ME/CFS Case Definition - News and Views

There have been some startling and ground-breaking developments in the ME/CFS world in the past few weeks. I have postponed writing about them because I wanted to have the mental energy to consider all sides of the issues and to think it through myself. Things have been hectic here at my house, and I've had two rough weeks CFS-wise (probably because of my son's cold and sinus infection). I didn't want to delay getting this news out to you any longer.

So, here is a brief recap of the events of the past week or two. I have tried to keep things simple here, but you can click any of the links for more detailed information:

1. At the end of August, the US Department of Health & Human Services (HHS) announced that they planned to start a process to develop a clinical case definition of ME/CFS (i.e. a definition of the illness that doctors can use to diagnose patients). Now, this is clearly something that is desperately needed for ME/CFS patients; however, the proposal also named a single contractor, Institute of Medicine (IOM), to develop the criteria. This rang some alarm bells in the ME/CFS patient community because IOM has been working on a similar definition for Gulf War Illness (a chronic illness that has a lot in common with ME/CFS). There have been some concerns raised about this IOM process with Gulf War Illness, as described in the article linked to above.

2. That HHS announcement set off a complex chain reaction with the community of ME/CFS patients, doctors, and experts. Many people, fearing that IOM would approach this project without involvement from bona fide ME/CFS experts and patient input, participated in a letter-writing campaign to HHS to stop the IOM initiative. Apparently, all of the letters had some effect because two major things happened on the same day in late September:

• The HHS officially announced that the Institute of Medicine (IOM) would immediately begin a study on developing Diagnostic Criteria for ME/CFS, in response to a 2012 CFSAC (CFS Advisory Committee) recommendation and that the process will include stakeholder input, including patients and practicing clinicians. You can read the rest of the details about the process at the link above.
• A group of 35 of the top U.S. clinicians and researchers in ME/CFS sent a letter to HHS Secretary Sebelius, asking her to stop the IOM process and announcing that they had come to agreement on a single clinical case definition that's already been developed, the Canadian Consensus Criteria (CCC). This is huge and unprecedented! The 35 signatories include many of our most respected ME/CFS experts - names that you have probably heard over and over again through the years, including Dr. David Bell, Dr. Leonard Jason, Dr. Daniel Peterson, Dr. Nancy Klimas, and many more. Patients gave a collective cheer! For this group of highly regarded experts to come together and announce their solidarity behind a single case definition is a huge step forward. You can read their letter here and further discussion and explanation here.

3. As you can imagine, both of those announcements caused a lot of uproar, and individuals and organizations alike scrambled to consider all of the facts and decide what their position would be. Stand behind the 35 experts and the CCC? Support the HHS and the IOM process and trust that they will do what they say and include real experts and patients? Somewhere in between? Some of the 35 experts who signed the letter stand by it 100% and don't want the IOM process to move forward. Others feel cautiously optimistic that the IOM will conduct the process as stated, with stakeholder input, and that it might be beneficial, especially if the CCC is used as a starting point.

4. Through the Freedom of Information Act (and thanks to Jennie of the Occupy CFS blog), details of the IOM's statement of work (SOW) have been published and disseminated. You can read the details in this blog post that Jennie wrote. It does appear that IOM is saying all the right things with respect to stakeholder involvement and a solid process that uses existing data, criteria, and information.

5. Meanwhile, in social media and through e-mail, comments, opinions, and a fair amount of vitriol have been flying back and forth among patients. Most don't trust the government (with good reason based on past problems), many are applauding the 35 experts, some are attacking experts whose names didn't appear on the list. Unfortunately, emotions are running high and not all of the discourse is respectful and constructive; many people are being reminded of the rifts that occurred in our patient community during and after the XMRV research a few years ago.

6. After carefully considering all the facts and input from patients and their own Board, the CFIDS Association of America just announced its position on the HHS/IOM contract to develop diagnostic criteria for ME/CFS. Their statement provides a nice, concise summary of the facts, so it is helpful to read from that perspective. They are basically saying that they want to support this process as it moves forward, using their expertise and resources in the best way possible. They say that the CCC is a great starting point, that the IOM process could have value if it is done as laid out now, and that the IOM needs to be held to its commitments, with swift action taken if they fall short of their promises (to include patient input, to include ME/CFS experts, to use existing criteria, studies, and research as a starting point, etc.).

As for me, I am mostly in agreement with the CAA's statement. Some in the patient community no longer trust CAA because they feel that by working directly and closely with the government (CDC, NIH, HHS) the Association has turned its back on patients. I have a different view. I think that realistically, nothing major is going to happen for our illness unless the government agencies who control all aspects of health management (research, treatments, doctors, etc.) are on board. I feel that the best way to move forward into a better future - one that includes clear diagnostic criteria and effective treatments - is to work together with these agencies, in a cooperative and respectful way.

From a more personal perspective, I try to stay away from all of the anger, bitterness, and vitriol that crop up during controversies like this. Those kinds of negative emotions just make me sicker - often far sicker than even physical exertion - and I simply can't afford that. Of course, I am angry over past mistakes the government has made and its past ignorance of ME/CFS and lack of support. But I can't let that anger get the best of me and make me even sicker. That's in the past. More recently, there have been positive signs: CFSAC meetings incorporating more patient interaction and input, FDA workshops held to gather patient input, and even this very initiative. I honestly believe that most people involved with these processes - on all sides - believe they are doing the right thing. Though we have seen single cases in the past where an individual was doing something wrong and knew it (for instance, the infamous misappropriations of funds by the CDC), those are the exceptions. I firmly believe that taking sides and turning this into an emotional battle will not benefit anyone.

Look at all of this from the positive side - the HHS finally wants to develop a real clinical case definition for ME/CFS (and they are even calling it ME/CFS!). Wow. That is something we have desperately needed for decades. Indulge for a moment in a dream of how things could change over the next few years: there could be a single, agreed-upon definition - developed by patients and experts - that all medical personnel have access to and are educated about. Wow!

Yes, there are lots of potential problems along the way, plenty of challenges to face, and a lot of hard work to do, but let's take a moment to celebrate this momentous occasion and get ready to move forward!

Giving Up, Giving In

Giving up has a bad rap. We are taught - by our parents, by our schools, by society - to never give up, to persevere, to overcome whatever obstacles stand in your way. I have always been a fierce push-through-it kind of person which made adjusting to my new life with ME/CFS so much harder. This illness runs contrary to everything we have ever heard in our past lives: if you keep pushing through, persevering, never giving up...then you just keep getting sicker and sicker.

My first years with ME/CFS were defined by this crazy rollercoaster ride known in CFS circles as the push-crash cycle, especially before I had my diagnosis or learned about post-exertional crashes. I'd feel horribly sick - too sick to do anything at all - so I'd lie on the couch and in bed, unable to do anything. Then, I'd miraculously feel better and jump up and resume my normal activities again - even worse, I'd do more than normal in an effort to make up for those lost sick days. Then, of course, within a few days I'd be back on the couch again. Back in those days, the ups and downs made no sense to me. Now I know better, but it is still hard to go against all those societal norms and give up.

I had plans today, urgent plans. I "had" to go to the Post Office to mail my step mom's birthday gift so it will arrive in time for her birthday on Friday. I "had" to go to the Verizon store to change an erroneous bill and fix my sadly broken cell phone. I "had" to stop at the grocery store and grab a few items for the rest of the week.

But I woke up feeling awful - exhausted after 9 solid hours of sleep, still tired but too wired to sleep anymore. I thought I'd feel better after washing up and doing some gentle yoga. I procrastinated on getting my package ready and instead read my e-mails while watching the Today show. I kept telling myself, "I don't feel that bad." I tried to trim down my to-do list, thinking that I have to get to the Post Office but I could put off the other errands.

Finally, after putting in a load of laundry and noting the sore throat creeping in and the aching-all-over feeling, I gave up. After 11 years, I should be familiar with this sort of day - what I call a Plan B day - but it still took me several hours to finally admit that I needed to give up and give in. The world won't end if I don't get those things done. I decided I will just call and let my step mom know that her gift may be a day late.

You know it is a crash day when you finally decide to give up your to-do list and stay home and almost weep with relief. Maybe it was the very busy weeks and weekends filled with houseguests we've had lately. Maybe it's my son's cold triggering an immune system flare-up. Whatever it is, I've been struggling all week - told my husband yesterday I've just been feeling wiped out and sluggish in spite of getting plenty of rest - and it just feels so good to give in.

I've made another cup of herbal tea, piled up the pillows on the couch, and gotten myself horizontal. I have my book by my side and the Fall book catalog I never seem to find time to go through.

I am giving up and giving in. It is the right thing to do. It is what my body needs. Why is it so hard to do?

Movie Monday 9/23

Whew, another hectic, exhausting week and busy weekend. This soccer schedule is killing me - it's the first time my son has played for his school (last fall, he made the freshman team but was then out all season for knee surgery). Every day is either practice or a game, with usually two games a week (3 last week). The games are scheduled for 4:30 or 5:00 and are sometimes as far as an hour away! Whoever came up with the idea of starting a 90-minute game at dinner time was definitely not a mom (or someone with ME/CFS!). 4 pm is a bit early for dinner even for hypoglycemic me, but by 7 pm, I am ready to pass out!  Silly me, I thought I'd have EXTRA time to myself during the fall, with Craig not coming home from practice until 5 pm, but I didn't count on all these game days nor on having to pick him up myself some of the time.

OK, soccer rant is over! It's Monday and that means time to talk about movies. Though we had another set of grandparents visiting this weekend, I did get a few hours to myself to rest Saturday evening when everyone else went to a local college football game. I knew I couldn't manage that, especially the same day as my son's soccer game AND in the evening. So, I took advantage of my quiet time alone to watch a chick flick:

I watched Admission, a romantic comedy starring Tiny Fey as Portia, a Princeton admissions officer. It was perfect for my mood - light, funny, and warm - and better than I expected! Portia is an uptight Princeton representative caught up in her 16th season of reviewing applications from thousands of students (and turning down most of them). She encounters an old classmate, John, played by Paul Rudd, who runs an alternative school and introduces her to Jeremiah, a gifted student who dreams of going to Princeton. Oh, and John thinks that Jeremiah might be Portia's long-lost son that she gave up for adoption! Portia grapples with her very confused feelings while trying to champion Jeremiah in the admissions process, though his background is highly unusual and most of her colleagues think he is not "Princeton material." All the while, she and John are attracted to each other. Some of it is a bit predictable, as I tend to expect rom coms to be, but overall, I really enjoyed it and thought it was high quality. The acting is excellent - you can't miss Lily Tomlin as Portia's outgrown hippie mother!, Fey is both funny and endearing, and there are even a few surprising twists here.

Have you seen any good movies lately?

Young People with ME/CFS - the Long Road to Independence

By the time most kids hit 18, they are more than ready to leave home and get out on their own. In many cases, they've been struggling to gain independence for years already, pushing their parents away, copping that infamous eye-rolling attitude, and itching to get away from the rules and structures of mom and dad's house. Even for those kids who can't wait to leave home, college can be a difficult adjustment - learning to take care of yourself, finding out what your limits are, and dealing with the stress of juggling multiple classes, tests, projects, etc.

Now imagine all of those adjustments and struggles while also managing a debilitating chronic illness (plus a few long-term tick-borne infections!). I know that many of you don't have to imagine it - you lived through it or are living through it now. I was perfectly healthy until I got ME/CFS at age 37, so it is hard for me to think of being that sick during my college years (I definitely burnt the candle at both ends!). My own 19-year old son is going through all of this now, and I had a rare chance this morning to cram a little bit of mothering, caring, and advice into our brief time together at a doctor's appointment.

Overall, he is doing quite well in college - beyond our wildest dreams a few years ago! He just started his sophomore (second) year, he lives on campus in a single dorm room, he takes 3 classes each semester, plus an extra one each during the brief winter and summer sessions, and has so far maintained a B average (he was a straight-A student for most of his earlier years, but again, just being there in college feels like a miracle to us).

I met him at a doctor's office this morning (he goes to a college nearby) for a follow-up appointment for an injury that happened a few weeks ago. I could tell the moment I walked in the door to the waiting room that he was not in good shape. He looked exhausted - beyond exhausted in that way that only someone with CFS can truly understand - and seriously brain-fogged (again, it takes a CFSer to recognize that vacant expression!).

He told me that he had pushed WAY beyond his limits yesterday and had an equally difficult day ahead of him today. He woke up at 8 am yesterday to fit in 2 hours of math homework before his first class, took a quiz, went to a second class, then had a 3-hour Chemistry lab! That meant that he and his friends couldn't get started on their group project until almost 9 pm at night. Until he went away to college last year, he rarely stayed up past 9 pm!! He worked on the project until 2 am - classic late-night studies for a normal college student but a superhuman feat of impossibility for a kid with ME/CFS, Lyme disease, plus 2 other tick infections. Today, he has two quizzes scheduled, plus a lot more homework. He was so wiped out that he woke up and came directly to the doctor's office, without having time for breakfast or morning medicines - a real no-no for him.

He sounded totally defeated and kept saying that he had no choice - he HAD to get all of this done. I only had a half hour with him, but I tried my hardest to be supportive and remind him that he does have options. I encouraged him to talk to at least one of his professors about postponing today's quiz. He has an accommodations plan with the college and already spoke to each of his professors about his illness at the start of the semester. It has been hard for him to learn how to speak up for himself and advocate for himself.

He said to me today, "But a college student is supposed to just get everything done and be independent. I don't want to ask for special treatment and have him think I'm not capable." I gently reminded him that he is dealing with several very serious, debilitating illnesses, that his professors won't understand how it all affects him if he doesn't explain, that his accommodations are not special treatment but just a way to try to level the playing field, and that the Disability office is behind him. I encouraged him to explain to his professors how a late night studying or too many quizzes in one day affect him, how his brain just gets overloaded and stops working. He finally agreed to talk to one of the professors today about possibly taking the quiz tomorrow, so he can rest first.

Then I had him follow me to a nearby coffee shop, where I bought him a blueberry scone (his favorite!) so he at least had something in his stomach for his first class. I think I convinced him to ease up on himself and open up more with his professors. I hope the rest of the day will be easier for him. I'm so glad I happened to be able to see him this morning, right when he needed some support, though I wish I could have done more. It was hard to say good-bye and drive away.

This period of growing up and becoming more independent isn't just difficult for him; it's tough for us as parents, too. Like all parents, we hate to see our child suffer and want to protect him and keep him safe. He is only 20 minutes away at college and comes home every Sunday so I can refill his 6 overloaded, always-changing medicine reminder boxes. In between those brief visits, we try very hard not to interfere and to let him live his own life. We want him to experience all that college has to offer, including that growth toward independence. But it's a hard balance to maintain when your child has been ill for so long, and you are used to doing so much for him.

Until about a year ago when he started college, he was severely incapacitated for much of his junior and senior years of high school, due to starting his treatments for Lyme and the other two tick infections. We had to do almost everything for him, not because we were overprotective parents but because he was literally incapable of getting up off the couch much of the time (see How My Son Went from Couchbound to College for more info). We acted as his advocates, with both medical personnel and school administrators and teachers, fighting for his rights and refusing to take no for an answer. He was so sick senior year that he barely managed to graduate on time (with the help of home tutoring, exemption from all 4th quarter work and from most final exams, and working through the summer), so he had no extra energy for college or scholarship applications. I did all of that for him, except the essays, because we had no other choice and he so badly wanted to start college on time. And somehow, he did!

It's a hard transition for us, to go from doing so much for him, taking care of him, and advocating for him, to suddenly not even knowing what is going on in his day-to-day life. We try let him do things for himself and don't text him unless we need something specifically. I think he is doing very well overall - he loves college, loves being on his own, loves all the time with his friends. On days like today, however, it is hard not to just bring him back home and take care of him until he feels better!

It is a long and bumpy road to independence for both him and us, but we are grateful that he is on that road at all. Intellectually, I know that he will get past this tough period this week and be fine, but emotionally, I want to wrap him in my arms and take care of him. Old habits are hard to break. I know that all parents go through this struggle to some extent, but it is just so much more complicated for parents of kids who are ill or have special needs.

I am sitting on my hands so I can't text him...

Movie Monday 9/17

A day late (again) - my schedule has gotten very busy now that soccer season has begun for my son. I normally set aside afternoons (after my nap) for blogging activities, but now we are running to soccer games two days a week (picking up from practice the other days) then having a late dinner...and last week, we also had Parents' Night at the school! The good news is that I was able to go for the first time in years, and my husband didn't have to go alone. In fact, I need to leave to pick up my son in a few minutes...sigh...

Anyway, we had a very busy weekend with houseguests (my dad and his wife were visiting), but it was fun, and we did watch one movie on Saturday night when my son slept over at a friend's house:

We watched The Place Beyond the Pines, starring Ryan Gosling, Eva Mendes, and Bradley Cooper. Gosling plays Luke, a stunt motorcycle driver who travels with a carnival. When Luke returns to Schenectady and learns he has a one-year old son, he decides to leave the drifting, wild life behind and settle down. His new commitment to being an upstanding citizen doesn't last long, though, as a new friend in town convinces him to rob banks with him so that Luke can afford to support his son. Bradley Cooper plays a rookie police officer who chases after Luke during a robbery attempt. The two men's meeting not only has a dramatic effect on their own lives, but their intersection goes on to affect the next generation. I tried to choose a movie that would appeal to our disparate group that night, since it combines suspense and drama. I guess there wasn't enough action to keep my dad's attention because he ended up reading his Kindle (maybe he gave up before the bank robbery scenes!). My step mom liked it, though she didn't understand why there was so much profanity. Not sure what it means that I didn't notice that! I really liked this movie. It's a bit of a downer - sins of the father visiting on the sons, etc. - but I liked the ways that the characters' lives intersected and the domino effects down the road. It's a somewhat thoughtful yet suspenseful movie. Only problem is that none of us understood where the film's title came from! (Aha! Wikipedia says the name is the loose meaning of the name Schenectady, derived from a Mohawk word.)

Have you seen any good movies lately?

Time for the new fall TV season premiers this week! Which shows are you eager to return to or try out?

Comprehensive ME/CFS Research Initiative at Stanford

Cort Johnson has done it again - written a fascinating, complete overview on his blog of a critical initiative going on in the ME/CFS world. You can read the full article here, but I'll tell you about the high points.

Many of you have heard of Dr. Montoya's  breakthrough antiviral study that was published several years ago - he shows some amazing results in treating severe ME/CFS patients who'd tested positive for high levels of both HHV-6 and EBV with Valcyte. Some of the patients recovered so much that they were able to return to work.

Fast-forward to the present and, as Cort's excellent article explains, Dr. Montoya has now created a comprehensive research initiative for ME/CFS - that in itself is great news but making it even better is the fact that this initiative is at Stanford, the nation's #2-ranked medical school. The work done at Stanford has the potential to be widely recognized, shared, and certainly respected across the nation and the world.

Dr. Motoya has established a team of 21 medical professionals in a wide range of specialties - just to investigate ME/CFS. They are continuing the research that Montoya started a few years ago, investigating potential viral infections that might be behind ME/CFS, but also moving the research into new areas - looking at other infectious agents (including the bacteria that causes Lyme!), genetics, immunology, the brain, and the heart. In all, it sounds like a comprehensive research plan, investigating all aspects of our illness.

And it's STANFORD (did I mention that?)! The rest of the medical world will take notice.

This fabulous initiative at Stanford, combined with several other huge studies looking for immune dysfunction, biomarkers, and infectious agents in ME/CFS, gives me tremendous hope for the future - not just the future of our children but our own not-so-distant futures as well. I think we are on the brink of some discoveries that could change everything for people with ME/CFS.

I highly recommend reading Cort's entire article on the Stanford ME/CFS Initiative - it's all so exciting and hopeful! It also includes a video clip of a presentation given by Montoya.

Movie Tuesday 9/3

I wanted to resume my Movie Monday feature this week, then Monday quietly slipped by with the holiday weekend and the kids back home - oops! But, Ken and I did have plenty of time for movies this weekend, so here is Movie Tuesday:

With our oldest son away at college and our younger son invited to the beach with a friend, our weekend began early, on Thursday night, when he left for the beach directly from soccer practice. Ken and I had a quiet dinner for two and then watched Erased, a fast-paced thriller. Aaron Eckhart plays Ben Logan, who, as the movie opens, seems to be a normal single dad living in Belgium with his teen daughter. Ben goes to work one morning at his job as a security specialist and finds his entire place of business has vanished - the rooms are all empty and his co-workers are nowhere to be found. Soon an assassin is after he and his daughter, and they must go on the run while trying to figure out what happened to Ben's company and who wants them dead. As they struggle to stay ahead of the bad guys, Ben's own secrets about his past begin to come to light. This is a typical thriller - action-packed from start to finish with lots of suspense and surprises around every corner. It wasn't a perfect movie but is a good choice if you enjoy action and suspense.

Friday, Ken went golfing after work, and I had a couple of glorious hours to myself (after a long and exhausting day), so I rented a DVD I knew he wouldn't enjoy, Ginger & Rosa. Born on the same day in London, to mothers who are good friends, Ginger and Rosa are inseparable and grow up together. Things become complicated in their teens, though, as they both become involved in anti-nuke groups and Ginger becomes especially scared during the Cuban Missile Crisis. Rosa likes the drama and excitement of the protests and the people involved, while Ginger is truly frightened, with her fears growing as she listens to her radical father, Roland, spout his beliefs. Finally, something happens that tears their friendship apart, against the backdrop of the Missile Crisis. So, yes, this is quite a dark movie (which is why I watched it alone!) about the bonds of friendship amid the 60's anti-war movement. I liked it, though it is definitely a bit of a downer.

Sunday night, we watched The Company You Keep, starring Robert Redford and Shia LeBeouf, a political thriller which was definitely a two-thumbs-up movie! LeBeouf is a young reporter at a small newspaper in Albany, NY, who latches onto a story about a 30-year fugitive from the FBI's Most Wanted list who is finally caught. The woman, played fabulously by Susan Sarandon, was a member of the infamous Weather Underground, an anti-war group in the 60's that turned to violent means to convey their message. A security guard was killed when four of them robbed a bank, and the FBI has been unable to find any of them for over 30 years. As you've probably guessed already, Redford's character was a member of the same group and must now go on the run in order to protect his young daughter, with the reporter hot on his trail. Ken and I both really enjoyed this one - it's a smart, interesting plot and populated by a raft of top-notch actors. Our only minor complaint was that Redford (who is close to 80 now) and some of the other more mature actors are playing characters who should only be in their 50's - but, hey, it's his movie, right?

Have you seen any good movies lately?

Finding Joy in Everyday Moments

Sunset over Lake Ontario - Selkirk Shores State Park, NY

As I mentioned in my recent vacation post, I struggle with trying to lessen the stress of my everyday life. With a family to take care of, plus my inborn drive, I tend to be busy every moment - often doing two or more things at once! - and forget to take time for myself. Of course, with ME/CFS, that often results in making me sicker.

Both of our sons are spending the holiday weekend at the beach with friends, so my husband and I are enjoying a very quiet, low-key couple of days. I woke with a killer headache yesterday and a moderate crash from the day before (long story but my college son ended up in the ER the night before and I spent Friday driving him all around town to pick him up from campus, take him to a doctor, the drugstore, etc. Don't worry - he's fine)...anyway, despite the list of things I wanted to get done yesterday, I gave in and listened to my body for once and rested on the couch with my laptop.

After I did a few productive things online (hey, I said I'm working on it!), I thought about how my husband likes to just play around with his tablet after dinner in his recliner - he'll just surf the net, look for interesting stuff, watch videos, etc. I never just relax like that without a purpose! He's been telling me about the TED talks and how interesting some of them are, so I went to YouTube and looked through the list of TED talks. I came across one that sounded intriguing (and wasn't too long - baby steps!) and ended up really enjoying it. It's called, "Cloudy with a Chance of Joy," and it's just about looking at the clouds. The speaker is warm and thoughtful and funny, and I not only enjoyed the talk but it also contributed to this same line of thinking and gave me some more ideas for ways to slow down and make space for more calm and peace in my life.

Hope you enjoy it:



And here are some of my own favorite cloud photos (as well as the one up on top) - I plan to take time to look up more:

Lines in the sky

Sky full of ridges

Snow sky

Try it! Go out in your yard or on your deck, leave the electronics inside (except maybe for your camera), lie back, and stare at the clouds.

P.S. I would love to hear from you about any talks or videos you recommend - anything interesting, amusing, enlightening. I really do want to try to make more time for myself. Please leave links or descriptions in the comments section!

Vacation and Re-Entry

One of my favorite things in Maine - the beautiful coastline!

I am finally back home and back online. Sorry it has taken me a while to return to my blog, but the past week and a half have been incredibly hectic and exhausting. We moved my oldest son back into the dorms on Sunday, and my younger son started back to high school yesterday, so I finally have some QUIET writing time again! Here's what I've been up to and what I've been thinking about managing vacations - and normal daily life - with ME/CFS.

Our home away from home!

Let's start with vacation. We had a great trip - two weeks spent camping (we have a pop-up camper), first in Cape Cod and then in Maine, mostly in Acadia National Park (one of my favorite places on earth!). Camping with a trailer is a great way to travel for someone with CFS - you basically have your own little home with you all the time! We returned on a Thursday evening, did a few loads of laundry, unpacked and quickly repacked and left again Friday afternoon for a weekend with extended family.

From a CFS perspective, I did really well on vacation, as is usually true. This year, with beta blockers keeping my heart rate down to normal levels and the extra stamina and conditioning from exercising (cautiously) all year, I was able to do some amazing things with my family. We hiked up to the tops of mountains (small ones when I was along, but mountains nonetheless!), walked around quaint coastal towns, and went sea-kayaking for 2 1/2 hours! I hiked almost every single day of the trip. I know - incredible, right?

The trail goes up THERE?

How did I manage so much physical activity? Several strategies helped. In the morning, when I was along, we chose shorter, easier hikes and walks, and the kids (and sometimes my husband) did the more challenging, heart-pounding hikes in the afternoon while I napped. I always wore my heart rate monitor. On some of those uphill trails, leading to mountaintops, my heart rate would hit my AT every 5-10 minutes, and I would have to stop and sit and wait for it to come back down again. A bit tedious at times, but my family is wonderfully understanding and never complained, and I was thrilled to be able to participate in one of my favorite activities, hiking. I also discovered that it was best for me to hike in the mornings - usually my best time of day anyway - because of the dosing of my beta blockers. I take them before bed (that way, they can help with sleep and I wake up able to get moving right away). A few times, we tried an evening hike, and my heart rate was noticeably higher because my beta blockers were wearing off.

On top of Beech Mountain, Acadia Natl Park

I also stuck to my normal routines, no matter where we were or what we were doing. That means getting to bed at a reasonable time (because I can't sleep in the morning no matter how late I stay up!) and taking my daily nap. I started the daily afternoon nap as a preventative measure years ago, but I have found that it is absolutely essential for me and helps to prevent crashes. If we were driving in the car during the day, I had to nap in the car - difficult but not impossible. And, as I mentioned earlier, beta blockers are the #1 reason that I can be this active now - they keep my heart rate down to normal levels so that I can manage some moderate exercise without crashing.

I thought a lot about why I can't exercise this much at home. I have goals to walk 3 times a week and to do some light weights twice a week, and I have trouble meeting those goals. Some weeks, there's not a single day when I have enough extra energy for a short walk. I think the difference is all the other daily activities I must do when I am at home. Just the ordinary aspects of daily life (the stuff that healthy people don't even think about) are often too much for me at home - laundry, dishes, cooking meals, running errands, taking the kids to doctor's appointments, getting groceries...whew! Choose whichever CFS analogy you like best - spoons, energy envelope, etc; I use them all up on this stuff and have nothing left for exercise that I find pleasurable and that might actually be beneficial in increasing my stamina.

Relaxing around the campfire with my sons

I also think that stress has a role in this equation, too. On vacation, I have few responsibilities or pressures. Since we camp on our vacations, our trips are mostly digital-free zones (though my sons just recently got smart phones). I like to vacation this way - no e-mail, no Facebook, no blogs. This, coupled with leaving the to-do list at home!, results in a true vacation for me - no obligations, no worries, and hence, little stress.

The only two days that I crashed severely during this entire time away were the two days following a day of packing, laundry, etc. - the first day of our trip when we stopped at my sister's house (I had to go back to bed after breakfast which she definitely did not get) and the first day of the family visit, after unpacking and re-packing in just 18 hours. That is even more significant when you look back on how physically active I was during the rest of the trip! I hiked for over an hour many days, paddled for more than two hours, and those things didn't make me crash as badly as packing and racing around the house.

Sea kayaking near Bar Harbor, ME

So, of course, re-entry to normal life last week was rough. To make matters worse, we had just one week until school started, so my week was packed full of obligations - doctor's appointments every single day (many hours spent in waiting rooms!), driving my son back and forth to soccer practice and PT, unpacking, laundry, getting groceries, etc. Yeah, I was in bad shape last week! Just exhausted every day, short-tempered with my family because I felt so awful, and sleeping poorly because I did too much during the day - you know how that vicious cycle goes!

I don't have any answers here, just these observations. I don't know how to do less at home. I mean, certain things just have to be done, especially when you have a family, you know? Summer is always toughest on me, with my kids at home. Yesterday was my first day with them both at school, and it was such a relief! I was able to slow down, savor the quiet, rest as much as I needed to, and even begin writing again. I am hoping to use this time to get back into some healthier habits - resting more so I can manage more exercise (I know that sounds like a paradox but you understand, right?), spending more time with friends, lowering my levels of stress. I'm open to any ideas!

I hope you've had a good summer and are also looking forward to fall. Enjoy the vacation photos!

We saw many gorgeous sunsets in Maine.

Leave of Absence - August

Just wanted to post a quick note so that no one worries about me!

We have a crazy busy month coming up, with vacation (yes, we get to go!) and all the exhausting prep that goes with it, a big family gathering, and getting the boys ready for the return to school/college. So, I probably won't be posting much here in August. When we vacation, we camp and are mostly tech-free (that's part of the point) and once we get back we will be very busy, so I won't be checking in for a while.

For those of you who've been following our recent medical saga, my husband's eye surgery went very well and was the best possible outcome. He had no new retinal tears, no sign of retinal detachment, and the bleeding was just from a broken blood vessel connected to an old repair. A quick laser repair did the trick, and he is now recovering and seeing a little bit better every day. Thanks for your kindness and concern this past week.

We're still not exactly sure when we'll be leaving on vacation, and we need to come back a bit earlier than expected, but the doctor gave him the OK to travel, and we are thrilled that we will have our little getaway - we've waited 14 months for this!

So, I'll post again when things settle down here, toward the end of the month. Hope everyone enjoys a happy and relaxing August!

Movie Monday 7/29

So, our sons were gone all last week, sailing with their grandparents off the coast of Rhode Island, along with their cousins. I really needed the time to myself, though the week at home didn't turn out quite the way my husband and I had envisioned it. He is in surgery right now, for his eye, so he could only see out of one eye last week and had a bad cold as well (more on all that tomorrow, once we know more). So, we spent a lot of time relaxing with movies and TV:

On my last night alone, I watched Smashed, a movie about hard partying woman who gradually realizes that it's not all fun and games and she has a serious problem. Puking in front of your kindergarten students tends to have that effect. It was an interesting movie and well done, though somewhat depressing. She does seek help and eventually begin to pull her life back together but not without some significant bumps in the road. It does end on a hopeful note, but it's a serious and sometimes disturbing story.

After Ken got home from his trip, he and I watched The Impossible, a movie about the 2004 tsunami in Thailand. The story focuses on a British family - the parents are played by Ewan McGregor and Naomi Watts - who are vacationing at a beautiful, secluded resort when the tsunami hits without warning. This is a heart-pounding, edge-of-your-seat movie from beginning to end! The visual effects are just stunning, and seeing what this family went through is heart-rending and terrifying. We were both captivated by the movie from the first moments to the last.

With the kids away, Ken and I also caught up on some TV shows that we like. We watched the first few episodes of the new season of Perception, an excellent show about a man with schizophrenia who helps the FBI, played fabulously by Eric McCormack. We also watched a few recent episodes of Graceland, a new show about a group of law enforcement officers from different agencies, all living together in a California beach house and working undercover to put a dent in the drug trade. It took us a while to get into this very fast-paced show, but we are hooked now. And we watched all of the episodes so far released of Under the Dome, a new mini-series based on Stephen King's massive novel. Ken read it, and I didn't, but we are both enjoying the show, about a town that is mysteriously cut off from the rest of the world by an invisible but impenetrable dome.

Have you seen any good movies or TV shows lately?

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

Listening To Your Body

As most people with ME/CFS quickly learn, listening to your body is probably the most important thing you can do to improve your quality of life and prevent constant, unpredictable crashes. Unfortunately, it is also the hardest thing to do. Even after over 11 years with this illness, I am constantly relearning this important lesson.

I am alone this week - my kids are spending the week in Rhode Island, sailing with their grandparents and cousins - so the level of noise and chaos around me have quieted down enough that I can actually hear my body again! I had a really bad week last week. My husband was traveling, so I was on my own to get unpacked from our camping trip and get the kids ready for their trip. Now, they are 15 and 18, so they did their own packing and even loaded the car. But with them around, I still had plenty to do, plus two extra trips to the doctor for my son's ear infection, two trips to PT for his knee, many trips to the drugstore, and an exhausting trip to his school to turn in his sports physical forms (the main office is a long walk down the hall and up two flights of stairs, plus the front entrance was closed for construction!). Anyway, I won't bore you with all the details (really, there's more), but the bottom line is that I went way past my limits last week.

When I finally got back home on Saturday after dropping them off (a 4 1/2 hour return trip on my own, stuck in traffic), I was a mess. I completely collapsed and spent the next few days lying on the couch. It was such a huge relief to have no one to take care of but myself! I realized this weekend that I expend an enormous amount of energy simply taking care of food for our family - planning meals, going to the grocery store, cooking, cleaning up afterward (my husband helps with dinner clean-up). Realisticially, that probably takes up a large portion of the limited stamina I have available each day. It's important to me, though, to have healthy, tasty meals for my family, and I actually enjoy cooking, so I'm not sure that can change much.

I am determined, though, during this week alone, to listen to my body and stay within my limits. It's still incredibly difficult, after all these years. While I am attuned to the symptoms that are big signs of danger for me (sore throat, flu-like aches, exhaustion), there is a much louder voice in my head saying, "But you have to do XYZ..." And normally, there is an even more persistent, real voice next to me saying, "Mom, can you take me to...(fill in the blank)." I have learned some lessons over the past 11 years. I usually know when it needs to be a Plan B day. But I still tend to go past my limits almost every day.

The interesting thing is that my limits have greatly expanded from when I first got sick, but as I am able to do more, I still keep doing more than I should! Of course, in that first year, before I was diagnosed, I didn't know about post-exertional malaise or exercise intolerance, so I had no idea why I would feel fine one day and horrible the next. Back in those days, my crashes were severe, leaving me useless on the couch and often lasting for weeks. With treatment (correcting sleep dysfunction, beta blockers for OI, low-dose naltrexone, and Imunovir mainly), I have many more good days now, my crashes are mild and only last a day or two, and I am able to do much, much more than before.

All that is good, but the more I can do, the more I push past those limits and try to do more! I guess it is human nature (and certainly it is my nature!). I guess it's just never enough! I suppose even perfectly healthy people try to do more than they should. But I know it's been bad lately, and I need to refocus on staying within my energy envelope, as they say.

I think that is one of the toughest things about living with CFS: having to constantly, always be aware of your symptoms, your limits, your activity level, etc. It's mentally tiring to keep tabs on it all. In fact, in the first years of my illness, my mother worried constantly that I was "too focused on my illness." She thought I'd feel better if I could just get my mind off it. I suppose she probably still thinks that to some extent, even though she understands CFS so much better now. A normal, healthy person really can't understand what it's like to have to be so ever-vigilant.

Ah, well. Lots of musings and not many solutions in this post, huh? Do you have any tips on staying within your limits? I could sure use some!

Movie Monday 7/22

I have missed several Movie Mondays in a row, so I will do a quickie catch-up today. We saw a few movies as a family recently, including one in the theater! And this weekend, I have been alone (ALONE!!) and indulging in movies my family would hate.

We watched a couple of 80's classics on DVD with the kids:

Mr. Mom, starring Michael Keaton as the overwhelmed husband who tries to take care of the house and kids while his wife works (my husband hates these movies, TV shows, and ads that shows Dads as totally inept!). Craig enjoyed the humor in it.

The boys and I watched Risky Business, Tom Cruise's first big hit, where he plays a high school student who starts a prostitution business in his parents house when they go away for the weekend. Best line ever from an 80's movie: "I have a Trig final tomorrow, and I'm being chased by Guido the pimp!" Both boys, ages 15 and 18, enjoyed it very much, as I knew they would.

Jamie was away with friends one weekend, so Ken and I and Craig actually went OUT TO THE MOVIE THEATER! This is a big event for us. We normally get out once a year, when the new Harry Potter movie comes out (how can they be over?), but this was our second time in the theater in the past few months. We saw Now You See Me, and we all loved it! It features an all-star cast (Mark Ruffalo, Morgan Freeman, Woody Harrelson, and more). Four magicians/illusionists receive a mysterious summons; the result is a magic show that captures the attention of the entire world. Their first show in Vegas results in a massive bank robbery in Paris. The FBI is put on the case but are always two steps behind them. It's an original story that keeps you guessing right up to the very last moments and was perfect to see on the big screen, with all the cool illusions.

The next night, the three of us rented a DVD, The Dark Knight Rises, the latest Batman movie. Craig had already seen it with friends but wanted to share it with us because he said it was the best of all the Batman movies! It was very good - classic action/superhero movie with a fast pace, nonstop action, and plenty of twists and turns.

I got back home from dropping off the kids on Saturday afternoon and was totally wiped out. I have been indulging in girly movies each evening since then! Saturday night I watched Now is Good, starring Dakota Fanning as a 17-year old girl named Tessa who is dying of leukemia. She has a bucket list of things she wants to do before she dies, and her best friend is helping her, much to her father's frustration since some of the things on her list are dangerous and/or illegal. Then Tessa meets the hunky boy next door, and her life takes a dramatic turn. My husband hates sad movies, and I bawled my eyes out over this one! It was very good, Fanning was excellent in the role, and a good cry over fictional troubles is always so cathartic!

After crying so hard, I decided I needed something light and fun next, so I watched Party Girl, a 1995 film starring Parker Posey that was nominated for an award at the Sundance Festival. Mary, played by Posey, is the party girl of the title, living a carefree and drunken life, barely scraping together enough money for rent and her designer clothes habit by throwing wild parties and charging for admission and drinks. She gets arrested for one of these illegal parties, and her godmother bails her out and gets her a job as a library clerk. Though it is somewhat light and fun, the movie actually has some heartfelt emotion to it. It was the perfect antidote after crying over Now is Good!

And, continuing the tear-jerker festival, last night I watched The Boy in the Striped Pajamas, a movie adaptation of a wonderful book I recently listened to on audio (my review) about a young German boy whose father is a high-ranking Nazi official during World War II. His family moves to Auschwitz, and the boy - desperate for a friend to play with - befriends a boy his age on the other side of the fence. Their friendship grows, though as anyone familiar with the Holocaust knows, there can't be a happy ending. So, another crying bout last night, but it is an excellent movie. It was also great on audio.

Have you seen any good movies lately?

Up and Down and All Around

Whew, I feel like I've been through the spin cycle a few times. Sorry I haven't posted here in a while. This summer generally has just been so busy and exhausting for me - this past week in particular. Thanks to those of you who checked in on me - I was touched by your thoughtfulness. So, the highs and lows...let's start with the highs...

My husband and sons skipping stones along Lake Ontario at sunset.

We spent four days traveling and camping our way to the far northern reaches of New York state for my college reunion. As you know, I was worried about managing the trip and the reunion and thinking I might feel left out among the healthy friends of my youth. I shouldn't have worried. I had an AMAZING time! We mainly went for the reunion at my old sorority house. It was the 25th reunion for the year behind me, and they organized a massive group of friends from several surrounding years (from '87 to '90). There were probably 30-40 of us from those years who showed up, plus a smattering of alumni from recent times and from the 70's and 60's.

It was soooo much fun! Though I hadn't seen most of them in 26 years (other than letters at first and Facebook more recently), it felt as though no time had passed at all! We were all so happy to see each other. We reminisced and told stories and laughed and laughed and laughed. My face hurt from smiling and laughing so much!

I didn't feel left out at all. Most of them know about my illness from Facebook (I don't talk about it much among my friends and family on Facebook, but I do occasionally mention it, like on Awareness Day), so I didn't feel like I had to explain anything. There were lots of chairs on the porch, so I wasn't the only one sitting. And when I got tired of standing after a group photo, I just plopped down on the stairs - a couple of my friends joined me and the others moved down to the bottom so we could still talk face to face (I really hate being the only one sitting at a party and staring at people's bellies all night). Although most people were drinking beer or wine, I wasn't the only one drinking water, and - unlike when we were students - drinking was not the center of attention!

The only thing I missed out on was going out downtown (it's a small town) and dancing until 2 am Friday night! The women from our classes went out en masse, took over some of our old bars, and partied like it was 1986! They even went out to The Bagelry (an amazing place!) at 2 am for after-hours pizza bagels, just like the old days. So, I missed all that, BUT...I did manage several hours of socializing with everyone on the porch at the house both Friday and Saturday evenings, which was an amazing feat for me. I think all the laughter counteracted the exertion!

A big shout-out to my incredible family because I never could have managed this without them. We enjoyed camping, and it gave us a nice respite from the crowds of laughing, shouting women! My husband and my two sons were great sports, hanging out while I caught up with my friends (there was one other husband and one other teen for them to hang out with!). Everyone kept saying how incredible it was that two teen boys were so patient and thoughtful. I'm lucky to have all three of them!

Oh, yeah - the bad stuff. I don't want to dwell on that now that I am smiling thinking about the weekend. It's just been an exhausting and stressful week for me. My husband has been out of town, and the boys and I have had just 3 days to unpack from the last trip, clean up the house, and get ready for another trip. My son got an ear infection over the weekend, so we ended up making two trips to the doctor's office, 3 trips to the pharmacy, plus all the other errands, etc. Then my husband had a medical scare last night, 2000 miles from home (everything seems to be OK for now). Whew - just feeling totally wrung out right now.

Back to the positive side...one more big, exhausting day for me tomorrow, packing up and driving the kids to their grandparents' house, with a stop on the way at our Lyme doctor's...and then...I get 2 days all to myself (by myself!!) and another 4 days alone with my husband. I have big plans - to rest and recuperate!

Here's a photo from the weekend - that's me in the front, holding the Phi, with a big smile on my face!

Just. So. Exhausted.

I had good intentions this week to write a couple of in-depth blog posts, but I am still struggling - every day - just to get through the day and do all the necessary stuff for daily life.

My youngest son is off his crutches now, in PT, and feeling great. I no longer have to wait on him, fetching food, ice packs, video games, etc...BUT now that he's back on his feet, he wants to make up for lost time with his friends. I spent much of the week ferrying him around town - picking up his friends, taking them to the pool, and the driving range, plus he and I had a bunch of appointments. Lots of driving time this week. We had a houseful of teens here on the 4th of July, so I spent much of the day cooking!

So, I woke up this morning feeling totally exhausted. I really, really wanted to take a walk before it got too hot this morning, but there is no way I could manage that today. I am resigned to yet another day of feeling exhausted. Sore throat and aches are creeping in, too.

I think my other problem is that with the long days, I am waking too early. I always wake as soon as it starts to get light out, despite room-darkening shades and an eye mask. I can usually manage to stay in bed, dozing lightly, until about 8 am, but that is it. So, I suppose I need to get to bed earlier, but I already head upstairs at 9:30 pm! And I really enjoy my little bit of reading time before lights out.

Didn't mean to write a whiny post - just trying to explain why I haven't been writing much lately. Soooo worn out...

Disappointed, Again

I had a great plan for today. First, this week is supposed to be my Anti-Procrastination/Catch-up Week - I decided on Sunday to set aside this week to get all the things done that I have been postponing for too long - the phone calls, e-mails, etc. that have been on my to-do list for far too long. And today, I was going to jump into that project. I went to bed last night feeling relatively good (for night-time) and motivated to hit that list today. I've also rededicated myself to trying to lose a couple of pounds and slim down a bit - my sweet tooth has been taking over lately! It's becoming super-hot and humid here in Delaware now, so my plan was to take an early morning walk (i.e. 9 am) before it gets too hot. So, I got up this morning, got dressed in cool, wicking shorts and shirt, ready for my walk.

So what happened?

I have a killer sore throat and a sore mouth, too. I suspect I've got another case of thrush, which crops up periodically ever since my 3-year long Lyme treatment. It's not bad enough yet to look really bad, but these are my early warning symptoms. Of course, the sore throat could "just" be a typical CFS crash, but my tongue hurts, too. So, I am taking it easy and saving what meager energy I have (I do still have to make breakfast for my son and his two sleep-over friends, run to the farm to pick up our weekly veggies today, and make dinner  tonight). I am also taking lots of oregano and olive leaf (both potent anti-fungals) plus extra probiotic.

I should be used to this kind of last-minute change now, used to the disappointment of not being able to do what I want to do. In fact, I even came up with a name for days like this - it's a Plan B day. But, after 11 years, it is still disappointing to have to give up my plans. Despite how bad I am feeling (the aches are creeping in now, too), I am still yearning to take that walk in the sunshine and tackle that to-do list. sigh....

I know, I know. I'm resting.

May 2013 CFSAC Meeting Videos Posted

CFSAC has posted videos from its most recent meeting, held on May 22 - 23, 2013. Here are all the links (copied from an e-mail, so I don't know what the formatting will look like):

CFSAC Spring 2013 Meeting
(I always find the Public Comment periods interesting, and this meeting also included - for the first time - public Q&A sessions)

Welcome & Call to Order - Day 1,  May 22, 2013, 9:00 - 10:30 AM

Public Comment on Day 1, 10:45 AM - 1:00 PM.

Approve Prioritized Recommendations List - Day 1, 1:00 - 1:30 PM.

Determination of Medicare Coverage of Test and Treatments - Day 1, 1:30 - 2:30 PM.

Public Question & Answer on Day 1, 2:45 - 3:15 PM.

Committee Discussion and Plans for Day 2, 3:15 -- 5 PM.

Opening Remarks on Day 2, 9:00 - 10:15 AM.

Health Insurance Marketplace - Day 2, 10:15 - 11:00 AM

Public Comment on Day 2, 11:15 AM - 12:15 PM

Public Question and Answer on Day 2, 1:30 - 3:00 PM.

Committee Discussion on Day 2, 3:00 - 3:30 PM.

Committee Discussion (Part #2) on Day 2, 3:30 - 5:00 PM

Mixed Feeling About Reunions

I've been on an emotional rollercoaster lately. The silly reason? A bunch of my old friends are all going to our college reunion this summer. One friend started a Facebook event to see who was planning to attend, and I watched the enthusiastic replies pile up with envy. Literally dozens of the women who were in my sorority are all planning to go back to campus in July for this summer's reunion. The two colleges in town hold a reunion every summer, but this is the 25th for the girls who were one year behind me, including many of my close friends.

Right from the start, I felt like there was no way I could go to the reunion. For starters, I went to college in the middle of nowhere in the very northern reaches of New York state, north of the Adirondacks and not too far from the Canadian border. So, even if (hypothetically) I could afford a plane ticket, the nearest airport is still a 3 hour drive away from our college town. The logistics tortured me: I could fly into Syracuse, rent a car...no then I'd be too worn out by the time I got there. OK, I could get a ride with a friend from Syracuse...no, then I wouldn't have my own car so I could go rest whenever I need to. And even if I could figure out how to get there, how on earth would I manage the many hours on my feet, as all my friends  - there for a wild girls' weekend - walked into town and stayed out until 2 am? I considered and discarded various options and finally just gave up.

But as I watched the excitement build among my friends, I felt so left out. How do I explain to all of them why I can't make it? Just telling someone you have a chronic illness doesn't cut it - how can anyone possibly understand all the restrictions we live with every day? Many of them are staying in a group of townhouses they rented together.

Then I started chatting with a friend of mine from the sorority who graduated the same year as me. We've become even closer recently, since finding each other on Facebook. She said she was bringing her daughter with her to alumni weekend and that she can not drink alcohol because of medical problems either. She got me thinking - here's someone who's going to go back but isn't going to do the wild weekend thing....

I finally came up with a workable plan and made reservations! Our whole family is going up there, with our camper, making it into a mini vacation (which we desperately need anyway). I reserved a spot at a campground 25 minutes from town (in the lovely Adirondack foothills). My husband will do all the driving, I'll have my comfy camper to rest in when I need to, and I can make a trip or two into town to see my friends for a limited, manageable amount of time.

I'm so excited to finally be going, but a part of me is still worried about what it will be like to stick out like a sore thumb. The thing is that I was a bit of a party animal in college! I had crazy energy back then - got a chemical engineering degree, was president of my sorority, and spent my weekends going wild with my friends. I drank way too much back then, danced for hours, sang/screamed until I was hoarse, and stayed up all night.

Almost all of them - except that one friend - are going to alumni weekend on their own, without families, for a "girls' weekend." I know they'll be ready for a wild weekend of drinking, dancing, singing, and having fun. I used to be the life of the party, ready for anything. This time, I'll only be able to manage a couple of hours at a time, no alcohol, no dairy (the wine and cheese party Friday should be fun!), no staying up late. Going downtown to our old hang-outs is definitely out - I'll be lucky if I make it until 9 pm!

My 30th high school reunion is also this summer, and I am almost relieved that I definitely can't go to that one! We will be away on vacation at that time. I did go to my 20th...just months after finally getting a diagnosis for my mystery illness. That was definitely strange. I wasn't even comfortable with having a chronic illness yet myself, so explaining it to people I hadn't seen in 20 years was just plain weird. It's hard to know what to say when someone gives you a big hug and says, "You look great! What have you been up to?" Uh...lying on the couch and getting blood tests?

Ten years later, at least I am more comfortable - and more happy and settled - in my life with chronic illness, so that helps. The other thing that helps is social networking. Many of the old friends I will see at my college reunion already know I have CFS because we've been in touch on Facebook. Of course, they don't understand the extent of it or how restricted my life is. In fact, I wished an old college friend a happy birthday yesterday, and she replied how much she enjoys my Facebook posts and how busy I am! Um, yeah. How do you respond to that?

So, I just have a lot of mixed feelings. I am very excited to see everyone again and to show my kids around my old college campus and the town. That one friend and I both feel better knowing the other will be there, so neither of us will be the only one not partying - she told me, "It will be wonderful to have a fellow-mellow-sober alumni to share the experience with!" Love that. So, I am mostly excited, but I know it will be tough to tiredly head back to our camper when all of my friends are just getting started for the night. I'm also not looking forward to the explanations. There's a fine line between helping an old friend understand and not making others feel uncomfortable or pitying.

But I am going! That alone feels like a triumph.

Well, I feel better just talking it out - thanks for listening!

(P.S. Just to save you the trouble, I generally only "friend" people on Facebook that I know in person, close friends and family - otherwise, it just becomes too much for me to keep track of. But I'd love to get to know all of you here on the blog, so feel free to leave a comment!)

Movie Monday

Well, we made it through the first week of Craig's post-op recovery. As I mentioned in my last post, he is doing great - much better than expected - and avoided a CFS crash completely. A miracle!

He is still mostly immobile, though he can get around the house a bit on crutches. So, we have been watching a lot of TV, but not as much as after his last two surgeries. Since he's feeling so much better, he's been mostly playing video games with his brother and some friends who've visited.

So, we watched just one movie last week, a classic 80's comedy, Animal House. Believe it or not, I was a teenager in the early 80's and had never seen it! It was, of course, exactly as expected - goofy, sometimes raunchy, comedy. Lots of fun watching John Belushi's antics and laughing at the craziness of the Delta house. Funny thing is that there was a fraternity on my college campus EXACTLY like the fraternity in Animal House. They used to throw furniture and TVs out of the third floor windows for fun (and that was one of the milder things they did). So that was a fun distraction.

Mid-week, a DVD we'd requested from the library finally came in, the fourth season of In Plain Sight. Since there's only one copy of each season in our entire state library system, and there is usually a waiting list, we are trying to watch the entire season in one week! Fortunately, the kids like this great series about the Witness Protection Program as much as my husband and I do, so we've been flying through the episodes. The show has interesting cases each episode but also a great sense of humor. We've set everything else aside for the time being, though my husband is very eager to start watching one of his Father's Day gifts, season one of The Game of Thrones!

Oh, and Ken and I did have one hour to ourselves when the boys had friends over this weekend, so we watched the pilot of Graceland, a new TV show about a house in southern California filled with undercover government agents from FBI, DEA, and Customs - seems like a great show so far!

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 at my book blog.)

Post-Op Recovery

Well, I think I am finally recovered from my son's surgery - ha ha. I know that sounds strange (maybe not to you guys), but the two-day ordeal at the hospital took a lot out of me. This week has been a lost cause - I've been wiped out and using all my limited energy to take care of him during the day. I felt good on Wednesday and thought I'd finally gotten past it, but then I woke up Thursday feeling awful - very achy and sore throat. I had used my newfound energy on Wednesday to go to the grocery store AND to my library's monthly noon book discussion (I know, I know - I am living a wild life here!) Guess that was too much for me. So, once we got back from the doctor's office yesterday, I rested the rest of the day. I've been taking long naps in the afternoon. Hopefully, I'm past the worst of it now.

As for my son, he is doing great, and we are amazed - and grateful! The difference between this knee surgery and his first two is like night and day, and the odd thing is that this was the more extensive one. The surgeon actually had to make a full incision; the first two surgeries were just arthroscopic. The first surgeries caused a severe CFS crash each time, lasting 3-4 weeks. His CFS is usually mild and completely controlled by Florinef, so we were surprised when he was so totally wiped out for a month afterward.

So, why is this time different? I think I've figured it out.

All three times, we printed this great article on surgery and CFS and handed it out to the surgeon and anesthesiologist, and all the doctors were very accommodating each time. They were familiar with various types of Orthostatic Intolerance (OI), they chose anesthesia that was better for someone with OI, and they made sure to give him a saline IV.

This time, however, his surgery was delayed for 6 hours and he ended up having to spend the night in the hospital. This inconvenience turned out to be the best thing that could happen! They kept him on a saline IV all night long, and I'm pretty certain that is what made the difference! Our older son used to get weekly saline IV's to treat OI, so we know what a dramatic effect they can have on someone with OI. The anesthesiologist also explained to me this time that ALL types of anesthesia have some vaso-dilating properties (very bad for someone with OI as dilating the blood vessels makes it even harder for us to circulate enough blood to brain and heart), so they chose the least vaso-dilating but couldn't avoid it altogether. I suspect that the extra saline IVs not only helped to increase his blood volume but also helped to counteract the vaso-dilating effects of the anesthesia.

So, after the first two surgeries, he was totally wiped out for a full month - just lay on the couch, watched TV, and didn't have the energy to get up even when his knee pain began to subside (you know, the basic CFS crash). This time, by the second day post-op, he was sitting up, talking animatedly, and playing video games. He even had a friend over just a few days post-op to play games with him! Even better, because he isn't crashed, his pain is much better, despite the fact that it was more extensive surgery and should be hurting more than before. He's already started to reduce the dose on his pain killers; after the first two surgeries, he stayed on the maximum dose for two full weeks.

All of this is just amazing to us...and wonderful! Lessons learned: not only to share important information with the doctors ahead of time, but request extra saline IV's (at least 2 liters) - the lost sleep due to the overnight in the hospital was more than made up for by the extra saline. Now I just need to recover - maybe next time we'll ask for a saline IV for the patient's mom, too!

Movie Monday 6/10

Whew - a long and difficult week here - school ended on Thursday for our 15-year old son, and he had knee surgery on Friday. I knew it would be a long day for all of us, but it turned out even longer than we'd anticipated - a real marathon for someone with ME/CFS! He was scheduled for surgery at 11 am, so we got to the hospital at 9 am, as directed. There was some kind of emergency involving our surgeon, and he never got to our son until 5 in the evening! By then, he'd been without food or water for almost 24 hours, and we were all exhausted. He ended up spending the night, and we had another long day at the hospital on Saturday, trying to get him discharged.

So, not much time for movies last week, but my husband and I watched a DVD Thursday night while our sons were out with friends:

We watched The Oranges, starring Hugh Laurie (of House fame), one of our favorite actors. This is a somewhat quirky movie, about two families in East Orange, NJ, who have lived across the street from each other for decades and are close friends. Close that is, until the husband in one family (Laurie) has an affair with the 24-year old daughter from the other, which sends all of them into chaos. There are lots of funny moments in the movie, but it is also sincere and heartfelt, delving into issues of family, friendships, and happiness. It's fun, lively, and entertaining with a talented cast.

Have you seen any good movies lately?

Movie Monday 6/3

Another week gone by without much blog posting - so sorry for that! Things were crazy busy here last week. My oldest son came home from college (victorious after a great freshman year!), and our house was filled with college students and friends old and new all week. It's been a lot of fun....but also lots of cooking for me! Today, he started his one class for summer session (commuting to school every day for 2-3 hours of Calculus), my younger son has a hectic week of final exams, and I have my last few hours of quiet solitude until September! Friday, my younger son has his third (and hopefully, last) knee surgery. So, another busy week.

We did have time for one movie last week:

Saturday night, my sons had friends over for a movie night in the basement, so Ken and I watched Promised Land, a fairly new release starring (and written by) Matt Damon and John Krasinksi (of The Office fame) about a current hot topic, natural gas and fracking. Damon plays Steve, a guy who works for a giant natural gas corporation. His job, along with his partner, played by Frances McDormand, is to travel to small towns where there are natural gas deposits and convince all the land owners to lease portions of their land to the company so they can drill there. They travel to a rural Pennsylvania town and find they have some opposition: a high school science teacher, played by Hal Holbrook, who speaks out against the risks of fracking, and an environmentalist, played by Krasinksi, who tells the townspeople how his own family farm was ruined by polluted water caused by fracking. From this, it sounds like simple good vs. evil, with Steve respresenting the evil, greedy corporation, but he actually loves his job and believes he is helping these small farming communities to survive by bringing them some much-needed income; he saw his own farm town in Iowa die out after a local factory closed. And, there is a pretty love interest, of course, played by Rosemarie DeWitt whom both Damon's character and Krasinsksi's character are interested in. As you might imagine from this description, it is somewhat political, as this is such a hot topic right now, though the film remains fairly neutral and tries to present both sides. It was an interesting movie, with a fabulous cast that was fun to watch. Not a great movie, but good entertainment for a Saturday night.

We've also been catching up on TV shows with Jamie since he got home - he and I watched the end of the season of White Collar, he watched the finales of The Office and Grim (season finale), and the whole family has been catching up on missed episodes of Revolution.

Have you seen any good movies or TV shows lately?

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