New Study: Using Phenylephrine for Orthostatic Intolerance

I am a little behind in reporting this, but a recent study sponsored by the NIH (National Institutes of Health in the U.S.) and the Solve ME/CFS Initiative points to a potential treatment for Orthostatic Intolerance that could help a number of ME/CFS symptoms.

As explained in greater detail in this post, Orthostatic Intolerance (OI) is an umbrella term encompassing Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS), as well as other rarer forms of OI. Previous studies show that about two-thirds of people with ME/CFS have POTS and over 97% have NMH, so OI is something that affects everyone with ME/CFS in one way or another. Bottom line is that our bodies have trouble maintaining a steady heart rate and/or blood pressure when we are upright.

OI results from a number of dysfunctional systems (like many aspects of ME/CFS). Some of the causes behind OI that are common (perhaps even characteristic) in ME/CFS include: low blood volume, endocrine problems - the right neurotransmitters are not released in the right amounts at the right times, and poor vascular control. The end result of this combination of effects is that when we are upright, our heart rates increase and/or our blood pressure decreases and our bodies have trouble properly circulating blood to our hearts and our brains. Instead, the blood often pools in our lower extremities (some people's feet and lower legs turn a purple color after standing for even 10 minutes).

Phenylephrine Improves OI (picture from Health Rising)

This study in particular looked at phenylephrine, a common over-the-counter medication used most often as a mild decongestant (sold as Sudafed PE or as a store brand with PE in it, like Walphed PE at Walgreen's). This is not to be confused with pseudoephedrine (sold as Sudafed) which is a much stronger decongestant. These decongestants work because they are vaso-constrictors - they constrict blood vessels. In the case of treating congestion, they reduce the swelling in the sinus passages by constricting the tiny blood vessels there.

However, they also act as vaso-constrictors throughout the body, not just in the sinuses. In this study, the researchers treated OI with phenylephrine via injection. It had a very positive effect on the patients, improving blood flow to the brain and improving their cognitive function.

This doesn't seem like big news to me because vaso-constrictors have long been used as an effective treatment for OI in ME/CFS. Midodrine is a prescription vaso-constrictor that is frequently prescribed for OI and helps many people. I personally have noticed that when I take pseudoephedrine (aka Sudafed) for allergies or a headache, it improves my OI symptoms. In fact, I sometimes take it for exactly that purpose if I have to go out in the evening, and its vaso-constricting properties do indeed improve my stamina.

What's new here is the use of phenylephrine (PE), which is a milder vasoconstrictor, to treat OI and administering it as an injection. In fact, the researchers said it didn't have the same effects when taken orally. I found that interesting because I actually take phenylephrine (just OTC Sudafed PE) every morning for my allergies, and I do find that it helps my OI a bit, though not as obviously as pseudoephedrine.

Both phenylephrine and pseudoephedrine are available over-the-counter as decongestants, though if you decide to try pseudoephedrine, you should do so under a doctor's supervision - it is a strong enough vaso-constrictor that it can sometimes cause heart palpitations. And I avoid taking either decongestant within 4 hours of bedtime or my nap because they can be stimulating.

In any case, it is good to see some research being done into currently available treatments for OI in ME/CFS. As many of us have discovered, treating OI can lead to dramatic improvements in all ME/CFS symptoms because it underlies so many of our problems. Both of my sons benefited greatly from Florinef, which allowed them both to return to school full-time when they were younger, and my older son and I have both had excellent success with beta blockers for treating OI - they have greatly improved our stamina and ability to be active.

Health Rising published a far more detailed review of this study or you can see the abstract of the actual study or the full report at these links.

What has been your experience with phenylephrine, pseudoephedrine, midodrine, or other OI treatments?

Riding the Chronic Illness Roller Coaster

This summer, I began writing articles for the ProHealth website (an excellent source of information on all aspects of our illnesses), for their Inspirational Corner. This article was published on July 25: Riding the Chronic Illness Roller Coaster (reprinted here with their permission):

Riding the Chronic Illness Roller Coaster

The song Helter Skelter (originally by The Beatles) often goes through my mind when I go from feeling fine one day to being badly crashed the next. It resonates with my sense of climbing up only to find myself on a ride back down again. For those of us with ME/CFS and fibromyalgia, life is like a rollercoaster. Not everyone with ME/CFS or fibromyalgia experiences physical ups and downs – some people feel about the same every day – but all of us living with chronic illness deal live with an emotional rollercoaster. Kubler-Ross famously identified five stages of grief: denial, anger, bargaining, depression, acceptance. What many people don’t realize is that these stages don’t occur linearly and aspects that you think you are done with (like anger or depression) can recur over time.

I have found this to be very true in my own life. I certainly experienced all of those stages of grief at the beginning of my illness and even got stuck in depression for a while. For the most part, I feel that I am fully in acceptance mode now, 13 years later. However, once in a while, those other emotions still appear and surprise me.

I am generally a very happy, optimistic person. That’s just my natural temperament, and I am usually content with my life, even with chronic illness. I’ve made peace with my new normal and accept my limitations; I’ve learned to find joy within my restricted life. Every once in a while, though, even after 13 years, despair will just hit me with the force of a tidal wave. I’ll suddenly feel depressed, abandoned, and like a failure. I’ll cry and grieve over all the things I can no longer do. This dark state of mind might last for a day or two and then I gradually come back to my normal happy self – riding the emotional rollercoaster.

I’ve learned over the years that these sudden storms of despair often accompany a physical worsening of symptoms or a crash. That tells me it is tied to the biochemistry in my brain. It helps a bit to understand this, though it is hard to be logical in the midst of that darkness.

So, what helps when I hit bottom? The first key is to recognize that what you are feeling is normal and natural and will eventually pass. This is easier said than done! Those feelings are very real when you are in the midst of them, and it can be hard to remind yourself that you are at the mercy of changing biochemicals. However, reminding myself that these are transient feelings that will pass, just as they have before, can help immensely. I think of it as riding the wave – allowing myself to feel what I am feeling, while acknowledging that it is temporary.

Over the years I have developed some other coping mechanisms when despair hits:

·      Think about/write down what you are grateful for. It helps to remind yourself that things aren’t as black as they seem, that you still have some positive things in your life – family, friends, good books, birds singing outside your window. I wrote previously here about keeping a Joy Journal [LINK?] – writing down each day the little things that brought you joy – and that can help now, too.

·      Reach out to others. These illnesses are isolating anyway and even more so when you are feeling emotionally low. If you have understanding friends or family, tell them you are feeling down. Just sharing those feelings with a loved one can help (make sure it is someone who can be empathetic and not make things worse). You can also share your feelings online with others who you know will understand, in discussion groups or Facebook groups for your illness. For me, that often means writing a blog post, and I am always comforted by the outpouring of support and understanding when I do admit to feeling down.

·      Take care of yourself. Focus on your own needs and do things that you enjoy: read a good book, watch a favorite TV show or movie (a funny one is even better!), take a nap, listen to an audiobook. Do whatever brings you comfort.

·      Be kind to yourself. If you are going through a bad period emotionally (or physically), don’t try to be productive and get things done or push yourself in any way. Indulge in comforting rituals, like a favorite herbal tea, a piece of dark chocolate, staying in bed. Don’t berate yourself for feeling down. Let others take care of you.

·      Help others. It may sound counter-intuitive, but helping other people can be a great way to help yourself. It feels good to be of use or to know that you helped someone. Reach out through your social media networks, chronic illness groups, or to close friends or family. Helping others has been one of the biggest unforeseen benefits of our illnesses in my family.

If none of these kinds of things work or you are stuck in a serious depression that lasts more than a few days, seek professional help. Start with a local referral service or search online. Look for a therapist who has experience with chronic illness (call the office and ask that question before you book an appointment). If you are too sick to leave the house or can’t find anyone locally, look online – there are therapists specializing in chronic illness who will work with you via Skype. In my first few years of chronic illness, I struggled to adjust to my new life of limitations; when my two sons also got sick, I sunk even deeper into despair. I found a wonderful local psychologist (through my husband’s workplace referral service) who had a grown son with ME/CFS. She understood what I was going through and helped me immensely.

Most of all, I have learned to focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. It’s better to focus on small goals, on getting through each day, even each hour, and taking care of myself now. Those black feelings will come sometimes, but I know they will also pass.

Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com. 

Movie Monday (Tuesday) 9/8

Well, I missed Monday, so this week it's Movie Tuesday! It's not so much that yesterday was Labor Day but that I've been really, really sick this past week and a half with my semi-annual bout of bronchitis. It's a bad one this time, and I am still feeling awful, but I wanted to write these movie reviews.

When my husband went golfing Friday evening, I used the opportunity to watch a movie that had no suspense, action, thriller or sci fi themes! I chose The Spectacular Now, a high school drama/comedy, for my Sue-only movie night. Miles Teller stars as Sutter, a popular high school boy who is dating a similarly popular girl at school. Sutter is well-liked and affable, always joking around and having fun. When his girlfriend breaks up with him, his normally heavy drinking habit veers into extreme territory. He passes out one night on a random lawn and wakes up to see Aimee, a quiet, smart, kind of geeky girl from his school whom he barely knows, staring down at him. Sutter and Aimee, played wonderfully by Shailene Woodley, start hanging out together and begin to get to know each other. They are very different but both struggle with mothers who won't listen. Sutter and Aimee become closer, but Sutter's drinking and his lack of drive about his future begin to get in the way. I love high school dramas (big Gleek here!), and my husband's not so into them, so I really enjoyed this movie. It has the perfect mix of funny moments mixed with serious issues and very realistic problems, and both young actors were excellent, especially Teller as the fun-loving boy who doesn't know what comes after high school.

Saturday night, my husband and I both watched Kingsman: the Secret Service, a freebie from Redbox (though we forgot to return it for 2 nights, so not so free after all!). Colin Firth plays Harry, an undercover agent in a super-secret private spy organization headed up by Arthur, played by Michael Caine. Harry recruits an unlikely young man nicknamed Eggsy, played by Taron Egerton, to try out for an open position in the Kingsman. Eggsy is often in trouble, but his father saved Harry's life, and Harry thinks he has potential. Eggsy is up against some stiff competition for the position, with many of his fellow recruits coming from wealthy families. Since this is a spy movie, it need a super-villain: Richmond Valentine, a high-tech billionaire played by Samuel L. Jackson. The Kingsman and their recruits are trying to stop Valentine from destroying the world (naturally). Sounds like a classic spy movie set-up, right? And it is, except for the odd tone of the movie. It feels like it can't make up its mind whether it is a serious spy thriller or a funny spoof, so it falls somewhere in between. In many scenes, you don't know whether you are supposed to be taking it seriously or laughing at it; the comedy feels kind of awkward. There is plenty of action, and we enjoyed the spy thriller elements and all-star cast, but its attempts at humor fell a bit flat for us.

With me sick all weekend, we also watched a lot of TV and enjoyed a mini-series from HBO (originally from BBC and available now on Amazon Prime) called 5 Days, which felt more like a movie than a typical TV show. A woman and her two children go missing at the beginning of the first episode, and the 5 episodes cover 5 different days during the 79-day investigation. It's a crime thriller with an excellent British cast that spends as much time with the lost and frantic family of the victims as it does with the main investigators on the police force, going in-depth with both sets of characters. It's a great mix of drama and suspense that kept us guessing right up until the very end. We found it very compelling and easily watched the whole thing over the course of the weekend - we couldn't wait to find out what would happen next!

Have you seen any good movies lately?

Movie Monday 8/31

I was feeling pretty crummy all weekend, so we tried to take it easy and enjoyed a great movie Saturday night:

We watched 12 Monkeys, and we both loved this unique post-apocalyptic time travel thriller. In 1996, a viral pandemic hit that almost wiped out the human race. The people left moved underground to get away from the toxic surface of the earth. When the movie opens, at some point in the future, scientists are trying to find the source of the virus (which they believe to be a terrorist group named the Army of the Twelve Monkeys) so that they can develop a cure that will allow mankind to return to the surface. To do this, they choose "volunteers" from their prison and send them back in time to 1996. Bruce Willis plays James Cole, one such prisoner. The scientists make a mistake, though, and send him back to 1990 instead. There, trying to warn people about the future global disaster, James is seen as a delusional lunatic and locked up in a psychiatric ward. He meets Jeffrey, played wonderfully and hilariously by Brad Pitt, the energetic and intelligent (and totally crazy) son of a prominent virologist, and Dr. Kathryn Railly, one of the doctors in the hospital, who thinks that James looks familiar and is intrigued by his rantings. The action moves forward quickly, as James tries to complete his mission to save the world. It's an intriguing plot, but the real uniqueness of this film is in its tone and cinematography. Though there is plenty of fast-paced thriller-like action, there is a slightly farcical feel to the movie and plenty of laughs (especially from Brad Pitt's performance!). The scenes that take place in the underground future have a distinct steampunk look. It all adds up to an engaging and suspenseful movie that never takes itself too seriously. We both enjoyed it very much.

Have you seen any good movies lately?

Effective Treatments for ME/CFS

This post is long, long overdue. I have been writing this blog for almost 10 years and have often written about treatments for ME/CFS - new research, things we've tried, things that worked for us, and things that didn't. But you'd have to go searching through 9 years of blog posts to find everything relevant (or at least the 88 posts I've tagged under "treatments")!


There is a misconception that there are no effective treatments for ME/CFS, but that is not true - it's just difficult to find a doctor who is knowledgeable about all of them. I can't count how many times people have told me they were diagnosed with CFS and then the doctor said, "There are no treatments - just go home and deal with it as best you can." As with most aspects of this complex immune disorder, patients (or their caregivers) often have to be their own advocates and suggest treatments to their doctors.

So, here, all in one place, is a list of treatments that have helped my sons and I - a set of guidelines for potential treatments to discuss with your doctor and try for yourself. A couple of important notes first:

1. Everyone is different and different things work for different people - the best approach is to try things and find out for yourself.
2. That being said, don't just try something and give up if it doesn't work at first - with ME/CFS, all treatments require some trial and error to find exactly what will work for you - it may takes many months and many trials to find just the right combination that will be effective for you. So many times, I hear someone say, "Oh, I tried that - it didn't work for me." Then, I find out they tried just one medication or supplement at just one dose - try, try again!
3. In the case of medications and supplements, always start with the lowest possible dose - and then cut it in half! Then, you can gradually work up depending on how it affects you. People with ME/CFS tend to over-react to meds and supplements.
4. Patience and persistence are the keys to success! Don't Give Up!
5. If nothing seems to work for you, then there are usually underlying infections that need to be diagnosed and treated, and you may not improve at all until you address those (see Diagnose and Treat Underlying infections below).
6. I am not a doctor! These are just the treatments that have worked for us  - you should work with your own doctor on your own unique case to find what works for you. Don't have a doctor who understands how to treat ME/CFS? Check these databases to find a doctor near you or call local doctors and ask if they treat ME/CFS. You don't necessarily need an expert - just someone willing to learn more and work with you.

With those guidelines in mind, here are the treatments that have helped my sons and I to greatly improve our ability to function, our stamina, our exertion tolerance, and ultimately, our quality of life. These are not necessarily in order (though going down the list works) - ME/CFS specialists often focus on treating those symptoms or aspects of the illness which are causing the most problems first. Remember - everyone is different!

Correct Sleep Dysfunction
When I first found my primary care doctor and she diagnosed me with ME/CFS (after a year of living with a mystery illness), she said, "The first thing to do is to fix your sleep - that will improve ALL of your symptoms." She was right - with the characteristic sleep dysfunction of ME/CFS, you don't get the deep stages of sleep that you need to recharge your body and keep it running well. Without good sleep, everything gradually gets worse in an ever-increasing downward spiral. In contrast, when you get solid, refreshing sleep, everything is better and you stop that steady decline. I'm not talking about sedatives to knock you out but medications that actually correct the underlying cause of our sleep dysfunction. My son and I have had deep, natural, refreshing sleep almost every night for the past 11 years. Read more about how this works and the details of our own experiences in this post on Correcting Sleep Dysfunction.

Treat Orthostatic Intolerance
Studies show that over 97% of those with ME/CFS have some form of Orthostatic Intolerance (OI), as do about 75% of those with fibromyalgia. Other terms under the OI umbrella include POTS (Postural Orthopedic Tachycardia Syndrome), Orthostatic Hypotension, and Neurally Mediated Hypotension (NMH). OI is such an integral part of ME/CFS that it was included in the new diagnostic criteria created earlier this year by IOM. Basically, OI means that our bodies can't hold a steady blood pressure and/or heart rate when we are upright, especially when we stand but also just sitting up. OI contributes to all of the symptoms of ME/CFS: fatigue, headaches, achiness, pain, sleep dysfunction, exertion intolerance and more. The good news is that treating OI often results in dramatic improvement in all symptoms! This post explains what OI is, how it affects us, and some treatment options, including my sons' experiences with Florinef, a treatment that allowed them both to return to school full-time. This post is specifically about using beta blockers to treat OI, a treatment that has dramatically improved life for my older son and I, allowing us both to be much more active without crashing. As I said in the introduction, trial and error is critical here - there are over three dozen different types of beta blockers on the market, available in a wide range of doses - it often takes trying several at different doses (always starting with the lowest possible) to find the one that is best for you. Beta blockers have been particularly helpful to me in conjunction with using a heart rate monitor.

Treat Immune System Dysfunction
Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. The problem is that there aren't a lot of known ways to do this yet. ME/CFS is a mixed bag of immune dysfunction: parts of our immune systems are over-active and other parts are under-active. So the treatments typically used for autoimmune disease or for immune deficiencies don't usually work for us. We need to avoid both immune boosters and immune suppressors; instead we need to normalize or balance the immune system. Two simple and very inexpensive treatments have worked well for my son and I: low-dose naltrexone and Imunovir (generic name, inosine, sold as a supplement). Together, these two treatments (again, super cheap!) have dramatically improved our symptoms and quality of life. We have very few crashes anymore, and virally-induced crashes have almost disappeared completely. I almost never get sore throats or flu-like aches anymore, unless an infection is present.

Diagnose and Treat Underlying Infections
For many people, this aspect of treatment might need to come first, not last, especially if you have tried some of the above treatments and nothing seems to help you. Because our immune systems are dysfunctional and various infections are usually the triggers that start ME/CFS, almost all of us have some infections present that prevent us from improving. It is known that ME/CFS causes old, dormant viruses to reactivate, so it is very, very common for people with ME/CFS to have active viruses in our bloodstreams. One example is the Epstein-Barr Virus (EBV), the virus that causes mono (also known as glandular fever). By adulthood, over 95% of the population have been exposed to EBV, whether they had an active case of mono or not - it is a very common infectious agent. In most people, it is dormant and causes no symptoms, but since our immune system over-reacts to viruses, it is often reactivated in us, causing all sorts of problems, including sore throats, swollen glands, flu-like aches, and severe fatigue. There are many other viruses that can trigger ME/CFS to start or get reactivated by the immune dysfunction. The good news is that antivirals can help tremendously, sometimes even bringing on full recovery! The tricky part is that antivirals are very specific to the virus (unlike antibiotics), so the first step is getting tested for all sorts of common viruses (some to look for include EBV, HHV-6, CMV, and common types of enteroviruses) and then the doctor can choose the antivirals that work against your specific virus(es). Here's a summary of my own experience with antivirals - in my case, I had only low levels of EBV and HHV-6, so my improvement was correspondingly small. Typically, the higher the viral levels, the greater potential for improvement. If you know which infection triggered your ME/CFS to start (for instance, mono), then treating THAT infection can be particularly effective and even bring on full recovery - time is of the essence - the sooner, the better!

Another category of infectious agents that you should be evaluated for are tick infections. Lyme disease is a known trigger for ME/CFS, and I have met hundreds of people diagnosed with ME/CFS who turned out to have tick infections behind the scene, including my own son! He got steadily worse for 5 years before we finally found out that he had Lyme disease plus two other tick infections. He has been improving with treatment for those and is currently in college, working at his first part-time job, and enjoying a very active social life! If you have been tested for Lyme in the past and had a negative result, that means nothing. The tests only catch about 50-60% of Lyme cases and are very prone to false negatives. The only way to know for sure if you have tick infections is to be fully evaluated by a Lyme expert. This post explains why everyone with ME/CFS or FM should be evaluated for tick infections and includes a link for finding a Lyme expert near you.

Finally, my son and I have both struggled with yeast "infections" or overgrowth, and I am always amazed by just how much worse it makes us feel! Because of the particular type of immune dysfunction in ME/CFS, yeast overgrowth/candida/thrush is very, very common and can go undetected for years, while you gradually get worse and worse. This post explains how to diagnose yeast overgrowth and treatments that have helped us. Untreated, I feel exhausted and achy and can barely get off the couch (even with all these other treatments that have helped me); when the yeast overgrowth is treated and under control, I live a full, active life. The difference shocks me every time!

Treat Methylation
This is an area of treatment that we just learned about last year, but it has definitely helped us both. Methylation is almost always dysfunctional in people with ME/CFS and directly affects GI function, energy production, and mitochondrial function. This blog post explains what methylation is, with links to how to treat it.

Well, that was longer than I intended but provides a good roadmap to treating ME/CFS with currently available approaches. It can also help you to find the most critical blog posts I have written on treatment options, instead of wading through 9 years' of posts!

This just represents our own experiences - please share your own treatment successes in the comments section! What has worked for you?

Movie Monday 8/24

I was really in the mood for movies this week, so we watched two of them on Amazon Prime this weekend and enjoyed both.

I've been wanting to see The Way, which was a special project for Martin Sheen and his son, Emilio Estevez (who looks so much like his dad now!) They both star in it, and Emilio wrote and directed it. It's about a journey hiking along the Camino de Santiago, a pilgrimage route that cuts across northern Spain, starting in the Pryenees along the French border. One of my closest friends hiked the route for three weeks this spring, which is why I was so interested to see this movie (though I wanted to see the film even before she walked it). Martin Sheen plays Tom, a California ophthalmologist whose son dies while on the Camino. When Tom travels to France to collect his body, he impulsively decides to finish his son's quest to walk the Camino. Grieving and surly, he sets out on the walk, barely talking to the other pilgrims around him, stopping at hostels in tiny villages along the way. Gradually, though, he gets to know several other hikers, each with his or her own reason for walking the route: Joost, a jovial bear of a man from the Netherlands; Sarah, a Canadian woman with a hard. sarcastic edge; and Jack, an Irish writer with writer's block. Together, the four unlikely companions travel along the Camino and gradually get to know each other and become friends, as each works on his or her own internal demons. I loved this movie - yes, the scenery along the Camino is stunning, as I expected, but it is also a moving, funny, warm story about personal journeys and emotional growth. Very uplifting, though it did induce a hefty dose of Exercise Envy in me! I so wish I could backpack again or join my friend on the Camino myself.

Saturday, we chose a twisty, fast-paced crime caper with an all-star cast, Lucky Number Slevin. Josh Hartnett plays Slevin, a young man from Chicago visiting his friend, Nick, in New York City. Slevin is mugged on his way in and loses his wallet and then finds Nick's apartment empty. Next-door neighbor Lindsay (played by Lucy Lui) stops by and says she is worried about Nick because she hasn't seen him and she wants Slevin to join her as amateur detectives (she likes to watch old Columbo shows) to find their mutual friend. Before they can start investigating, though, a couple of thugs come by and pick up Slevin. They take him to The Boss, played by Morgan Freeman. Everyone thinks Slevin is Nick, who seems to owe The Boss a lot of money, and he can't prove otherwise without his wallet. A hit man named Mr. Goodkat, played by Bruce Willis, joins the fun...and that's just the beginning. The plot is complicated and twisting, though the tone remains somewhat light and tongue-in-cheek throughout. It starts to feel like a modern version of The Sting, though it takes a while to sort out just what the deal is and who's behind it (and why). It's all a lot of fun, the acting is great, and we didn't figure out all the twists and turns until the very end.

Have you seen any good movies lately?

Weekly Inspiration: 10 Minutes of Mindfulness

You might think that people with ME/CFS don't need help with doing nothing. It sometimes feels - especially when we are going through a bad flare-up - that we are always doing nothing, getting nothing accomplished. But are you really doing nothing? Is your mind ever truly still and quiet?


In this brief TED talk, monk and mindfulness expert Andy Puddicombe talks about taking 10 minutes out of your day to be still and mindful, to meditate and quiet your mind. He says taking even this small amount of time out of each day to be still can change your life:



I chose this talk today because being still and mindful is a huge weakness of mine. Even when my body needs to rest, my mind is almost always in full gear, speeding along at a hundred miles an hour: "I need to do this," "Better not forget that," "Oh, I have to remember that," etc. I tend to be very focused on being productive - being still is my Kryptonite!

Over the past 10 years or so, I have gotten very good at setting goals for myself - measurable, objective goals - and at meeting them (here are my health-related goals for 2013 and 2015). I've actually accomplished a lot of my goals...except for one. I always do dismally on my goal (on the list every year!) to spend at least 10 minutes a day meditating. I get so busy (in mind and sometimes body, too) that the day passes, and I never make time to just be still. When I do meditate, it is usually as a crutch to help myself fall asleep.

I suspect it is the same for many of us. Even on a crash day, when I need to rest, I am still usually reading or watching TV or (often) using my laptop while lying on the couch. Even worse, I am often trying to do several things at once. I know (though I have a hard time admitting it) that's not really resting. I do take time every afternoon to take a nap (bonus points for that?), but meditation is beneficial in addition to sleep.

So, how exactly do you take this advice to spend 10 minutes meditating or being mindful? I actually learned Transcendental Meditation (TM) when I was 16 years old (so I have no excuse!). My parents had both learned and so I did, too. If you've never learned before, here are some resources:

• Guide to Meditation for Beginners (includes step-by-step instructions) and also some links to relaxing music/nature sounds and guided meditations.
• Wiki-How: How to Meditate for Beginners with illustrations and step-by-step instructions
• 10 Essential Tips on Meditation for Beginners
• How to Meditate: A 10-Step Beginner's Guide

If you are struggling to relax when you try to meditate or can't seem to quiet your mind, you might want to start with some Guided Meditations - just look up "guided meditation" on a search engine and plenty of free audio/video options will come up.

As for me, I am going to take another stab at that goal of mine to meditate 10 minutes a day (and stop counting my nap as "meditation"!) I know how beneficial it is, and I know how much I need to learn to quiet my brain, so I will try again.

Please tell me about your experiences with meditation - or go and try it and report back!

Finding Joy in Every Day

This summer, I began writing articles for the ProHealth website (an excellent source of information on all aspects of our illnesses), for their Inspirational Corner. This was my first article for them, and it was published on July 6, 2015: Finding Joy in Every Day (reprinted here with their permission):

Finding Joy in Every Day

Life with chronic illness is always challenging, but I have discovered some silver linings since I got sick with ME/CFS 13 years ago and my sons followed suit 2 years later. Although I've always been an upbeat person, ME/CFS has made me more acutely aware of how important it is to find joys in my everyday life, even when things seem bleak. I’m not always able to do the big things that used to bring me joy – like vacations, long hikes, backpacking, or lots of socializing – but I have learned that ordinary life holds many extraordinary moments of small joys.

           

During a particularly difficult period in my early years of illness, I began keeping a Joy Journal (I picked a journal covered in polka dots which was, in itself joyful!). At the end of each day, I jotted down things that had brought me joy that day. Sometimes, after a bad day, I had to really think hard to come up with things to write in it, but I began to realize that there were plenty of good things and small joys in my daily life, despite the boys and I being so sick.

           

Many of the things I wrote about were simple - singing a favorite song in the car with the top down, seeing a bright splash of colorful flowers in spring, or playing a game with my kids. I gradually began to recognize these small moments of joy. Some excerpts from my Joy Journal during those early days included:

·      Cuddling with my son’s soft little stuffed dog, Snowy, and being reminded of his love and generosity in lending him to me

·      The air smells so deliciously sweet this morning – fresh, warm, springtime air

·      Watching old home movies of the boys when they were so young. My heart fills with joy when I see my 2-year old in his lion costume calling out, “Twick or tweet! I’m a lion!”

·      My morning cup of Orange-Tangerine Zinger tea

·      Sunshine!

·      Listening to music – the rhythms and harmonies of Ladysmith Black Mambazo

·      Seeing a shooting star!

·      A roaring fire in the fireplace on a cold, wet, gray day

·      Watching a movie with my husband and kids in the family room

·      Being outdoors

·      The bright, eye-popping yellow of forsythia in bloom – it’s literally breath-taking! I feel happy just looking at that bright splash of color.

·      Eating – and really savoring – good food with a variety of flavors, made with fresh ingredients, like the crab cakes soaked in lemon I had for dinner.

·      Lying in my warm, comfy bed at night reading a good book.

As you can see, none of these things I wrote down were all that unusual – they were tiny moments of joy in a very ordinary, quite limited life spent mostly at home. At the beginning of my illness, when I was struggling with depression and acceptance of my new life, these moments of joy were still there, but I wasn’t noticing them. Writing in the Joy Journal each night helped me to recognize that these ordinary joys were still there, and that my life was indeed still joyful and happy in many ways.

Once I recognized joy, I was also able to make sure I had more joyful moments in my every day life. I noticed in my journal that being outdoors always lifted my spirits, so I made a special effort to get out at least once a day, even if that just meant lying in a reclining chair out on my deck and looking at the clouds. My kids were often a source of joy, so I tried to give them my full attention more often – to focus on watching a video or playing a game with them, instead of always being distracted by things I needed to get done. I made myself a Feel Good playlist so that I could listen to music that lifted my spirits when I was having a bad day (just try staying in a bad mood while belting out “I Will Survive” by Gloria Gaynor or “Happy” by Pharrell Williams).

I don't write in the journal every day anymore, but it's still there to remind me of the joy that is all around me. When I have a rough day or things get bad, I read past entries and resume my habit of writing down joys at the end of the day, and it always helps to lift my spirits.

Recognizing the joys in my life helped me to experience more of them. It’s a self-perpetuating thing – the more you acknowledge the joys in your life, the more joy you have. Take a look at your own life. Keep a Joy Journal or a diary of what you are grateful for so that you can learn to recognize what makes you happy. Every life – even a restricted life of chronic illness – contains many small moments of joy. Identify those moments of joy and celebrate them every day.

Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com.  You can read all of her blog posts on Joy at http://livewithcfs.blogspot.com/search/label/Joy.

Top ME/CFS Experts Join Forces to Define Diagnosis

Here's some exciting news announced in a recent press release: Dr. Suzanne Vernon and Dr. Lucinda Bateman are teaming up to develop specific diagnostic tools for ME/CFS. They will start with the newly written IOM diagnostic criteria (which Bateman helped to develop) and then test and refine and quantify that criteria, with the ultimate goal being to end up with diagnostic tools and tests that any mainstream doctor can use to diagnose ME/CFS/SEID.

Estimates from population studies indicate that anywhere from 80 - 90% of people with ME/CFS remain undiagnosed (which also means they are without proper treatment), and most mainstream medical professionals are unable to recognize ME/CFS in their patients. This expert team aims to change that!

Dr. Vernon has a PhD in Virology and previously served as the Scientific Director for the Solve ME/CFS Initiative where she directed many dozens of excellent research projects for all aspects of ME/CFS.

Dr. Lucinda Bateman is a well-respected ME/CFS researcher and clinician who has helped many thousands of patients for over 25 years.

Together, they are a powerful team with a much-needed objective. This is great news! Can you imagine a future where someone gets sick with ME/CFS, goes to their own primary care doctor and is accurately diagnosed right away instead of enduring years of visits to specialists without any answers? It's coming.

Movie Monday 8/10

Although we have been busy catching up on our favorite TV shows (so many good shows on all at once this summer!), we took a break on Friday evening to watch a movie:

We watched This Is Where I Leave You, a movie I've been dying to see because I loved the book it was based on (same title by author Jonathon Tropper, a favorite of mine) - you can read my book review here. Jason Bateman stars as Judd, a man who is in the midst of a painful divorce and has just lost his job when his sister (played by Tina Fey) calls to tell him their father has died. His last request was that all four siblings sit shiva with their mom (played by Jane Fonda), so the four adults reluctantly settle into their childhood home for seven long days together. They are the definition of dysfunctional, a family known for their emotional distance. As always, they deal with this latest event by trading wise-cracking banter and quips. Judd doesn't tell anyone about his recent set-backs, and he's not the only one in the family hiding secrets.

I was delighted to find that the movie adaptation sticks quite close to the book (with the exception of taking out the birthday cake scene at the beginning which was the BEST!). The tone is perfectly recreated in the movie - both hilariously, laugh-out-loud funny but also warm and thoughtful. It's a very funny, uplifting story about family with an all-star cast, and we both enjoyed it very much.

Have you seen any good movies lately?

If you are also interested in what we've been reading, check out the Monday post at my book blog.

Weekly Inspiration 8/9: Everyone Has Challenges

It's been a while since I've been home and able to write a Weekly Inspiration post, so this one is long overdue. I read a lot of books over the past difficult, busy months, so today's inspiration comes from a moving, funny novel that I really enjoyed.

The novel is The Unlikely Pilgrimage of Harold Fry by Rachel Joyce, about a man who hears an old friend is dying of cancer. Harold sets out to mail her a letter and instead just starts walking and decides to walk the whole length of England to deliver his letter to her in person. His journey becomes a quest both physical and emotional. Along the way, he slowly examines feelings and memories long-buried. He also meets a lot of different people along the way. You can read my full review (no spoilers) at my book blog.

Here are two passages that I loved, about how you can never know what another person is dealing with when you first meet them or pass them on the street:

"The silver-haired gentleman was in truth nothing like the man Harold had first imagined him to be. He was a chap like himself, with a unique pain; and yet there would be no knowing that if you passed him on the street, or sat opposite him in a cafe... It must be the same all over England. People were buying milk, or filling their cars with petrol, or even posting letters. And what no one else knew was the appalling weight of the thing they were carrying inside. The inhuman effort it took sometimes to be normal, and a part of things that appeared both easy and everyday. The loneliness of that."

"He had learned that it was the smallness of people that filled him with wonder and tenderness, and the loneliness of that, too. The world was made up of people putting one foot in front of the other; and a life might appear ordinary simply because the person living it had been doing so for a long time. Harold could no longer pass a stranger without acknowledging the truth that everyone was the same, and also unique; and that this was the dilemma of being human."

          - The Unlikely Pilgrimage of Harold Fry by Rachel Joyce

I really related to these passages because I had these very same insights during the first years after becoming ill. One thing that living with chronic illness taught me was that everyone in the world was dealing with their own challenges and pains, whether physical or emotional, and that those issues were almost always invisible to the people you interact with every day. ME/CFS isn't the only invisible illness or invisible pain.

I have been surprised over and over through the years to discover that other people were dealing with invisible challenges just like I was: the mom I started chatting with on the soccer sidelines who turned out to have a chronic illness and a teen daughter who was also chronically ill (my own ill teen son sitting next to me at the time), the friend whom I discovered had been quietly struggling with depression her entire life, the woman I met at a book discussion whose husband had been in a terrible accident and was still recovering, the online friend who also lost a parent recently and reached out to me in my grief. It goes on and on.

Learning that everyone in the world has their own hidden challenges and sorrows (and living with my own) has had a transformative effect on me. Living with chronic illness has made me a more compassionate person. Like Harold, I've learned not to judge the people I meet, that we are all the same, doing our best to move through life and deal with our own challenges, whatever those might be.

Has chronic illness changed the way you see other people? What are your own experiences of discovering that others are dealing with their own invisible problems? Do you agree with Harold?

Senate Proposes Cutting All ME/CFS Funding

The House and the Senate both have Appropriations Committees that have made specific funding recommendations for all government programs. In a stunning move, the Senate committee has recommended cutting all funding (what little we had) for ME/CFS.

These are just preliminary recommendations that still have to be voted on by both houses of Congress, but it's an alarming proposal for the 1 - 2 million adults in the U.S. with ME/CFS/SEID (not to mention the uncounted children and teens). The process is all very complicated (as is everything in the government), but as usual, Jennie at Occupy CFS explains it clearly and lays out exactly what has happened and what happens next.

ME/CFS has been SEVERELY underfunded to begin with, with only $5 million total designated by the CDC, which amounts to only $5 per patient.

Jennie makes the point that that measly $5 million has been poorly spent in the past on efforts to encourage the use of GET and CBT as "treatments" and the CDC's misguided Toolbox and that the CDC has not done much for us anyway. You can read her full opinion at that link above (which I fully respect - she is an amazing advocate!).

On the other hand, I believe that removing ME/CFS completely from the budget sends a dangerous message, that our illness is trivial and doesn't need any funding.

Solve ME/CFS agrees and believes we should send letters to key members of the Senate, asking them to reinstate ME/CFS funding. They have provided a link here for an easy-to-download letter that can be customized to describe your experiences and e-mailed. The whole process only takes a couple of minutes. Time is short, so if you want to ask the Senate to not stop funding ME/CFS, then you should go to that link and send your letters right away.

While you are at it, there are some other advocacy efforts you can make from your couch or bed. Jennie lists several upcoming opportunities to have your voice heard, including public comment at this month's CFSAC meeting, a petition to sign, and other opportunities. All have deadlines quickly approaching, so head over there now to help.

Movie Tuesday 8/4

Trying to get back into my normal routines but still running a bit behind, so...it's Movie Monday on Tuesday!

My husband and I watched one movie this weekend, amid catching up on all our favorite TV shows:

On Friday, we stopped at the library and took out Under the Skin, starring Scarlett Johansson. There is no way around it - this is one weird movie, but it kind of grew on us. It's about an alien lifeform that assumes the form of a beautiful human female (played by Johansson) in order to prey on human males. It's a bit confusing at first, but as Scarlett goes out into the Scottish city again and again to look for just the right victims (not exactly sure what her criteria was), we got the general idea. At some point, though, she (it) becomes more curious about what it is like to be a human and sets out to explore her (its) feminine side. There is very little explanation or dialogue in the movie, other than Scarlett's flirty chats with her potential victims, and the whole thing feels rather...well, otherworldly, which I suppose is what they were going for. Like I said, it kind of grew on us - we started out mostly confused and thinking "what the...?" It feels a bit repetitive in the first half, with her predatory forays into the night, but it gets far more varied and interesting as she explores the human experience. The scene where she experiences sex for the first time was my favorite - perfect and hilarious and just what an alien might think in that situation! Speaking of sex, there is a lot of nudity in this movie ("graphic nudity" as the ratings say, because it is males rather than females, for the most part), just so you are forewarned. Under the Skin garnered very high ratings from both critics and regular viewers and is a must-see for sci-fi fans, though if you prefer your movies realistic and straightforward, you might want to skip this one.

Have you seen any good movies lately?

Dr. Rowe's Webinar and Q&A on ME/CFS

Dr. Peter Rowe is a renowned ME/CFS doctor and researcher and the only doctor in the U.S. specializing in pediatric ME/CFS since Dr. Bell's retirement. Dr. Rowe is also the first doctor who noticed and documented the presence of Orthostatic Intolerance (OI) in ME/CFS and began treating patients for OI, with often dramatic improvements in their overall functioning resulting.

As you can tell, I am a big fan - although he's not been able to take on new patients (except for those participating in his studies) for many years now, he has helped our family immensely by working with me and with our doctor via e-mail and phone. He spent hours on the phone with our pediatrician when our boys first got sick, teaching her all about OI and how to treat it, until she felt comfortable treating our sons. Treating OI was miraculous for both of them - got them each back to school full-time! - and it has also helped me to greatly improve my function and stamina.

Dr. Rowe recently did a webinar for Solve ME/CFS that you can watch here:



He also answered some questions afterward, and you can read his Q&A's here (Part 1) and here (Part 2). All of it is very informative and helpful to ME/CFS patients.

If you are wondering whether this applies to you, studies show that over 97% of those with ME/CFS have some form of OI...so, yes, it does apply to you!

Addendum 8/19: Solve ME/CFS has added two more Q&A sections from questions gathered after Dr. Rowe's webinar: Part 3 and Part 4.

Two Essays on Living with Chronic Illness

I'm back, finally, after a very long and difficult month. My dad went into hospice this month after a year-long battle with melanoma and passed away two weeks ago. We have been away most of the month - by his side in hospice, on a vacation planned long ago, and back in Rochester again for his memorial service this week.

So, now we are trying to return to normal life (or as normal as our life gets, as my husband says!). We came back home to car repairs, appliance repairs, college tuition due, and a host of other urgent matters to take care of.

While I catch up and try to to get back into a more normal routine, I thought I'd share two recent essays of mine on chronic illness that were published while we were away this month:

The website Mamalode published my essay 5 Things I've Learned From Living with Chronic Illness in early July. Please take a look and share it with your friends and family - it's a positive perspective on this crazy life we all lead, but it is also applicable to healthy people, too. Everyone can benefit from slowing down, simplifying, and finding more joy in the little things.

Last week, the ProHealth website (which I highly recommend for up-to-date and accurate information on our illnesses) published my essay Riding the Chronic Illness Roller Coaster, about the emotional ups and downs of living with chronic illness and how to cope during the difficult times. It's a topic I have often written about here on my blog that we all struggle with, whether we've been sick for 1 year or 20 years.

I would love to know what you think about either of these topics - you can leave comments on either website or right here on the blog.

And I hope to get back to regular blog posts soon, once I get all this urgent stuff taken care of!

New Essay on Chronic Illness Published

Sorry I have been absent from the blog for a while. My dad just passed away this week, and we spent a week by his side in hospice in my hometown (Rochester, NY). I won't be posting here much for another week or so, as we will be traveling a lot and going to the service. My dad fought a brave battle against melanoma, and we are grateful that we had a full year with him after his diagnosis and spent many weekends together. It's still hard to believe he is gone.

On a lighter note, my essay, 5 Things I've Learned From Living with Chronic Illness, was published on Mamalode this month - it describes some of the silver linings of our family's illnesses, a positive view of this crazy life we all lead! Hope you will check it out. I'd love to hear what you think.

I'll be back to blogging regularly when things settle down a bit.

Dad and I dancing at my wedding

Weekly Inspiration 7/5: Living Beyond Limits

Amy Purdy, who lost both her legs and her kidneys and spleen to meningitis at 19, starts out this inspiring TED talk with this thought-provoking question:


"If your life were a book and you were the author, how would you want your story to go?"

From there, she describes her own experiences in this emotional, heart-wrenching, funny talk, from her hospital bed to becoming a professional snowboarder and Dancing with the Stars competitor. She focuses on using her imagination to overcome her limits in new and unique ways. Check out her brief but inspiring talk:



Although our situations with ME/CFS are very different than hers, there are plenty of parallels, and her positive, can-do attitude is inspirational.

When I think about her key question, above, my answer is, of course, that I would like a happy ending to my story; I would like to be victorious over my limitations, as she has been.

For me, personally, this comes down to two main strategies that I have taken with my illness and my life:

• Find joy in every day.
• Never stop trying to get better - trying new treatments, keeping up on new research, working as I can to strengthen myself and improve my quality of life.

Essentially, I feel it is important to always keep striving for answers and improvements, while also enjoying life right now as well as I can, in light of my current restrictions.

How about you? "If your life were a book and you were the author, how would you want your story to go?"

Update & Stress

I just realized I haven't posted anything here in a week and a half, so I thought it was time for a quick update.

I've mentioned before that my dad has been battling stage 4 melanoma for the past year, and things have worsened considerably the past month or so. The cancer has now spread to his brain and the spots on his liver are affecting his digestive tract. He's been hospitalized twice in the past two weeks, and we went to visit him last weekend, during his brief time at home (which all explains where I've been).

We had a good weekend with him, though he was horribly weak and frail. Still, we made the best of it and enjoyed a card game, watching old home movies together, and enticing his appetite back with some of his favorite foods. Unfortunately, he was back in the hospital just 24 hours after we left, with swelling in his brain. My sister is there with him now, and we are back at home, anxiously waiting for news.

So, yeah, a lot of stress...and you know what that means when you have ME/CFS. I've been doing OK, but my symptoms are flared up a bit today, and I am just feeling run-down and worn out. Besides worrying and waiting for an update, I am anticipating additional trips there (about a 7-hour drive away), probably last-minute and unplanned. We have some limited vacation plans this month, so I'm a bit worried about that, too, though we'll actually be traveling within NY state, not too far from where he lives.

That's where I've been! Sorry for the blog silence - I will try to get back to posting more regularly.