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 (it also includes links to articles to share with your doctor).  Briefly, OI is an umbrella term that includes two common conditions (and other 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.  In one study, over 97% of ME/CFS patients had NMH, multiple studies have shown about 67% of ME/CFS patients have POTS, and some have rarer type of dysautonomia. Many people with ME/CFS, including my son and I,  have both POTS and NMH.  In addition, many people with fibromyalgia, long-COVID, EDS, and Lyme disease also have OI. To understand how a high heart rate can contribute to post-exertional crashes, read this post.  To understand how beta blockers help and what my experience has been with beta blockers, read this post.  For a more detailed examination of the Challenges of Diagnosing OI, read this post (which explains why this kind of simple in-office testing is more accurate than the standard tilt table testing). 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 many 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. Low-dose, extended-release beta blockers help with POTS and NMH 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 and NMH.  I knew the beta blockers were helping to keep my heart rate down, stabilizing my blood pressure, 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 or more of standing (one study indicated 50 minutes). 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 or you can get instructions and forms from the Bateman Horne Center for the NASA Lean Test (same thing). Just print them to share with your doctor. And please refer to  Challenges of Diangosing OI for tips on how to get accurately diagnosed.

And please note that there are many options for treating OI, not just beta blockers. For more information, see my overview OI blog post, Challenges in Treating OI post, or an article I wrote to share with doctors that includes scientific references at the end: Part 1: Diagnosing OI and Part 2: Treating OI.  

 

Have you been tested for OI yet? 

 

Did you get a standing test or a tilt table test?

  

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

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

NOTE: Refer to my earlier posts, School Accommodation Plans for Kids with ME/CFS and Related Illnesses and Example School Accommodations for more information. 

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
  

 

Do you have any tips or resources for talking to school personnel?

 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

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?

Respected and Beloved CFS Advocate Dies

I have written here before about Dr. Rich Van Konynenburg's Simplified Methylation Protocol.  This tireless researcher devoted years of his life to taking a complex treatment protocol and creating and testing a simplified version appropriate for people with ME/CFS.  He just recently updated the protocol once again, based on feedback from those who have tried it.

On Wednesday, this sad note was posted on a discussion group by Rich's wife:

"Rich died early this morning. It appears that he suffered a massive heart attack in his sleep. He did not have a history of heart disease, so this was sudden and quite unexpected. It doesn't seem possible to me that Rich is gone. I am at a loss to express how profoundly I will miss him (I already do!).

I am trying to figure out how to begin notifying everyone who will want to know. Please feel free to repost this message on any forum or group where people who interacted with Rich will want to know of his passing.

Diana Van Konynenburg"

My own son, Jamie, has been using parts of Rich's protocol to try to improve his overall level of functioning and ability to tolerate his Lyme treatment (with some success).  When I e-mailed questions about the protocol to Rich, whom I had never met, he answered my note - in great detail - and continued to advise us whenever I had questions.

For those interested in Rich's theories, this article on glutathione explains some of the basis behind his theories. 

The ME/CFS community has lost a great researcher and advocate.  May he rest in peace.

One Day At a Time

Once again, sorry for being absent so much lately.  It has been a difficult week, and I have had no time or energy for blogging (so, also sorry I haven't been visiting blogs lately!).  So a quick update...

Craig recuperating with his new little friend, a pet hamster

My younger son had knee surgery on Monday.  It was arthroscopic, but the surgeon did a fairly extensive repair, so Craig's leg is in an immobilizer and he is on crutches for at least two weeks.  I expected him to bounce back pretty quickly, but the brief surgery really took a lot out of him.  He is still in quite a bit of pain and still needing pain meds, so he has also been very groggy.  Mostly, he has just been exhausted all the time.  His CFS is fairly mild and normally well-controlled with Florinef - he even plays soccer - but stuff like this knocks him out.  Just being on crutches for a couple of weeks last spring really wore him out - he'd go to school one day, then crash for the next two days.  So, although we are hoping he is able to go to school on Monday (he really hates missing school), we know this could be a rough ride for him for several weeks.

Our newest family member

I felt good on Monday - even took a short walk around the parking lot while Craig was in surgery - but crashed severely for the next two days.  It might have been the stress (though the surgery was quick and went well) and the running around or perhaps a viral trigger, but I was pretty useless for much of this week.  I am doing better now, but all of my energy has been focused on taking care of Craig - helping him get around, keeping track of his meds, bringing him food (14-year old boys eat constantly!), and changing his ice packs.  He and I have had a very low-key week here - lots of naps and TV.  We did get out of the house today because he's getting a little stir-crazy.  We went out to breakfast, and then I surprised him with a stop at the pet store for a hamster - a little buddy to keep him company while he recuperates!

I did (finally) write my testimony for next week's CFSAC meeting.  I don't know yet if I got a speaking slot, but at least my written testimony will be part of the record.  This time, I focused on the need for urgent education of medical and educational personnel and illustrated that with some horror stories from our online parents' group.  I am sure each one of you has your own horror stories, too; I am hoping this will have an impact on the committee members.  I'll post my testimony separately.

OK, nap time after I finish the lunch dishes. 

NOTE:  If you or a loved one with ME/CFS needs surgery, be sure to share these guidelines with your surgeon and anesthesiologist beforehand.  The staff at the orthopedic center Craig went to was great and very understanding about the issues with OI.

Mourning Losses

I have had ME/CFS for ten years now.  You would think that I would be past all the disappointments and be done mourning the life I once had, that I would have adjusted by now to this new life filled with restrictions and limitations.  And I mostly have, but once in a while, the grief sneaks up behind and takes me by surprise, feeling almost as fresh as in those first years of loss.

I am generally quite happy and content these days.  That is simply my outlook on life.  I have always been happy with my life, during each of its unique phases, bearing up fairly well even during that devastating period when I first got CFS in 2002, mourning and then moving on.

But this has been a difficult week for me.  Three times this past week, I was out in public and suddenly felt so horrible, so fragile that I had to flee and felt as if I barely made it back home in time before collapsing.  This is unusual for me these days, in part because of medications and in large part because I so carefully monitor and restrict my activity level, living a very cautious life.  All the caution in the world didn't matter this week, though, and I crashed badly during my book group meeting Wednesday evening, as I wrote here earlier this week.

I have been trying to rest and recover, but it is slow going.  Some emotional upsets (probably caused in part from my crash - the emotional and physical effects of CFS are a never-ending cycle!) on Thursday set me back again, then I spent 90 minutes yesterday meeting with my disability lawyer, trying to prepare for my final disability hearing in December.  That was, again, both physically and emotionally exhausting, as our discussion focused mainly on how to prove that I am as sick as I claim to be (more on that later).

This morning, I was still feeling pretty crappy but trying to make the best of it - sitting out on the deck with a good book - when that sense of mourning just snuck up on me again.

The weather is gorgeous today.  We were supposed to go camping but had to cancel, in part because of how sick I've been this week (another sore point - the Social Security Administration thinks that since I can go camping, I can work).  Friends on Facebook are posting about all their fun activities this weekend, and I am feeling isolated and trapped.  Our local Oktoberfest is this weekend; we used to go every year with friends, to eat German food, drink beer, and watch the kids play the games and ride the rides.  There's no way I could manage a festival today.  The weather is perfect.  It used to be our family tradition to take a hike every weekend.  That's not even in the realm of possibility today!  Our house and yard are a mess, but I can't help with those.

Despite the sunshine, I am feeling a bit gloomy, just missing the old, active me.  It seems that with CFS, the mourning never really ends - though, of course, it is much rarer these days.

I am feeling a bit better, just writing about it.  It is so good to have a place where I can express these feelings, a place where everyone understands, where I don't need to worry about making anyone feel uncomfortable in the face of the realities of my illness.  Thanks for listening.  I am heading back out to the deck, to my very comfortable lounge chair and my very good book.  Hope you are enjoying your weekend!

Hitting the Wall and Craving Comfort

I hit the wall last night during a book group meeting and had to abruptly leave in the middle of our discussion.  I literally ran to my car, feeling as if I would fall apart if I didn't get home, to my bed, as fast as possible.  I felt as if my entire nervous system had short-circuited.   Up until then, it had been a pretty normal - even good - day for me.

Tuesday's nasty wet weather had passed through, leaving my extra aches and exhaustion behind with it, the sun was shining, and I felt good.  I felt like myself - able to concentrate and focus on what I wanted to do, able to write, even a bit energetic.  I  took a longer walk than usual - a whole 45 minutes!  I wore my heart rate monitor and carefully stayed below my AT, but it was so nice to be out in the sunshine and feeling free.

I took my daily nap after lunch and jumped up at 3:15 to go meet my son at his soccer game.  I was a little tired, but that's normal when I first wake up.  I found the school and saw that their soccer field was a long, long walk from the parking lot, so I carried my chair and my bag over there and sat to watch the end of the game and chat with another mom.  Craig and I came back home, and he wanted to watch TV, so I went up to my bedroom so I could finish my novel for book group.  As I crawled into my bed, I realized I was feeling pretty achy, but I figured the rest would help me. 

At 6 pm, I still hadn't finished the book (20 pages to go!), but it was time to meet my two closest friends for dinner.  I was a bit worn out but attributed it to hunger and the late hour (we usually eat an early dinner to address Craig's and my low blood sugar).  I drove over to the restaurant in my old VW convertible, enjoying the mild weather and fading sunshine.  I thoroughly enjoyed dinner with my friends and getting caught up.  I felt the beginnings of a headache but attributed it to waiting too long to eat.  I took 1 Sudafed, hoping it wouldn't be too much too late to disturb my sleep, and the headache faded a bit. 

The beginning of the book group meeting was great.  We had a nice turn-out, and everyone had enjoyed the book.  The discussion was lively and interesting.  I felt fine at first, but gradually, symptoms began creeping in.  My headache started to worsen.  My legs began to feel achy - just a bit at first, then worse and worse.  My face started to flush and I felt hot all over (obvious OI symptoms).  I tried elevating my legs, I drank lots of water, but nothing was helping.  I was watching the clock now.  We had started to discuss choosing our next book, so I thought I could make it to the end of the meeting.  And, then, suddenly, I couldn't.

That phrase, "hitting the wall," is the perfect description.  I just suddenly felt as if I could not stay in that chair for another moment.  I abruptly stood up, grabbed my bag, made a quick apology, and fled.  The top was still down on my car, and it was a cool evening, but the chill felt wonderful to me.  I tore out of the parking lot and drove home as quickly as I could.  I took big gulping breaths of the cold night air, feeling as if I'd been suffocating and suddenly had oxygen again.  I got home in record time and went right up to bed.  I wanted to get into comfy clothes but couldn't even manage that at first.  I crawled into bed and under the covers and started sobbing uncontrollably, both from pain and discomfort, as well as relief.  I was shaking.  I've never been so glad to be home in my life.

When I calmed down a bit, I limped over to the dresser, peeled off my clothes, and pulled on my oldest, softest pajamas and big fluffy socks.  I crawled under the covers again and picked up my book, thinking over and over how glad I was to be home.  I was craving comfort - anything warm and soft.  I just wanted to be a child again, to have someone put their arms around me and comfort me, tell me it was OK now, I was safe, and pat my back.  I asked my husband for a cup of mint tea and slowly relaxed.

I woke this morning feeling as if someone had thoroughly beat me last night - sore and achy all over, exhausted.  I am still craving comfort - wishing my mom were here to make me homemade custard like she did when I was a kid.  I'm wearing soft yoga pants and an old t-shirt, bundled up in a fleece blanket, and still aching all over.

It was an unusual experience for me just because I can normally read the warning signs better than that.  Even though the symptoms came on gradually over several hours, they seemed to come from nowhere.  This is THE defining characteristic of ME/CFS, right?  These sudden crashes - that is the only word to accurately describe it, a crash.  Who knows what caused it this time?  The long walk in the morning?  Doing too much all week?  The extra walk at the soccer game?  Or perhaps even a viral trigger my son brought home from school - he spent 2 days earlier this week in a mild crash from being exposed to something at school.

Sometimes, it doesn't matter what caused it (and certainly, you can drive yourself crazy trying to figure it out), but isn't it amazing that this crazy illness can still surprise me like that after 10 years?  Ambushed.

Maybe I could make custard using coconut milk....

Movie Monday 9/17

Now that school has started and Ken and Craig have to get up so early (not me!), we don't have much time for movies, but Ken and I did watch one this weekend:

• Crazy Stupid Love, starring Steve Carell and Julianne Moore as a married couple who are separated.  Emily (Moore) asks Cal (Carell) for a divorce in the opening scene, and he is crushed and lost without her.  He's also the quintessential dorky dad, until he meets Jacob, a young, cool guy, played by Ryan Gosling, who gives him a manly make-over.  Though Cal gamely tries to start over (and has some success with his womanizer lessons!), he still yearns to have his family and his old life back.  Meanwhile, his teen son is struggling with his own love problem - a crush on the babysitter.  It's a touching drama but also has lots of funny moments, as things get more complicated and the characters' lives entwine in unexpected ways.  A scene toward the end where it all comes to a head is hilarious!  We enjoyed this one, more than I expected.

Have you seen any good movies lately?

Gluten-Free/Dairy-Free Diet Update

Well, it has now been 7 weeks since my son, Jamie, and I started a gluten-free and dairy-free (and oat-free) diet, on the advice of a biochemist/dietician we have been consulting for Jamie (see previous post for the details).

Jamie says he has not noticed any difference.  He is definitely running out of patience for the restricted diet!  He's been at college for three weeks now, and, although his college has an excellent gluten-free diet program, it is tough to be 18 and watch all your friends eating your favorite foods when you can't.  He says his GI symptoms actually worsened a bit, but that is almost certainly due to the change to on-campus eating.  Though he is eating healthy foods, it is a different diet than at home, and his GI system is always sensitive to changes (like when we travel).

As for energy and overall well-being, he is definitely doing much better, as I reported earlier this week, though we think that is mainly due to starting beta blockers.  It is impossible to tease out individual cause and effect, as he started the diet 7 weeks ago, started beta blockers 4 weeks ago, and we have added a bunch of new supplements (on the advice of the same specialist) over the past 3 weeks.  However, during the first 3 weeks of the dietary restrictions - with no other changes - we didn't see any change.  It is possible, though, that some of his improvement is due to the dietary changes and "unblocking" his methylation pathways.

As for me, I have definitely not seen any improvement overall nor in energy, but my GI symptoms are much better.  I have grown accustomed to constant GI discomfort - cramps, gas, bloating - every day (I am usually OK in the morning, then the symptoms hit me hard in the afternoon and evening).  These are almost completely gone on this diet!  Now, I'm not sure whether eliminating gluten (and oats) has anything at all to do with this improvement or if it is just because I have been so much stricter in avoiding dairy.  I developed a dairy-intolerance when I got CFS, but over the years my habits have slipped, and I was "cheating" a lot!  Now it is clear to me that I need to be strict about it, and that my problem is not just lactose but likely casein (a milk protein).  On the other hand, I have been a bit constipated on this diet, despite lots of fruits and veggies - my body is definitely missing my daily oats and whole grains!

So, that's where we both are.  Jamie agreed to try this diet for six weeks and it has now been seven, so he wants to quit.  I am hoping to convince him to go slowly and gradually when adding foods back in so that we can really watch the effects.  It has been a struggle to get him to continue the daily record-keeping on his own - I have done it for him for the past 8 years!  But he will be home today for his Sunday morning gluten-free pancakes and his medicine refills, so hopefully, I can convince him of how important it is to keep careful records while transitioning back and to go slowly.

As for me, I will probably try adding oats back in first because I really miss my morning oatmeal!  Being gluten-free doesn't bother me that much, so I may continue it - not sure yet.  I do know I definitely need to remain strict about the dairy-free part.

I meant to list some of our favorite gluten-free and dairy-free foods also, but that will have to wait for another post later this week - this one is too long already!

I am interested to hear about other people's experiences with restricted diets - anyone experience significant improvement?

Time to make the pancakes!

Sunday Evening Update:  Jamie decided to hang in there with all the diet restrictions for 1 more week since we are changing something else this week (adding D-ribose and creatine back in - he has been forgetting to take them since he started college!).  He says he wants to start adding foods back in when there are no other changes going on so we know for sure the diet didn't affect him and he never has to do this again!  lol  I will let you know how it goes...

Movie Monday 9/10

 I am determined to try to stay on top of my blogging this week!  So here is my Monday post...on Monday! Woohoo!  I am so proud of myself.

For those interested, here is a quick update to yesterday's update on Jamie and college.  He stopped by this afternoon to pick up a math assignment he left here yesterday (CFS/Lyme brain fog or normal teen absent-mindedness?  Always hard to tell!).  We talked a bit about how he's been feeling and whether various new things we've tried are helping.  He said he is doing MUCH better than he was a month ago and was better last week than the week before.  He thinks it is mainly due to the beta blockers he started the week before college.  He has noticed better stamina, better sleep, and the ability to do more without crashing.  It produces a positive domino effect, just like when I started beta blockers, because the more you can do, the more your muscles become conditioned and better able to circulate blood to heart and brain, furthering improving your overall condition.  He was, however, developing one of his Lyme-induced light sensitivity migraines, so he was rushing back to campus to take his migraine meds (which are also working well!).

Anyway, movies.  Ken was gone all week, and Jamie was in college, so we didn't watch many movies, but I squeezed in a chick flick for myself!

He's Just Not That Into You was a typical all-star cast romantic comedy, but I enjoyed it.  Good escapism fun.  The cast includes Drew Barrymore, Scarlett Johansson, Jennifer Aniston, Ben Affleck, and Jennifer Connelly, as well as other familiar beautiful faces.  It is about a bunch of young people (late 20's/early 30's?) all struggling to find the right person.  Some are dealing with the dating scene, and some are married or committed (with varying degrees of success).  All are trying to find happiness.  Interspersed among their stories are brief clips of real people (I think?) talking about their own relationship ups and downs.  It was fairly light and fun and quite well done - an enjoyable evening spent on my own.  Jamie saw a bit of it yesterday on TV and said he'd like to see it, too.

Less successful was my attempt to watch an independent film, Starlight and Superfish; its DVD cover was filled with awards from various film festivals.  Its description sounded like it was a thought-provoking comedy, about a man stuck in a sort of purgatory after death who must face various aspects of his life before it is determined whether he will move forward to heaven or hell.  In reality, it was just really weird!  It starts with this accountant guy who can't figure out why he can't leave his apartment or open any cupboards.  Then a British glam rock group shows up (I am not making this up!) to provide guidance to him on his spiritual journey.  The whole thing is very cheaply made, with poor production values, and just completely bizarre and surreal!  I only made it through a half hour before deciding I couldn't take anymore.  Then I immediately sent a message to my old high school and college buddy who used to watch weird movies with me (anyone ever seen Liquid Sky??)  Crazy.

Have you seen any good movies lately?

Update on College Life with CFS

Oh, man...it's been ages since I've posted anything here AGAIN.  Sorry about that.  Even though the kids have been back to school, I have still been overloaded, battling a crash, plus a lot of running around because my younger son, Craig, hurt his knee (again) during the first week of soccer practice - doctor's appointments, MRI's, running medical records all over town, trips back and forth to school, etc.  Plus, my husband has been away for a week so I've had to get up at 6 am every day and do everything on my own.

Anyway, lots of you have been asking how Jamie is doing away at college (thank you for thinking of him!), so I thought I could maybe squeeze in a quick update.  Oops...time to get dinner ready...

OK, now that update...really...

So, Jamie has been in college for two weeks now, and things are going really, really well so far!  He is only taking three classes, and he says that is definitely helping.  He says cognitive functioning has been pretty good - perhaps some of his new supplements are helping (more on that complicated situation in another post).  Three days of the week, he only has one class, at 9 am, so he can rest for the rest of the day.  He has a single room, so he can still go to bed early - I think around 9 pm most nights (definitely NOT the norm for most college students!). 

Cool Gel Mat from Solutions catalog

The heat these first weeks has been a challenge for him because none of the freshman dorms are air-conditioned, and the buildings (and their electric systems) are so out-dated that personal a/c units are not allowed - students can't even have a fridge and microwave both running at the same time!  His dorm room is tiny, with just a small window and little breeze since it opens onto a courtyard.  He said his second week was made more bearable by the Cool Gelmat I ordered for him from Solutions catalog.  And, as of today, the temperature has finally cooled off here!  It's supposed to be highs only in the low 80's this week and lows in the 50's and 60's plus much drier!  That should help him a lot.

The high points?  He says the best things about college are the freedom and being near his friends all the time.  This poor kid has been practically chained to the couch for the past 18 months, mostly housebound and isolated.  Another benefit of going to college here in town (he's 20 minutes away) is that lots and lots of his friends are there, too - kids he's been friends with since preschool in some cases!  Best of all, his two closest friends - best friends since kindergarten - are there with him, each just one dorm building away.  So, he says, he loves being able to hang out with friends every day; even if he's not feeling well, he can spend a little time with friends in between resting, and he eats his meals with his friends every day.

For now, he is coming home at least once a week, on Sundays, so that I can refill his weekly medicine boxes (6 of them completely full!) and give him his B12 shot.  Last weekend, a 3-day holiday weekend here, his grandparents were visiting from out of town and it was incredibly hot and humid, so he slept here four nights in a row and spent a fair amount of time with us, but he still had the energy to drive back and forth to campus on Saturday and Sunday to spend some time with friends, too.  He was badly crashed on Monday and Tuesday (probably too much Frisbee with friends Saturday evening!), but he went back in time for his first class on Tuesday and says he felt better by Thursday morning.  This weekend, he only came home for a few hours today!  Just long enough to eat gluten-free pancakes, do laundry, let me refill his meds and give him his shot, and take a shower in his own private bathroom!

It is great to see him so happy and full of life after this long past year of suffering!!  It really feels like a miracle.  His stamina is still quite low, and we have a long school year ahead.  He says everyone in the dorms is already getting sick, so I sent him back with antibacterial wipes and hand sanitizer today!  Even in his very best years (and we are far from those), he still missed 25-30 days of school, usually in 1-2 week long crashes, so we know that is ahead.  But, he is making a good start and for now, he is happy and enjoying himself and being an almost-normal 18 year old, which is far more than we expected a few months ago!

Jamie (in gray) at home last weekend, enjoying a card game with us and his grandparents.

Movie Tuesday 9/4

Whoa, a whole week slipped by without a post - and Movie Monday is now Movie Tuesday...almost Wednesday.  Sorry for the absence.

Jamie started college last week and Craig started high school, so I finally had the quiet solitude I've been desperately waiting for...and I was sick all week!  I went into a bad crash last Tuesday that lasted all week - no idea why, though some of us locally have been wondering whether it's our rotten weather.  So instead of writing and catching up like I'd planned, I was in bed reading.  It was so bad last week, with continued severe aches in my legs into the weekend, that I was starting to think I had Lyme again (or still).  Then we had houseguests all weekend!

But I was better yesterday and today and have my fingers crossed that it was just your basic unexplained, random CFS crash.  We will see.

Anyway, it's been really busy around here, but we did squeeze in a couple of older movies the past two weeks:

• We watched Poltergeist with the kids before Jamie went off to college.  They loved the classic ghost story - it really held up despite its age.  And though Ken and I both saw it back in the 80's, we enjoyed watching it again...and seeing how young Craig T. Nelson was!  Lots of spooky, heart-pounding suspense.  As Carol Ann famously says in the movie, "They're heeere!"
• This weekend, with my Dad and his wife visiting and Jamie home from school, we watched Men in Black II.  Like the first movie, it was just a fun bit of escapism - silly alien plots, lots of action, and plenty of laughs with Will Smith and Tommy Lee Jones.

Have you seen any good movies lately?

Living a Cautious Life

As anyone who has lived with ME/CFS for any length of time comes to understand, the most effective way to manage this complex, debilitating illness is also the most difficult: live within your limits.  As Bruce Campbell puts it in his well-known (and worthwhile) self-help courses, we need to "live within our energy envelop."

This is easier said than done.  I struggled mightily with this concept during my first years of illness because it goes against my natural tendencies.  I like to be exuberant and spontaneous, openly expressing the joy and excitement I feel in my life.  I was actually quite the wild party girl in my youth, a trait I inherited from my mother for whom "moderation" is a bad word!  So, to not go all out and do everything I wanted to do as soon as I felt well enough in those early years was pure torture for me. 

As a result, my first years with CFS were spent in a rollercoaster existence, swinging from horribly crashed to feeling almost normal again.  At first, before I had a diagnosis or had even heard of CFS, I was certain I was well again each time I went into one of those good periods.  The ups and downs seemed random to me - I didn't see the pattern at first (who would ever guess that exercise would make you sick?) - so I continued to swing back and forth.  The good times were exhilarating, but the crashes were devastating every time and often lasted for weeks or months.

Once I learned about ME/CFS and the exercise intolerance/post-exertional crashes, I slowly - very slowly - learned that I could limit the severity and length of the bad times by reining myself in during the good days.  More recently, I learned that I could use a heart rate monitor to more accurately measure when I was doing too much and was in danger of triggering a crash.  So, now I live a cautious life, being careful to stay within my limits, restricting my activity at all times, and living very cautiously.  And it does work - severe or long-lasting crashes are rare now and most days I am able to function fairly well, as long as I don't do too much (of course, this is not only due to activity restriction but also to piles and piles of medication).  I don't like living so cautiously, but it sure beats spending whole months lying on the couch, too sick to do anything at all.

And now I am watching my son go through this same learning process.  He has had CFS since he was 10 years old, so this is nothing new to him, but until his battle with Lyme and other tick infections began a few years ago, Florinef allowed him to do almost anything he wanted.  Besides, I have been guiding him and helping him to limit his activities all these years.  He turned 18 last week and is headed off to college tomorrow (!), and, as he keeps reminding me, he is now an adult and needs to make his own decisions.

Last weekend during a family vacation, I watched him out in the yard playing soccer with his cousins.  He was having a ball, but I was having a heart attack, watching him from the deck!  Earlier this week, trying to fit in lots of time with his friends before they went off to different colleges, he told me he had planned a hike in a local park one day and tennis with another friend another day.  Tennis!  I tried to keep quiet (no, really, I did...for a minute or so...), but I ended up telling him that was too much, that he had to save up his energy for moving onto campus this weekend and starting classes next week.  We got into an argument over it, with him reminding me again that he is an adult.  I know that, and I know that he will be making all of these decisions for himself starting tomorrow...and probably making a lot of mistakes, too.

I am trying to let go, but I resent that he has to worry about this in the first place.  It's one thing for me, at 47, to be living a cautious life, living within my limits and carefully restricting my activities.  But he is only 18 years old and heading off to college!  My own college years were characterized by reckless abandonment.  Isn't that the essence of youth?  Freedom?  It breaks my heart that he has to live this cautious life, though of course, I am grateful that he is able to go to college at all, even with so many restrictions and cautions.  This illness is just so unfair, especially when it affects children and young people.

Step by step, day by cautious day...