Movie Tuesday 11/30

Oops...I totally forgot Movie Monday yesterday.  I don't know how I could have overlooked it...maybe something to do with the 400 e-mails and all the urgent tasks waiting for me after vacation.

Re-entry into the real world has been tough, as always.  I couldn't get to sleep last night because my brain was spinning with to-do lists, things to remember, drafts of things I need to write, etc.  So, as a result, I felt pretty crappy today and spent the day on the couch (though still working all day on the laptop - a mistake, I know).  I just cancelled out on dinner and book group tonight with my two closest friends.  I know it was the right decision because I feel more relief than disappointment (even though I love those evenings out!).  So, I'm back here on our saggy couch, having shared take-out pizza with Ken and the boys, still very achy and knowing I made the right choice.  Looking forward to watching Glee tonight (I'm a new convert) and going to bed early.

So, obviously not a lot of time for movies while on vacation last week (none in fact), but we did watch one before the trip and one this weekend:

• While Ken was in Europe, I watched Dirty Rotten Scoundrels with Jamie and Craig, that classic silly movie starring Steve Martin and Michael Caine.  They loved it, as I knew they would!  We've been watching a lot of movies featuring scams and capers lately.
• This weekend, Ken and I watched The Girl with the Dragon Tattoo, which I had seen before at a little independent theater with my neighbor and book group buddy.  Ken recently read the wildly popular 3-book series, so I knew he'd enjoy the movie.  Both the books and the Swedish movies are excellent, though they are quite disturbing at times, as they include some gruesome murders and brutal rape - not for everyone.  I can't imagine the Hollywood versions could be any better - but I'm sure I will see them when they come out!

Have you seen any good movies lately?

Laura Hillenbrand in the Washington Post

I know I have already posted lots of links to articles and interviews with Laura Hillenbrand, author of Seabiscuit and her new book, Unbroken.  Maybe you're getting sick of reading about her, but this new Washington Post article is just too good not to pass along.  It focuses heavily on her life with ME/CFS, describing in detail what her daily life entails and the restrictions she lives with.  It is very well-written and brought tears to my eyes.

Hurray for Laura Hillenbrand!  Not just for writing two incredible best-selling books but also for being honest about her illness and challenges and helping to bring CFS out of the closet and into the public eye.  She is an inspiration.

Thanks to Dominique for sending me this link!

ME/CFS in Newsweek!

Both XMRV and Laura Hillenbrand continue to fuel increased coverage of ME/CFS in the mainstream media - hurray!

Here's an article that appeared in Newsweek on ME/CFS and XMRV that focuses on how ignored the illness has been in past decades.  Good stuff!

A Wonderfully Relaxing Vacation

We're back!  I am pleased to report that I managed the trip very well, felt good most days, and thoroughly enjoyed it.  I'm almost embarrassed that I was so anxious about the trip...except that I've been on other family vacations where those anxieties came true!

This trip started out just as bad as I'd feared.  That first day, traveling all day, was even worse than I'd expected.  I was still badly crashed, as I'd been for weeks.  I can normally handle getting through airports OK, but last Saturday, just the walk to our gate left me in tears (I don't normally need a cart and we were running too late to wait for one).  I had no physical stamina at all.  When we arrived in Jamaica, we had to walk a long way and wait in line to get through immigration and customs.  When we got through, my mom ran up to me and hugged me, saying, "I've been so worried about you!  Did you manage the trip OK?"  Wanting to be a good sport, I tried to say, "I'm fine, Mom," but I started crying again!  I just felt so overwhelmed and exhausted.

Fortunately, everything improved from there on out.  I ended up feeling quite good the entire time we were there.  The weather was perfect - low 80's with a nice breeze, 70's at night - and the scenery was gorgeous.  Of course, it helped that I had no responsibilities at all for 6 days!  No cooking, shopping, laundry, dishes, or schedules to keep.  I walked a lot more than I was used to, just getting from the room to meals or to the beach and back, but with no stress at all and no energy needed for the usual daily tasks of life, I managed fine.  My family was very understanding, too.

I settled into my own little routine, spending mornings on the beach on a lounge chair, going out on the snorkeling boat with my family at 11:30 am (just for the ride at first), a long nap in the afternoon, and meals with my family either at the buffet or one of the restaurants.  It probably helped that the four of us were in bed by 9 pm every single night!  In fact, I think that helped a lot.  I often woke at 7 am or earlier (that's what CFS does to Jamie, Craig, and I), but I usually stayed in bed until 8 am because I didn't want to wake the boys.  So, almost 11 hours of sleep a night, plus naps!  No wonder I felt good.

After a few days, I was feeling well enough to even be a bit more active.  My mother's wonderful husband, who was a competitive swimmer in college and is SCUBA certified, offered to basically pull me along with him while he snorkeled, so I wouldn't get tired swimming.  So, I held his hand and got to enjoy the amazing underwater sights along with my kids!  He was a really good sport about pulling along my dead weight, and on the next day, I even tried a little kicking and paddling to help out (that's me in the orange mask in the water).

Staying out of the sun (because of my Lyme meds) was a challenge, but I managed that OK, too.  Each morning, I covered myself in SPF 100 sunscreen, I wore my big sunhat everywhere plus a long-sleeved sun shirt while walking and a rash guard shirt while in the water, and I tried to stay in the shade whenever possible.  I also cut my dose in half while I was there, so I'm sure that helped, too.

I absolutely love the ocean, and it was so warm in Jamaica!  I loved sitting on the beach under the palm trees looking at the gorgeous views or floating in the warm water with my kids.  As a bonus, being in the water is great for OI (as long as it's not hot water!), so my stamina was better than normal - I was able to play Frisbee with my sons in the ocean, enjoy snorkeling, and float down the "lazy river" with my niece and nephew.  All in all, it was a wonderful week, relaxing and enjoyable.

Now, it's back to reality.  Yesterday was a flurry of grocery shopping, unpacking, laundry, cooking.  I stayed up too late last night and woke too early this morning, so I'm pretty exhausted today - almost nap time!  I've been thinking, though, of how to extend that relaxed vacation-feeling into my daily life.  I am definitely going to try going to bed earlier and also making time for something relaxing and enjoyable each day.  Wish me luck!

I hope everyone (in the US) had a nice Thanksgiving holiday!  

Laura Hillenbrand Today Show Video

Hurray!  The Today Show finally televised its interview with Laura Hillenbrand today (though there was still a lot of coverage of the royal engagement!).

The focus of the piece is on her new book, Unbroken, (as is appropriate), but they also emphasize Laura's illness and mention CFS by name!  True, the name is horrible, but interviews like this can help the public to understand how serious it really is.   You can watch the video of the interview online.

I can't wait to read her book!

Laura Hillenbrand to Appear on Today, Take 3

Almost forgot...here's the latest:

TODAY SHOW, NBC: Feature on Laura Hillenbrand and Louis Zamperini, Friday, November 19, 8:36 a.m.

I've watched for 3 days now (I usually watch some of it anyway).  Let's hope it makes it on the air tomorrow!

Fear of Fun

(aka Vacation Anxiety)

The reason I haven't been posting too much of a personal nature is because I have been completely overwhelmed with anxiety over an upcoming Family Vacation.  That is, a trip with my extended family over the holiday next week.  The last time I went on a week-long vacation with my extended family, I had the most severe relapse of my nine years with CFS, couldn't get out of bed for days, and wasn't speaking to anyone by the time I left because I was so upset by the way they all ignored how sick I was.

I was not in favor of this upcoming trip, but my mother insisted.  She says it's her retirement gift to herself.  Everyone else is so excited they can't stand it (except my husband who knows my challenges intimately).  So, on top of everything else, I also feel horribly guilty that I'm not looking forward to this trip and that I'm not feeling more grateful.  After all, my mom is treating us and my sister's family to this expensive beach resort in Jamaica - what kind of a freak wouldn't want to go, right?

Besides that horrible past experience, I have been obsessing over every aspect of the trip:

• How will I manage the 4-hour plane trip and 90-minute shuttle bus ride?
• What if my room is far from the restaurants, beach, etc. (that happened on yet another family trip and I barely made it to meals)?
• How will I cope with a week on a tropical beach when I can't be in the sun for 10 minutes without getting a painful burn (and sunscreen doesn't help much)?  (due to Lyme treatment)
• How will I cope with a week's worth of conflicts when my mom wants to eat meals hours later than I need to eat?
• How will I manage with so many nights in a hotel room (I sleep horribly in hotels)?
• And on and on and on...

I've still been feeling pretty bad this week, so that just adds to my worry.  Ken gets home one night and we leave first thing the next morning, so I'm also worried about getting everything ready on my own.  And, of course, there is some resentment over all that I won't be able to do that I would love to do - enjoying the sunshine, spending hours playing on the beach and in the ocean with my kids, doing all sorts of active things at the resort, even staying up late to enjoy my family's company and being able to enjoy a drink once in a while.

See what I mean?  I'm driving myself crazy, plus I feel like an ungrateful, bitter daughter.  I usually pride myself on my optimism and positive attitude, so my negative attitude over this is even more upsetting.

I'm doing just slightly better today, maybe because it's getting closer and I've gotten a lot done this week or maybe because I feel slightly better physically today.  I contacted the resort, and they said they could provide Gatorade for the boys (which was a huge worry), so that's good.  Maybe I should also call about the room location, instead of waiting until we check in.

I'm sure it will all work out OK in the end (or it won't but I'll survive it).  My kids are over the moon excited about this trip.  I just wish I could share in their happy anticipation, but I know what kinds of challenges I will face.

OK, here are some positives:

• I will be on vacation, so that means no responsibilities for a week, a huge relief after taking care of everything by myself for the past two weeks.
• Ken will be back with us.
• I will have lots of time for reading (though I'm worried that's all I'll be able to do).
• The kids will have an absolute blast.
• No grocery shopping, no cooking, no dishes, no laundry. 

OK, so that sounds good, right?  Hmmm..maybe I should list those last four items separately...

I'm going to try to have a better attitude, really, I am.  I hope it will be better than I expect - I will probably be able to enjoy some of it, right?  Right??

ME/CFS In the News

Two interesting news items came to my attention this morning:

• A new documentary about ME/CFS, called Invisible, is being released tomorrow in Vermont; the director/producer has CFS.  This is the first I'd heard of this one - I'm interested to see it.  I also highly recommend another award-winning CFS documentary, I Remember Me (see link below).
• An update from the Wall Street Journal's Health Blog on the new, large-scale study to test CFS patients for XMRV.  What's new and exciting about this study is that it is a cooperative study between WPI and FDA/NIH (who have both previously found XMRV and related viruses) and the CDC (who has not).  They are agreeing on using the same selection criteria, the same handling and storage requirements, and the same testing methods.  Hurray! 

The Laura Hillenbrand story was AGAIN pre-empted from the Today Show yesterday for the second day in a row, in order to make room for extended coverage of the royal engagement.  No offense to my friends in the UK, but enough already!   No official word on when it will run, but I'm watching again today!

Laura Hillenbrand to Appear on Today

According to the CFIDS Association:

"The Today Show" segment featuring an at-home interview with author Laura Hillenbrand was bumped from today's show and is now scheduled to air tomorrow (Wednesday). Laura's new book, "Unbroken," is out in stores today!"

Laura's in-person interviews are limited because of ME/CFS, so this will be a unique opportunity to see and hear her.  

So, tune in tomorrow!  I plan to...

Movie Monday 11/15

Monday, Monday.  I made it through the weekend without Ken - our Saturday get-together helped a lot!  I'm tired but doing a bit better than last week.  That seems like both good news and bad news to me - I'm certainly glad to be doing better, but now I'm wondering if the Immunovir was making me worse last week.  I'll just have to wait and see.  I'll restart my trial of it after I feel like I'm back to my "normal" baseline. 

More good news: Craig's knee injury was not serious - the orthopedic specialist he saw this morning just wants him to do some physical therapy.  He thinks a contributing factor is that Craig's joints are very loose and flexible (it's very common for kids with CFS to have loose or hypermobile joints).  So, four weeks of PT should do the trick.

The boys and I did enjoy some movies last week:

• Friday night, the three of us watched Die Another Day, a James Bond flick.  It was classic Bond - lots of action, cool technology, and the good guys won in the end.
• Sunday night, we watched Ocean's Eleven.  I've been wanting to share this one with them for a while, and they loved it!  I told them it was kind of like a cross between The Sting and The Italian Job.  They enjoyed the star-studded cast and the cleverness of the plot.  Jamie was excited to hear there are also Ocean's Twelve and Thirteen!
• I watched a couple of movies myself that I knew Ken didn't want to see (split up over the course of several evenings!).  The first was When Did You Last See Your Father? starring Colin Firth.  He plays a man whose father is dying (that's why Ken didn't want to see it).  Much of the movie is flashbacks to his childhood and teen years, showing why he has such conflicting feelings toward his father.  It's a melancholy, thoughtful movie, exploring the complexities of the relationship between a father and son.  I really liked it.
• I also watched Personal Velocity (which Ken would have proclaimed "quirky!").  It's three mostly unlinked stories of different women, each with her own problems and flaws.  It's got a very "real" quality to it, as we watch each woman trying to find her way in the world and find her own brand of happiness.  Ken would have found it depressing, I think, but there were elements of hope in each story.  It will definitely appeal more to women - not a lot of action but lots of emotions.

Have you seen any good movies lately?

Party for Chronically Ill Kids

That sounds like an oxymoron, doesn't it?  Or at the very least, like a really boring and possibly depressing event.  But all of those perceptions are wrong.

Our local CFS parents group got our families together again yesterday for our second gathering, and everyone had a great time!  One family hosted us for an informal potluck dinner; there were five families there, each with one or two kids/teens with CFS (I'm the only ill adult in the group).  We're all getting to know each other pretty well by now, so it was a lot of fun!

I was mentioning our group recently to a mom whose teen daughter has CFS, and she said she didn't really want her daughter interacting with other teens with CFS because she thought it would cause her to focus too much on her illness and might be depressing.  Nothing could be further from the truth!

Hanging out with other kids who have CFS is so freeing - they all became instant friends.  I don't think they talk about their illnesses or challenges at all when they're together - they talk and laugh and play games.  Best of all, they feel completely comfortable with each other.  They don't have to feel self-conscious or worry what the others will think if they have to sit down during Frisbee or lie down while playing video games.  There was dairy-free, gluten-free food available.  They understood why Jamie was constantly drinking Gatorade and why many of them attend school only part-time or not at all.  No explanations required.

For some of the kids who are usually isolated at home, this was the only time they've played outside in years and probably the only party they've been to in a long time, too.  The kids threw the Frisbee in the backyard and played video games in the basement.  One mom brought a bunch of flexible glow sticks, and after dark, the kids had a "glow stick war" in the basement.  True, some teens were lying down while they threw their glow sticks at each other, but the sounds of screams and laughter from the basement brought  a lot of smiles to parents' faces. 

And the connections formed aren't just fleeting.  After our first gathering in August, the kids all exchanged e-mails with each other.  In between our get-togethers, they're texting each other and interacting on Facebook.  They've formed solid relationships with each other and now know that they can rely on each other, that there is always someone available who understands.

Even though I'm the only adult in the group with CFS, I feel similarly comfortable with this group - they all understand why I can't stand much, why I'm constantly drinking water, why by 8 pm, I was exhausted.

I know I've said this here before, but if you have a chance to meet other people with CFS, you should try to do it, even if the exertion might result in a few days of rest afterward.  It's just so liberating to be with other people who instantly "get it," who require no explanation.  Just as all of you that I've met online have enriched my life and made me feel less isolated, meeting all these other families dealing with CFS has made all of us feel less alone.  Our focus has been on social events (which has been great!), but along the way, we're also providing support for each other.  It takes a village, right?

On the way home last night, Jamie said, "I wish we could do that every week!"

Trying New Treatments and Wondering...

I'm having a really bad week.  I'm feeling so, so, so terrible - sore throat, severe aches, and total exhaustion.  And I am really missing Ken - both his help and his company.  As usual, I'm trying to figure out WHY I feel so terrible.  The problem is that I've tried too many new things in this past month.  I'm usually more careful to try one thing at a time and give it some time.  So, here's a rundown of what I've tried and what I think its effects have been:

On October 16, I started taking 1000 mg of Vitamin D each day.  Unless you've been living in a cave (in which case you really need vitamin D!), you've probably heard at least a small percentage of the studies on the miraculous vitamin D.  It seems that every week, there's a new study out touting its benefits.  Much of the research has focused on its beneficial effects on the immune system and the link between vitamin D deficiency and all sorts of immune disorders.  All of the studies say you can't get enough vitamin D from food or sunshine alone (and I can't be in the sun at all right now because of my Lyme meds).  My recent lab work showed my vitamin D levels right at the lower edge of normal, so I decided to try it again.  I tried it once before and it upset my stomach, but this time I seemed to tolerate it better.  I started Jamie on it, too.  It's hard to tell (more on that in a minute), but I think it is helping.

Just three days after starting vitamin D, I added a new supplement, Samento, to my Lyme regimen.  I read a study where Samento and another supplement were more effective in the lab than doxycycline (antibiotics) at killing Lyme, plus I'd heard good things about it from Lyme bloggers.  I felt slightly crashed for a few days, then had the best week I have had in many, many months!  It's hard to tell since I started the vitamin D just a few days earlier, but it looked like a brief herx reaction, followed by improvement!  The last week of October, I was almost completely symptom-free and felt great.

So, why did I mess with that success??  Yeah, that's what I've been asking myself for the last two weeks.  As you know, on November 1, I got a flu shot.  I have to say that I am really regretting that.  I've been badly crashed for two weeks now, though I'm not sure it's all due to the shot.  However, both of my sons got flu shots and had no reaction at all to it.  I suspect it affected me worse because my immune system dysfunction is worse than theirs.

This past Monday, I started Immunovir, a prescription medication that is supposed to help correct immune system dysfunction.  I realize now that I shouldn't have started it while I was still feeling bad, but I thought it might help normalize my immune system again and pull me out of this crash.  Instead, I have felt even worse this week, but now I don't know if that's because of the Immunovir or still because of the flu shot (or a combination).  I checked with my doctor and backed off the dose a bit yesterday, but I'm still feeling horrible, so I think I need to give it up completely until I get back to my normal baseline, so I can accurately assess its effects.  What I'm really worried about is that the flu shot may have caused a long-term relapse like I had last winter (which is why I got it in the first place!!).

OK, so that's my story.  Now it's time to go pick Craig up and take him for an MRI of his knee.  He hurt it playing soccer yesterday and had to go to school on crutches this morning.  So, he has an MRI tonight, then an appointment with an orthopedic specialist on Monday morning.  Did I mention I miss Ken's help??

Two Inspiring Stories

After spending a long day driving back and forth to New Jersey with the kids to see our Lyme doctor, I am too exhausted to write much tonight.  I do think I my have figured out why I've been feeling so bad this week, but I'll have to tell you more about that tomorrow.

For now, I thought you might appreciate two wonderfully inspiring stories I just read about women with CFS:

• The first major news story, in USA Today, about Laura Hillenbrand's latest novel, Unbroken, with a lot of space devoted to her own battle with CFS.
• A news story from my own hometown, Rochester, NY, by and about a journalist who got severe CFS after mono as a teen and is now fully recovered. 

Hope you enjoyed this beautiful day (it was gorgeous here - sunny and warm with brightly colored fall leaves everywhere).

Monitoring Heart Rate to Avoid Post-Exertional Crashes

Fellow CFS blogger Lee Lee alerted me to this excellent article about how to monitor your heart rate in order to help stay within your limits and avoid post-exertional crashes.

Although I have long understood the importance of avoiding aerobic exercise with CFS, this article provides some very specific tips about how to figure out where your limits lie, how to monitor heart rate, and how to use this information to stay within your limits (which will, hopefully, help you to eventually increase those limits).  It's filled with excellent, specific advice.  I certainly plan to put some of this into action immediately!

Hmmm...I wonder where my old heart rate monitor is?  Of course, the last time I used it, I was trying to increase my heart rate!  I'm definitely going to dig it out of my old exercise stuff.

Thanks, Lee Lee!

Movie Monday 11/8

Another Monday.  I'm still having crash symptoms, presumably from my flu shot a week ago but started Immunovir today.  Jamie felt fine, even after a soccer game and a sleep-over on Saturday, and went to school today.  He even managed to finish all of his make-up work in time for the end of the marking period.

Craig, on the other hand, is in bad shape.  He woke up with pretty bad CFS symptoms this morning - sore throat, congestion, OI dizziness, and feeling feverish (typical for him).  Amazingly, he made it through the entire first marking period without a single school absence (perfect attendance is like the Holy Grail for my kids!).  I figured the Friday night school dance plus Saturday soccer and sleep-over were just too much for him.  He felt a bit better in the afternoon - as is typical for him on a crash day - and played a little basketball with Jamie when he came home from school.  But he came back in after a few minutes, complaining of pain in both knees AND both ankles.  He also asked me if queasiness is an OI symptom.  So, nausea plus sudden-onset joint pain...you know what I'm thinking, don't you?  Sounds an awful lot like Lyme.  We'll see how he is tomorrow.

We didn't watch a lot of movies last week, but the two we saw were both amazing:

• Invictus, starring Morgan Freeman as Nelson Mandela and Matt Damon, was just as incredible as we'd heard.  There was a long waiting list at the library, but it was finally our turn.  The whole family loved this moving, inspirational story about how Nelson Mandela used South Africa's rugby team (and its star player, played by Damon) to bring the country together.  My Quote it Saturday post was the poem, Invictus, from which the movie takes its name.   Highly recommended.
• I also brought Precious home from the library last week.  As soon as Ken saw it, he said he didn't want to watch it.  I told him I knew that, so I watched it while he was away this weekend. Precious was everything I'd heard it was - violent and disturbing but also moving and exceptional.  It's about a young girl working to overcome her abusive upbringing.  As I anticipated, the abuse scenes were difficult to watch, but the movie overall was just so poignant and, ultimately, uplifting that it was worth it.  After all, the best movies make you feel something, right?  This is a brilliant film.

Have you seen any good movies lately?

P.S. To hear about what books we're currently reading, check out my Monday post at Book By Book.

Quote It Saturday 11/6

It's been awhile since I've posted a Quote It Saturday.  We've had a crazy busy fall!  Today was Jamie's last soccer game - now the season is officially over for both boys.  It still feels like a miracle to me every time I see Jamie run down the soccer field - thank goodness for Florinef!  He's not always well enough to play, but when he does, he really moves - he's easily the fastest player on the team.

And we just dropped Ken off at the airport - he's headed to Germany, Belgium, and the Netherlands...we're going to miss him!  So, I have a tiny pocket of quiet time (well, not exactly quiet - Jamie has two friends over - but here's nothing urgent to do) and wanted to revive Quote it Saturday. 

This week's quote one isn't from a book (well, I guess it was at some point).  It's the poem from which the movie Invictus (more on that Monday) takes its name, the poem that kept Nelson Mandela going while he was in prison for 26 years.  It really resonated with me regarding living with chronic illness, which is a sort of prison sometimes, isn't it?

Hope you like it as much as I did:

William Ernest Henley. 1849–1903

Invictus

OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance	5
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,	10
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:	15
I am the captain of my soul.

ME/CFS and XMRV in the News

Lots of news and updates published recently on ME/CFS and specifically on XMRV.  I found most of this information and references from the CFIDS Association of America's latest e-mail update, CFIDS Link - I highly recommend signing up for this e-newsletter.  You can sign up for the newsletter or read past issues here.

• Wall Street Journal's Health Blog reports on a new paper by XMRV expert Ila Singh that provides guidelines to researchers on how to properly plan studies in order to use the methods necessary to detect XMRV in blood samples.  Let's hope the researchers all listen!
• The Journal of the American Medical Association's recent newsletter includes a detailed article on XMRV and CFS.  Nothing really new reported here, but it is significant that such an article appeared in JAMA because it's the most widely-read medical journal in the world.  Get the word out!
• Highlights of the recent CFSAC meeting in Washington - this article focuses on the meeting itself, on Days 2 and 3, rather than on the Science Day presentations on Day 1  (which I still plan to summarize for you!)
• Laura Hillenbrand's newest book, Unbroken, is scheduled for release on November 16.  Read all about it at this website, along with a long list of scheduled interviews and appearances (I hope she's able to handle all of those!).  Many of the events and publications scheduled will include author overviews, so hopefully, this will also be good PR for ME/CFS - there are some biggies listed here!
• Videos from the September 2010 Conference for Healthcare Providers and Patients, sponsored by OFFER (Organization for  Fatigue and Fibromyalgia Education and Research) are now available online.  The list of speakers and presentations is impressive - all the major players in ME/CFS treatment and research!

That's all the news for now.  I think I'm doing a bit better today.  I took a shower, so I'm resting from that, but I do feel less achy.  Have a good weekend!

Flu Shots and CFS

Well, I finally got a flu shot, my first ever.

You might recall from my update last month after seeing my Infectious Disease doctor that she had changed her mind about flu shots for CFS patients and has been giving them since last year.  She felt the risk of being exposed to the flu - especially with the bad flu season we had last year - was greater than the risk of a reaction to the shot.  Only one of her CFS patients so far has had any problem with it.

So, I decided to go ahead and get one.  I waited for a week when Ken would be home, in case I crashed, and went to see my doctor on Monday morning.  Like others, she's been undecided about flu shots for CFS patients, too, so I shared what my ID doctor said, and we decided I should try it.  Despite my careful timing, Monday was probably not the best choice because I was a bit worn out from Halloween weekend (the nurse who took my pulse said, "Are you nervous about your shot?  Your pulse rate is really high."  Nope, just OI!)

So, I got the shot Monday morning...and I've been in a mild to moderate crash since then.  Bummer, huh?  It's not a terrible crash, and I think I'm doing a bit better today, but I've had an intermittent sore throat and mild achiness most of the week.  I'm hoping I'm at the end of it now, but I wanted to let you know what's been going on.

I also took my sons for their first-ever flu shots on Tuesday, and they've fared better.  Craig has had a minor sore throat in the mornings, but he started that on Monday - probably from too much Halloween fun!  He says once he has breakfast and medicines and gets to school, he's been fine.  Besides getting a flu shot on Tuesday, Jamie spent a total of almost 3 hours playing soccer (!), so his minor symptoms (bit of achiness and fatigue) could just as well be from that as from the shot, plus he's working long hours to try to make-up all the work he missed recently.  Both of them have been able to go to school each day.

So, mixed results so far.  We'll see how we fare this winter.  My motivation for even considering the flu shot was my 9-month long relapse last winter.  It started in mid-September, almost certainly from a viral trigger (though not necessarily the flu) and lasted until April.  This fall had been much better so far, so we'll see.  Of course, you never know how things would have been without the shot...as with most of CFS, it's a guessing game, right?

Bottom line is that I think the flu shot is a very individual decision for each CFS patient, based on perceived risks.  I think I would hesitate to get one if my immune system symptoms (sore throat, swollen glands, flu-like aches) were worse right now, just because it's an additional stimulant to the immune system.  If you do decide to get one, my ID doc says she learned last year that you're not supposed to split it into two halves (as she was doing at first) because it's less effective that way.

Anyone else out there have experience with flu shots?

Movie Monday 11/1

Happy Halloween (a day late!).  We had a very busy weekend filled with all our favorite Halloween traditions.  It was especially nice to spend some time together as a family, after all of Ken's recent traveling and the boys getting older and leading such busy lives.

We went to a local farm (well, it's not actually a real farm anymore, just a store, but it's a tradition...).  We ate tons of hot, homemade donuts and fresh cider, picked out our pumpkins, and Ken guessed their weights.  If you guess within a quarter pound, you get your pumpkin free.  Ken's really good at it, and he missed one this year by only 0.04 pound.

We spent Sunday carving jack-o-lanterns and making our costumes.  Our whole family (plus a friend) dressed as rock stars (that's me in the front).  What a blast!  One of our best costume years, I think (to some of our past costumes, type Halloween into the search box on my blog).  That black lipstick and eyeliner is really hard to wash off, though!

I was a bit tired out from all the activity this weekend but managed pretty well, even going along trick-or-treating to a few neighbors' houses.  Then, Ken and I came back home and let the kids hit the rest of the neighborhood.  I'm a bit worn out today but don't feel crashed.  More importantly, both kids made it to school today.  Lots of fun!

So, it's Monday and that means movies!  Jamie was home sick another 3 days last week (he's doing better now), so he and I saw quite a few.  When he was still so badly crashed last Monday, I went to the library and picked up a stack of old favorites I thought he'd like (we switched from comedies to thrillers this week):

• The Sixth Sense - perfect for Halloween week and Jamie's first M. Night Shyamalan movie.  It's such a good movie with such a cool twist, and Jamie likes Bruce Willis - he loved it!
• We watched Conspiracy Theory with Julia Roberts and Mel Gibson (not one of my favorite actors these days, but it's a good movie).  I knew Jamie would enjoy this thriller, and he did.
• He watched The Invisible, one of dozens of scary movies being shown on FX channel last week.  He watched a few, but I happened to see most of this one with him, and I thought it was surprisingly good, about a teen boy caught between life and death and trying to find a way to communicate with people so they can find his supposedly murdered body and revive him before he dies.  Jamie loves this sort of paranormal stuff.
• My mom and I went to my book group Wednesday night, so I set the boys up with a favorite of mine and Ken's, The Italian Job, a high-quality caper movie about a group of talented thieves pulling off their best (and last) job.  They loved it, especially the Mini Cooper chase scene!
• And, I am embarrassed to admit that Ken and I watched another movie we'd already seen before on Saturday night!  sigh...it took us a while to catch on this time.  I brought home two movies from the library for us, thinking we'd seen one of them before (People I Know with Al Pacino and Tea Leoni).  We looked it up online and agreed that, yes, we did see it before (it was very good), so we set that one aside and watched the other one, Read My Lips, a French movie about an ex-convict who uses a deaf woman to read lips for him in order to carry out a crime.  We were probably three-quarters of the way through it before we began wondering whether we'd seen it before!  By the end, we were sure, though.  Not a brain cell between us!  Please tell me someone else does this...

Have you seen any good movies lately?  Hope you had a fun Halloween weekend!