Feedback Requested on ME/CFS Public Service Announcements

As you may know, the ME/CFS Worldwide Patient Alliance has been sponsoring a contest for patients to create videos that can be used as a Public Service Announcement (PSA) for ME/CFS.  The winning video will be sent to TV stations all across the nation.

Six excellent videos have been created and entered in the contest, but now MCWPA needs your help!

Use this link to the MCWPA Discussion Forum, where you will find a Discussion Topic created for each of the PSA contest entries.  Click on the link to watch the YouTube videos, then leave your thoughts and opinions on each one in the discussion forum.  Entrants will then have a chance to revise their videos, based on your feedback, before final voting on the winner.  Sounds like fun, right?  Go on over there now and let your voice be heard!  This is your chance to add your own thoughts to a national ME/CFS awareness campaign.

Great Articles on ME/CFS

Last week, there were several really excellent articles on ME/CFS in the mainstream media.  I've had these 3 articles sitting open in browser windows on my laptop for almost a week now!  I figured it's time to finally pass these along:

• Unlocking Chronic Fatigue Syndrome by Amy Docker Marcus (our best friend in the media), published in the Wall Street Journal on May 22.  This article gives an overview of ME/CFS research like you've never read in the newspaper before: heavily focused on real science, possible infectious agents, and new studies.
• Wall Street Journal's Health Blog, also on May 22: The Hunt for the Biological Causes of Chronic Fatigue Syndrome by Katherine Hobson.  This brief blog post is mostly focused on the National Institutes of Health (NIH) upcoming conference on ME/CFS April 7 - 8, including 100 scientists, but it also references Amy Docker Marcus' article, above.
• Scientists Seeking Biological Causes of Chronic Fatigue Syndrome, published on May 22 on the Fox News website.  Although this is essentially a reprint of Marcus' WSJ article (above), I thought it was significant that Fox News covered it as well.

So, that was last week's news!  Now I can focus on THIS week...

Movie Monday 3/28

Monday already!  We spent the weekend working on our tax return (still haven't finished yet!), so it didn't feel like much of a weekend, but I am starting the week feeling quite good and refreshed by my blog break.  My crash of last week seems to be cleared up - I was able to get back to walking again today!

Thank you so much to all of you who commented here last week and expressed your caring and support while I was going through a rough time.  I can't tell you how much that meant to me, and how much it boosted me up.  There is nothing in the world that beats the feeling of knowing that there are other people out there who totally understand.  Thank you.

Our weekend had some real highs and lows.  On Saturday, Jamie felt well enough to work on a Habitat for Humanity house with a group from his school, something he has wanted to do for ages.  He came home on top of the world!  Sunday, however, was awful for him.  I'm sure he was a bit crashed from Saturday, but he also had severe stomach pains and chills and was once again stressed over not being able to finish his schoolwork.  Fortunately, today was better for him as well, and by tomorrow, he should finally be done with all that make-up work and able to start a new marking period with a fresh start.

Craig went to a marathon sleep-over party, from 5 pm Friday, culminating in a dance Saturday evening.  Some kids were staying over another night, but we told him one was his limit and picked him up after the dance.  He slept for 13 hours straight!!  He did bounce back on Sunday, though, so we were grateful for that.

The bright spot in the weekend for us was watching a couple of great movie DVDs in the evenings!  With Craig away most of the weekend, Ken, Jamie, and I watched:

• Inception, starring Leonardo DiCaprio and Ellen Page, was just as complex as everyone has told us!  DiCaprio stars as a man who can enter people's dreams and works in corporate espionage, stealing secrets.  He and his colleagues get the ultimate challenge, though, when they are hired to plant an idea instead of stealing one.  At one point, they are all embroiled in a dream within a dream within a dream within a dream.  Follow that?  We all enjoyed it very much, but this is definitely not a movie to watch when brain fog is bad!
• Saturday evening, Jamie chose 2012 which was surprisingly good and better than I expected.  It's something of a classic disaster film, with the Mayan predictions about the end of the world in 2012 proving to be true, but with good acting, good writing, and even some emotional depth.  Starring John Cusack (one of my favorites), Amanda Peet, Danny Glover, and Thandie Newton (among others), this was the first action film that actually made me cry.  I don't think it's giving anything away to tell you that it does end on a note of hope, which was a relief after watching The Road a few weeks ago!

Have you seen any good movies lately?

Time to go make dinner - we have stuff going on almost every evening this week - but I do hope to find a few minutes here and there to get back to visiting blogs this week.

Blogging Break

Just a quick note to let you know I've decided to take a brief break from blogging for the rest of this week.

I had a really rough day yesterday, with several incidents that pushed me over the edge, emotionally, and I'm feeling very overwhelmed.

One of those incidents was my oldest son, who himself is overwhelmed and exhausted from trying to make up 4 weeks' missed work at school, saying, "This illness has ruined my life.  I am nowhere near a normal teenager."  It broke my heart and still brings me to tears as I type this.  All of us in our family try very hard to stay positive most of the time, to look for joy in our lives and remember to be grateful for all that we have....but sometimes, the reality of what we're up against is just too much to bear.  This illness is particularly unfair to kids and teens.

That came on top of feeling very overwhelmed lately.  I just feel like I am trying to do too many things...and am failing at all of them.  One of those things is keeping up with blogs - both mine and others.  I know it's been ages since I've visited some of your blogs, despite my best efforts to keep up, and I apologize for that.  When I found myself snapping at my family last night because I was so stressed over online happenings, I realized I need to take a break.  It may sound counter-intuitive to take a break when I'm already feeling behind, but I need to focus just on taking care of myself and my family for a few days.

Thanks, in advance, for your understanding and patience.  One comfort right now is knowing that this online support network is always there for me, even when I can't keep up.  I know you all understand.

See you again soon -

Young People with CFS: Speak Up About ME!

If you or your children became ill with ME/CFS before the age of 21, this is for you!
(If not, you can still help...)


Denise, a good friend of mine who has two teen sons with severe ME/CFS, has come up with an amazing idea to build awareness of the impact of ME/CFS on kids, teens, and young adults.  Her awareness project now has several sponsors and is being talked about all over the internet!


The CFS Advisory Committee (CFSAC) of the U.S. Department of Health and Human Services finally announced its next meeting will be on May 10-11.  Speak Up About ME - Invisible No More! will take place during the second day of the meeting, on Wednesday, May 11.  Here's how you can help:

• If you or your kids became ill before age 21, e-mail Denise with the following information: Name of patient    Age at onset of ME/CFS     Age at diagnosis    Current age (as of 5/11).  With your permission, she will include your information in her own testimony at the meeting.
• If you are able to, plan to come to the meeting in Washington, DC, on May 11 to give testimony in person about the impact of ME/CFS on your life or your child's life.  The young people present will attend the meeting, get together for lunch, and, if able, visit their congressional representatives.  If you want to attend the meeting in person, send an e-mail to the CFSAC as soon as possible to tell them you want to give testimony so they can reserve a spot for you.  In-person spots fill up early.
• If you can't attend the meeting in person, please submit written testimony.  Your 5-minute testimony can be phoned in, read by someone at the meeting, or you can attend via video conferencing.  Again, you must e-mail the CFSAC to notify them that you intend to give testimony, in whatever form, so they can reserve time for you.
• Whether you can attend in person or not, you can order a t-shirt!  MCWPA Young People T-Shirt for CFSACMCWPA Young People T-Shirt for CFSACThe young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle (MCWPA Young People t-shirt for CFSAC).  Each shirt will be customized with a slogan that shows how much of the patient's life has already been spent ill (For example, my son Jamie's shirt will announce "sick 6 of 16 years").
• Help publicize this awareness project through your own blog or Facebook page (e-mail Denise for a ready-made PR announcement or feel free to link to this post). 
• Donate to this project to help defray the costs. 
• Ask your doctor(s) to help spread the word to their other young CFS patients (you can print information from the website to take to your doctors). 
• Visit the Speak Up About ME, Invisible No More! website for more information.

This event is being supported by a coalition of ME/CFS organizations including P.A.N.D.O.R.A., the Rocky Mountain CFS and FM Association, the Vermont CFIDS Association, the ME-CFS Worldwide Patient Alliance, Phoenix Rising, CFS Solutions of West MI, CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia) of Georgia and Facebook's cause-project page.  

Some of the sponsors are even going to cover the costs of the young people's lunch, taxi rides to visit Congressional representatives, and individualized cards for young people to hand out. These will resemble trading cards, with the young person’s name and photo on the front, along with the phrase "Thank You for Remembering ME." ME, of course, will refer not only to the patient but to Myalgic Encephalomyelitis. The back of the card will have bullet points about ME/CFS, including its negative economic impact.  We are hoping that this event will also attract media attention.

Isn't this exciting?  Please help spread the word and participate however you are able to!  My entire family (my husband and I and our two sons) will be attending the May 11 CFSAC meeting in Washington, DC.  I already e-mailed to ask for testimony time for all of us. I would love to finally meet some of you in person!

Spread the word about Speak Up for ME - Invisible No More!

Post-Socializing Crash

I've been moderately crashed since last Wednesday, though I'm not sure exactly why - it might be from over-doing (always a possibility) or from increasing my dose of Immunovir (still trying that out) or from running out of one of my Lyme supplements and going without for a few days.  As always, who knows?

But one thing is for sure - I enjoyed two different social interactions on Saturday and paid with severe crash symptoms on Sunday.  Even more than the exercise intolerance, it seems completely unfair that simply talking to friends can make me sicker.

Saturday morning was our local ME/CFS and FM support group meeting.  A friend started the group a few months ago, and this weekend was the second time I went.  There were seven of us, some with CFS, some with FM, some still undiagnosed, and our discussions were so interesting that before we knew it, two hours had gone by!  That was a lot for me, given that I was already not in top shape (though I had been OK that morning).  One friend from the meeting and I went out to lunch, which I thoroughly enjoyed.  Hey, I had to eat anyway, right?

I went home and napped, had a brief time on the couch, and then it was time to go to a friend's house for dinner.  By then, I was pretty wiped out, but we'd made plans weeks earlier with two families who are among our closest, oldest friends.  It was a quiet evening, just sitting and talking and enjoying a delicious dinner, but by 8 pm, I was really exhausted.

Getting ready for bed that night, I felt like I'd run a marathon!  My body ached all over, and I knew I'd need an Ambien to sleep soundly (I rarely take them when I'm at home).  I woke up Sunday still wiped out, achy, and with a sore throat and was totally useless all day. 

How can social interaction cause such physical repercussions?  It's crazy, isn't it?  I mean, I understand some of the mechanisms behind it, but it still just seems surreal.  The same thing happens when I go to my book group - a couple hours of sitting comfortably and talking with friends results in physical exhaustion.  This is just torture for someone like me, who is naturally a very social person.

Well, fair or not, that's what happens.  I'm doing a bit better this afternoon and have been trying to rest today.

(P.S. No Movie Monday this week - Ken and I were too tired to stay up late enough for movies this weekend!)

Article on ME/CFS and XMRV in Nature

Nature magazine ran a 4-page feature-length article on XMRV and the search for a cause for ME/CFS, including an in-depth interview with Dr. Judy Mikovitz.  It's a pretty good article - a clear and well-written explanation of the controversies surrounding XMRV, mostly accurate and even-handed, indicating that CFS is now beginning to garner serious attention in the scientific community. 

Just one glaring problem - the article starts by referring to Chronic Fatigue Syndrome (CFS) but then quickly lapses into lazily calling it chronic fatigue (no caps even).  Lots of readers have already complained, and the editor responded with an apology and an assurance that he didn't intend to downplay the seriousness of CFS but just thought it would read better that way without a lot of acronyms (you can read all the letters at the end of the article). 

Sloppy editing, but otherwise an excellent article and some very good coverage for us.  Besides, the sad truth is that most people will not even notice the disparity between calling it CFS and calling it chronic fatigue.  At least people are finally talking about it.  If you're confused yourself over XMRV, this article provides a pretty good overview.

Taking the First Step to Social Security Disability

After nine years of being mostly incapacitated and unable to work more than an hour or two a day, I finally took the first step toward obtaining Social Security disability benefits today by submitting my application, through my lawyer's office.  I don't have very high hopes - in part because Delaware has one of the lowest rates of disability approval in the nation - but I thought I should give it a try to counter our mounting medical bills.

Why did I wait nine years to apply?  That's a good question with convoluted answers wrapped up in both practical and emotional reasons.  From a practical point of view, I always assumed mine would be a tough case to prove since I left my high-paid consulting job voluntarily two years before getting sick in order to take a few years off to spend more time with my family.  As it turns out, that's not actually a big issue, given the rules of the Social Security system.  I had also hoped that I would be able to make enough money writing to make up for at least some of my lost income.  Turns out that's harder than I thought, especially with so little time and energy to devote to a writing career and made even harder with the recent economic downturn.

Emotionally, I was used to being a very strong, independent, self-reliant person, so it's hard for me to admit that I need this kind of help.  I have to admit to also feeling some illogical guilt.  I am fortunate enough to have a spouse with a good job, a very nice home, and few needs unmet.  I hear stories of people with ME/CFS who are completely bedridden, without any family to help support them, who have been turned down for disability.  It makes me feel like what right do I have to ask for help?

But, I know that's an emotional response, not a rational one.  After all, I put money into the Social Security system for all these years.  It's supposed to be available to me if I am unable to earn enough on my own.  There's certainly no question that ME/CFS has disabled me.  Despite my euphoria yesterday over my 36-minute walk, I am still severely limited in what I can do.  In fact, I have been badly crashed since yesterday afternoon (maybe from the walk, maybe from other stuff, maybe from a change in meds on Monday), reminding me that my couch days are far from over.

So, I filled out the many, many forms, listing past jobs, current symptoms, doctors, medications, and blood tests.  At my lawyer's suggestion, I attached a narrative that explains how CFS affects me and what my daily life is like, along with my years' worth of daily symptom tracking and graphs (the lawyer was amazed by my meticulous record-keeping!)  And I'll see what happens.  The extra money would certainly help with our medical expenses, which just keep going up and up each year, maybe even allowing us to finally replace this 30-year old broken couch I'm lying on!  I've heard lots of horror stories about this process.  I don't suppose anyone out there has any success stories to share??

Exercise Envy

I took a walk in the park today.  Wait, that didn't have the dramatic effect I'd intended....

Drumroll, please....

I took a walk in the park today!!  Ta da!

Thank you, thank you all.

As you know, I've been trying to gradually increase my walking each week, a little at a time, with the help of my heart rate monitor and the beta blockers that are helping to decrease my heart rate so I won't crash so easily.  But today felt like a milestone. 

I drive by this park all the time - it's located right next to my son's school - and it has this wonderful paved walking trail all along the edge.  Every single time I drive by, I feel a surge of envy, watching all the people on the walking trail - walking, running, skating.  There are people with strollers, kids, women chatting together in small groups, even elderly people, and I want so much to be among them.  It's not the most beautiful park in our area, but I crave its normalcy, its freedom.

I wrote a couple of years ago about how much I miss exercise, and I still feel that way to some extent.  I still can't let go and experience the pure joy of unfettered movement - running, dancing, etc.  My walks are defined in part by their limits - I very carefully watch my heart rate and the time and constantly monitor my body for any signs that I need to stop.  I walked today for 36 minutes, with an average heart rate of 85 and a maximum heart rate of 98.

But I am hugely grateful that my world has expanded by this little bit. Taking that walk in the park today, alongside the other walkers - like a real person! - felt like a huge victory.  I'll take my victories where I can, since they've been few and far between these last nine years!

Movie Monday 3/14

Hallelujah!  Both boys went to school this morning, for the first time in weeks.  What a glorious feeling to see them go off like normal kids...not to mention having the house to myself for a few hours!  Our "normal" isn't much, but I missed it!

Ken and I even went out for dinner on our own Saturday night, a rare treat!  We also enjoyed some wonderful movies this weekend:

• Friday night, we watched an extraordinary movie, Conviction, based on a true story about a man sentenced to life in prison for murder.  Actually, the movie is more about his sister, Betty Anne (played by Hillary Swank), who - without even a high school degree to start with - put herself through law school so that she could take her brother's case and prove him innocent.  I first heard about this movie when I heard an interview on NPR's Tell Me More with Betty Anne Waters and Hillary Swank.  Ken and I both loved it.  The movie brought me to tears over and over again, and I kept thinking about it all weekend.  Highly recommended.
• For a change of pace Saturday night, we watched a lighter movie, Valentine's Day, directed by Garry Marshall, which features an all-star ensemble cast (including Julia Roberts, Ashton Kutcher, Jennifer Garner, George Lopez, and many more).  It's one of those movies that starts out with a half dozen different plot lines but then the character's lives intersect in unexpected ways.  It's a fun romantic comedy, warm and funny and enjoyable.
• Craig was home sick from school all five days last week - and too sick to do anything most of that time - so I got him a big stack of DVDs from the library.  He watched A Wrinkle in Time (one of our favorite books); The Water Horse which he didn't want to see but admitted was pretty good; The Thief Lord, another favorite book of ours and one of Craig's favorite movies; Open Season 2; and the entire Lord of the Rings series (Craig's version of cinematic comfort food).
• Last night, I bribed the boys with Rita's water ice to watch the pilot episode of an old favorite TV show with me, the original The Incredible Hulk series from the late 70's.  They loved it, as I knew they would, and begged me not to turn it off at bedtime.  We have the entire first season on DVD from the library but probably won't have time to watch it all.

Have you seen any good movies lately?

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

Quote It Saturday 3/12

Happy Weekend!

I successfully made it to the grocery store this morning, with Ken along for help and company, after yesterday's lost day.  Plan B ended up being him bringing home a few things we needed for dinner during his lunch hour yesterday and doing the big shopping trip today.  This time, I remembered to take my beta blockers the minute I woke up, and my day went as planned - I was able to stick to Plan A today!

Today's quote is another from Toni Bernhard's wonderful book, How To Be Sick, which I reviewed at my book blog last year.  I wanted to bring your attention to Toni's book today, in conjunction with her ME/CFS story being posted at the wonderful new website, Invisible Awareness, yesterday.  I have dozens of pages dog-eared in my copy of How To Be Sick, so it was hard to choose a single quote, but I could really relate to this one:

...But even in the confines of the house, it takes tremendous discipline to avoid overexertion.  I'm still working to overcome a lifetime of conditioning that led me to believe that making sure my house looked its best was essential to the quality of life of the family.  Suddenly and unexpectedly, tasks such as keeping windows washed, surfaces dusted, walkways cleared of leaves, became actions that in increased suffering.  Everyday, I have to muster the willpower to stop myself from doing something that now comes under the category of unwise action, and I don't always succeed.  To help me, I keep a haiku of Issa's posted nearby.  It's about nonharming, but I think it also serves as a reminder to let go.


Don't worry, spiders,
I keep house
casually.


          - Toni Bernhard, How To Be Sick

Isn't it ironic that we have to work so hard to rest?  I feel just like Toni does.  In fact, this is exactly what I was fighting with myself over yesterday: I knew grocery shopping was too much given the way I was feeling, but I have to fight a lifetime of conditioning over things that have to be done.  It has taken me 8 years (I didn't understand PEM the first year) to get to a point where I can recognize the necessity of always having a Plan B.  It's hardest when we feel just fine but know that a certain activity will cause a crash later.  Who knew that being sick was such hard work?

Life Without Beta Blockers

Well, if I had any doubts about the positive effects of beta blockers for me, this morning I had a stark reminder.  As I posted earlier this week (Treating ME/CFS with Beta Blockers), I've been able to be more active since I started taking beta blockers - they help to decrease my heart rate and hold my blood pressure steady, diminishing the negative effects of Orthostatic Intolerance.

Well, this morning, I got up with a plan to get groceries.  As is my routine now, I usually sit on the couch with my feet up for an hour or so while I wait for the beta blockers to kick in, before I do anything active.  So, here it is 10 am already, and my heart was still pounding like crazy!  My heart rate monitor shows my heart rate is over 100 just sitting here, and when I got up to grab something from the other room, it jumped up to 115!  I'm thinking, "What the heck is going on today??" 

Then I realize...I forgot to take my beta blockers this morning!  I normally keep them on my bathroom sink and take two as soon as I wake up, but I moved them to the kitchen yesterday to add them to my lunchtime medicine box and forgot to put them back upstairs.

I had hoped to be at the grocery store by now, but instead I am lying on the couch with my heart pounding, feeling crashed.  I hope it's not too late and I didn't already crash myself just from making breakfast and doing the dishes.  So, I am waiting...and hoping.

Meanwhile, Craig is still home sick - his 6th day.  Yesterday morning, after 3 days on antibiotics, he still had a fever of 102 degrees, but we are seeing a small improvement this morning.  This has been a really bad one for him.

Still waiting....

Treating ME/CFS with Beta Blockers

 (NOTE:  I am not a doctor and do not intend to offer medical advice to anyone.  In this post, I am just hoping to share my own experiences with a medication that has helped me.  You should talk to your doctor before trying any treatment yourself to make sure it is appropriate for your own particular circumstances.)

I'm embarrassed by how long I've been promising to write this blog post!  I've only had one day in the  past month when I didn't have at least one kid home sick.  Craig is still in terrible shape, fighting bronchitis and sinus infection; Jamie is back in school but too wiped out afterward to attempt any homework.

Anyway, back to the subject at hand...this post is about treating Orthostatic Intolerance (OI) with beta blockers.  If you aren't sure what OI is or you think you don't have it, you should first go back and read my post on OI and CFS.  Studies show that over 95% of people with ME/CFS have OI, and it causes many of the symptoms we commonly think of as CFS.  Very briefly, OI causes our blood pressure to drop and our pulse rate to go way up when we are upright.  These effects cause us to feel sicker (and some people actually get dizzy or even faint).

So, my story....in early January, I was in bad shape.  The holiday season had really done me in.  Ken had gotten me a heart rate monitor for Christmas (at my request), and I intended to use it to try some short walks, monitoring my heart rate to keep it below my anaerobic threshold to avoid crashes (for more information on how to monitor your heart rate to avoid crashes, check out my past post).  As I explained in that earlier post, I quickly learned that I was constantly over my anaerobic limit (which is 105)!  No wonder I was constantly crashed - just walking up the stairs or showering sent my heart rate soaring.

In the midst of this bad period and new information about how my OI was affecting my life, I was talking to a friend on the phone (she's one of our local CFS moms - her 15-year old daughter has CFS with severe OI - she used to faint multiple times each day!).  So, she told me that their doctor (who is also my doctor) prescribed beta blockers for her daughter and they had helped to bring her heart rate down.  Then, I remembered reading about beta blockers in Dr. Rowe's article on OI (highly recommended reading!), so I made an appointment with my doctor.

Here's what Dr. Rowe says about treating OI with beta blockers:

Type of drug: a beta-blocker
Indications: NMH and POTS
Action: Atenolol blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that may help trigger NMH.
Common side effects: Some individuals complain of headaches or fatigue after atenolol, and others have worse lightheadedness or worse symptoms in general. If these problems arise, we usually stop the medication. Like other beta-blocker drugs, atenolol can lead to constriction of the airways in individuals with a history of asthma. If cough or wheezing develops soon after starting the drug, it may need to be stopped. For those with mild asthma, our impression has been that an inhaled steroid (eg, Pulmicort, Flovent) may allow patients to tolerate the beta-blocker without increased airway reactivity. Atenolol can also cause emotional depression. Atenolol is less likely than other beta-blocker drugs (such as propranolol [Inderal]) to lead to nightmares, confusion, and hallucinations. Atenolol and other beta-blocker drugs can interfere with the body’s ability to correct low blood sugar, so the drug must be used with extreme caution (if at all) in diabetics. The activity of the drug can be decreased when it is used in conjunction with non-steroidal anti-inflammatory drugs such as ibuprofen (Motrin). We recommend that beta- blockers be discontinued 2-3 days before surgery because it can interfere with the action of epinephrine if that drug is needed to treat an allergic reaction during surgery.

I asked my doctor about trying beta blockers, and she said, "That's an easy one to say yes to!" (as opposed to some of the more experimental treatments I have asked her about over the years).  She thought very carefully about which beta blocker to prescribe and chose propranolol because it is short-acting and comes in a low dose.  She said that would give me some flexibility; she told me I could take 1 or 2 tablets up to 3 times a day (they are 20 mg each).

After the doctor appointment, Ken and I went to the grocery store - he came with me because my stamina had been so poor.  I wore my heart rate monitor.  My average heart rate was 109 and at one point, it shot up to 133.  I was badly crashed the next day.

On the way home from the grocery store, we stopped at the drugstore to pick up my new prescription.  I took 2 pills in the car.  Within an hour, my heart rate had dropped 30 points!

Before beta blockers, my heart rate was often in the 90's just sitting on the couch with my feet up, and it would spike up to the 100's just standing or walking into my kitchen.  Taking a shower would send my heart rate up to 130 or higher!  Now, on beta blockers, my heart rate is usually in the low 70's when sitting (sometimes even 60's!), and it stays below my anaerobic threshold when I walk up the stairs or shower.

Now I can grocery shop on my own: I've gone every week since then!  On a recent grocery trip almost two hours long, my average heart rate was only 80, and the maximum heart rate was 97 - no crash afterward!

I can take walks now!  Since starting the beta blockers, I have been walking, trying to gradually increase how long I walk.  I can now go all the way around my neighborhood without my heart rate going over my threshold.  We went on a hike at the local nature center last weekend - 45 minutes and no crash the next day!

I went back to tell my doctor the good news, and she was overjoyed!  Really, she's usually pretty low-key, but she was grinning from ear to ear as I told her that I'm able to be more active now.  Most days, I take 2 pills in the morning, another 1 after lunch, and sometimes another at dinner, depending on how I'm feeling and whether I have anything to do later in the day.  On Saturday, for our Mardi Gras party, I took the full 2 pills 3 times a day.

As excited as I am by my progress, I want to emphasize that beta blockers are far from a cure for CFS.  I still need my nap every afternoon, still get wiped out if I overdo (like the party Saturday night), and am still prone to crashes for other reasons (like being exposed to a virus).   And they haven't increased my energy levels.  BUT, I can now do things I couldn't do before without crashing the next day.  Being able to walk again feels like a miracle to me!  And I hope that being able to exercise a little bit will help over the long term by improving my overall physical condition and stamina.

Common side effects of beta blockers are fatigue and dizziness (my doctor and I laughed over that - exactly the symptoms we are trying to treat!), but I think my doctor's strategy of using the low-dose, short-acting variety has worked for me - I haven't experienced any side effects.

I just heard from another local friend who uses the same doctor that she is going to try beta blockers also.  It's another avenue of treatment - something to ask your doctor about.  I hope my experience helps you.

Movie Tuesday 3/8 and Happy Mardi Gras!!

Surprise, surprise...I am starting the week behind again.  Monday morning, I heard Jamie and Ken leave the house on time, heard Craig get in the shower at 7 am, so I thought, "Great!  Back to normal today - everyone at school and work, and I can finally get some work done!"  Then I got dressed and came downstairs to find Craig wrapped in a quilt on the recliner, shivering with fever, coughing, and telling me his chest hurt.  We spent hours yesterday at the pediatrician's office (a 2 hour wait!), getting a chest x-ray, and going to the drugstore.  We finally got back home at 3 pm - waaay past my nap time!  Turns out he has a sinus infection and bronchitis...but no pneumonia, thank goodness.  I was useless the rest of the night.  Craig was in terrible shape today but is starting to perk up a tiny bit, thanks to strong antibiotics.

But today is Mardi Gras Day!  We had a very nice party Saturday night - about 18 adults and 6 kids.  Good food, good conversation, and great company.  Before CFS, our Mardi Gras parties were huge affairs, with 50-60 people!  Ken and I agree it's actually more fun this way, with just some close friends (who all help).  Instead of drinking until 2 am, everyone was gone by 10:30 pm!  If you want to see what a real Mardi Gras parade is, you can check out this live webcam (though I think by this time of day, the major parades might be finished already - there were still some truck parades going by last time I checked!)

And, finally, though it's Tuesday already, here's a quick recap of the movies we saw last week:

• Ken and I watched The Road Friday night, based on the Cormac McCarthy book.  One word: grim.  It's a post-apocalyptic story of a father and son journeying cross country.  This is a bleak world, with no plantlife, no animals, no sunlight, and no hope.  It's well-done and the relationship between the boy and his dad was touching, but if you prefer uplifting movies, this is not for you.
• We watched Hulk with the kids and discovered there were two different movies about the Hulk released recently (the other is The Incredible Hulk).  It was pretty good, though we've seen a glut of superhero movies lately.  This one starred Eric Bana, Jennifer Connelly, and Nick Nolte.  The acting and story were good, though I am partial to the TV show version starring Bill Bixby from the 70's.  In fact, I just got the first season out of the library to show the kids!
• While sick last week, the boys watched a whole slew of movies on DVD and TV: Yes Man (they said it was funny), Ghostbusters 2, and Napoleon Dynamite (they laughed hysterically and repeated quotes from it all week!).  Then Craig went back to school, and Jamie watched Hitman, Shaft (the new version with Samuel L. Jackson), and The Village (he pronounced it creepy but not scary and a little weird).

Have you seen any good movies this week?  Hope you have a good Mardi Gras Day!

P.S. If you're interested in what we're reading this week, check out my Monday post on my book blog.)

Quote It Saturday 3/5

Rough week here - we're just beginning to recuperate today.  Craig had a bad crash (a rare event) but went back to school on Thursday and is now symptom-free again.  Jamie missed all five days of school this week.  This morning, he said he felt about 50% of the way back to his normal state, so for the first time all week, he is able to sit up and attempt a little homework.  I guess I either did too much or am reacting to whatever virus triggered the kids' crashes.  I'm not feeling terrible today, but for the second day in a row, I have some crash symptoms that have been mostly absent for quite a few weeks.  Tonight is a big event for us - our annual Mardi Gras party, pretty much the only social event we host all year - so I'm hoping Jamie and I perk up a bit more.

Instead of posting a quote from a book today, I decided to post quotes from two news articles that appeared in print yesterday.  I think this is a big deal because BOTH the Wall Street Journal AND the New York Times published articles on ME/CFS yesterday when there was really no big news item to react to.  Both articles focus on the complexities and diffculties in diagnosing and treating ME/CFS and both are well-written, balanced, and factually accurate.

Here's a quote from the NYT article, which focused on the differing case definitions:

"In studying the condition, he* and other researchers exclude patients whose only symptom is fatigue, however disabling, and instead rely on a case definition that includes other cognitive, neurological and physiological symptoms. Those symptoms, they believe, indicate a complex immune system disorder possibly caused by a virus or another agent." 

(* Dr. Andreas Kogelnik, an infectious disease specialist in Mountain View, Calif.)

          - "Troubles of Chronic Fatigue Syndrome Start with Defining It" by David Tuller, New York Times

And, here is a quote from the Wall Street Journal article, which focuses on defining ME/CFS with respect to the known cluster outbreaks and also its name:

We gave case studies of patients to the [medical] trainees, described the disease as chronic fatigue syndrome, Florence Nightingale disease or myalgic encephalopathy to different groups, and then asked the trainees about prognosis, illness cause and treatment. Those who were told the condition was called myalgic encephalopathy were much more likely to give the patient a poor prognosis and to attribute the illness to a medical cause.

          - An Illness That's Hard to Live With - Or Define by Dr. Leonard Jason, Wall Street Journal 

This article also includes an absolutely wonderful video about the Lyndonville, NY, outbreak, featuring our own personal hero, Dr. David Bell.  The video brought tears to my eyes - it is very well done.  Jamie was listening while I watched and loved it, too.  You really should click the link above to at least watch the video.

So, this is a big deal, don't you think?  Two of the world's biggest and most well-respected newspapers both tackle ME/CFS on the same day and in an accurate and balanced way.  Change is in the air.

Hope you are enjoying a good weekend.

Nine Years and Counting

Happy Illiversary to me! 

March 2 always brings mixed emotions for me.  It was the day, in 2002, when my life changed dramatically, though of course I didn't realize it at the time.  Here's what I wrote in my journal that day:

The plan was to stay home today, get some stuff done, and have a vacation day in Baltimore tomorrow.  Today went OK, but now I'm feeling rotten with a bad sore throat...?

The next's day's visit to Baltimore was horrible for me, as I pushed myself through the Aquarium, science museum, shopping, and walking.  Seven years later, in March 2009, we went back to Baltimore and I was able to enjoy the trip (with meds, naps, and pacing).

For many years, March 2 was a depressing anniversary for me.  Here's what I wrote in my journal on March 2, 2003:

A whole year of my life.  Maybe it’s appropriate that I’m feeling so horrible – a reminder that it’s not over.  I just want to give in to whatever this is.  I’m so tired of trying to keep going when I don’t feel well.  I feel like just giving up and being sick, staying in bed.  It takes too much energy to live my life and I have no energy left.

I wasn't even diagnosed yet at that point and was living an exhausting, painful life in limbo.

On my 5th illiversary, I blogged about a mixture of depression and hope.  Even last year, at 8 years, I was feeling somewhat low.

So, I am extremely pleased that today, I am feeling very optimistic, at this 9-year anniversary.  Personally, 2011 has been very good so far.  I started a new treatment in January, beta blockers, that has helped me to be more active.  I just came back from a 30-minute walk with my friend!  Yesterday, I started another new treatment, Immunovir, that I hope will help with my immune system dysfunction.  I'm doing better than I have in years.  Yes, I still have CFS and still live a fairly restricted life, but even the smallest improvements make a huge difference in quality of life with ME/CFS.  And in the wider world, research is ongoing into XMRV, anti-viral therapy, and lots of other aspects of CFS.  Even the news media has started to talk about ME/CFS in a serious way.  Things are good, and the future is looking brighter.

Now, if only I could magically cure my kids, than all would be right with the world.

So, Happy Illiversary to Me!

CFS Column in Huffington Post

A friend (Thanks, Martine!) sent me a link to a new column in the Huffington Post written by a columnist "coming out of the closet"with his ME/CFS.  It's an excellent column and it has inspired lots of comments, too.  You can read the column here.

I really intended to finally write a post about my beta blockers today, but I just can't manage it.  Both boys were still home sick today.  Looks like maybe a virus, since Craig has a fever (he actually lost his appetite for a while, which is amazing), though this is 3 weeks in a row for Jamie.  Later this week, I promise!

CFS Blog with Book Discussion?

OK, I can't seem to figure this out on my own, so I guess it's time to make my brain fog public....

I remember reading (I swear, I do!) a few weeks ago on someone's ME/CFS blog (I think) that someone was going to start an online book discussion, and the first book was The Year of Magical Thinking by Joan Didion.

So....I've read the book and would love to discuss it but can't remember whose blog it was!  Anyone??