Getting Nowhere

I am feeling overwhelmed today about how much I need to do that isn't getting done.  This is pretty much a constant source of frustration for me, but some days are worse than others.  I've had a cold all week, plus my period, plus the usual CFS stuff, so it's been a triple whammy.  I suppose given all that, I should have lowered my expectations of myself, but that's another thing I struggle with!

Before CFS, I was such an energetic, productive, efficient person!  I took care of my family, cleaned the house, worked in the yard, played with my kids, exercised, and spent time every day writing and sending pitches to editors.  Now, most days, it seems I can barely manage the bare minimum of necessities.

I guess a big part of the problem is that neither my goals nor my to-do list really reflect my true abilities now (or lack thereof).  It is so hard to give up on dreams, and there are so many things I truly want to do, not to mention all the stuff I really have to do.  But my list just keeps growing, and it just feels more and more overwhelming.

And on weeks like this one, with so little energy to begin with, I just can't make any headway at all.  Just the basics of living - preparing meals, doing laundry, picking up kids, taking showers! - take up all of my energy (and sometimes more than I really had in the first place), leaving nothing left for the things I truly want to do.  And that doesn't even begin to include all the critical stuff that must be done, like school meetings, getting the kids to doctors' appointments, filing insurance claims, sorting out problems with insurance claims (a full-time job in itself!), ordering and filling medications and supplements each week, etc.

sigh....I know I have written on this topic plenty of times before here, but I was just feeling especially frustrated and overwhelmed tonight.  The ironic thing is that with so much time devoted to "rest," taking care of myself is actually one of the lowest priorities on my list which of course just leaves me with even less energy, in a vicious downward spiral.

I'm feeling too run-down to even think about it anymore.  I'm sure things will look better tomorrow.

In-Office Testing for Orthostatic Intolerance

(NOTE:  If you don't know what Orthostatic Intolerance (OI) is or you have ME/CFS but think you don't have OI, then please read this introductory OI post first.  Briefly, OI is an umbrella term that includes two conditions (and several variations): Postural Orthostatic Tachycardia Syndrome (POTS), where the heart rate goes up when upright, and Neurally Mediated Hypotension (NMH), where the blood pressure falls when upright.  Over 97% of ME/CFS patients have some form of OI, either POTS or NMH or some rarer type of dysautonomia - many people with CFS have both POTS and NMH.  To understand how a high heart rate can contribute to post-exertional crashes, read this post.  And to understand how beta blockers help and what my experience has been with beta blockers, read this post.  There, that should bring you up to date!)

Even though I have had ME/CFS for 10 years and learned about and was diagnosed with OI about 8 years ago, I was never actually tested for OI.  My son and I went to see Dr. Bell in 2004; he diagnosed my son with ME/CFS and confirmed my ME/CFS diagnosis, made by my primary care doctor.  Dr. Bell asked me if I knew about OI, and I said I had read about it but was sure that neither Jamie nor I had it, since we'd never felt dizzy or fainted.  Dr. Bell did an in-office OI test on Jamie, and I was stunned by the results - within 10 minutes of standing still, Jamie's heart rate went sky high, his blood pressure plummeted, and he felt horribly sick.  Dr. Bell explained that most people with CFS don't actually faint from OI (though some do) - we just get sicker and all of our ME/CFS symptoms get worse.  He explained to me that, based on my symptoms and his exam, I definitely also had OI, but if he tested me right then, I would get too sick to get the two of us back home on the plane.  After today's test, I now better understand what he meant!

In reviewing my Social Security application with my lawyer recently (I've been denied twice), I noticed that one reviewer of my case had written "self-reported Orthostatic Intolerance but no medical evidence."  Obviously, their reviewers don't know much about ME/CFS!  Since OI is behind most of the symptoms of ME/CFS and is one of the primary reasons why I can't work (can't stay upright for 8 hours, even just sitting), I decided to ask my doctor to make my OI diagnosis official with a simple in-office test, like the one Dr. Bell did for my son.

In preparation, I did not take my beta blocker this morning, since my purpose is to confirm the diagnosis itself (beta blockers help with POTS but they don't remove it completely - with the meds in my system, it just would have taken much longer for the test to show POTS).  I knew the beta blockers were helping to keep my heart rate down and allowing me to be much more active, but going without it this morning was eye-opening.  I strapped on my heart rate monitor as soon as I woke up and was stunned by what I saw for the next few hours.

Just walking to the bathroom, getting dressed, brushing my teeth, all raised my heart rate up into the 120's and 130's.  I was exhausted before I left my bedroom!  I tried to take it easy this morning, so as not to trigger a crash tomorrow, but even lying on the couch, my "resting" heart rate was between 105 and 115!  Since my anaerobic threshold is about 103, I was in a constant state of over-exertion, even while lying down!  I used to feel like this all the time, before beta blockers - I was constantly triggering a post-exertional crash.

I finally got to the doctor's office at 10 am, feeling like my heart was going to explode from the high heart rate and tachycardia.  The doctor who was going to do the test met with me and brought a med student along - I think it was an eye-opening experience for them both!  The test calls for the patient to lie still for several minutes, then stand up, leaning against a wall, without moving at all - no twitches, no wriggling of toes, no tensing muscles.  The med student took my heart rate and blood pressure measurements once a minute, and the doctor recorded them.

Since my "resting" heart rate started at 110, it was already sky high when I first stood up.  Even though I've understood OI for 8 years, I was still amazed by the effects of just standing still for 10 minutes.  My heart rate creeped up higher each minute.  By the 5-minute mark, I was starting to feel hot all over, flushed, and light-headed.  My fingers started to feel tingly and numb.  I was feeling more and more sick as the minutes ticked by.

And it's HARD to stand that still!  Your body just naturally wants to compensate for what is happening; I had a horrible urge to move, to flex my muscles, to crouch down.  It made me realize how much I do compensate for OI in my normal daily life, without thinking about it.  Moving around, switching from foot to foot when I have to stand in line, sitting as soon as I start to feel bad, etc.

We got to 10 minutes, which was as far as the form went, and I felt horribly, horribly sick, but the official diagnostic criteria for POTS is an increase in heart rate of 30 bpm, and I was still just a bit shy of that (of course, I'd started at 110!), so I asked if we could continue for a few more minutes, and the doctor reluctantly agreed.  He later told me that I looked so bad if I had asked for another minute, he would have said no!

My final heart rate, at 15 minutes, was 142 bpm, so my POTS diagnosis was confirmed.  However, my blood pressure hadn't dropped the way it has previously (my doctor can often see a big drop with a single BP measurement upon standing).  In fact, it went up a bit.  My regular doctor came in to discuss the results and thought it might have something to do with my body getting used to the beta blockers.  Or it could be that we needed to continue the test for longer to show NMH - which sometimes doesn't show up in people with ME/CFS until after 20 minutes of standing - but my POTS was so severe that we couldn't do that (I probably would have fainted if we'd continued).  In any case, the POTS diagnosis alone proves that I can not stay upright for very long without getting sick, and my doctor wrote a note about her previous observations of NMH in me.

When the test was finally completed (longest 15 minutes of my life!), I crouched down close to the floor and sat on a little step, with my knees up, took 2 of my beta blockers, and chugged a can of V-8 I brought with me (lots of salt and fluids for increasing blood volume).  I felt very sick and was shaking all over.  Once I was able to get up from that position, I climbed up on the table to lie down and rest.  I still had my heart rate monitor on, and my heart rate stayed above my AT for another 15-20 minutes before the beta blockers started to work and it finally began to come down.

Even though I already knew I had OI and understood it intellectually, the testing was an emotional and eye-opening experience for me.  I was all excited about it afterward, feeling like there is finally some hard outside evidence of how bad I feel on the inside!  I want to make copies of my test results and hand them out to every person who tells me how good I look or who misunderstands how debilitated I really am.  I was telling my husband about the test at dinner and asked him why he was so quiet.  He said the test results made him feel sad - more proof of how sick I was.  I can see his point, too, but I still want to hand out copies of my test results to everyone who thinks that ME/CFS is just feeling tired.

Dr. Rowe's instructions and forms for the in-office OI test are at this link. Just print them to share with your doctor.

Movie Monday 10/22

A major sick week here at our house last week.  Jamie, 18, was home from college for 4 days - a cold triggered a bad crash - and now all 4 of us have caught the virus!  So, lots of sniffling and coughing, but we have all been pretty wiped out, too - I still am today.  But the important thing is that Jamie is feeling somewhat better and is back at school.

Jamie spent his first two sick days at home catching up on all the TV shows he's missed while away!  Then he remembered how much he loves to read, and started catching up on all the books he's missed while at college.  By Thursday morning, he headed back to school...and I started to go downhill.

So, we did have some time (and lack of energy!) for a few movies this week:

Thursday night, Craig and I ate left-overs in the family room for dinner and watched This Means War, a cross between an action spy movie and a romantic comedy.  Reese Witherspoon stars as the romantic interest of two best friends who work as secret agents for the CIA, played by Chris Pine (who played the young Captain Kirk in the new Star Trek movie) and Tom Hardy.  So, there is a CIA spy plot, as well as the growing competition between the two men to woo Reese (who of course knows nothing about it).  It's kind of an odd mix of fighting, action sequences, car chases, and romance, but it was entertaining and fun.

While Ken was away on business last week, I watched Then She Found Me, a relationship movie with absolutely no action or fighting in it!  Helen Hunt stars (and directs it) as a 39-year old Jewish teacher whose husband of one year (played with boyish charm - and boyish immaturity- by Matthew Broderick) leaves her unexpectedly.  She is devastated, but a divorced father of one of her students, played by Colin Firth, provides some much-needed empathy and friendship.  The same week that her husband leaves, her adoptive mother dies, and she is contacted by her birth mother, played with wonderful joie de vivre by Bette Midler, who adds some much-needed joy and color to her quiet, dull life, but also plenty of confused feelings.  I enjoyed this slice of life movie with a gentle sense of humor and excellent acting.

Saturday night, Craig went to his homecoming dance, and Ken and I watched The Best Exotic Marigold Hotel.  I loved this movie!  It's about a bunch of older, retired Brits who are drawn in by the brochures for a hotel in India and go there, for various reasons, for a holiday.  It turns out that the Marigold Hotel's attributes may have been slightly exaggerated by its overly optimistic owner, Sonny, played by Dev Patel (of Slumdog Millionaire fame).  Though each of the visitors left the UK feeling somewhat isolated and irrelevant, they each begin to find their place in this unlikely environment.  The cast is amazing, a Who's Who of great British actors and actresses, including Judi Dench, Bill Nighy, Maggie Smith, Tom Wilkinson, and more.  Sonny's sunny disposition is contagious, and the movie is uplifting and filled with humor - I had a smile on my face through the whole thing!  Highly recommended - one of the best movies I've seen all year.

Have you seen any good movies lately?

Talking to School Personnel About ME/CFS

My son was home from college this week with his first bad crash of the school year.  Fortunately, he started to feel bad on the weekend, so he ended up missing only 3 days' of classes and  a few important assignments.  While he was home, I was coaching him on how to manage his absence, how to inform his professors, and what to discuss with them afterward.

Since I seem to have caught his cold and am now the one stuck on the couch, I will just copy the guidelines I wrote for him this week.  I just summarized the talking points that we have always used in past 504 meeting for him and his brother.  These are specific to his situation but could be easily revised for any child/teen/young adult with ME/CFS or similar illnesses at any level of schooling.  Ideally, he would have met with all of his professors before now to cover all of these points; he did talk briefly with each of them at the start of the year, but when he is feeling better, he will meet each of them during their office hours for a more thorough discussion, something along the lines of:
 

Discussion Points for Accommodation Meetings

Introduction and Overview:

• I have had Chronic Fatigue Syndrome (ME/CFS) since I was 10 years old.  It is a serious immune system disorder with genetic roots (both my mother and brother have ME/CFS also).
• I was also recently diagnosed with Lyme disease and 2 other tick infections that I have probably had for about 6 years.  I am being treated for these infections, but the treatment can make you feel worse, especially when the infections have been present for a long time.

What To Expect/How My Illnesses Affects Me

• ME/CFS is unpredictable – sometimes I feel pretty good and can manage like other students; other times I am completely incapacitated and can’t get up off the couch.
• My ME/CFS symptoms include:  low energy, low stamina, needing a lot of rest, flu-like symptoms including achiness and sore throat, cognitive dysfunction aka brain fog/difficulty learning and thinking.

• Lyme disease and the other tick infections make all of my ME/CFS symptoms much worse.  They also cause joint pain, nausea, and other symptoms.
• I always have some symptoms, but most days, I can manage OK as long as I get a lot of sleep and rest whenever I need to.
• However, once in a while, I experience a severe flare-up of symptoms (or “crash”) that completely incapacitates me.  These can be triggered by too much exercise or exertion, stress, or being exposed to a virus (like a cold or flu).  When that happens, there is nothing I can do about it except rest and wait for it to pass.  During these times, my cognitive dysfunction becomes very severe, and I am unable to do any schoolwork.  These crashes can last anywhere from a few days to a few weeks but usually last about a week.
• For math and classes requiring any kind of computation:  Part of my cognitive dysfunction includes dyscalculia, a defined learning disability for mathematical computation (similar to dyslexia for reading).  This causes me to have difficulty with simple computation.  For instance, I might set up a complicated problem correctly but then transpose digits or add 2 + 3 and get 6.  The worse my other symptoms get, the worse the dyscalculia gets.  When I am crashed or flared-up, it becomes severe, making math-related work impossible.
• For classes requiring writing:  When I am crashed or flared-up, it is almost impossible for me to write because my cognitive dysfunction becomes severe.  Translating thoughts into written words is a complex task that I just can’t manage when my symptoms are severe.

What I Need/How You Can Help:

• If I am absent due to illness, it means I am severely ill and unable to do any work, even from home. I will e-mail to let you know of my condition and any outstanding assignments and will let you know when I am well enough to return.
• If I have been absent for more than 1 class, I will need extended deadlines for assignments and extra time to catch up on missed work.  Once I am well enough to return to class, I may still have reduced stamina and be unable to do as much work as I normally do.
• I need extended time for some tests, especially math or writing.  It is even better if I can split longer tests into shorter increments.  My dyscalculia gets worse over time as I work.  It is also helpful if I can use a calculator to help prevent simple computational errors due to dyscalculia.
• If I have been absent due to illness for an extended time (more than a week), I may need to shorten and/or skip certain assignments (with your agreement) in order to catch up, decreasing the volume of work while still ensuring mastery of the subject matter.
• Medical absences should not affect grading.
• If I have been ill near the end of a semester, I may need to take an Incomplete in the class temporarily, to allow me some extra time to finish the work.

Any questions or concerns?
_______________

So, next week, our older son will talk to his professors about these points, and we will (finally) have a 504 meeting with our younger son's high school teachers to discuss these same things.

We usually also print and bring hand-outs for the teachers, nurses, and administrators, like these:

• ME/CFS in Children: Fact Sheet for Educational Professionals (CDC)
• School Nurses Can Improve the Life of Students with ME/CFS 
• The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations
  

 

How about you?  Do you have any tips or suggestions for talking to teachers about ME/CFS?

 

Movie Monday 10/15

Still struggling a bit here.  Craig finally went back to school today, three weeks after his knee surgery!  I know I said the same thing last Monday, but that was short-lived.  One day on crutches at school, and he was totally wiped out the rest of the week.  He seems more fully himself now and even has a friend over this evening for a school project, so hopefully tomorrow's check-up with his surgeon will bring good news. 

However, now Jamie is home sick!  He seems to have been exposed to one of the many viruses going around at school and is in a bad crash.  The good news is that he went 7 full weeks of college without missing a single class (!)...but now, of course, what we all knew was coming has arrived - the unpredictable crashes of virus season.  He is worried about his classes and deadlines he can't meet, so I am trying to help him learn how to communicate with his professors and explain the effects of CFS.  He talked to each of them at the start of the semester, but that first big crash of the school year is always a challenge.  For now, he's here at home, resting and catching up on all the TV he's missed while away!

Surprisingly, with all this downtime, we haven't watched many movies this week.  Craig was preferring TV shows last week and also had a hankering for some old favorite Halloween movies from Disney Channel (comfort TV!) that I grabbed for him at the library.  We did however watch another old comedy, continuing our streak from last week:

While Ken was out golfing, Craig and I watched Stripes, starring Bill Murray and John Candy.  Craig is a fan of both actors from classics like Planes, Trains and Automobiles and Groundhog Day.  As expected, he loved the silly comedy, though I had forgotten how much nudity was in it!  I think we may have gotten an extended version from the library - I don't remember quite that much nudity in it when I saw it in the theater in the 80's!  Anyway, we enjoyed the laughs.

Ken and I are still enjoying past seasons of The Good Wife and Treme, both excellent shows.  As a family, we are watching Bones, Glee, and Revolution each week.

Have you seen any good movies or TV this week?

(If you are also interested in what we are reading, check out the Monday post on my book blog.  And this week, I also posted about what I was cooking this weekend!)

Fall 2012 CFSAC Videos, Day 2

So, scroll down to see the video clips form Day 1 of the recent CFSAC meeting in Washington, DC.  And here are the clips from Day 2:

Day 2 Opening Remarks and Agency Updates:



Presentation: Social Security Administration:



Public Comment Period #3: (I haven't seen this yet so don't know who is speaking)



ME/CFS Organizations, Updates:



A Pathforward:



Finalize Recommendations:



That's it!  Looks like I need to get busy and watch the rest of these!

Video Clips of CFSAC Meeting, Day 1

Last week (was it only just last week?), I attended the Fall 2012 CFS Advisory Committee Meeting at the Department of Health and Human Services.  I was only able to be there for a few hours, and I gave my testimony during the public comment period.  The HHS has posted video clips of each section of the meeting on Youtube, so I thought I'd share the links here for everyone who wasn't able to attend the meeting.

I think I will post the clips from Day 1 here and the clips from Day 2 in another post, so it's not too long.

Welcome and opening remarks:



Presentation:  Biomarkers: An Overview and Future Look:



Public Comment Period #1 (am):  My testimony is at 11 min, 15 sec, Denise Lopez-Majano, founder of Speak Up About ME, gave her son's testimony starting at 44:35, and the last speaker is Laura Hillenbrand's father.



Agency Updates from HRSA, NIH, and FDA:



FDA and Drug Development:



Public Comment #2 (pm):  Faith Newton gives her testimony at 30 minutes; Faith is a good friend of ours - her teen son has CFS and goes to the same high school as my sons and she is an educational expert.



Committee Discussion and Plans for Day 2:

The Daily Battle

I was thinking (again) today about how every single thing I do every single day is such a struggle and requires such a huge effort of will.  No one else - not even the people closest to us - could possibly understand what it is like for us, how every moment of every day is such a battle and requires so much effort.

Getting up in the morning is a battle.  I actually sleep quite well, thanks to medications to correct my sleep dysfunction, but I am still never ready to get up in the morning.  I force myself up out of bed, thinking of all the things I need to get done.

Getting up from my nap each afternoon is an even bigger battle.  By the time I lie down after lunch, I am usually completely exhausted, even if I slept a solid ten hours the night before and wasn't very active in the morning.  I need that nap; it would be physically impossible for me to keep going.  And it does help.  But getting out of bed after I wake up is excruciating painful.  Only the thought of needing to pick up my son or whatever else I need to do that afternoon finally propels me up.  Some days, like today, I feel as if my entire body has been filled with wet cement while I slept, as if my limbs literally weigh too much to lift them up off the bed.

Getting up off the couch to make dinner every evening is a huge battle.  By late afternoon/early evening, I am completely worn out, in spite of the nap (it's even worse without the nap), but I know I need to feed my family, so I force myself to get up and get moving.

Getting up from the table after dinner to help clean the kitchen is a battle, but I know my husband hates doing dishes, so I try to help as much as I can.

And every single step in between, all day, every day, is a battle, a struggle.  Just trying to find the energy to keep going each day, to do the minimum of what needs to be done, is exhausting in itself.  And I'm one of the lucky ones!  I'm fairly well off (in CFS terms), thanks to 10 years of tirelessly searching for effective treatments (and finding some!)  I know there are plenty of people with ME/CFS who are much worse off, who literally can't get out of bed or off the couch, who couldn't even dream of making dinner for their family.

And yet, the Social Security Administration thinks I could work full-time.  That is so crazy, it is laughable!  I saw that one of the early reviewers of my SS disability application misunderstood all the diary pages I included, with ratings of how I felt each day.  On average, I am somewhere around 2.5 on my scale of 1 to 5 (one being good; 5 being badly crashed), so they concluded I feel good most of the time.  So, I compared my own scale to the one that Dr. Bell developed for measuring disability.  My 1 (i.e. very good) is about a 55 on Dr. Bell's scale - that roughly compares to being able to do 55% of what I could do before I got sick...and that's on my best days (which are rare)!  I often think that if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed.  There's no way for a normal person to understand our daily struggle.

But life goes on...and so do we, struggling and battling every hour of every day just to do the minimal basic things we need to do to get by.  There is no energy left for cleaning or lawn work or organizing closets or painting a room or any kind of home improvement (or most other activities) whatsoever. 

Most days, I am grateful for the limited energy I have, and I face each day feeling positive and ready to do what I can.  But some days, like today, it all just feels like too much effort, and I wonder how I can possibly go on and face another day of constant battles.  I just want to crawl into bed with a stack of books and take care of myself.

But, as I often repeat to myself (as many times as necessary) at the end of rough days like today: Tomorrow is another day.  And I will start again and somehow find the will to pull myself out of bed and do it all again...somehow.

One of my favorite quotes (no idea what the source is - I saw it on a plaque in a catalog years ago):

Courage doesn't always roar.
Sometimes courage is the quiet voice 
at the end of the day saying,
"I will try again tomorrow."

Movie Monday 10/8

Well, we had another loooong week with Craig stuck at home, trying to recover from his knee surgery.  He finally returned to school today - woohoo!!  Not sure if he will make it in again tomorrow - he is pretty tired and in a lot of pain now - but it's a start.

So, he spent much of last week on pain killers and zoned out watching TV.  He watched innumerable episodes of Practical Jokers, his new favorite show, and went through many episodes of The Office on DVD (most for the 10th time or so).  It's very hard to convince Craig to watch movies he hasn't seen before - he likes to stick to old favorites - but in bored desperation, I did talk him into a few comedies (his favorite genre):

• We watched National Lampoon's Vacation, a classic comedy that I have seen probably a dozen times, but it was Craig's first time.  As expected, he loved it and we laughed a lot, and it maybe convinced him that  Mom isn't totally unreliable when it comes to movie recommendations!
• We also watched one of Ken's old favorites, Airplane!, but the old jokes and silly puns didn't go over very well with Craig.
• Friday night, in need of familiar comfort, Craig asked if we could watch Planes, Trains, and Automobiles again. This hilarious comedy starring Steve Martin and John Candy is our go-to movie for our worst sick days when we need a lot of laughs!  Somehow, it is even funnier when you know exactly what they are going to say before they say it!
• Saturday night, I went to Redbox to pick up a movie Craig has been wanting to see: What To Expect When You're Expecting.  I was pleasantly surprised by it. From the ads, I expected just goofy comedy (which was why Craig wanted to see it!), and it was funny, but it was also sweet and heartwarming. It's an ensemble drama/comedy about a bunch of couples who are all expecting babies. In typical fashion with these ensemble casts, the couples didn't know each other at the beginning, but various connections between them became apparent as the story unfolded.  I even cried a bit toward the end!  It's not going to win any Oscars, but it was an enjoyable, entertaining movie.
• Last night, with Jamie home for the day, we introduced the kids to another old favorite, Fletch.  Since Craig enjoyed Vacation, I thought he and Jamie would both like another classic Chevy Chase comedy...and they did!  Lots of laughs, plus a fun plot about a reporter (Chase) who is undercover to investigate a drug ring.  Chase's disguises and fake names are the best part!

Ken and I continued to watch episodes of The Good Wife and Treme on DVD, both amazingly good shows, and cried over Grey's Aanatomy!

Have you seen any good movies or TV shows lately?

Today's the Day I'm Not Doing Anything

Don't you just love Bruno Mars' The Lazy Song?  It could be an anthem for ME/CFS (without "lazy" in the name of course), and it perfectly describes how I am feeling today:



It has been another loooong, difficult week.  Craig is still in bad shape, trying to recover from his knee surgery two weeks ago, but in a lot of pain still and pretty exhausted.  He hasn't been to school in two weeks.  We saw the surgeon yesterday who said this is all normal.  He said,"I drilled holes in his knee - it should still hurt!"  He said the recovery will be similar to if he fractured a bone.  So, two more weeks (at least) with the immobilizer and crutches.  Craig asked for ibuprofen this morning instead of Percocet, so I am hoping that is a good sign.

As for me, that trip to Washington, DC, on Wednesday really did me in!  I was only in the meeting for 3 hours and slept/rested on the bus there and back, but by the time I got home at 6 pm, I was totally wiped out - severe aches all over, sore throat, and killer headache.  Yesterday was my husband's birthday and Craig's follow-up doctor's appointment, so I spent the day running around and cooking (but, man, those lemon bars were amazing!).  I am still exhausted this morning and so very glad it is Friday and we don't have to be anywhere.  Hence, the decision not to do anything today....it can all wait until Monday, right?

I am even considering ordering pizza for dinner - damn the gluten-free/dairy-free diet!

P.S. I have NO idea why there are guys in monkey masks in this music video!

CFSAC Meeting - My Testimony

The U.S. Department of Health and Human Services' CFS Advisory Committee (CFSAC) will be meeting tomorrow and the next day, October 3-4, 2012, in Washington, DC.

I will be attending the meeting for a few hours tomorrow and giving my testimony at about 11:15 am.  The committee has increased the time for public comment, with two public comment periods the first day and another on the second day - you can see the full agenda here.

And, they will be providing a live video streaming of the entire 2-day meeting!  Just go to this link, and you can watch and listen live to any part of the meeting (or the whole thing).

_______________________

And, for a preview, here is my written testimony:
 

My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 14 and 18, have it also; they’ve both been sick for eight years. Today I would like to focus on the urgent need to educate medical professionals, school administrators, and the general public about the severe and debilitating effects of ME/CFS, especially on children, teens, and young adults.

Every ME/CFS patient – no matter what their age – has his or her own horror stories of being mistreated and misunderstood by medical professionals, the very people we turn to for help and support.  These abuses are even more appalling when they happen to children and young people.  The following examples from an online parents’ support group illustrate the urgent need for education of both medical and educational personnel.

One pediatrician told a young girl with ME/CFS that the police would come and put her mother in jail if she did not get up and go to school.  Another pediatrician evaluated this same girl for just 20 minutes and determined she was school phobic and needed to take anti-depressants.  A general practitioner told this same family that he didn’t have time to read or research and dismissed them.  Imagine the impact on a young, developing psyche of being subjected to this kind of disbelief, derision, and lack of compassion over and over.

A young man of 20 who’d had ME/CFS for several years and suffered from the same kind of sleep dysfunction as millions of others with ME/CFS sought the expertise of a sleep specialist. After testing, the doctor told him he just needed to go to bed earlier. Then, this doctor proceeded to review every previous medical decision and treatment the boy had tried and told the family why each of them wouldn’t work (offering no alternatives).  He grilled this family relentlessly for a half hour. In the mother’s words, “My husband and son and I were so defeated after that appointment that it was almost 2 years before we could start seeking treatment options again. We just felt like no one believed us, and there was nothing anyone could do.”

A mother whose three sons have all been diagnosed with ME/CFS for over 10 years has a family “friend” who is a doctor who thinks she is crazy and has accused her of Munchausen’s Syndrome because she has tirelessly sought answers and help for her sons. Last year, after a decade of doctors’ appointments and research, this mom finally discovered that two of her sons have had Lyme disease and several other tick infections for many years.

A teen girl with ME/CFS saw an Infectious Disease specialist at a children’s hospital who berated her for using a wheelchair in order to manage occasional outings to the mall. He said that when his four-year old asked to be carried, he did not pick her up but made her walk so she would not develop any bad habits. The teenager left that appointment in tears after having her severe illness compared to a tired preschooler.  That same doctor told another teen girl, "Stop thinking about it, go to school, and it will go away!"

One mom who had learned about Orthostatic Intolerance took measurements of her daughter’s heart rate while standing and presented the data to their doctor, along with listing other common OI symptoms her daughter was experiencing such as itchy-feeling legs when standing. The doctor dismissed her data, saying contemptuously, “My heart rate would go up if my mother was standing next to me measuring it, too!” Then he told the girl to put some lotion on her itchy legs and “go back to school tomorrow!”

Our own family has been fortunate not to encounter such blatant ignorance or contempt from doctors, only because we were able to see top CFS specialists like Dr. David Bell and Dr. Susan Levine.  In addition, our family doctor understands CFS and has other patients with it, and our pediatrician was very open-minded and willing to learn, spending hours on the phone with Dr. Peter Rowe to learn how to diagnose and treat Orthostatic Intolerance.  They are the exceptions.

Most kids with ME/CFS and their parents have had similar horrifying experiences with school personnel.  That girl whose doctor refused to even consider Orthostatic Intolerance did finally get a diagnosis of POTS from another doctor.  When that diagnosis was presented to school officials, they asked the school psychologist if she agreed with the POTS diagnosis.  She responded derisively, “I agree that her doctor says she has POTS.”

Another teen girl with ME/CFS who was an honor student in her high school became much sicker while her underlying infections of EBV, HHV-6, and Rocky Mountain Spotted Fever were being treated. Her parents requested that she be allowed to drop two of her AP classes in order to lighten her load and allow her to graduate on time.  In response, school officials demanded that she attend an exam the next day, though she was sick in bed with a high fever at the time.

Our younger son’s ME/CFS diagnosis was met with contempt by his elementary school nurse. She insisted that Craig couldn’t have CFS because “he looks fine on the days when he comes to school.” Despite a letter from our pediatrician specifically stating that Craig had been diagnosed with CFS, the school nurse continued to tell the principal that he did not have a diagnosis. Even worse, she actually called our pediatrician and reprimanded her over the phone for 45 minutes for her diagnosis. The following year, she was named School Nurse of the Year for our district.

These anecdotes are just the tip of the iceberg.  Children and adults with ME/CFS are being bullied, ignored, and derided every day by medical professionals and school officials who do not understand – or even believe in – our illness. This is deplorable and inexcusable given the bulk of scientific research into all aspects of ME/CFS that exists today. Education is urgently needed to inform medical and educational personnel and the general public about the severity of ME/CFS, its incidence in children and teens, and the types of treatment and support that are available for all patients.

Movie Monday 10/1

Still struggling here.  I am feeling better, but our son is still in bad shape from his knee surgery last week.  He felt better on Saturday - enough to manage without the prescription pain killers - so we let him go out with friends, but it seems that was too much, too soon for him.  He is now in intense pain again, needing the heavy-duty pain meds and groggy from them.  So, he is still not in school.  Hopefully, tomorrow will be better.  He certainly has his appetite back!

So, with last week's Monday surgery, I am two weeks behind on movie reviews - we watched a few these last two weeks to help Craig through his recovery:

I found Wild Target at the library and picked it up because Craig likes comedies, and it stars one of his favorite actors from the Harry Potter movies, Rupert Grint (who played Ron Weasley).  It turned out to be a great sleeper - Ken said it was the first "quirky" movie I've brought home that was really good (high praise!).  It is pure fun!  Victor, played by Bill Nighy, is a top British assassin who has been hired to kill Rose, played by Emily Blunt, who has just pulled off an art forgery.  Blunt is at her cutest, quirkiest best in this movie.  Unaware that Victor has been hired to kill her, she bonds with him when he saves her from another assassin sent to kill her.  Grint plays a young man in the wrong place at the wrong time who gets caught up with the two of them when they escape the scene and ends up becoming Victor's protege.  The whole thing is very silly and very clever with lots of action...but also surprisingly warm.  All three of us loved this movie, and Craig watched it again with his brother after his surgery.

Next, we watched We Bought a Zoo with Craig - he was reluctant to watch it at first (thought it would be too childish), but we all really enjoyed it.  It is based on a true story, with Matt Damon starring as a dad of two kids who recently lost his wife.  In an effort to hold his family together, he moves them out to the country to an old house that comes with a zoo attached!  Scarlett Johansson plays the head zookeeper.  Plenty of funny moments, as you would expect, with all those animals and an adorable little girl, but this is also a very heart-warming movie.

During one of Craig's exhausted, groggy days, he and I watched the new The Three Stooges movie.  It was about as goofy and stupid as you would expect - mildly funny and perfect when you're on pain meds and can't concentrate much.  Though Craig didn't remember seeing the original Three Stooges when he was little, I enjoyed seeing how well they recreated the silly threesome - Will Sasso was especially good as Curly.  You know if The Three Stooges are your kind of thing or not!

This weekend, Ken and I watched Toast, an independent film based on a memoir by Nigel Slater, who is apparently a famous UK chef and television personality.  Freddie Highmore (who played Charlie in the more recent version of Charlie and the Chocolate Factory) plays the young Nigel.  Though his mother cooks only canned foods (and toast!), Nigel is fascinated by cooking and pores over gourmet cookbooks in his bed at night with a flashlight.  Nigel's life is far from easy, but along the way, little by little, he learns more about cooking and uses food as a way to pull himself out of his dismal life.  It's a wonderful movie, filled with gentle humor and warmth.

Have you seen any good movies lately?