Friday, August 28, 2015

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?


Monday, August 24, 2015

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?

Sunday, August 23, 2015

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:
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!





Friday, August 21, 2015

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.

Monday, August 17, 2015

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.

Monday, August 10, 2015

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.


Sunday, August 09, 2015

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?

Saturday, August 08, 2015

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.


Tuesday, August 04, 2015

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?

Monday, August 03, 2015

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.

Thursday, July 30, 2015

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!

Saturday, July 18, 2015

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

Sunday, July 05, 2015

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?"

Wednesday, July 01, 2015

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.

Monday, June 22, 2015

Movie Monday 6/22

We had a very quiet weekend here, just my husband and I most of the time. We enjoyed a movie Saturday night on DVD:

Arthur Newman is about one of the oddest road trips you will ever see! Wallace Avery, played by Colin Firth, has hit bottom. He's divorced, his teen son wants nothing to do with him, and now he's lost his job. Even his girlfriend seems to barely tolerate him. So, he does what anyone would do - he gets himself a new identity and leaves town to start a new life. On his first night on the road, he meets a woman who's been arrested for stealing a car and has overdosed on something. Mike, played by Emily Blunt, seems to be very different from Wallace (now Arthur), but they begin to travel together and gradually come to realize they have a lot in common. They go on a wild rampage together, on their way to Arthur's job interview. It's a warm, funny movie that starts out sad but is ultimately hopeful and optimistic. We both enjoyed it very much.

Have you seen any good movies lately?

Sunday, June 21, 2015

A Tribute to My Dad for Father's Day

One of my earliest memories is when, at four years old, I ran out to the breezeway and greeted the kind man my mother was dating with, “Are you going to be my Daddy?” I somehow knew even then that he was the perfect father for me, and he officially became my father when my parents got married a short time later.

He’s not my biological father, but that has never mattered to either him or me. He officially adopted me when I was five years old, and he’s been my dad ever since. He is still one of the kindest, most loving men I’ve ever known, and I couldn’t have chosen a better father.
             
Even back in the 70’s and 80’s – before it was common for fathers – he always took an active role in the lives of me and my sister. We did a lot of things together as a family: camping, hiking, and our annual vacation at the beach. On Saturday nights, we played games together in front of our fireplace. My dad was the champ at Parcheesi and never would have let us win on purpose. He was always fair-minded and kind.
             
He was just as kind to my friends, greeting them by name when he came home from work and always taking an interest in what I was doing. Whenever he came home and saw my best friend, Michelle (which was almost every day), he would say teasingly, “Oh, no! It’s Michelle!” and she’d erupt in a fit of giggles. She knew, just like I did, that he genuinely liked me and my friends. He had a great sense of humor. He even put up with my annual slumber party of screaming little girls in the basement!
             
Dad didn’t just get involved in my life; he involved me in his, too. He was in the trucking industry, and for a while when I was a kid, he had his own business and small truck, making deliveries to local stores and businesses. When I had a day off from school, he’d take me along with him for what he called “pick-em-ups and deliveries.” I rode around town beside him in the red truck, and we’d stop for donuts and lunch. I felt so special sitting next to him, especially when he introduced me to his regular customers.
             
Besides all the day-to-day fun we had together, my dad was always there for special events. We were a family that celebrated everything, and he came to every dance recital and school function, usually with his movie camera. He always let me know that he was proud of me.
             
At my wedding, Dad and I danced together. I chose one of his favorite songs, “Through the Years” by Kenny Rogers, and its lyrics were perfect for our relationship. My family and friends gathered in a big circle around us, and most of them were crying! Dad and I thought that was funny, as we enjoyed our dance together.
             
When my husband and I became parents ourselves, my dad became Grandpa. He was just as loving and kind with our two sons as he had been with me and my sister. From the time they were little, he has always been actively involved with them, playing with them on the floor or outside, playing games together with the whole family, and letting them know he loved them.
             
Last summer, my dad was diagnosed with melanoma, now stage 4. He’s had surgeries, radiation, and immunotherapy, and this past year has been a struggle. My sons, both busy teenagers now, will still drop everything to go visit him and Grandma (a day’s drive away). They play cards with him or watch TV or a movie, and they love his sense of humor. It means so much to me that they love Grandpa just as much I do.
             
Our relationship began in a loving way when he not only accepted me as his daughter but treated me no differently than my sister, his biological daughter. It has only grown stronger over the years. From my dad’s example, I learned patience, kindness, and tolerance. I have come to recognize and appreciate his influence more the older I get. I feel so fortunate to have him as my father, and he’s taught me a lot about being a parent myself.

Friday, June 19, 2015

Social Exhaustion in ME/CFS

I love my extended family - but a weekend together is a marathon for me!
I've been thinking about how exactly to describe this bizarre thing where just being with other people can totally wipe me out...I guess "social exhaustion" is as good as any description, though it's still not quite accurate.

I experienced this horrible, bizarre aspect of ME/CFS again last weekend. My mom and her husband came for the weekend. I had invited them - in fact, encouraged them - to come, and I really enjoyed having them here. We had a great weekend - my sons were both home, we watched old home moves, played games, had some great meals, and talked and laughed a lot. All in all, it was a lovely weekend with family.

Except...that I was totally exhausted by dinnertime Saturday - wiped out, worn out, barely keeping my head up, frazzled, and wrecked. I tried to be polite for a while. I really wanted to play a game while everyone was here (I love games!) or watch more of our home movies, but I was just...so...tired. I finally gave up at 9 pm and went upstairs to bed, while everyone else (including my kids!) stayed up well past midnight.

Getting up to my room and into bed was such a huge relief! Lying down flat in a completely quiet room and reading my book felt so good. I think my mom was a bit put out the next morning, when she asked me why my light was still on an hour later. Even after 13 years, she tends to take it personally when I need a break or can't manage being with everyone any more. I don't blame her - it's a hard thing for anyone to understand, how being with people you love could be harmful.

It feels like some of it is energy depletion - no different than doing too much physically - and some of it is over-stimulation. The noise of being with other people, the chaos of a large group (or even a small group), trying to keep track of conversations going on - it all results in just too much for my mind to process. Even a quiet, brief gathering like my book group has this effect on me. How can sitting in my neighbor's comfortable living room discussing a good book for 2 hours with friends be too much for me? I don't know, but when I get home from book group, I am feeling so over-stimulated ("wired but tired") that I have to take a half Ambien in order to get to sleep (which I rarely need any more). I needed to read for awhile this weekend after I went up to bed - to give my brain some time to calm down and recover, to soothe my frazzled nerves..

My beloved neighborhood book group with author Rachel Simon

I think this is part of why I love our camping trips so much and find being outdoors so rejuvenating. Having just the four of us together, with no phone or TV or computer, is soothing, quiet, and easy for me to manage. The natural world - clouds, trees and flowers, breezes - is naturally soothing and a balm from the usually over-stimulating modern world.

Energy-wise, my body reacts to being in a social gathering much the same way it reacts to physical exertion - too much and I crash. It's over-exertion of a different kind, but with the same effect.

All of this is hard for me to accept because I am naturally a very social person. I love being with people, talking with friends or being with family. I had a lot of friends in high school, was president of my sorority in college, and quite the party girl throughout school and into my 20's. I was always the one to organize an outing or a party, the one to want to stay out later, invite more people, keep going. I used to love to host gatherings at our house. Even now, it's hard to accept that something I enjoy so much could have such a negative effect on me.

Fortunately, with all of the improvements I've made over the past 10 years or so, my ability to tolerate social situations has improved, too. I love seeing my friends or going to my book group or, yes, spending time with my family. But my body tells me when it is too much. I usually limit myself to one major social event per week (and yes, going to a book group counts as "major"!). Sometimes, I can manage a second social outing, especially if it's just being with a couple of close friends. I know when I've hit my limits - and my close friends can tell, too! I've been told I visibly droop when I've had too much social interaction, sliding down further and further into my seat.

When I've had too much - like happened this weekend - it is such a relief when I am finally by myself, in quiet solitude. Just a normal Sunday wipes me out this way, with my college son and father-in-law coming over for dinner and everyone home from school and work. I love having everyone together, but by the end of the day, I've had enough. Monday morning - waking up to a quiet house, all alone - is like a soothing balm to my exhausted mind and body. I can recover from social exhaustion pretty well now, but I need that soothing quiet time with no stimulation. It's vital to my well-being.

Is it the same for you? Do you get over-stimulated and wiped out even from the most pleasant social interactions? How do you cope?

Monday, June 15, 2015

Movie Monday 6/15

We had a really hectic, busy week so not a lot of time for movies. My mom and her husband came to visit this weekend, and I gave her a set of DVDs containing all of our home movies from when I was a kid (I had them converted from the old 8 mm films recently). So, we had a lot of fun watching old home movies on Friday night! I never get tired of them and love seeing so many family members who are now gone.

My husband and I did watch one movie last week on Thursday evening, The Theory of Everything, the biographical movie about Stephen Hawking's early life. Hawking is the famed physicist with ALS (Lou Gehrig's Disease) who wrote A Brief History of Time. Actor Eddie Redmayne did an amazing job of capturing Hawking in each stage of his illness. As the movie opens, Hawking is a carefree graduate student with a great sense of humor at Cambridge, impressing his professors and fellow students with his intelligence and insights. He meets and falls in love with Jane, an Arts major, but before their relationship can progress very far, Stephen's clumsiness becomes more serious, and he is diagnosed with ALS, a damaging and progressive disease, and given two years to live. Jane loves him, though, and they get married in spite of his prognosis. He continues to work (and amaze the experts in his field with his breakthrough theories), and he and Jane have a baby. As Stephen's illness progresses, Jane has to become his nurse as well as his wife. The movie follows him and their relationship through several decades (it's no spoiler to say that he beat his dire prognosis, since he is still alive today, 50 years later!). We both enjoyed this fascinating look into Hawking's inner life. What he has accomplished in spite of his severe and ever-worsening disability is absolutely incredible and very inspiring.

Have you seen any good movies lately?

Sunday, June 14, 2015

Weekly Inspiration - Acceptance


This week I thought I'd combine my newer Weekly Inspiration feature with my old Quote It Saturday feature (though today is Sunday) and get our inspiration from two quotes from one of my all-time favorite books, Life After Life by Kate Atkinson (review at the link - no spoilers). I only just read this book in January, but I absolutely loved it, and it immediately rose to the top of my favorites list!

In the novel, Ursula relives her life over and over again (I love that kind of plot), and each time she dies (and she dies a LOT), she starts over again, being born in 1910. She's only aware of these many lives in a hazy sort of deja vu way, but, as you can imagine, this kind of experience makes her somewhat philosophical. Here are two of my favorite quotes/thoughts from Ursula:

"'Amor Fati,'" Ursula said. "Nietzsche wrote about it all the time..."

'Love of fate?'

'It means acceptance. Whatever happens to you, embrace it, the good and the bad equally. Death is just one more thing to be embraced, I suppose.'
          - Ursula in Life After Life by Kate Atkinson

"Life wasn't about becoming, was it? It was about being. Dr. Kellet [her therapist] would have approved this thought. And everything was ephemeral, yet everything was eternal, she thought sleepily."
         - Ursula in Life After Life by Kate Atkinson

I like the Nietzsche concept (perhaps I should read some of his books), and I thought it applied perfectly to life with chronic illness. Stuff happens - in every life - and if you want to be happy, you need to accept what happens, embrace it, and learn to live with it. I think the second quote is a similar concept - to focus on being, rather than becoming. Live in the moment because each moment is fleeting. We can't live our lives waiting for what is coming or we will miss everything.

If you are looking for some great summer reading, I highly recommend Life After Life and also the companion novel Atkinson just published in May, A God in Ruins, about Ursula's brother, Teddy (no, he doesn't relive his life, but there are still some surprises). I just finished that one, so I will try to post a review this week.

(And, by the way, both books are over 400 pages so qualify for my Big Book Summer Challenge, so if you plan to read one of them - or another big book - this summer, sign up for the reading challenge and join the fun!)

What do you think about these quotes? About acceptance? About being rather than becoming?

Hope you are enjoying the weekend!

Monday, June 08, 2015

Movie Monday 6/8

We took a mini vacation last week, camping at Shenandoah National Park, but it was cool, rainy, and very foggy the entire time. So, we escaped into town in the evening and went to the movies! The theater in Luray, VA, was hot pink on the outside and had about 8 tiny theaters inside. Ours had about 6 rows of seats and a screen not much bigger than the TV at my mom's house! In this photo, the suits of armor on either side were life-sized, so the screen was only about 5-6 feet high.

Our tiny movie theater - we had it all to ourselves!

After much deliberation, we saw Poltergeist in the tiny theater. We just shared the original Poltergeist with our sons last summer, and they really wanted to see the new version. I had my doubts since the original is so great, but I have to admit, they did a good job with the remake. It follows the same basic story as the original (what? you've never seen it?)...a family moves into a house in a suburban neighborhood and soon finds out that it is haunted by a poltergeist. As with the first movie, the little girl is the main target (and is just as adorable), and in the remake, she begins talking to these "imaginary friends" as soon as they move in. Things escalate quickly from there, until the family calls in the supernatural experts. As with the original, the movie is very well-done, not strictly horror because of the in-depth plot and good acting, though it is plenty scary with some jump-in-your-seats moments. They did a nice job of updating the story by using modern technology, including cell phones, tablets, and a drone camera that is able to show the audience what is happening behind the scenes in the supernatural world. We all enjoyed this very good update of an old favorite, but you might want to pass it up if you don't manage suspense well!

Once we got back home (a day early!) and the kids both took off with their friends, my husband and I got a DVD on Friday night - we finally got to see Mockingjay, Part 1. We both read - and loved -  the entire series (The Hunger Games by Suzanne Collins) and have been wanting to see this latest movie adaptation for a while. I have to admit, I did not have a great attitude going into it because I was annoyed that Hollywood had taken a relatively short book and turned it into 2 movies. But, this excellent adaptation quickly won me over. If you are familiar with the basics of the earlier books/movies (a future world pits children and teens against each other in an annual to-the-death contest that is like reality TV on steroids), this last portion (well, part 1) of the story continues after the latest Hunger Games has ended. Panem (what is left of the US) has degenerated into war, with the Districts beginning to revolt against the Capitol. Katniss is at the center of the action, with a group of revolutionaries wanting to use her in a propaganda campaign to convince the Districts to join the revolt. I was blown away by everything about the movie - it was all so well-done. As with the first two movies in the series, it featured great acting, excellent scripts, lots of action, and amazing special effects. I was brought to tears at one point. If you haven't experienced this series yet, you are missing out! The books were top-notch - The Hunger Games, Catching Fire, and Mockingjay (reviews at the links - no spoilers) - and the movie adaptation have been excellent.

Have you seen any good movies lately?


Monday, June 01, 2015

Movie Monday 6/1

My husband and I actually considered going to the movie theater this weekend, but between the cost and the challenges of fitting it into my nap/meal schedule, we decided to use a promo code for a free DVD from Redbox instead. It's nice to see a movie on the big screen once in a while, but it's also very nice to watch it while horizontal on my couch, with herbal tea and dark chocolate by my side and the ability to take bathroom breaks without missing anything!

We watched Nightcrawler, a movie that our college son had recommended. It stars Jake Gyllenhaal in his creepiest role ever! He plays Lou Bloom, an enthusiastic thief always on the lookout for a new opportunity. One night, while cruising around LA, he encounters a horrible car accident and witnesses a freelance videographer (a "nightcrawler") shooting footage to sell to a local TV news station. He steals a bike and heads to a pawn shop to buy a police scanner and video camera, then hires a desperate young man as his assistant, and he's in business. Right from the start, he is breaking the rules and crossing professional lines in order to get the most gruesome shots possible, and he finds a good customer in Nina, played by Rene Russo, a local TV news producer looking to move her career forward who has no compunction about running Lou's grisly footage. Things escalate as Lou seeks to get more and more cutting-edge crime scene photos, and he even begins to modify the scenes to get better shots, until he finally crosses the line and puts people in danger. The key to this movie is Gyllanhaal himself, who is just so creepy, with his wide-open eyes, sly grin, and overly earnest manner. It's a unique and suspenseful drama with plenty of action that we both enjoyed.

Have you seen any good movies lately?

Tuesday, May 26, 2015

Depression in ME/CFS - Emotional or Physical?

Image: jeffreymasson.wordpress.com
Despite the lovely holiday weekend I spent relaxing with my husband, I felt worse and worse as the weekend went on. By Monday, I was a total mess - feeling horribly depressed, crying at the drop of a hat, drowning in feelings of frustration, failure, and abandonment.

This happens to me once in a while - fairly rarely, thank goodness. As I explained in an old blog post, A Life of Contentment with Pockets of Despair, 9 years ago (!), I am generally a very happy, upbeat person. It's not an act or an attempt to "think positive" -  I really do feel happy most of the time and am generally very content with my life. I work hard, I love my family and friends, and I do my best to enjoy life, in spite of this nasty illness.

But sometimes, like this weekend and the bout of depression I wrote about in that old post, despair just hits me like a wave and knocks me down. I wonder how much of it is emotional and how much is physiological. I've noticed before that depression sometimes precedes a bad crash (hasn't happened in a while, thank goodness). This weekend, I took a long (for me) walk with my husband on Sunday morning and was in bad shape emotionally the next day. Could it have been "just" a part of a post-exertional crash? I think that would be even more depressing!

Emotionally, I am feeling overwhelmed and several things seemed to converge at once last week: our finances are super-tight (again) due mostly to our high medical expenses and college bills are growing; our extended family wants to go on an expensive vacation - a "free" trip that will end up costing us more than we can afford; my husband and I planned a solo vacation week for July because our sons no longer want to go on vacation with us - this new development has caused us both great pain; an article I wrote for a website was accepted for publication...and then they told me they no longer pay writers (also feeds into the financial pressures, of course, because I feel so guilty about not being able to contribute to our income); and, as always, ME/CFS is the ever-present storm cloud, affecting every moment of every day.

Most of the time, I am happy and content with the life I have created from this illness and I certainly recognize how fortunate I have been (though it's not just luck - it's taken a lot of hard work) to find treatments that have helped me to feel better and be more active. Sometimes, though, living in a prison of restrictions and limits gets to me. I just want to be able to enjoy a glass of wine with my husband, have a dessert when we go out to dinner, hike for as long as I want without constantly watching both the clock and my heart rate monitor. I feel like a ticking time bomb when I am out. My life is made up of a tightly monitored routine, with restrictions everywhere I turn: don't eat that, don't drink that, rest now, watch your heart rate, etc. I recognize intellectually that it is those very limits that allow me to live more freely than many people with ME/CFS - I feel better because I am so disciplined about sticking with my routine and my restrictions. But some days, I just want to throw it all out the window and be free!

Well, I feel a little better just having someone to talk to (assuming anyone is reading this!). I am just slightly better today - haven't cried yet this morning, anyway (oh shoot - never mind that last part).

I would love to hear from all of you - do you experience these sudden bouts of depression after periods of coping well? Does it seem to be linked with a physical crash for you? How do you maintain a healthy state of mind in the face of a life filled with restrictions?

I know I am usually the one feeling happy and cheerful and encouraging others to find the joy in life...but right now, I could really use some help myself.