Post-Event Crash

As most of you know, I have generally been better in recent years, thanks mainly to beta blockers and Imunovir. I have more good days and fewer bad days. I can take walks and do some light weight lifting without going past my Anaerobic Threshold. I can even go to the grocery store without crashing the next day (on a good day with all conditions just right!). I have been baking again and cooking more for my family. And I spend far less time lying down than I used to.

But last week, I was reminded that despite all these wonderful gains, I am still held captive by the restrictions inherent in ME/CFS. It was an unpleasant reminder.

We had a very active, exhausting weekend. My dad and his wife were visiting. They are easy guests, but it is still different than being home alone. They were here for my uncle's funeral. He grew up near here (a fact I never knew before!), so the funeral was just a half hour from our house. Saturday was a very long and tiring day: visiting hours at the funeral home from 10 am - 11:30, church service at noon, graveside service at 1:30 pm, and lunch at 2:30 pm. I knew this would be like running a marathon for me, but we were prepared to leave early if we had to and drove separately from my dad.

Miraculously, I made it through the entire day! Just the late lunch alone was a big deal for me, but I packed plenty of snacks and guzzled a 12 oz. V-8 juice (for the sodium) before the church service. I wanted to be there for my family, especially my aunt and cousins, and I felt pretty good, so I hung in there. We finally got home at 4:30 pm, and I went right to bed for a very late nap. I slept soundly until 6 pm and probably could have just slept through the night, but we did have houseguests. It was a very low-key evening - we ordered pizza and watched a DVD - but the damage had been done.

I didn't feel too bad on Sunday - just very tired - so I went ahead with my plans to make a big corned beef dinner for St. Patty's Day. My dad and his wife left early Monday morning, my husband went to work, and the kids to school...and then I collapsed!

Lately, when I do too much and crash, it only lasts a day, so that's what I was expecting - maybe two days since this had been quite a ways over my limits. Each morning, I woke up expecting to feel better...and instead, I felt worse and worse. This was a severe crash - bad aches, sore throat, no energy, total exhaustion. I tried to listen to my body and stay on the couch - thankfully, it was a normal week, with the kids in school and my husband around in the evenings to help out. Finally, by Friday I felt a little better. Not great yet, but well enough to manage the grocery store (and frustrated by my lack of productivity all week), I thought. By Friday night, I felt awful again and woke up on Saturday morning in my worst state yet. My husband was very supportive and made me stay on the couch. Finally, on Sunday - a week later - I began to improve.

This week has been another rough one. I am feeling better, but my husband has been out of town all week, and my older son is home on spring break. Given his own health problems, that means a week filled with doctor's appointments, lab tests, etc. plus I am doing all the stuff my husband usually helps with - getting up at 6 am to drive Craig to school, doing dishes, driving to and from all kid stuff. I've been pushing my limits all week...and have been cranky and exhausted as a result.

So, once again, CFS has put me in my place and reminded me who's boss. I have no regrets - I am glad I was able to manage the funeral for my family's sake (and my own, too). I know that a couple of years ago, I never would have made it to 4 pm and would have felt far worse all day. But it is discouraging to be reminded so starkly that my life is still governed by these arbitrary limits. I can not skip (or apparently, postpone) my afternoon nap. I can not manage an all-day event or social occasion without paying a steep price for days or weeks afterward.

Don't get me wrong - I am grateful for the improvements I have made and for all of the things I can do now. But in the big picture of life, these are small gains - meaningful, yes, but my life is still defined more by what I can't do than what I can do. I would have loved to walk with my friend in her MS walk last week, but 3 miles is way beyond my capabilities. I am dying to take my kids to NYC to see all the sights, but I can only manage a couple of hours at a time before needing to rest. We haven't been to Disney since our big teen boys were ages 5 and 2. I am thrilled to be able to take walks again, but I am limited to 20-30 minutes at a very slow pace, every other day.

I really try to focus on the positive and on what I can do, not what I can't, but these last two weeks have been difficult. On the plus side, we are taking a little mini vacation this weekend, so that is something to look forward to! I am trying to take care of myself today and rest more.

Hope you all have a good, relaxing weekend too!

Movie Monday 3/18

We had a long and tiring weekend. My dad and his wife were visiting, and we spent all day Saturday at my uncle's funeral nearby. Visiting hours in the morning, church service at noon, graveside service at 1:30, and finally, lunch at 2:30. Believe it or not, I managed the whole thing (with the help of snacks in my purse and a big, salty V-8 juice before church). We finally got home at 4:30 and I went right to bed - very late for my nap, but I slept soundly until 6pm. I probably could have just slept all night if we didn't have guests who were waiting for dinner! I was totally useless by that point - limp as a wet noodle - so we ordered pizza and watched a DVD in the recliners (our family room is now ALL recliners - love it!) Surprisingly, I wasn't in too bad of shape on Sunday or today, just very tired (still). So, here's what we watched:

Ken picked out Total Recall from the Redbox. This is a remake of the classic Arnold Schwarzenegger sci-fi action flick from 1990. This new one stars Colin Farrell as Douglas Quaid, a factory worker living in a dystopian future where chemical warfare has made most of the earth uninhabitable, except for the United Federation of Britain and The Colony (Australia). People travel between the two via a super high speed train that travels through the center of the earth along a tunnel. Douglas commutes to UFOB each day for his job working the assembly line for police robots. He loves his wife but is fed up with his dead-end job (you would be, too, in this depressingly bleak world). He gets lured in by an ad for Rekall, a service that implants fake memories in your brain so that you can have whatever past you dream up for yourself. He chooses secret agent, but the process is aborted when it is discovered that he really was a secret agent in his past. Things get confusing from there, as Douglas is pursued by government agents and police, though he still can't remember this past life they claim he had. This is a very fast-paced movie with plenty of action. The females among us thought it was good but a bit too action-y, but the males (my husband son, and father) all loved the chases and fights. I have to admit that seeing a car chase with floating mag cars was something new!  I did enjoy the sci-fi plot, too. Lots of suspense and a pulse-pounding pace kept us all on the edge of our seats.

Have you seen any good movies lately?

Exciting New ME/CFS Research Looks At Infections

I am way behind in reading up on recent ME/CFS research, just like I am behind in everything else these days! So, this update was posted on Phoenix Rising back in February, but I am glad I kept it sitting open on my desktop all this time!

Ian Lipkin, a superstar in the research world of viruses who worked on the XMRV lead, is heading up a new research initiative to try to uncover the cause of ME/CFS. They already have 400 CFS patients enrolled in the study with 400 healthy controls, and that number by double by the end. They are using advanced methods to search for likely pathogen candidates, plus looking for protein and immune abnormalities that could point to previously undiscovered pathogens.

The details are summarized in this excellent article on Phoenix Rising in simple, easy-to-understand terms (there's even a nifty diagram!). Check it out.

So, rejoice! Perhaps by the end of this year we'll have answers to some of the many questions those of us with ME/CFS face - exciting times!!

Movie Monday 3/11

Craig finally went back to school on Friday!!  Hurray! Even better, he didn't crash afterward, worked on make-up work all weekend, and went to school today, too! He seems back to his old self - what a relief for all of us. Of course, we are never all well for long - Jamie came home from college on Sunday with a bad cold. You know how that affects CFS. He went back to campus last night with a pile of extra medications and is trying to take it easy this week.

Well, anyway, Ken and I enjoyed a great movie on Friday night:

We watched The Kids Are All Right, a movie I have wanted to see ever since its theatrical release. It was very good, with a fabulous cast. Julianne Moore and Annette Benning star as a gay couple who have two teenage kids. Benning's character is a doctor who is a bit uptight and controlling. Moore's character is more of a hippie-type who is trying to start a landscaping business. They seem to live a nice, quiet life together, until their son decides he wants to find out who is biological sperm-donor father is. His sister, who is 18, contacts the donor agency, gets a name, and sets up a meeting with him, played by Mark Ruffalo. Things begin to spin out of control from there. Ken and I both enjoyed this drama/comedy - the cast is all excellent, the story is engaging, and there's even a great soundtrack behind it all.

Have you seen any good movies lately?

Movie Monday 3/4

Yet another long week of being mostly housebound with my son, but we are finally seeing signs of improvement. He did perk up a bit, starting on Friday, and had a decent weekend. He was finally able to do a little bit of make-up work for school, and he had a friend over for a few hours on Saturday. The idea was that they would just chill out and play video games, but they went outside for a walk in the woods for a half hour. The poor kid hasn't left the house in almost a month (except for doctors and surgery!) and hadn't seen any friends at all, so it is hard to take it easy when the energy finally comes back - I'm sure you all understand that! We were hoping he'd be back in school today, but he slept until 11 am and is feeling wiped out again. Hopefully, he will get back to at least partial days this week.

So, he and I watched a lot of TV again last week. He is really enjoying old episodes of Roseanne, especially now that David has shown up, played by one of his favorite actors from The Big Bang Theory. When our college-aged son came home on Sunday for the day, we caught up on 3 episodes of Arrow, an excellent new superhero show. And we watched a couple of movies this weekend:

Friday night, we watched The Bourne Legacy with our son. We all enjoyed it. It picks up where the last Jason Bourne movie ended, with the CIA and the public all in an uproar over the secret program that came to light. Now we find out that there is another super-secret program in danger of being exposed with all the publicity. They try to shut it down, but one of the super-soldiers they've created escapes....and the chase is on. Our son complained that there wasn't enough action in the first half of the movie and too much backstory, but the second half of the movie had plenty of action to satisfy him!  The movie was fast-paced with an intricate, complex plot and plenty of suspense.

Saturday night, Ken and I watched Looper, a thoughtful, in-depth sci-fi story set in the future. It's a time-travel story, so it is somewhat complicated - we had to hit pause at one point and try to figure out what was happening in which year - but that's what I love about time-travel stories! The basic plot is that in the future, it is impossible for criminals to get rid of bodies because everyone is electronically tagged, so there are hired assassins called Loopers who wait 30 years in the past. At a designated time, the  victims are sent back in time and  - bam! - the Looper kills them and disposes of the body. One Looper, played by Joseph Gordon-Levitt, is saving up for his retirement, until the day one of his intended victims turns out to be an older version of himself, played by Bruce Willis. I hadn't wanted to watch this movie because of the violence, but it turned out to be a very good, thought-provoking movie, incorporating all of my favorite time-travel themes.

Have you seen any good movies lately?

Eleven Years Ago Today

Eleven years ago today, I woke up with an incredibly sore throat, feeling achy all over, and thought I had caught a virus. You all know how that story ends.

It is still amazing to me that my life changed so dramatically that day, and I had no idea what a momentous occasion it was. In fact, I didn't even stay in bed. We had planned on taking a day trip to Baltimore for a little winter getaway and taking the kids to the National Aquarium. We went ahead with our plans because we were all looking forward to it. My memories of that day are both foggy and remarkably clear. I spent the whole day feeling so very sick: the pain in my throat more severe than anything I had experienced before, so lacking in energy that I had to lean against the handrails as we walked past the aquarium exhibits, and my mind feeling like someone had stuffed it with cotton.

Looking back, though, I recognize that how I felt that day is exactly how I still feel now, 11 years later, during a severe crash. ME/CFS arrived that day, all of a sudden and yet completely without fanfare. How could something that changed my life so completely start in such an ordinary, insignificant way? It would be months and months before I realized my "virus" wasn't going away and years before I really accepted that.

March 2 - my Illiversary - used to be such a significant day for me, a reminder of all I had lost. Now it just feels like any other day. Yes, my life is dramatically different than it was pre-March 2, 2002, but I have adjusted and adapted to my "new normal." I'm no longer lying on the couch waiting to get better; I have long since resumed living my life. It is just a different life than it was before. I still have many restrictions and limits that define each day, but I have tirelessly researched treatments and have found several that have helped me get up off that couch and resume some version of my life (primarily treating sleep dysfunction, Imunovir, low-dose naltrexone, and beta blockers).

It's a different life, but it is mine.

New ME/CFS Website Offers Support

I have still been tied up taking care of my son, with little time for any writing or blogging, but I wanted to take a moment to tell you about a new ME/CFS website that an online friend of mine has launched that I'm really excited about.

The site is called MEcuperate, and one of the things I like about it is its very positive and life-affirming focus, as you can see just from its name. Its focus, as explained on the homepage, is very similar to that of this blog - to help people to LIVE with this illness, with emphasis on support, encouragement, and inspiration.

There are many informational portions - including Managing ME, Recipes, and Useful Links - of the website, but its real potential comes from its interactive aspects.

So, get started by registering for the site with a username and password. Then you can participate in its discussion forums or add your comments to any of the areas of the site, including recipes, pasttimes, crafts, and many others.  Two areas I am most excited about are the book club and movie/TV club, where participants can discuss books and movies. The first Movie Club selection is Skyfall, so once you are logged in, feel free to add your thoughts and comments!

I'm excited about this new way for people with ME/CFS to connect with each other and hope you will go check it out!

Movie Monday 2/25

My son, Craig, is still pretty much incapacitated - knee surgery and a second sinus infection have triggered a severe CFS flare-up, way beyond what he usually experiences, so we have been watching lots and lots of TV and DVD's!

Like comfort food (which I have been making a lot of!), Craig likes comfort movies - old movies (especially comedies) he has watched dozens of times before. Perfect when you are on pain killers, right?  Last week, he watched (again) Napoleon Dynamite, The Birdcage (one of the funniest movies ever made), Mrs. Doubtfire, RV, and Grown-Ups (several times!).

This weekend, Ken and I finally got him to watch a movie he'd never seen before, The Blues Brothers. Can you believe I've never seen it before either? It was released in 1980, and I had the soundtrack album in high school, but in 30 years, I'd never seen it. This may sound silly, but I didn't realize it was a musical! I really enjoyed it, especially the musical guest stars/cameos, like Aretha Franklin playing a diner owner who suddenly starts belting out "Think" or Ray Charles as a blind music store owner who sits down at the keyboard and pounds out a classic. Even Craig was excited to see the real Cab Calloway sing and dance (his school shares a building with the Cab Calloway School of Arts). This movie is just a lot of fun - music, dancing, and comedy by an all-star cast.

I also brought home a bunch of old sitcoms on DVD for Craig. So far, he loves Mork & Mindy and Roseanne (I knew he'd like seeing three cast members from his favorite The Big Bang Theory).

Ken and I have discovered a new show, The Americans (FX), about a typical surburban couple in 1981 with two kids who are really undercover Soviet spies. It's excellent (though quite violent) with a good sound track. The only problem was that after watching the first episode, I dreamed about fighting off spies all night. In my dreams, of course, I was paralyzed and couldn't scream, so I kept waking Ken up in the middle of the night with little squeals and squeaks as I struggled to get away and scream!  Ah, the joys of CFS, huh? I usually avoid watching anything suspenseful before bed, but this was just so good!

Have you seen any good movies or TV shows lately?


(If you are interested in what we are reading this week, check out the Monday post on my book blog.)

Post-Surgery Recovery

My son is the one who had surgery a week ago, but both he and I have been trying to recover this week. It's been a rough month here, especially for him.

Our 15-year old son has missed 3 of the last 4 weeks of school (and 6 weeks total so far this year). First, he had a week-long crash after a snowboarding weekend. He has the mildest CFS in our house and is normally symptom-free and can do anything he wants, as long as he takes his medication. So, he can handle a sleepover or a day of snowboarding...but apparently, two sleepovers in a row with a full day of snowboarding in between is too much!  It's also possible there was a viral trigger involved because he was congested that week.

He went back to school the next week, but by the weekend was feeling bad again. That turned out to be bronchitis and a sinus infection - because of his CFS, infections like that just totally knock him out, so he missed another week of school. He felt better by Thursday night, just in time for his knee surgery on Friday! His congestion was gone and his energy was back, so we went ahead with the scheduled surgery (he had two days off from school so the timing was critical).

So, he spent this last week trying to recover from surgery. We'd taken all the right precautions, notifying the surgeon and anesthesiologist of his CFS and orthostatic intolerance (check out this previous post for advice plus a link to an excellent article to print if you are having surgery), but he still had a rough time. I guess surgery is just a tremendous stress on the body, triggering a severe CFS flare-up. The surgery itself was disappointing because the surgeon discovered that his previous repair didn't hold, and our son is going to need a third surgery.

I crashed after his surgery, too! We had to get up at 5 am that day and spent most of the day at the hospital, sitting in various uncomfortable chairs. They didn't discharge him until mid-afternoon, by which time I was starving and exhausted. So, we both spent the next few days on the couch, recovering.

Instead of getting better this week, he seemed to be getting worse and developed a mild fever and some congestion about mid-week. It is always so hard to tell the symptoms of "just" CFS from an actual infection, but by Friday, I decided his pediatrician should take another look at him. She said the same thing - the smoldering fever, swollen glands, and exhaustion could be a lingering CFS crash, but given his history, his susceptibility to bacterial infections (like all people with CFS), and swollen sinuses, she decided it was most likely a sinus infection and switched him to a different antibiotic. He was already perking up a tiny bit last night, so I am hoping we are on the right track now.

That poor kid has been through so much! He started his freshman year of high school so excited and eager; he even made the soccer team. Then, on the last day of try-outs, his knee finally gave out for good. Instead of playing soccer for his school and enjoying various activities, he's had two surgeries, is struggling to catch up on missed work and is missing out on everything else. We are trying to stay positive, but watching your child suffer day after day is just heart-breaking.

Besides that, I have been totally exhausted and overwhelmed, focused entirely on taking care of him and not getting much else done or taking care of myself. I have had a case of thrush for 3 weeks that won't go away. After 3 weeks on Diflucan with some improvement but still lingering symptoms, my doctor ordered some lab tests yesterday to find out exactly what kind of yeast we're dealing with so she can choose a targeted treatment. I'm sure that is adding to my own CFS flare-up, along with countless trips to doctor's appointments, labs, the drugstore, and the grocery store. Teen boys eat a lot, especially when they are stuck at home!! It felt like I spent all week standing at the sink, doing dishes.

So, I'm sorry I haven't posted much here lately. I have hardly written anything at all this past month, so don't take it personally.

We are trying to keep our senses of humor. Last night at dinner, our son was mock-complaining about spending a lame Friday night watching DVDs with his parents, so I started singing "It's a Hard Knock Life" from Annie. He cracked up and said, "Our life would make the crappiest musical ever!" We all got a laugh out of that and took turns coming up with songs about going to the doctor, lying on the couch, etc. ("Lying on the couch" goes perfectly to the tune of "Master of the House" from Les Miz).

Sometimes, you just have to laugh, right?

Happy Mardi Gras!

It's Fat Tuesday - Happy Mardi Gras, everyone!

We used to live in New Orleans, so we celebrate Mardi Gras in high style here at our house. Since CFS, we have had to scale back all of our celebrations, including Mardi Gras, but we have adapted and found ways to enjoy this - and other holidays - while staying within our limits.

My mom raised me to celebrate even the little things in a big way, and I have adopted her mindset. My kids have loved all of our traditional celebrations, even when they were too sick to do much else. Especially when dealing with chronic illness, we all need these moments of joy and special occasions in our lives to lift our spirits and remind us that life is meant to be enjoyed!

We used to have over 50 people over for a huge blow-out Mardi Gras party every year that would last into the wee hours of the morning. Now, we have just a few close friends over, they all help out, and everyone is gone by 10 pm!  But we are still keeping our tradition alive, and it's something we all look forward to.  On this Weekend Cooking post at my book blog, I wrote about the foods we make for Mardi Gras, along with a list of ways to celebrate the holiday no matter where you are (or what your restrictions are). It's not too late - there is still time to ask a friend or family member to bring home a King Cake or some Popeye's tonight!  The parades are over, but you can still check out the Jackson Square cam to enjoy New Orleans' Mardi Gras vicariously.

And later this week, we'll take down all the purple, green, and gold decorations and replace them with red hearts to celebrate Valentine's Day!

Any occasion will do, really - add a little joy to your life with a celebration this week!

My boys and a friend, 2006

Movie Monday 2/11

We had a very busy week and weekend, culminating in our annual Mardi Gras party Saturday evening. In the old days, we'd have over 50 people here! It's a much smaller affair now, and I get lots of help from friends, but I still felt hungover Sunday, even though I couldn't have any beer at the party!  But it was fun and good to see our friends.

So, we only had time for one movie last week, Friday evening:

My son and I have been wanting to see Pitch Perfect for a long time, and all three of us thoroughly enjoyed it! It's a musical comedy about a college a cappella group that is trying to spice up its tired old routines. Beca, played by Anna Kendrick, is not happy about being at college; she is there because her father insisted on it, at the college where he teaches, but she is not eager to join in on campus life. She wants to move to LA and be a DJ, so she gets a job in the campus radio station. Her father says that if she joins one club and really gives college a try, she can leave if she doesn't like it after a year. So, Beca reluctantly joins the all-female a cappella group whose co-leader has been pestering her since she heard her sing in the shower. The traditionally prim and proper group needs 8 new members after its seniors graduated, and the group they manage to round up is very un-traditional - a group of diverse misfits with good voices. This movie is just pure fun - lots of laughs, a great cast, and wonderful music. My favorite movie website lists its mood as "pick-me-up," and that is perfect - pitch perfect! My son loved the music so much that he immediately downloaded the soundtrack from iTunes. A great choice for Glee fans!

Have you seen any good movies lately?

Second Successful LDN Study for Fibromyalgia

Great news!

Stanford University has finished its second study on treating fibromyalgia with low-dose naltrexone, with very good results and no side effects reported.


My son and I both take low-dose naltrexone (LDN) - I have taken it for over 5 years - and it has helped us both. Here is a blog post on my own experience with LDN.

Here are two excellent websites for more information on LDN. Both include details on exactly how LDN works, and links to research studies on its use (of course, there have been no studies yet on LDN and ME/CFS!):

LDNers

LDN Science (check out the video on the homepage that shows how LDN works)

Also, a pharmaceutical company has purchased the patent for LDN (at 4.5 mg) and has applied for FDA approval. Since this is a different dose of a drug already on the market for decades (naltrexone at 50 mg), approval should come quickly. Then, LDN will be available through any drugstore rather than having to go through a compounding pharmacy. This will make the treatment far more appealing to mainstream doctors, and the company has pledged to keep the cost reasonable (at less than a dollar a day).

This is all great news for CFS and FM patients!

Movie Monday 2/4 (on Tuesday)

Oops...I seem to have missed Monday....and almost Tuesday, too! I had 4 back-to-back appointments yesterday so had no online time at all. Whew, long day. And another one today - working on taxes, on the phone with Medco for 90 minutes (and still didn't resolve the problem), and taking my son to see his knee surgeon and get another MRI. Rough week so far!

So, let's talk of happier things...like weekends and movies!

We enjoyed our last weekend with our oldest son still at home. He moved back into the dorms Sunday (but came back to watch the Superbowl with us!). My family continued to be totally wrapped up in TV shows last week - we found yet another one we love - Heroes. But, I stopped at Redbox for a movie on Friday and didn't take no for an answer!

We watched Moonrise Kingdom, and we all enjoyed it (Jamie, 18, and I especially loved it). It is funny, heartfelt, sweet, adventurous, and very quirky but in a good way. It is set on a small island off the New England coast in 1965. Two misfit kids - Sam, an orphan, and Suzy, who feels out of place among her family and her peers - have both been labeled "troubled." They find kindred spirits in each other and plan to run away together. Their disappearance sets off panic with Suzy's family and Sam's scoutmaster. The movie is filled with top stars - Bill Murray, Bruce Willis, Frances McDormand - and shot in a sunny vintage sort of style, with all the cool clothes and accoutrements of the 60's, like Suzy's mini dresses, knee socks, and portable record player. It's all somewhat tongue-in-cheek and lots of fun but heartwarming as well.

Have you seen any good movies lately?

New ME/CFS Treatment: Manual Physical Therapy

A series of articles was recently posted on the Solve CFS (a highly recommended source for the latest news in ME/CFS research) that prompted me to tell you a bit of what I know about an exciting new way to help even severely disabled ME/CFS patients.

Dr. Peter Rowe, a well-respected pediatric CFS/OI expert at Johns Hopkins, has developed (along with local physical therapists) a new manual physical therapy process. You can read about it in these two articles:  Part 1 and Part 2.

To be clear, this is NOT Graded Exercise Therapy. The manual therapy starts with the patient in an entirely passive role, lying down, and the therapist very gently moving the patient's limbs and other body parts. It can be done on severely disabled patients and is extremely slow and gentle, with a goal of reducing sensitivity in the nervous system and avoiding any post-exertional consequences.

We have seen the success of these techniques up close. A good friend of ours, a 16-year old girl, went from bed-ridden to attending school full-time, thanks to this manual therapy and beta blockers. Before treatment, she was in constant pain, and now she is not only mostly pain-free and going to school every day but also able to exercise - riding her bike like any normal teen!  The difference is absolutely amazing.

The best part is that you don't have to wait for this treatment to become available. Dr. Rowe will review the process and how to go about it with your physical therapist over the phone - he has done this for many of our local CFS patients already. Also, read the comments section at the end of the Part 2 article, where there is guidance on finding a qualified PT who is trained in these methods.

Good news all around!

Approved for Social Security Disability

People keep asking me whether I have heard back yet, since my final hearing on Social Security disability back in December.

Yes, my letter came in the mail a couple of weeks ago: "Fully Favorable Decision."

It is a bittersweet success, though, which is probably why I haven't said anything. I have very mixed feelings about it. I was approved for just 3 years' back benefits with no on-going benefits. It's a long story, but the bottom line is that it came down to making a choice between an almost-certain "no" or a good possibility of a "yes." My husband and I agreed with my lawyer that something would be far better than nothing.

And that strategy worked - I was approved. But it still stings that I wasn't able to ask for or get what I really deserve - back benefits for 11 years plus on-going benefits.

So, yes, I was approved - yay.  Now we wait another 30 days to find out how much, then another 30 days to get a check. We have no idea how they'll calculate this, since I made a good salary as a consultant 13 years ago, before I got sick, and very meager earnings since then freelance writing.

I do highly recommend hiring a lawyer to take you through the entire process. I doubt very much I would have won without him; his advice was very helpful every step of the way and his office handled a LOT of the paperwork, faxing, etc.. The way it works is that you don't pay anything unless you get approved; then the lawyer gets a small percentage of your benefits.

Movie Monday 1/28

It's been a while since I wrote a Movie Monday post because I can't get my family to watch any movies with me! They have all been into various TV shows On Demand, on Amazon Prime, on DVD, and on Hulu. Let's see, we've been watching Arrow, Firefly, Dexter, Bones, Elementary, Sherlock, and The Following.

But this weekend, we took the kids and two friends up to my mom's house in the Poconos for snowboarding to celebrate our son's 15th birthday. While the kids were out snowboarding in the evening, Ken and I finally had a chance to watch a movie:

We watched The Rum Diary, starring Johnny Depp.  It was good but a bit strange. We didn't completely understand what it was about until the closing credits!  It turns out it is based on a true story of a New York reporter (Hunter S. Thimpson) who heads to Puerto Rico in 1960 and takes a job with a small newspaper there. As the title suggests, he likes to drink...a lot! So, the movie follows his drunken escapades around the island with fellow reporter Sala, but there is a lot more to the story under that veneer. He meets a wealthy American named Sanderson who is involved with all kinds of illegal activities. He gets pulled into it all for a while, until his reporter instincts kick in and he finally finds a way out.  It was more somber than we both expected, though it has a few funny moments. We both enjoyed it. Depp does drunk and disorderly so very well!

Have you seen any good movies lately?

My Health Goals for 2013

I haven't been posting much here lately. For us, the hectic holiday season seems to last right through February. We make it through Christmas and New Year, then quickly move onto Craig's birthday (the celebration often lasts for 2 weeks!), then Mardi Gras (a major holiday in our house) and my niece and nephew's birthdays in Connecticut. Then, we can take a breath!

Anyway, I posted a couple of weeks ago with a look back at 2012 and promised to write about my goals for 2013. As I said in my previous post, I am a data freak, and I also really like setting goals! No, really, I find goals inspirational. They aren't resolutions but specific measurable goals. I used to set my goals the first week of the year and then forget all about them until the end of the year when I'd be disappointed in myself for not doing what I wanted to do....again. Then, I learned to take those broad goals and set smaller, measurable objectives to support them (it's actually something I used to teach companies to do with environmental management). The key for me is that I track my progress against my goals each week. That probably sounds like a lot of work, but I found that it only takes a few minutes and it keeps me on track. Then, by the end of the year, I've actually focused on the things I wanted to focus on. And that makes me very happy.

Of course, CFS gets in the way, and my tendency to over-commit is still there, in spite of 11 years of illness! But, this process works well for me overall. So, I have lots of small, measurable goals (too many, I'm sure!), but I'll just focus on the more health-related ones here. Almost all of these are goals I also had last year that I want to continue to work on.

Relationships
I have a group of Relationship goals, which do actually relate to health. Close, healthy relationships are good for me, and eliminating the stress of poor relationships is critical. So, some of my goals include:

• Meeting my husband for lunch once a month
• Date night with my husband once a month
• At least 1 overnight getaway with my husband during the year
• Do something fun with the kids at least 4 times a week 
• Call my mom once a week
• Get together with friends once a week

CFS certainly makes it more challenging to find time alone with my husband. It is just easier for me to stay home most of the time!  But we did better last year (i.e. date night 67% of the months) than the year before (date nights only 25% of the months), so we are making progress, and I will try to do even better this year. The goal to do something fun with the kids is an important one: now that they are older, it is too easy to end up all plugged into our own various electronic devices. I have to make a conscious effort to play a game with them or do something else fun. At first, I wasn't counting TV time, but by evening when we are all together, we are usually pretty wiped out, and I realized that enjoying a TV show together does count - I know lots of families with teen kids can't even manage that. I did quite well at getting together with friends at least once a week last year (94%!), and that helps my emotional well-being and mood very much!

Enjoy the Outdoors
Nature and the outdoors are very important to me. Even though CFS has greatly reduced my outdoor activities, I still make an effort to do what little I can because I find being outside is replenishing to my soul. Like supportive relationships, spending time outdoors helps me to keep stress down and increase the joy in my life. Some of my goals include:

• Spend at least 10 minutes a day outdoors (even if it is lying on my deck wrapped in blankets!)
• Go hiking at least once a month
• Go camping at least 3 times a year

I feel so much better when I spend time outdoors, but I only managed it 20% of the days last year. I suppose every day is probably too tough a goal, but I want to keep trying. "Hiking" is loosely defined; I did a slow walk on level ground with two friends this morning for about 25 minutes (wearing my heart rate monitor)...that counts! And we only went camping twice last year, though "one" of those times was a 3-week long road trip. This year will be challenging, with our oldest son now in college.

Health
Some of my specific health goals include:

• Try new treatments for Jamie and I
• Walk at least 3 times a week
• Do gentle yoga for at least 5 minutes, at least 3 times a week
• Light muscle-building, at least 2 times a week
• Rest when symptoms flare

Last year, I was totally focused on Jamie - we tried dozens and dozens of changes and new treatments, and some of them worked wonderfully to help get him functioning again. This year, I need to start thinking about myself again. I think I may try a slightly higher dose of low-dose naltrexone, for one thing, and perhaps going up on my Imunovir dose which is currently lower than recommended.

The exercise goals are more modest than they appear, and all of them are predicated on not causing a post-exertional crash. My walks are usually slow, easy walks around my neighborhood, about 25 minutes, wearing a heart rate monitor and staying below my AT the entire time (beta blockers allow me to do that). I have discovered that gentle yoga while sitting or lying down helps me even on bad crash days - the worse I feel, the more I focus on lying down, meditative-type yoga. And on any day, the stretching feels good, especially first thing in the morning. The muscle-building is likewise done very slowly and carefully, wearing a heart rate monitor and staying below my AT. I have found that breaking it into tiny increments works best. So, I might do 10 push-ups, then lie on the couch with my laptop; an hour later, I might do some lying-down abs exercises, etc. And I only attempt the muscle-building on days when I feel my best. I improved with both yoga and muscle-building last year and want to continue to strive for the goals above.

The "rest when symptoms flare" is actually a tough one for me but critically important. I tend to push myself too hard and convince myself that things "have to" get done, even when I am feeling bad, so I am trying to work on this. I only managed this 45% of the time last year, so I will continue to focus on it. Actually having it as a written goal helps me to give myself permission to "slack off" (ha ha) on bad days and take better care of myself.

Reduce Stress
This is really part of overall health, but I realized last year that I needed to work more on reducing stress and taking better care of myself. Some of my goals are:

• Meditate 10 minutes a day
• No computer after 7 pm
• Take one "day off" per month

I really need to work on the meditation goal, but I find it hard to slow down and just "do nothing" during my productive time of day. My afternoon nap is sacred, so I do well at taking that time off each day, but I know meditation would help, too. I learned Transcendental Meditation (TM) when I was 16, so I have the tools; I just need to practice.

I know I spend way too much time on my computer and that it is tiring for me...but I am totally addicted to my online life!  So, I have tried to set limits for myself, to ensure I don't overdo and also to make sure I spend quality time with my family in the evenings. I'm going to continue to work on this one!

Taking a day off each month is an idea I got from an online friend (who does not have CFS). This is actually really tough for me. I am always focused on being productive; even on crash days, I lie on the couch with my laptop and try to get stuff done. So, the concept of a day off once in a while - a day just for me, with no responsibilities or obligations - is a difficult one for me but very, very beneficial. I only managed it 25% of the time last year, so I hope to do better this year.

So, that's a summary of my health-related goals. How about you? Have you set any goals for yourself this year? Baby steps...

More on Exercise and CFS

For those who are interested in hearing more on the subject of safe exercise for ME/CFS patients, Jennie Spotila has once again written an excellent and comprehensive post on her blog, Occupy CFS.  In this post, she compares the exercise guidelines recently presented by Dr. Nancy Klimas (and referenced in my last post) against the exercise guidelines suggested by CFS exercise specialists at the Pacific Fatigue Lab, well-nown for their excellent research on exercise and post-exertional crashes in CFS.

By looking at all the information in one place, Jennie has presented an excellent overview of safe exercise for people with ME/CFS.

Dr. Klimas's Exercise Program for CFS

On Monday, the CDC hosted the second in a series of phone conferences with ME/CFS patients, PCOCA: Patient Centered Outreach and Communication Activity. I wasn't able to participate, but I am excited that they are doing this and they reported on a lot of progress in areas of research, doctor education, and better healthcare for patients, all as a result of earlier patient requests. All of this is excellent news, especially the overall fact that the CDC does seem to be listening to patients and trying to take action on our most urgent needs.

The Life As We Know It blog posted the best summary of the teleconference that I have seen.  It is brief and easy to understand and highlights some of the most important points covered. Take a look.

All of that good news has been somewhat lost in a flurry of patient protest over the last portion of the teleconference, where Dr. Nancy Klimas, prominent and well-respected ME/CFS specialist, talked about how she is using exercise to help her CFS patients. She was joined by Connie Sol, an exercise specialist who trains athletes with MS. The deluge of dissent came from the fact that the two did not specifically mention exercise intolerance aka post-exertional malaise during their part of the program (again, this is second-hand). I didn't listen to it myself, but I have heard lots of outraged patients take issue with this.

This didn't sound like the Dr. Klimas I have heard speak before, the doctor who has probably helped more patients than any other CFS doctor in the nation (and perhaps the world). I was puzzled by all this...until I read the summary at Life As We Know It. If you read the summary of Dr. Klimas' talk carefully, you will see that - although she is using the word exercise - she has carefully defined what that means for someone with CFS. She specifically notes that a person with CFS should wear a heart rate monitor and NEVER go beyond his or her anaerobic threshold (AT). If you have ever worn a HRM, then you know, we are not talking about jogging here! In fact, she says that the best way to start is with exercises done while lying on your back and in very brief time periods, perhaps 1 minute of exercise followed by at least 2 minutes of rest, never going above your anaerobic threshold.

From my own experiences, I think this is excellent advice. In case you missed it, I have written here about using a heart rate monitor to avoid post-exertional crashes (this link also explains what AT is and how to calculate yours). Dr. Klimas takes this a step further with the instruction to stay strictly below your AT and go very slowly and gradually. When defined this way, exercise no longer needs to be a dirty word for people with ME/CFS. We may not be out walking miles or hiking the Appalachian Trail anytime soon, but every tiny bit of progress can help to move us forward.

I know I have been going too fast lately. I take beta blockers to keep my heart rate down so that I can manage a lot more activity, and I do try to stay below my AT.  For instance, if I am taking a short (slow) walk in my neighborhood and my HRM beeps that I have hit 103 (my AT), then I stop and crouch down and rest until it comes down again. But I am crashed today, and all I did yesterday was 13 push-ups and some gentle ab exercises while lying on my back. The abs work did keep my HR below my AT, but I went over my AT at about the 6th push-up and kept going. I was just so excited at the proof that I am getting stronger! A few months ago, I could only manage 8 or 9. Obviously, that tiny bit of pushing myself over my AT was too much.

So, I plan to take Dr. Klimas' advice and bring things down a notch to where I can manage a bit of exercise without crashing the next day. I am close and I do manage some days, but I can see I need to be more disciplined about it, and she has provided some excellent guidelines.

Misunderstandings and Misperceptions

I called my mother on Monday of this week. I was feeling pretty crashed (I really shouldn't make phone calls in the afternoon, my low time of day) and perhaps a bit cranky.  She was her usual cheery self. At one point when I was saying something about my illness, she gushed, "Oh, but you are doing so much better these days! And so is Jamie!" I got really irritated, feeling like she wasn't listening to me, thinking, "After 10 years, how can she still not understand how sick I am and how much I struggle every single day?"

Now at this point, most of you are probably right there with me, feeling that sense of indignation so common for all of us with this nasty invisible illness, feeling misunderstood.  But guess what?  I was wrong.

After stewing about the conversation for a day (and waking up in the middle of the night, too), I decided I needed to talk to my mom about it. She and I are close, and early in my illness, we'd gone through some very rough times. I knew from past experience that if I held my feelings in, I'd just get more bitter and resentful toward her, and I didn't want that to happen again. I knew she'd probably be defensive, so instead of calling, I wrote a short e-mail note. That also gave me plenty of time to carefully think about what I wanted to say - I didn't want to blurt out anything I'd regret. I sent what I thought was a very tactful note, telling her that some of the things she'd said had made me feel like she wasn't listening and didn't understand.

She called me immediately. Much to my surprise, she gave me a bit of a mild scolding! At first, I thought she was just being defensive, but I listened to what she was saying:

"I do understand. After 10 years, I understand very well just how sick you are. I have seen you lying on the floor on Christmas Eve, with your face beet-red. I have seen Jamie visiting here, too sick to get up off the couch all weekend. I know exactly how bad things are and how hard it is for you to do normal things. I get it."

She explained that she was just trying to look on the bright side, as is her norm (and mine - I learned my positive attitude from her!), trying to be positive and bolster my spirits. She told me that a close friend of hers has cancer and has specifically asked her friends not to talk about her illness and to be extra-positive around her, so she was just doing the same with me.

Finally - and this is the part that really hit home - she said, "I think that you are so used to being misunderstood by people, so used to people not knowing how bad things are, that you just automatically assumed that it was the same with me."

I thought about it and realized she was absolutely right. I was being extra-sensitive because of both feeling poorly and, as she surmised, assuming that she, like everyone else, just didn't get it.

Even though this was a minor misunderstanding, I wanted to share it with you because I think we probably all do this sometimes - assume the worst, even from our close loved ones, because we are so used to being ignored and misunderstood.

We all know that misperceptions are rampant with ME/CFS - it's just being tired, it's not that severe, etc. - but this time it was my own misperceptions and misunderstandings. This really gave me something to think about.

The second lesson, of course, is that it is always better to get feelings out in the open (in a loving, kind way), rather than to let bad feelings simmer and fester. That is a lesson that I seem to keep re-learning!

Movie Monday 1/7

We had a busy week, traveling back from Oklahoma and getting back into our normal routine. So not a lot of time for movies, though we fit in two:

On New Year's Eve, at my father-in-law's house, we watched Deck the Halls, a silly holiday comedy. My FIL has trouble following complicated movies, so we were trying to find something he'd enjoy (a tall order!). The movie stars Matthew Broderick and Danny DeVito as neighbors who get wrapped up in a feud over DeVito's giant light display. It was just silly, seasonal fun, fairly predictable and very light but a pleasant way to pass the evening until it was time to watch the ball drop.

This weekend, back at home (and recovering!), Ken and I shared an old favorite with the boys, A Fish Called Wanda. Anyone remember this one from the 80's? It's a caper comedy, starring Jamie Lee Curtis, Kevin Kline, and John Cleese (we convinced them to give it a try by invoking Monty Python!). It's about four people who plot a bank robbery together and then every one of them tries to double-cross the others...and, of course, hilarity ensues! It is fast-paced, crazy fun with lots of laughs. Much of it is silly - this is not highbrow, subtle humor - but it's a lot of fun. We all enjoyed it.

That was it for movies, but we tried two new TV shows this week - Arrow and Firefly (which I got for my husband for Christmas, thanks to recommendations from YOU). We are enjoying them both, along with episodes of Modern Family (another DVD gift from Christmas), Elementary, and NCIS-LA.

Have you seen any good movies or TV shows lately?

(If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

What CFS Patients Want Well People To Know

The Massachusetts CFIDS/ME and FM Association recently conducted a survey of patients about their relationships with well family and friends (and the outside world in general), asking "What do you want well people to know?" The results are interesting; many of the comments really resonated with me.

ProHealth published this article on What CFS Patients Want Healthy People To Know, based on the survey results. The article is a bit long and somewhat repetitive, but overall a great summary of our typical interactions with the outside world. I shared the article on Facebook with my family and close friends - I think it is easier for them to hear some of this from a generic source like this survey rather than from their sick loved one directly.

Looking Back at 2012

Happy New Year!

I just love the start of a new year. It feels hopeful to me, a fresh start, and I am always eager to get back to "real life" after the holiday season.

I don't set resolutions per se, but I do take time at the start of a new year to look back over the past year and set goals for the coming year. I thought I would share with you some of my year-end summary that is relevant to life with CFS, and then, in a later post, some of my goals for 2013.

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). Last year, I looked back at 2011 and saw I had improved overall. Looking back at 2012, I see that I was a little bit worse than the previous year, with an average rating of 2.5 versus 2011's average of 2.4. That's only a 5% change, but I was still surprised to see it because I know I am still able to do much more than I could previously.  Ironically, perhaps that is the problem! With my symptoms less severe these days and crashes less frequent, I think I am often doing too much and pushing past my limits, resulting in more mediocre days and fewer good days.

I didn't really try any new treatments this year, other than switching from short-acting beta blockers to long-acting beta blockers just recently. As I explained to my doctor when she finally insisted I come in for a check-up, I ignored all my own health issues this past year because I was so focused on trying to help our son, Jamie. That is really the #1 thing that overshadowed everything else this past year. For the first 8 months of the year, as in much of the previous year, Jamie was horribly and horrifyingly incapacitated. He missed most of his senior year of high school and struggled mightily to finish enough work to graduate.

The good news is that he is doing much better now. Thanks to beta blockers, lots of new supplements to treat his herx reaction (to Lyme and other tick infection treatment), and perhaps just a case of good timing, he finally improved at the end of August, just in time to start college. That he is able to go to college (3 classes a semester), live on campus, and get back to living a somewhat normal 18-year old life is nothing short of a miracle to us and something that we are grateful for every single day. He still has a long and difficult road ahead, but at least he is now living his life and not trapped on our couch every day.

In looking back at the year, it occurred to me that maybe these two things are related. Perhaps my doing slightly worse had to do with the extreme stress I was under for much of the year (I do actually have data on stress, too, but I haven't gone through it yet!). In addition to watching my son suffer and feeling helpless to do anything (there is no worse feeling in the world), we endured extreme stress in battling his high school teachers and administrators for the accommodations he needed and helping him apply to colleges and for scholarships when he couldn't even sit up most days, not to mention worrying about his future.

So, I am hoping that maybe this coming year, with the stress greatly reduced, I can recover those gains I made in 2011.  Next week, I will share some of my health-related goals for 2013.

How was your 2012?

Movie Monday 12/31

Happy New Year's Eve!

Sorry I haven't been blogging much, but the holiday season has been hectic and exhausting. So, I will catch up on a few missed Movie Mondays today. Here's what we've been watching in between holiday doings lately:

Before all the holiday craziness began, Ken and I watched Vicky Christina Barcelona, a Woody Allen movie set in (yes, you guessed it) Barcelona. Two best friends, Vicky (played by Rebecca Hall) and Christina (played by Scarlett Johansson), go to Barcelona so that Vicky can do some research for her post-graduate degree. They meet a handsome, sensual Spaniard named Juan Antonio (played by Javier Bardem) who tries to seduce them. Vicky is engaged, but Christina quickly becomes involved with Juan Antonio. A strange love triangle ensues when his passionate but unstable ex-wife Maria Elena (played by Penelope Cruz) enters the scene. We are not huge Woody Allen fans, but Ken and I both enjoyed this movie. It definitely has its sad moments, but it is also filled with joy and passion (and humor) - basically a story about the ups and downs of love and life.

With the kids, we watched Disney's A Christmas Carol, the recent animated version starring Jim Carrey as Ebenezer Scrooge. We love A Christmas Carol and usually listen to an audio version in the car each holiday season - we hadn't done that yet this year, so we enjoyed watching the movie together. We were surprised by how frightening this animated movie was, though - I think young kids would definitely be scared by it and maybe have nightmares.

Craig (14) went out to a party one night, so Ken and Jamie (18) and I watched True Grit, the 2010 version by the Coen brothers starring Jeff Bridges. I've heard great things about this movie and knew it had won awards. but I still wasn't sure I'd like a violent cowboy movie.  We all loved it! I was surprised by how funny it was...and also touching. Hailee Steinfeld, the girl who played the lead role of Maddie, was absolutely outstanding, as were Jeff Bridges and Matt Damon. Maddie, 14, hires Bridges, an aging US Marshal who is known as the toughest one around, to find her father's killer so she can take revenge. Damon plays a Texas Ranger also looking for the same man. Both men - and everyone else they come across - vastly underestimate Maddie. It is a fabulous story made even better with superb acting. Now I'd like to see the original version starring John Wayne.

With a houseful of guests for 5 days, we took a much-needed break one night and watched National Lampoon's Christmas Vacation. It was just as expected - total silliness and lots of slapstick humor featuring Chevy Chase - which was just what we needed. Lots of laughs with the family, and it made our own family seem downright quiet and normal!

Here at my father-in-law's house, we watched Mission Impossible 3: Ghost Protocol the first night we arrived. It was also as expected - lots of insane action scenes with Tom Cruise, an intricate plot (that my FIL couldn't follow), and all sorts of amazing high-tech gadgets. Fast-paced, filled with action, and fun.

Last night, we watched a classic thriller from 1978 that we thought my FIL might enjoy more (and that we've wanted to share with the boys for a while): Invasion of the Body Snatchers. Though not as lightning-fast as recent thrillers, it kept us all on the edge of our seats and yelling at the screen: "No! Don't fall asleep!" Is there anyone out there who isn't familiar with the plot of this classic? Two friends working for the Department of Public Health in San Francisco begin to notice strange things happening to the people around them, after unusual new flowers appear everywhere. High suspense follows. It's a classic for a reason, and we all enjoyed it (though the boys needed to watch an episode of Modern Family afterward before bed!)

Jamie actually made it to the midnight showing of The Hobbit on opening night, but the rest of us haven't seen it yet. When I was a kid, my family used to go to Toronto for New Year's Eve weekend and watch back-to-back movies in the new multiplexes there - lots of great memories of movies and New Year's celebrations. Wish I had the stamina for that now!

Have you seen any good movies this holiday season?

Happy New Year!

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

Hectic Holidays!

I am sitting alone in our family room in a completely silent house, after a week of non-stop work and utter chaos!  Ahhhh....silence and solitude. I can hardly believe it.  Our last house guests left at 4 am, and my husband and sons are still sound asleep. 

Despite not getting to sleep until midnight (said guests and our sons were up late, talking loudly in the hallway right outside our bedroom door!), I was wide awake by 6 am this morning, with no hope of getting back to sleep, as I have been every morning for the past month or so. I have no idea why this is happening, but I can't take much more of it!  My usual bedtime meds are still working well, and I sleep soundly, but I wake literally at the crack of dawn every day. I have tried more melatonin, less melatonin, no melatonin, taking valerian when I wake at 6am, taking Ambien before bed, etc. No matter what I do, I still wake up too early. Obviously, I need to go to bed earlier, but that was impossible with a houseful of night owls.

So that frustrating lack of sleep (I normally need a solid 9 hours at night to be able to function during the day) made the exhaustion and over-doing ten times worse this past week. It felt like my husband and I spent all our waking hours preparing meals and cleaning up after meals! Even when we went super-easy and got take-out or just set out stuff for sandwiches, it was still a lot of work to feed between 6 and 14 people at every meal for five days. And I sorely missed my lying down time throughout the day. You really can't lie flat across the entire couch when you have that many people in the family room!

I don't mean to gripe and sound like a Grinch - it's just such a relief to have a chance to "talk" to people who will totally understand. It was actually very nice to see my family. There is nothing like little kids at Christmas-time, and I loved seeing my niece and nephew. My 6-year old nephew was so excited about opening presents, he was just bursting with joy! And when he opened our gifts and saw the Teenage Mutant Ninja Turtle action figures we got him (yes, they are back), he squealed in delight as if he'd won a million dollars. Gotta love that kind of unbridled joy and enthusiasm. My niece, though now conscious of not wanting to seem childish (at only 10!), was equally thrilled with the birthstone necklace we gave her.

I also love spending time with my mother, and she is very kind and understanding about my limitations. The rest of my family just sort of ignores my illness and changes the subject if I bring it up (which I rarely do since it obviously makes them feel uncomfortable). They rarely think to help out, either. My mom - who is 67 and had hip surgery a month ago and is still using a cane - was the only one pitching in at every meal and constantly asking how she could help, despite her own pain and exhaustion. I was grateful to her for that.

It really was good to spent time with everyone, but five days is a lot for me to be around other people, even people I love. I know you all understand that. We ate a lot of great food (too much!) and had lots of laughs talking, watching movies, and playing games. I just needed more downtime. My afternoon nap just wasn't enough - and of course, I was much too active every day.

I wish I could just lie here in the silence and appreciate my couch for the rest of the week, but we will soon be off on another adventure, to visit my father-in-law. The packing and traveling will be exhausting, but the visit will be low-key and quiet, since he is 87.

I hope you all enjoyed a relaxing holiday with family and friends.

My husband, sons, and I with my mom and her husband at a holiday party

Low Expectations

How's this for a cold splash of water on the face? My lawyer just called about my disability hearing tomorrow.

There are 5 disability judges in Delaware, and we have the 3rd lowest approval rating of all 50 states! He said he can tell by the way the schedule is arranged tomorrow that it will be one of 3 judges. Two of those have approval rates of 20% - that puts them among the lowest 10-15% of all the Social Security judges in the entire nation!! So, I have a 67% chance of getting a judge who almost always says no. Very discouraging! 

The whole process is just so unfair - the mere fact that it relies on which judge you get rather than the merits of your case is just crazy.

Wish me luck - I have a feeling tomorrow will be a difficult day emotionally.

A Season of Hope

I haven't had much energy left for blog writing the past two weeks, but the good news is that I have been using up all of my energy on some very worthy projects that give me a great deal of hope for all of us with ME/CFS and the future of our illness.

I was recently asked to join a fledgling organization called the National Advocacy Alliance for ME/CFS. Having been told for many years by the NIH (U.S. National Institutes of Health) that ME/CFS patients would have a much higher effectiveness if we banded together, a grassroots group has formed this Alliance and is moving forward aggressively on several exciting projects. It is a collection of existing state, regional, and other CFS-related organizations, including:

• CFS Solutions of West Michigan
• CFS Knowledge Center, Inc.
• CFS/Fibromyalgia Organization of Georgia, Inc.
• Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago
• Coalition 4 ME/CFS
• The Connecticut CFIDS & FM Association, Inc.
• Massachusetts CFIDS/ME & FM Association, Inc.
• New Jersey CFS Association, Inc.
• P.A.N.D.O.R.A.
• Phoenix Rising
• Rocky Mountain CFS/ME and FM Association
• Speak Up About ME
• Vermont CFIDS Association, Inc.
• Wisconsin ME/CFS Association, Inc. 

 Plus several individual advocates, like myself, who have contact with a number of other patients (for me, through this blog and our growing online parents' group).


One of their first projects is an awareness poster that is almost ready for the printer. It features several different ME/CFS patients' photos, plus some information on the severity and symptoms.

To go along with the poster, they are working on some website text that all of the organizations above can use to go along with the poster and link to additional information.  I was helping out with the editing on that this week.

The other exciting development is that the CDC (U.S. Centers for Disease Control & Prevention) is adding a new section to their website on pediatric CFS (finally!) and is actively seeking input from a wide range of stakeholders. Yes, you heard that correctly - the government is actually listening to input from outside sources! Yesterday, another mom, who heads up Speak Up About ME, and I had a teleconference call with several people from the CDC to give them input on what we thought was most important for their new pediatric webpage.  They were truly interested in our input, listened actively and asked questions, and invited us to e-mail any additional information and resources we had. I was so excited after that phone call that I couldn't nap yesterday! Finally, they are listening to patients and parents, actively including us in the process, and moving forward to address the horrible lack of attention to pediatric CFS. After my unsuccessful nap, I spent another 90 minutes writing up my suggestions, with links to more information, for the treatment section of the pediatric webpage.

So, that is why I am so exhausted and lacking in time or energy for more writing! But I am filled with hope. All of our advocacy efforts - letters, awareness campaigns, donations, testimony at CFSAC - is all beginning to pay off. Things are moving forward!  In addition, for several years now, we have seen significant movement forward in ME/CFS research - with more and better studies rooted in hard science digging into the mysteries of our illness.

It just all fills me with a tremendous amount of hope for our futures. This entire landscape has changed dramatically from when I first got sick 10 years ago. Then, the government was paying almost no attention to CFS, patients were not involved at all, and the few research studies being done all seemed to focus on psychological issues. True, we still have a long way to go before all medical professionals know how to effectively treat ME/CFS, but we are making progress and moving forward!

And now, with most of my obligations finished, I can finally turn my attention to the holidays and my family. Wishing you all a season of hope and joy! 

Movie Monday 12/10

Ah...it's been a whole week since I posted here.  Sorry about that.  I had a pretty good week, with just a 2-day crash (and emotional melt-down!) in the middle of it, but I've been very busy with the holidays approaching.  Tough time of year to fit in blogging!  I do hope to write more here this week, but we will see...I have a writing assignment to work on that has to take priority.

Anyway, we saw one movie this weekend:

Ken and I watched Hope Springs Friday night, and we both enjoyed it very much. You've probably seen the ads that are saturating TV lately. Meryl Streep and Tommy Lee Jones star as a married couple stuck in a major rut. Their kids have left home, they never touch each other (haven't had sex in 4 years!) and rarely talk. They are just sort of living parallel lives in the same house, and Kay is very unhappy. In desperation, she signs them up for a week-long intensive marriage therapy course run by a therapist whose book she read, played by Steve Carrell. Arnold is not at all pleased with these arrangements but he does finally agree to go. The story follows their week in therapy as they attempt to reconnect. There are some funny moments in the movie, especially in their awkwardness as they try to resume their physical relationship, but the subject matter is taken very seriously, too. In fact, I've never seen Carrell in such a serious role - he plays the straight man here. All in all, we both really enjoyed this story of an older couple rebuilding their relationship. All 3 actors were excellent in their roles.

Have you seen any good movies lately?

Movie Monday 12/3

My younger son was home sick for three days last week (crash caused by a viral trigger) which would normally mean lots of movies, but he was only in the mood for TV!  He was on a History Channel kick, watching endless episodes of Pawn Stars, Storage Wars, and American Pickers.

We had a very busy weekend but did find time in the evenings for some movies:

Saturday night, my husband and I watched Seeking a Friend for the End of the World, a very unusual sort of romantic comedy starring Steve Carell and Keira Knightley.  The movie opens with a giant meteor hurtling toward the earth, with a last-ditch effort to stop it having failed.  So, yes, the “end of the world” in the title is meant literally, as the entire population of the earth prepares to die in three weeks.  Carrell’s character, Dodge, is his usual sort of mild-mannered, dull guy who works as an insurance salesman and whose wife left him when the big news was announced.  Sounds sort of depressing, doesn’t it?  Oddly, though, it has its funny moments (mostly dark comedy, as you can imagine), and at its heart, it is a warm, touching love story.  When rioting chases him out of his city apartment (New York, I think), Dodge decides to set off on a mission to find his high school sweetheart who recently wrote him, saying he was the love of her life.  On his way out, he teams up with his quirky neighbor, Penny (played by Knightley), in order to save her from the riots.  They end up on a very strange road trip, encountering all sorts of odd things as people all cope in their own ways with the projected end of the world.  Overall, we really enjoyed it, and it has a great soundtrack.

 

Sunday night, our 14-year old son chose the movie:  National Lampoon’s European Vacation.  We recently introduced him to the classic comedy, Family Vacation, and he does enjoy silly comedies!  It was as expected – lots of goofy, predictable jokes but funny nonetheless.  Lots of laughs and not a single redeeming feature – just a bit of escapist fun to end the weekend.

Ken and I are kind of at a lost on weeknights, since we caught up with both The Good Wife and Treme on DVD.  We are enjoying Elementary and Perception.  And we watch Revolution, Bones, and Glee with Craig before he goes to bed.  Any other good TV shows we should check out?
 
Have you seen any good movies lately?