures and successes.

Here are some suggestions for ways to nurture the friendships you have, let go when necessary, and make new friends, when your life is ruled by restrictions:

Be open and honest about your illness but don’t dwell on it. The hard truth is that most people feel uncomfortable in the face of chronic illness, whether due to not knowing what to say or an unconscious fear that the same thing could happen to them. I find that the best approach with most family and friends is to adopt a matter-of-fact attitude. Show them through your example that it is OK to talk about your illness.

It helps to provide specific information on how your illness affects your interactions with them, such as “Going out in the evening wipes me out but I’d love to see you, if you want to stop by my house during the day” or “Exercise makes me sicker, so I can’t handle shopping. Want to meet for a coffee or tea instead?” Be open about your limits and answer any questions your friends have. However, you should also try not to focus too much on your illness. Most people will respond best when you are direct and honest without letting your illness take center stage in your relationship.

Find common ground.  So what DO you talk about with your old friends? You may feel like you no longer have anything in common, but you can probably still relate to them in some ways. Talk about what you both enjoy and find new areas of connection. For instance, you can ask what book they’ve enjoyed recently, talk about your latest TV show obsession, or discuss favorite movies. You can also focus on things you still have in common: your childhood spent together, your kids’ friendship, or your neighborhood.

Arrange interactions according to what you can handle. Once your friends are aware of your limits, you can suggest ways to get together that work for you. My friends know that I need to nap every afternoon, so we get together in the morning or for lunch. We used to take long hikes together, and they know I can’t do that anymore, but I am able to take a short walk with them while wearing my heart rate monitor. Because I’ve explained, they are very patient when I have to stop for my heart rate to come down – we just keep chatting while we wait!

Maybe you can’t leave your house, so ask a friend to come for a short visit. If you have trouble getting up in the morning, arrange to meet a friend for dinner. If you are easily over-stimulated by noise and lots of people, choose a quiet, uncrowded place or meet at home. If you used to love going to the movies together, invite your friend over for a movie night in. Once you have simply and honestly explained your limits, your friends are likely to understand and be happy to work around them.

Stay in touch online & by phone. When you can’t manage to get out or even handle a visitor, try not to disappear from friends’ lives. You can stay in touch via phone or text and on Facebook, Twitter, Instagram, and Snapchat. Your friends may be afraid to disturb you, so don’t wait for them to reach out to you. Try sending a quick message to ask how they are, let them know why you aren’t out and about, and mention your new favorite TV show to start a conversation!

Do your part to maintain old friendships. When you are chronically ill and isolated, it can be easy to fall into the trap of self-pity. Believe me, I’ve been there. It feels like everyone has forgotten you and gotten on with their lives. The truth is most likely that your friends want to reach out, but they’re worried they’ll say the wrong thing. So, rather than waiting for an old friend to contact you, try initiating a conversation with a text or phone call or e-mail. Let them know it’s OK to contact you and that you miss them, and use the tips above to stay in touch.

But it’s OK to let a friendship go when it’s no longer working. On the other hand, sometimes you have to let go of a friendship, as hard as that is. I had two close friends who stopped calling and e-mailing when I got sick. It was incredibly painful at the time, but I had to finally admit they were no longer a part of my life. One I literally never heard from again. I tried to reconnect with the other friend a few years later, and she admitted that she felt horribly uncomfortable in the face of my illness and didn’t know what to say. We traded a few awkward e-mails and then lost touch again, and I had to accept the friendship was over. It can be upsetting, but if you have sincerely tried to stay connected and the friendship is still not working, it might be time to let it go.

Make new friends. Thankfully, the reverse is also true – you can make new friends! It’s more difficult when you are ill, especially if you rarely go out, but it is still possible. Homebound or not, you can find plenty of new friends online. You can visit blogs or Facebook pages and groups that focus on something you enjoy, like reading, knitting, art, or TV and movies. Join discussion forums or Facebook groups for your illness and start a discussion (if off-topic threads are allowed) on your hobby or interest.

If you are able to go out, check your local library, bookstore, and other public venues for activities where you can meet people with similar interests: a book group at the bookstore, a history lecture at a local museum, or a knitting group at the library. Think about your interests and where you might find like-minded people. You can also use virtual communities to find new in-real-life friends – in a discussion forum or Facebook group, ask if anyone else lives in your region and try an in-person meet-up. I started a local support group this way, and they have all become close friends. We gather for potluck dinners or meet for lunch; these new friends have enriched my life.

Chronic illness adds unique challenges to the already tricky business of finding and keeping friends, but the effort is well worth it. Friendship is an important part of life, bringing kindness, comfort, and plain old fun. Given our isolation, we need friends more than anyone, and solid friendships can provide much-needed support. Do your part to make your friends feel comfortable and take initiative, rather than waiting for them to reach out. Go send a message to an old friend now…and join an online group to meet new friends!

What have been YOUR experiences with friendship since getting sick? What tips can you share to help others stay connected?

Thursday, October 26, 2017

Throwback Thursday: Improving Methylation

Today's Throwback Thursday is another topic that has been critical in the improvements we've been able to make in our conditions. I covered Treating Orthostatic Intolerance and Treating Immune Dysfunction in earlier Throwback Thursday posts, and this one is right up there in importance when it comes to treating ME/CFS and seeing improvement in your level of functioning and quality of life.

The Methylation Cycle (click to enlarge), from ProHealth website

The methylation cycle is a group of processes that happen in our cells to help with hormone production, detox, neurological processes, and more. Methylation is part of normal healthy functioning in any person and is extremely important for ME/CFS patients because it is usually dysfunctional (like everything else!).  The best way to explain it is simply to point you to my blog post, The Methylation Cycle: Essential to ME/CFS because it's complicated, and I worked hard to explain it simply in that post, including how to treat with supplements to improve methylation, which should result in overall improvement in your condition.

One critical component of treating methylation is supplementing with vitamin B12, an essential nutrient that is difficult to get from food sources and plays a significant role in methylation. I explain it all in this post, Vitamin B12 and ME/CFS, which includes our own experiences with different types of supplements.

Glutathione is another essential component in the methylation process that people with ME/CFS don't make enough of on our own. This post on Increasing Glutathione in ME/CFS and Related Illnesses explains the role of glutathione and how to get more of it, from diet, supplements, and injections.

Dietary changes are often crucial  to improving methylation and can sometimes bring immediate improvement due to food intolerances you didn't even know you had. One study showed that a full 30% of the young patients with ME/CFS studied had a dairy intolerance! This post, Eating Paleo for Immune Disorders: Our Approach explains the dietary approach we use, based on research and advice from our doctors and dietician and how it has helped us, with lots of tips on what to eat so that it doesn't feel too restrictive, including tasty treats!

Treating and improving methylation was one of several critical factors that quickly improved our son's condition and allowed him to start college on time, as I explain in the post on How My Son Went From Couchbound to College.

All of this is absolutely crucial for any ME/CFS patient, but some of it is complicated. If cognitive problems keep you from understanding any of these posts, please pass them along to a friend or family member who can help you - or a doctor or dietician.

One great thing about improving your condition by improving methylation is that you don't necessarily need a doctor (though, of course, it's always best to consult with one, if available). For many people in areas where there are no doctors even willing to listen and learn about ME/CFS, that makes this one area of treatment that you can try on your own.

I'd love to hear about your own experiences! Have you tried any treatments to help improve methylation? What was the outcome?