Thursday, April 27, 2017

Preventing and Treating Allergies

Flowering trees are one of the biggest allergy culprits in the Mid-Atlantic
Here in the Mid-Atlantic region of the U.S., everything seemed to start blooming at the same time this year, creating an allergy season even worse than usual. We were on vacation in Virginia the week that everything blossomed down there and returned home just in time for our own blooming season, so I had two really bad weeks of allergies in a row. My son, here in college, texted me on our vacation to say his allergies were horrible, so bad that his skin itched all over and he occasionally broke out in hives (spring trees are one of his biggest culprits).

Although allergies are a problem for much of the population, they are even more prevalent in those of us with ME/CFS. The particular type of immune dysfunction that characterizes our disease - a Th2 dominance - makes our immune systems over-react to allergens, making us even more prone to allergies or perhaps even developing them for the first time in our lives after getting ME/CFS. For me, sudden-onset allergies were a precursor to ME/CFS, one of many signs that my immune system was going haywire. I never had any kind of allergies until I was 30 years old, and now I struggle with them year-round.

One way this tendency toward allergy shows itself in ME/CFS is our likelihood of developing food intolerances and allergies. My older son and I used to drink LOTS of milk every day and never had a problem, but we both became dairy intolerant after developing ME/CFS. In fact, a recent study showed that 30% of ME/CFS patients are dairy intolerant, so if you have undiagnosed gastro-intestinal problems, definitely try giving up dairy (and remember to check your medications for lactose).

The other primary way this immune dysfunction shows up in allergies is a response to environmental elements. This can be seasonal - as in the case of my son's spring allergies when the trees blossom - or year-round, as are my own allergies to dust mites and molds. Lucky me - I also have occasional allergy flare-ups when things bloom, like I did this spring.

Allergies aren't just a minor annoyance. Even in healthy people, like my younger son, a bad allergy flare-up can make him feel sick and exhausted. And when you add allergies in on top of ME/CFS (or fibromyalgia or Lyme), allergies can be the straw that breaks the camel's back, worsening all of your "normal" symptoms. It's an additional load on our already-overloaded immune systems. So, what can you do about it?

Prevent Allergies By Normalizing the Immune System
This post explains all about the immune dysfunction in ME/CFS, which is at the heart of our disease. Treating immune system dysfunction can therefore get at the root of ME/CFS and help to improve all of its symptoms. My son and I have found this to be very true, and much of our improvement over the past 10 years has been from treatments aimed at normalizing the immune system. One of those treatments is low-dose naltrexone, which helped us in many ways and is aimed at correcting (to some extent) those immune system abnormalities.

The other main treatment we use to normalize our immune systems is inosine, sold as a supplement in the U.S. (and quite cheap). That blog post linked in the previous sentence has all the details of our use of inosine, what it does, and dosing (which is a bit complicated). As I explained in a post last week on Virally-Induced Crashes, inosine has greatly reduced those kinds of crashes for both my son and I. We used to spend most of the winter relapsed from being exposed to one virus or another, and now that is a rare occurrence.

Much to my delight, though, I noticed another benefit of inosine: my allergies got much, much better. I used to have bad allergy flare-ups several times a year, where my eyes would water constantly, making them so sore and inflammed I couldn't wear my contact lenses, plus the typical runny nose and congestion, which for me also leads to sinus headaches. Now, on inosine, these flare-ups are a rare occurrence. When it happened on our vacation this month, I believe it was because I was taking a break from inosine (again dosing is complicated, and you need to take a break every once in a while). Once I got back on inosine after my two-week break, the allergies cleared up quickly. Note to self: don't take my inosine break in the spring!

Treating Allergies
So, taking inosine has greatly reduced my allergies so that I rarely have a bad flare-up now. My younger son does, though (he's the one who's recovered from ME/CFS), and I still have occasional allergy symptoms. When they hit, there are all the usual over-the-counter remedies that you can find at the drugstore.

Your first step should be to take an antihistamine. Allergies are caused by inflammatory compounds called histamines that your immune system reacts to; antihistamines block these compounds. Most of the prescription antihistamines are now available over-the-counter in the drugstore, so you can take your pick. Claritin, Allegra, and Zyrtec are the three most popular ones, listed in order of strength. We have found Zyrtec to be most effective for us. I take it every night since my allergies are year-round, and my son takes it when his allergies flare-up. Note that the white Zyrtec pills (and very often, any pills that are white - read the labels under Inactive Ingredients) use lactose as a filler, so be sure to get the gel-caps if you are dairy intolerant.

Our doctor explained that there are 2 histamine pathways in the body, and most of these antihistamines only block one of those. Good old Benadryl (diphenhydramine HCl) blocks both pathways, which is why it is so effective...but alas, it knocks most of us out. My husband and son use it at night when their allergies get bad. (Note that I am using brand names here, but most of these drugstore products are now available in cheaper generic versions).

And, of course, you can treat allergy symptoms with decongestants, nose sprays, eye drops, and other remedies aimed at easing symptoms. We usually add a steroidal nose spray to our Zyrtec when things get bad - my son has a prescription one, but again, many of the ones that used to require a prescription are now available over-the-counter. Finally, we take Mucinex anytime any of us is congested - for allergies or other reasons. Mucinex thins mucus secretions which helps to prevent them from becoming infected. Back to the immune dysfunction in ME/CFS - since we are extra-prone to getting bacterial infections, like sinus infections and bronchitis, we take extra-strength Mucinex round-the-clock when any congestion is present.

In addition to the usual remedies in the drugstore, our dietician suggested an herbal supplement called Quercetin, which is known to have an anti-inflammatory effect and block histamine release. She was right - I found it to be fairly effective in my arsenal when allergies flare-up. At those times, I take 2 capsules 3 times a day, between meals. The rest of the year, I keep it in the cupboard.

What About Allergy Shots?
A lot of people have asked me whether they should try allergy shots. That's a decision for you and your doctor to make, but it's not a recommended approach for most people with ME/CFS. Vaccines, including allergy shots, are designed to stimulate your immune system. In the case of allergy shots, the strategy is to start with tiny amounts of what you are allergic to and gradually increase until you become less sensitive to it. The problem is that our immune systems are already WAY over-active against allergens, so further stimulating them is not usually a good idea. It is quite likely to result in a crash or relapse after every shot and perhaps even a permanent or long-term worsening of your condition. In fact, I am pretty sure that allergy shots were what triggered my ME/CFS to start or at least were a primary contributor. I got ME/CFS shortly after starting allergy shots, and I believe - in hindsight - that those helped to overload my immune system to the point where it just "broke." So, talk to your doctor (preferably one who understands the immune dysfunction in ME/CFS), but allergy shots are probably not a good idea for most ME/CFS patients.

So, those are our approaches: first, do what you can to normalize your immune system to reduce your allergic response, then treat allergies with over-the-counter and herbal remedies, as needed. As I mentioned above, the inosine has made the biggest difference for me...and I will not make the mistake again of going off it in the middle of the worst of allergy season!

Have you found anything that helps your allergies?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you. Note that this is an excellent price on Mucinex at Amazon - I usually get ours at the drugstore but ordered it as soon as I saw how cheap it was here!


Monday, April 24, 2017

Movie Monday: Passengers

There were some really great-sounding movies released this winter that my husband and I just didn't have time to go see in the theater, and now they are all being released on DVD and streaming. Hurray! After a fun dinner out with friends Friday, we stopped at Redbox and capped off our evening watching Passengers, an intriguing sci fi movie that is kind of like Castaway in space.

5000 passengers and several hundred crew are traveling aboard the luxury star ship Avalon, on their way to a distant planet that houses an Earth colony. Both the ship and the colony are owned by the Homestead Corporation, and these lucky passengers will be starting whole new lives once they arrive. The hitch? The trip takes about 120 years to complete, so they are all - passengers and crew - traveling via autopilot in a state of hibernation.

Something on the ship malfunctions, though, in the first few minutes of the movie, and one of the hibernation pods stops working and wakes its sleeping inhabitant, Jim Preston, played by Chris Pratt. Jim soon realizes he is all alone on the giant ship, the only one awake, and that he has awakened 90 years too early - that means that he will die alone on the ship before he even arrives at the new colony. Things go downhill pretty quickly for Jim, with no company except a robot bartender named Arthur, played by Michael Sheen.

Fortunately for Jim, a second passenger wakes up later, and his sanity is saved. Aurora Lane, played by Jennifer Lawrence, is a beautiful writer from New York who wants to write about the journey and the new colony. Like Jim was, she is upset to find out she woke up when she wasn't supposed to, but at least they have each other. Things are looking up for a while until other aspects of the ship begin to malfunction until reaching a suspenseful crisis point.

We both enjoyed this unique movie that takes place entirely on a ship and has just three actors on-screen (often, just one) for most of the film. Although much of the movie is a love story (this is not a spoiler - it's quite evident from the trailer), there is also plenty of action and suspense, first as they each try to figure out how to fix what went wrong and later as more things begin to go wrong and certain crises come up. The set is gorgeous, on this space-age cruise, and Pratt and Lawrence are both excellent in their roles. For that matter, Arthur is quite charming and amusing himself. The "science" is sometimes a bit iffy, as it usually is in movies like this - I couldn't help wondering why scientists hadn't appreciably increased human lifespan now that they knew how to do things like colonize a distant planet and induce hibernation in humans for decades. But, we were both willing to suspend disbelief and go along for the ride. My husband and I both enjoyed the movie, with romance, a sense of humor, and plenty of suspense. It was a fun journey on a Friday evening!

Passengers is currently out on DVD, available at Redbox or wherever you get DVDs. You can also rent it from Amazon, starting at at $4.99, or buy it digitally or on DVD there (links below). It is not currently available on Netflix.


Sunday, April 23, 2017

Weekly Inspiration: Challenges Are a Part of Life

I recently finished reading a memoir that I found very powerful and moving: Lab Girl by Hope Jahren (my review at the link - no spoilers). Ostensibly, it's the life story of a female scientist and her work, but Hope also writes in a very open, honest way about some personal challenges she's faced. I don't want to spoil the book for you with too many details, since she doesn't address these issues until later in the memoir, but take my word for it - they are considerable, sometimes horrifying trials that she still struggles with today. The book also talks a lot about her science and the various problems she's overcome to get where she is today: an award-winning scientist who runs a well-respected lab. She is also happily married with a child she loves and a long-time lab partner who is also her best friend.

Here's what Hope says early on in her book:
"I know damn well that if there had been a way to get to success without traveling through disaster someone would have already done it and thus rendered the experiments unnecessary, but there's still no journal where I can tell the story of how my science is done with both the heart and the hands."
          - Hope Jahren, Lab Girl

She is describing the scientific process in her lab (and why she wrote this book), but she is also talking about life in general and how challenges are just a normal part of life. You have to go through the tough stuff to get where you are going.

This passage struck me for several reasons. First, one of the best lessons that life with chronic illness has taught me is that everyone has their challenges. You may not know it when you meet someone - in fact, challenges (like our illness) are very often invisible - but everyone is dealing with their own stuff. It is just a part of life. You can't have the happy times without the struggles.

I was also struck by this concept that to end up where you are today, you must go through the stuff you went through to get there. There's no short-cut. Now, maybe you're not happy with where you are today or you still focus on your old life and where you should have been if illness hadn't interrupted your life. Nevertheless, down the road, there may be some good - even happy - outcomes ahead for you, outcomes you could never have gotten to on your old path.

I certainly still miss the work I used to do, helping companies do what's right for the environment while also improving their bottom line. That was very rewarding work. But living with chronic illness led me to a completely different life, where I am able to help other people in a totally different way. I can now use my own experiences to reach out to those in need, whether through this blog or Facebook groups or locally. It's a very different life than the one I used to live, but it is just as rewarding.

I think these concepts apply personally, too, not just to your work or purpose in life. Perhaps if I'd never have gotten sick, I would never have learned the value of slowing down or finding joy in small things. I might not be as close to my husband or my kids, if we hadn't spent so many years of sick days together. Certainly, I have lots of good, close friends whom I never would have met in my old life.

It's an interesting thing to think about: how all your experiences - good and bad - have made you who you are today. How, without your struggles, you would be a different person.

I'll leave you with one more quote from the book that really struck me. I wish everyone had Hope's experiences and insights on this topic:
"Working in the hospital teaches you that there are only two kinds of people in the world: the sick and the not sick. If you are not sick, shut up and help. Twenty-five years later, I still cannot reject this as an accurate worldview."
           - Hope Jahren, Lab Girl

How have your struggles made you who you are and led to your life today?

P.S. As I explain in my review, this is also a very funny book - highly recommended!

Thursday, April 20, 2017

Treating Virally-Induced Crashes in ME/CFS

"Crash days" on the couch for me this week!

(Updated 5/13/20)
The title of this post is my own term for those ME/CFS crashes that occur from being exposed to a virus. In our experience, these are the worst kind of crashes and often last the longest, usually much worse than crashes from over-exertion for my son and I.

This happened to me this week. I spent Easter weekend with 12 other family members, staying in one house for 3 days. So, when I woke up Monday morning with a killer sore throat and feeling horrible, I assumed I had done too much over the weekend. However, crashes due to over-exertion are rare for me now and don't last long (these treatments are why), and when my throat still hurt severely Tuesday and then Wednesday, I guessed that I'd probably been exposed to a virus.

Why Do Viruses Cause Crashes?
Briefly, the specific kind of immune dysfunction that research has shown to be characteristic in ME/CFS makes our immune systems under-react to bacteria but over-respond to allergens and viruses. So, we tend to be extra-prone to catching bacterial infections--like bronchitis, strep, and sinus infections--but we rarely catch viruses, like colds or the flu. However, just being exposed to a virus makes our immune systems over-react with typical immune symptoms, like sore throat, flu-like aches, and feeling feverish (as well as exhaustion, of course). All of this is explained in more detail in this post on Immune System Abnormalities in ME/CFS.

Often, the resulting crash is much worse than if we had actually caught the virus like a normal, healthy person. In the past, crashing from exposure to a virus could easily last weeks or even months for my son and I and was a huge problem for both of us in the fall and winter especially.

So, what can you do to prevent and treat virally-induced crashes?

Preventing Virally-Induced Crashes
As my son and I have treated our immune dysfunction over the years and worked hard to normalize our immune systems, we have both been delighted to discover that those crashes caused by exposure to viruses have greatly decreased. We used to both spend much of the winter couch-bound due to all the viruses floating around, but now, virally-induced crashes are rare for both of us. That's why I was so surprised this week when it happened to me (but, to be fair, I was surrounded by lots of kids in school and young adults living in dorms this weekend!).

The key to preventing these kinds of virally-induced crashes is to treat the immune dysfunction that is at the heart of ME/CFS. These treatments have the potential to improve ALL ME/CFS symptoms, since immune dysfunction is central to the disease, but we have found one of the biggest benefits to be reducing our bodies' over-reaction to viruses. This blog post, Treating Immune System Dysfunction in ME/CFS, explains how two different treatments - inosine and low-dose naltrexone - have greatly helped my son and I to reduce those virally-induced crashes. Of the two approaches, inosine has probably helped the most in this regard--we both saw a huge decrease in virally-induced crashes and eliminated that winter slump when we started inosine. Bonus: inosine has also greatly helped my allergies, again by helping to normalize my immune response. Here are more details on Treating ME/CFS with Inosine (it is a cheap and readily available supplement). Glutathione injections or nasal spray have further improved our immune systems. Since starting twice-weekly injections, I have gone from getting bronchitis 4-5 times a year to going over 18 months without getting it at all!

Treating Virally-Induced Crashes When They Occur
OK, so crashes due to exposure to a virus have become rare for me now (I even caught a cold in January like a normal person!), but they do still occur once in a while, like this week. When that happens, we keep up the immune system treatments, as described above, but add in some extra supplements.

At the first sign of a virus--in my ME/CFS son or I or in my husband and younger son, who are healthy--we load up on herbal antivirals. My older son and I already take Olive Leaf Extract and Emulsified Oil of Oregano (regular oregano can upset the stomach) daily, alternating them, to help us both with viruses and Lyme disease as well as chronic yeast overgrowth and exposure to viruses. Both of those herbals are potent antivirals, antibacterials, and antifungals.

When I have been exposed to a virus and/or have crashed from virus exposure, I usually add in Monolaurin (a component of coconut) and L-lysine, both potent antivirals, as well as extra Olive Leaf Extract. (Note that L-lysine's antiviral properties are specific to herpes-family viruses, but since most of us have those and they get reactivated when our immune systems are dysfunctional, it can help those with ME/CFS.) I generally alternate them--L-lysine on day 1, Monolaurin on day 2, extra Olive Leaf on day 3, etc. Dosing depends partly on the brand you get (those linked above are good quality and adequate dosing), but I take up to 6 tablets of L-lysine a day, up to 3 capsules of Monolaurin a day, and up to 6 capsules of Olive Leaf a day. Remember that these are just temporary, while I am feeling the effects of exposure to a virus and/or fighting one off.

When I actually caught a cold in January (a rare occurrence!), I added in zinc lozenges and/or zinc nasal swabs, which studies have shown can reduce the severity and length of a cold. If my son or I have ANY congestion at all, we also take Mucinex, maximum-strength (1200 mg) every 12 hours - this thins mucus and helps to prevent bacterial infections like bronchitis and sinus infections from developing, which are the real dangers for us (that link to Mucinex on Amazon is the lowest price I have found anywhere!). Wherever you buy Mucinex, be sure to read the package carefully because they make versions that include extras, like decongestant, or have lower doses or are shorter-acting.

If you do develop a bacterial infection--chest tightness or cough for bronchitis or severe sinus congestion that lingers for a sinus infection--then you must see a doctor as soon as possible and get on antibiotics. Since our immune dysfunction makes us extra-susceptible to bacterial infections, it's important to treat them immediately before they develop into more serious infections, like pneumonia. Most doctors will look for high fever with any of these infections, but since temperature regulation is also dysfunctional in ME/CFS, you may not have a fever. My son and I have a "normal" body temperature of about 97.5 F, which is typical for those with ME/CFS, so a temperature of 99 F is actually a fever for us, and a fever above 100 F is rare. Unless we get to see our regular doctor who understands ME/CFS, we have to explain this every single time to whichever doctor is in the rotation that day for sick visits (we also explain the immune dysfunction that makes us more prone to bacterial infections). Be aware that you may have to educate your doctor--you know your body better than anyone.

So, to spend less time in bed or on the couch and more time living your life, first work on normalizing your immune system by treating immune dysfunction. Then, when you do crash from being exposed to a virus, take extra herbal antivirals to help your body fight it off.

And me? Today is Thursday, and I am definitely doing better than the past three days this week. I am still nowhere near my normal functioning level, but I am using my laptop (reclined in bed), compared to yesterday at this time when I was flat on my back with my eyes closed. Best of all, my sore throat was gone when I woke up this morning, a sure sign in ME/CFS that I am feeling better. I will continue to take the extra antivirals and rest more until I am back to my usual self.

Below are links to the products that we like best. Some of these might be found in local drugstores or health food stores (though likely more expensive and possibly poorer quality) and some are less common and need to be purchased online. The A.D.P. is an emulsified oil of oregano that our Lyme doctor recommended years ago, and we still use. We couldn't take regular oregano capsules, as they upset our stomachs.

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

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Wednesday, April 19, 2017

New ProHealth Article: The Challenges of Being a Sick Parent

My latest article has been published on the ProHealth website's Inspiration Corner: The Challenges of Being a Sick Parent (you can read the full text of the article at that link). I know that many of you can relate to this topic - trying to be a good parent when you are the one who needs to be taken care of!

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

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

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

What are YOUR biggest challenges as a parent?

How do you cope?

Tuesday, April 18, 2017

TV Tuesday: American Crime, Season 3

Although I already reviewed American Crime last year, during season 2, I wanted to review season 3 separately because - as was the case for season 1 also - it is wholly unique and stand-alone.

American Crime is a unique approach to a TV series, as each season is a completely separate story, with no connection at all to previous seasons. In essence, each season acts kind of like a mini-series. The only thing the seasons have in common is a handful of top actors, including Timothy Hutton, Felicity Huffman, Regina King, and Lily Taylor (though they play different characters each season). Each season of the show zeroes in on one aspect of crime in America. Seasons 1 and 2 each focused on one particular crime, with complex underpinnings, including racial tensions, and many shades of gray (a home invasion gone wrong in the first season and a male rape at a high school party in the second). Season 3 varies a bit from that formula, instead focusing in on one community and looking at multiple forms of criminal activity occurring there. Several storylines deal with immigrants, while another one focuses in on human trafficking (which, of course, can also affect immigrants).

So, in season 3, there are multiple storylines that are separate but intersect in one way or another, all taking place in one community in North Carolina. In the first episode, we meet Alonzo Gutierrez, played by Benito Martinez, who has struggled to get into the United States illegally from Mexico. He is looking for his beloved son, who left home as a teenager. All he knows is that he ended up working on a farm in North Carolina. Alonzo ends up on the Hesby farm, where he finds some people who recognize the photo of his son, so he begins working there as a migrant worker. The Hesby family has run this farm for generations, but they are now struggling to survive, with pressure to continually reduce costs to preserve a small profit. Matriarch Laurie Ann, played by Cherry Jones, runs the farm with an iron fist, determined not to lose her family's legacy. As you might have guessed, the pressure to cut costs results in hiring migrant workers for less and less pay and appalling living conditions.

Meanwhile, in the city, underage teen Shae is working for a pimp, selling her body to survive. One night, a john beats her, and when the police come, she is put into the hands of Kimara, played by Regina King, a social worker who is devoted to saving kids like Shae, all while she struggles to try to get pregnant herself. Kimara wants to help her new charge, but Shae's not sure she wants to be helped.

A few more episodes in, we meet Clare Coates, played by Lily Taylor, a wealthy woman who has hired a Haitian immigrant named Gabrielle to care for her beloved son. Gabrielle doesn't speak English, but Claire hopes that she can teach her young son French. Her husband, Nicholas, played by Timothy Hutton, owns a furniture company (another classic North Carolina industry) that is also struggling to make a profit, and he thinks it's absurd to hire a nanny who can't speak English.

It might sound confusing, but these storylines are each fleshed out as the season continues, and we get to know the characters. In some cases, there are intersections between the stories, as when Kimara gives a speech to a group of wealthy families, which includes Clair and Nicholas, to explain the tragedy of human trafficking and how resources are needed to help the victims.

As with previous seasons, the production qualities are very high, with excellent acting and writing, and I soon found myself drawn into these disparate lives and caring about the characters. One of the things I like best about this remarkable series is how thought-provoking it is, digging deep into complex issues and looking at the shades of gray that are often overlooked. For instance, we see the horrible conditions of the migrant workers on the farm but also the desperation of the owning family not to lose their business. I am only on episode 5 (of 10), so I am interested to see what will happen next. These are all compelling stories with plenty of suspense and unexpected twists that make me think more deeply about the complexity of the issues facing our society today.

There are 6 episodes out so far this season, and all of them are still available On Demand (the first one comes off on May 30), and episodes 2 through 6 are also available for free on the ABC website. American Crime is also available on Amazon for $1.99 per episode or $14.99 for the entire season (and the first two seasons are also available there). So, you could pay $1.99 for episode 1 and then watch the rest for free on the ABC website.


Monday, April 17, 2017

Webinar on Thursday with Top ME/CFS Experts

As part of its ongoing series, Solve ME/CFS initiative is hosting another webinar this Thursday, April 20 at 1:00 pm Eastern Time, featuring two of the top doctors/researchers in ME/CFS in the world: Dr. Joe Montoya and Dr. Susan Levine. They will be talking about recent work and new developments in the ME/CFS research world. Dr. Levine is our own doctor and participates in many research studies, and Dr. Montoya was one of the pioneers of antiviral treatment for ME/CFS (with great success). Both are on the Research Advisory Council at SCMI and are involved with multiple research projects, as well as seeing patients.

I can't wait to hear what they both have to say! The webinar falls squarely into my naptime, but I will watch the video afterwards (and will post a link here). This should be a good one!

You can sign up for the webinar here.

Thursday, April 13, 2017

Back from Vacation & Research Round-up

Hello! I'm still here! Or rather, I am back! My husband and I took took a vacation camping in Virginia this past week. This was a much-needed getaway for me after a painful and frustrating winter of often being housebound due to painful, swollen feet from erythromelalgia. My feet finally cleared up enough - and the weather finally warmed up enough - for us to take this trip.

My husband and I kayaking at belle Isle SP, VA
It was a wonderful, relaxing week for us. We took our pop-up camper (home away from home) and enjoyed two beautiful state parks in Virginia - Pocahontas State Park just south of Richmond and Belle Isle State Park north of Williamsburg. Both were lovely places, and we enjoyed some short hikes (still limited by my painful feet) and a bit of easy kayaking. On the one rainy day, we explored a bit of Richmond and had some great meals (good food while traveling, too). And we capped off the week with a visit to one of my college roommates and her husband (who also went to school with us) in Williamsburg - great to catch up and lots of laughs!

(If you are wondering how I can manage camping, travel, and outdoor activities, this blog post explains all that, with helpful tips).

On the ME/CFS side of things, the organization Action for ME published a Research Round-up. You can read all the details of the studies here. Though there is nothing earth-shattering here, it certainly shows continued advancement in knowledge of what is behind ME/CFS and how to diagnose and treat it. Here is a quick recap of the studies they list:
  • An Australian study is investigating a potential biomarker for ME/CFS that could help in diagnosis. It's a specific protein that was higher in ME/CFS patients after standing than in healthy controls. More research is needed with a larger group to confirm whether this might work for diagnosis.
  • Another study showed that brain function in people with ME/CFS was significantly worse 24 hours after a 30-minute stationary bike ride (while brain function improved after exercise in healthy controls). Though this fact is clear to those of us with ME/CFS, the study provides additional proof of the severity of Post-Exertional Malaise aka exercise intolerance.
  • A Dutch trial using an RA drug for ME/CFS patients didn't show any significant improvement, but noting that certain inflammatory markers were high in ME/CFS patients might be helpful in future studies.
  • A study of 16 people who described themselves as "recovered" from ME/CFS compared how they each defined recovery - interesting because one person might define recovery completely differently than another, especially after being very sick.
All interesting research, with some intriguing points for follow-up.

I am working to catch up on e-mails, Facebook, Twitter, etc, so please be patient with me. Hope you are enjoying this spring weather that has FINALLY arrived on the East coast (though it brought with it severe allergies for my son and I!).

Relaxing with a good book & a campfire

Sunday, April 02, 2017

Weekly Inspiration: Get Outdoors!

I recently came across this quote about nature while reading a book, and it spoke directly to my heart:
"The best remedy for those who are frightened, lonely, or unhappy is to go outside, somewhere they can be alone with the sky, nature, and God. For then and only then can you feel that everything is as it should be and that God wants people to be happy amid nature's beauty and simplicity.

As long as this exists, and that should be forever, I know that there will be solace for every sorrow, whatever the circumstances. I firmly believe that nature can bring comfort to all who suffer."

The author and book? Anne Frank in her own diary, published as The Diary of a Young Girl (my review at the link). Isn't it absolutely astounding that that beautiful and inspiring passage was written by a fourteen-year old girl, stuck in hiding in four tiny rooms for two years? In this quote, she is both remembering her favorite times in nature before they went into hiding but is also relishing her little glimpses of nature, through a skylight in the attic where she could see the sky and clouds and treetops. I was blown away by the way that she remained so open, optimistic, and positive during her ordeal, as evidenced in this passage and many others in the book. Since I was often housebound during this recent winter because of swollen and painful feet, I could relate to her frustrations with being stuck inside and was also very inspired by her simple joy in looking out a skylight at the natural world.

I grew up reveling in nature and the outdoors. As a child, my friends and I not only played in our yards like most kids but spent countless hours exploring "the woods," those little bits of wilderness adjacent to our huge suburban development. We rode our bikes along trails, played in creeks, and made up our own adventures while tramping through the fields and woods. Eventually, my family got a pop-up camper and traveled to different campgrounds each weekend, spending our free time outdoors and enjoying hikes, campfires, and sleeping outdoors. When I was a teenager, we traded up to a larger trailer and set it up at our favorite campground, Sugar Creek Glen, where we went every weekend between May and October. I did all the typical teen stuff - including sneaking into the woods with a bottle of forbidden alcohol - but my friends and I didn't hang out at the mall. We spent our days and nights taking long hikes, wading up the Glen to climb waterfalls and swim in icy cold pools, and floating in our inflatable tubes & boats down the creek.

I sort of forgot about the outdoor world when I was in college and in my early 20's. Then, I met my husband in Louisiana, and one of the many things we discovered we had in common was a long history of camping and spending time outdoors. We began camping together (in a tiny tent!), and I was quickly reminded of how important nature was to me. We spent our weekends hiking, canoeing, camping, and eventually, even backpacking. Everyone told us we'd have to give all that up when we had kids, but our sons both went on their first camping trips at just 2-3 months old. They spent their childhoods like I did, playing in the woods, building forts, and exploring the outdoors with their friends. We spent every vacation camping (we soon got our own pop-up camper), often traveling thousands of miles cross-country to visit amazing national and state parks (check out my National Park photo series).
My son's first camping trip - age 8 weeks!

When I got sick 15 years ago, all of this became much more difficult, of course. Backpacking was definitely out, just as we were planning to take our sons on their first trip. Likewise, long hikes were (and still are) impossible. But I learned how to fit nature into my new life, and I learned (again) how important the outdoors was to me. We continued camping in our trailer, and I could usually manage short hikes (with beta blockers and my heart rate monitor, I can now hike up to about 60-90 minutes at a time (at a slow pace, of course). I was thrilled to discover that kayaking (which replaced our old canoe) didn't raise my heart rate much, thanks to the fact that I was sitting (and especially after I started taking beta blockers). Often, we spend time while camping just relaxing, enjoying our books or a campfire. Our cross-country trips to beautiful places continued, and I discovered that this kind of quiet vacation spent in nature, going at our own pace and napping every afternoon, worked for my son and I. You can read my detailed tips for enjoying the outdoors when you are chronically ill here.
Relaxing with a book & campfire at Shenandoah National Park last summer

When I am not well enough to take a walk or be active outdoors, I lie on our deck in a comfy chair. Just hearing the birds and the wind through the trees while I look up at clouds and tree branches is incredibly rejuvenating. It's how I recharge, and I definitely notice when I haven't spent enough time outdoors! On my worst days or when it is too cold to go out on the deck, I do what Anne Frank did - I open our curtains wide and gaze out through the window at the trees and the sky. It always brings a smile to my face. It's amazing how much joy you can find just by paying attention to the clouds.

A rare arm day last week out on my deck
Do you make time for nature in your life? It can be an incredibly effective stress-reducer and bring you unexpected moments of joy, even among sorrow and grief, as it did for Anne.

Tell me how you have been able to include nature in your life and enjoy the outdoors, even with your limitations. And if you've forgotten about the healing power of nature (as I sometimes do), then get outside!