Monday, July 30, 2012

Movie Monday 7/30

Well, my week of quiet solitude is over!  We drove to pick up the kids on Saturday - everyone was totally exhausted from their week of sailing (including my mom and her husband!).  Jamie has been badly crashed since we got home, but hopefully, he'll start to perk up soon.  He still has a few more tests and essays to finish for high school...and college starts in 4 weeks!

Last week ended up being much busier than I expected (our week alone always is!), but we did watch a couple of movies:
  • Ken and I watched Water for Elephants, which we've both wanted to see for a long time!  We both read - and loved - the novel and really enjoyed the movie adaptation.  Often the film version of a beloved novel doesn't measure up, but we thought this was very well-done, entertaining, and even stuck fairly closely to the book.  The two main actors, Reese Witherspoon and Robert Pattison, were excellent in their roles, and the supporting cast was, too.  Just one warning: there is a fair amount of violence in the story - against both people and animals - that is sometimes very hard to watch.  It's a great movie with a good ending, though.
  • While Ken was out golfing Friday evening, I indulged myself in a girly movie, The Jane Austen Book Club.  I've never read a single Austen novel (I know, I's on my list...), so I wondered whether I'd be lost, but the movie is mostly about the people reading the books not the books themselves.  I can see how a knowledge of Austen would make the movie even more fun to watch, though!  So, it is about friendship and love and life, filled with the ups and downs of life, everything from divorce to infidelity to new love.  I thought it had a great ensemble cast, and I enjoyed it - nothing outstanding but just good entertainment.
  • As for TV, we have begun to watch the X-Files with the boys, from the very first episode of the first season.  Ken and I watched the entire show many years ago, but it is fun to share it with the boys now - they love it already!
Have you seen any good movies or TV lately?

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

Friday, July 27, 2012

New Diet Countdown!

Our new gluten-free, dairy-free diet begins with dinner tomorrow, when our kids will return home from a week with their grandparents.  I am worried about how this will go for my 17-year old son, Jamie, but am hopeful that perhaps it will make a difference for him.  I really appreciate all the fabulous tips and advice you've been leaving for me on my last post on this topic - it's all been so helpful in my crash course to learn what I need to quickly!  I still have a few questions, though, plus a bit more information to share.

I should have mentioned in my first post that this whole thing would be no big deal if it were just me.  I recognized my own dairy intolerance many years ago and adjusted fairly easily.  I wouldn't even be bothering with substitute products if it were just me - I'd just eliminate foods with gluten.  However, Jamie is a typical teen boy, whose tastes aren't as broad as mine and whose favorite foods all feature gluten or dairy or both!  He loves pancakes (especially pancakes), bagels and toast, pizza, ice cream, peanut butter sandwiches, and cereal with milk.

He eats whatever vegetables we have for dinner but only because he knows they are good for him, not because he enjoys them.  He does love all kinds of fruit, mashed potatoes, and a good steak, but otherwise, his favorites are almost all now on the no-no list.  So, that makes this all especially challenging, and I know that the only way he will stick to it for very long is if I can find or bake some reasonable substitutes for at least some of his fave foods, at least until he gets used to this more.

My husband and I went shopping yesterday, stopping at Trader Joe's and the new Whole Foods store located about a half hour from here.  We filled our cart with gluten-free items, including cookies, bread, bagels, English muffins, and other things our son is going to crave.  I know from all of your wonderful advice that some of these products might not be great, but it's a starting point.

To make matters worse, I have learned that oats are also off our list.  I was hearing contradictory information on oats - some sources said they were gluten-free but prone to cross-contamination so had to be avoided (unless labelled "gluten-free"); other sources said they were to be avoided completely.  I checked with our dietician who cleared it up for me.  She explained that although oats do not contain gluten, they do have a protein called gliadin which is a very similar molecule to gluten and that someone with such severe metabolic problems as Jamie needs to avoid oats as well.  That's bad news because Jamie and I both love our oatmeal!

She also added as an after-thought, "best to avoid corn and soy, too."  What??  You've got to be kidding.  What's left?  I was already counting on subbing soy milk for milk and corn tortillas and chips for flour tortillas and other salty snacks.  Then, today, I received her full set of dietary recommendations, which also limits certain fruits and veggies and recommends avoiding peanuts at first.  If I take the poor boy's peanut butter away, there'll be nothing left for him that he likes to eat!  She agreed that this can be done in steps and that eliminating gluten, casein, and oats are the most critical first step, so that is what we'll be focusing on.

I also bought lots of different baking products to try last night, though I don't always have the energy to bake homemade stuff.  I got pancake mixes and brownie mixes (two top priorities!) to try, plus several different types of flour substitutes and gluten-free flour blends.

One area I would love some advice on is ideas for breakfasts and lunches.  With no gluten, oats, or dairy, what on earth do people eat for breakfast?  I was really counting on keeping our oats!  I also have low blood sugar and wake up starving in the morning - I need protein and whole grains and lots of fiber to fill me up enough, otherwise I am hungry again an hour later!  My usual breakfast is whole oats (or a multi-grain hot cereal blend from Trader Joe's - no, no, no!) with fresh fruit on top, chopped walnuts, and soy milk.  Jamie usually has either cereal or oatmeal, often with fruit (and, of course, milk).  Eggs are an obvious choice, but without a slice of whole grain toast, I'll be hungry again soon after.  Any breakfast ideas out there?

Lunch is easy for me - I normally have leftovers or eggs - but Jamie's lunchtime favorites are peanut butter and banana sandwiches, whole grain bagel with peanut butter, pizza, and (the only remaining option!) one brand of split pea soup that he likes.  I've heard that most of the GF breads aren't all that good on their own or for sandwiches.  Lunch ideas for a teen boy??

Dinner will be easy - our dinners rarely include gluten now, and I eliminated dairy from most of our dinners when I stopped eating it.  The one exception is pasta, which we probably only eat once or twice a month, and we bought several GF pastas to try.  But I would appreciate hearing what others on a gluten-free/dairy-free diet eat for breakfast and lunch.  Thanks again for all the help - I couldn't do this without you!

Wednesday, July 25, 2012

Getting Ready to Go Gluten-Free

So, after 10 years of living with ME/CFS in our household (10 for me, and 8 for each of our sons), we are embarking on a new CFS adventure:  Jamie and I are going to try going gluten-free and dairy-free (as I am already) on the advice of a new specialist we are consulting.  The kids are away sailing with their grandparents this week, so I am attempting to prepare for this gastronomic adventure, by learning what I can about gluten and restocking the fridge and cupboards.

Here's a little background in case you are wondering why we are doing this now....

I discovered I'd developed an intolerance to dairy pretty early in my illness - maybe around the second year, just after getting diagnosed.  I think maybe Dr. Bell had mentioned to me when I told him about my GI problems that some people with CFS develop food allergies and intolerances.  I tried two weeks without dairy and didn't really notice much difference, but when I added dairy products back into my diet, I had a severe reaction and could plainly see the cause and effect.  So, I have been mostly dairy-free for about 8 years or so.  I have long suspected that my problem was more than just lactose intolerance.  I can cheat once in a while, with a small scoop of ice cream or a bit of cheese, and Lact-Aid helps somewhat, but if I have dairy two meals in a row - or even two days in a row - then things get really bad again, in spite of the Lact-Aid.

So, fast-forward to now.  If you read this blog regularly, you know that Jamie, 17, has had a really horrible year.  On top of his CFS, he also has Lyme disease, bartonella, and babesia (3 tick infections that we suspect he has had for 5 years), and he reacted very badly to his treatment for these infections.  It's normal to experience a period of worsening (a herx reaction) when treating a long-term infection, but Jamie was totally incapacitated for about a year.

One of the avenues we have been investigating, with his Lyme doctor, has been the methylation process in his body.  Our doctor said that his severe response to treatment showed that his body was having trouble clearing out toxins (i.e. both the meds as well as dead bacteria and other bugs), so I did some research on my own and started Jamie on a modified methylation protocol, designed to help people with CFS to clear this blocked process.  I think that might have helped a bit, and Imunovir has helped him more, so he is managing better these days but still not well enough to handle full-time school...and college starts next month.

So, our Lyme doctor told us about a specialist who'd helped some of his other patients.  She's a biochemist and a registered dietician, and she works with people with a variety of chronic illnesses.  Her approach is to take a detailed history of the patient and the illness, including diet; run a bunch of tests to see what nutrients are not being absorbed properly, what nutrients are low, etc.; and then suggest a diet and supplements based on that individual's own needs.

We decided to give her a try, so my husband and I met her by Skype a couple of weeks ago and told her Jamie's long and complicated history of his illnesses.  I tracked Jamie's diet for a few days and faxed that to her, and we had a second Skype meeting.  To be honest, I expected her to compliment me on our healthy diet.  After all, we eat lots of fresh fruits and veggies, lean meats and fish, skim milk for Ken and the kids, and mostly whole grains.  Instead, she was appalled!  Jamie was with me on Skype and heard her ask, "Why is he eating wheat and dairy products at every meal?"

She told us that even without running the tests on him yet, she knew she would be recommending a gluten-free and dairy-free diet.  Jamie was stunned and fairly upset by this pronouncement.  She explained that, for someone with CFS or similar illnesses, it didn't even matter whether they were actually intolerant to gluten or dairy because gluten and casein (a milk protein) both block one of the primary methylation pathways in the body.  So, for someone who is already struggling with blocked methylation processes, gluten and casein just make things worse.

So, we will be trying a gluten-free and dairy-free diet.  I figured I might as well try it along with Jamie, both for moral support and because maybe it will help me, too.

But I am in need of help!  I have less than a week left to figure out how to do this.  If you have any advice or tips for me, I would appreciate it...maybe your favorite gluten-free products, how to make a good flour substitute (that will be a priority for me), where on the web to find information on going gluten-free, or your favorite gluten-free recipes.

Monday, July 23, 2012

Movie Monday 7/23

Ahhhhh...what's that sound?  It's silence.  Our sons are off for a week on their grandparents' sailboat, along with their cousin, and Ken and I are enjoying a little down time.  I had a very quiet, solitary day which was just lovely!  Life is pretty easy with just the two of us.  And tonight we're going out to dinner to one of my favorite restaurants to celebrate my birthday.

I was planning to take advantage of this quiet week to actually go OUT to a movie theater, but there is nothing playing right now that I want to see!  It's all kids' stuff or superhero stuff (i.e. that the boys want to see) or just plain stupid stuff.  So, we will probably rely on DVDs for entertainment this week, as usual.

Last week was very busy, but we did have plenty of time for a movie after we got home from dropping off the kids this weekend:
  • We watched Tinker, Tailor, Soldier, Spy, based on a John Le Carre novel, last night.  Ken thinks he might have read the book years ago (but didn't remember it). It was a good movie but  very complicated and sometimes hard to follow.  It was actually perfect for watching alone in the family room together instead of in a theater because we could pause the movie and discuss it: "So, is that guy...?" and "Do you think this means that...?"  It's your basic Cold War spy movie, but it does have a sort of slow, meandering feel to it.  It's a good story, though, and the plot kept us guessing.
  • Ken and I have been watching episodes of The Good Wife on DVD (from season 1) and are enjoying it.  And Jamie and I discovered a new show last week before he left: Perception starring Eric McCormack (past star of Will & Grace).  He plays a brilliant neuroscientist professor with expertise in neuroforensics who struggles with schizophrenia.  We only watched the first episode, but it looks very good so far.  Oh, and with the kids gone today, I enjoyed catching up with Smash while I ate lunch!
Have you seen any good movies or TV shows this week?

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

Monday, July 16, 2012

Movie Monday 7/16

Wow, what a week!  It has been insanely busy here, mostly with nonstop medical appointments for my kids.  We're trying to fit everything in while school is out, plus meet deadlines for college and high school.  I spent all weekend filling out online health forms for my oldest son (one for college and one for his new primary care doctor).  This is not a simple process for us!

We did have time to relax and enjoy some movies this weekend and are exploring some new TV shows, too:
  • Ken and I watched The Lucky Ones Friday night, and I highly recommend it.  It's the story of three soldiers coming home to the US from the Middle East - one is an older man who is finished with his tour of duty (played by Tim Robbins), and the other two are younger soldiers who have each been wounded and are coming home for a 30-day leave (played by Rachel McAdams and Michael Pena).  They arrive safely in NY but then their flights home are cancelled and they decide to rent a car and drive cross-country together.  They run into all sorts of unforeseen problems on the road, while each of them is struggling with his or her own emotional turmoil from what they've been through in the war.  I know that probably sounds a bit depressing, but it's not at all.  The movie is so well-made, well-written, and well-acted that you come to care for all three of the main characters, and despite its serious subject matter, there are plenty of good laughs to keep things from getting too dark.  Ultimately, it is a story about friendship and healing.  Ken and I both enjoyed it very much.
  • Last night, we watched The Matrix with the boys.  Ken and I had seen it many years ago, but I'd forgotten much of it (and I don't think I understood much of it the first time anyway!).  The boys weren't too excited to watch an "old" movie, but they enjoyed it as I knew they would.  If you've somehow missed this sci fi classic all these years, it's about life on earth in a bleak future and has to do with virtual reality.  To say anymore would give away too many of the movie's surprises.  We all enjoyed it...and I understood it better this time!
  • We are continuing our search for some good TV series we can all enjoy together.  We are still watching Alphas, Warehouse 13, and White Collar.  I brought some DVDs home from the library.  We tried a few episodes of Barney Miller (a classic Ken and I both loved), but the boys were not impressed!  We had more success with Castle, a current murder mystery series about a mystery writer working with a police officer to gather information for his books (and help to solve crimes).  We all like its suspense and sense of humor, and I loved when the real Michael Connelly guest-starred as himself!  And Ken and I have started on season 1 of The Good Wife, which I've been wanting to try ever since it started with such overwhelmingly good reviews.  It's very good so far - I've requested disk 2 from the library!
Have you seen any good movies or TV shows lately?

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

Friday, July 13, 2012

Helping Family Understand ME/CFS

A friend e-mailed me earlier this week about how she was both looking forward to and dreading a vacation with extended family.  She said her family just didn’t understand how disabled she was by CFS.  This got me thinking about my own early difficulties with my family, so I thought I’d share some of those experiences as well as some insights that I’ve gained after 10 years of illness.  I know now that many of those early problems were based in good intentions and misunderstandings.

Like my friend and most people with ME/CFS, I felt as though my family didn’t understand what I was going through in those early years.  In fact, throughout those early years – the first undiagnosed one and the ones that followed it – I mostly felt utterly abandoned by my extended family.  Not only did they not understand how disabled I was, but it also seemed like they were intent on ignoring my illness all together!  I was stunned – and hurt – when we got together with my family, and everyone acted like everything was just fine.  Couldn’t they see how sick I was and how dramatically my life had changed?  Did they not believe me?  And when we weren’t together (none of my family lives nearby), it seemed that they had completely forgotten about me – no phone calls, no letter or cards, not even an e-mail to ask how I was doing.  I was deeply, deeply hurt.

I hit bottom, both emotionally and physically, during a family vacation in the Adirondacks.  My husband, Ken, and I knew it was going to be too much for me, but we let ourselves get talked into it. The trip turned out even worse than we’d anticipated.  The exertion and stress sent me into the worst crash I’d ever experienced (before or since), I had to spend most of my week closed up in my bedroom, and my family seemed (to me) to just ignore my suffering and pretend everything was OK.

That was the final straw for me.  I couldn’t believe that my family could be so cold and uncaring.  We’d always had a close, loving family, and I was stunned that they weren’t there for me when I needed them most.  How could they just abandon me like that?

Later, in hindsight and after much thought, I realized that I misinterpreted their actions.  It wasn’t that they had stopped loving me; in fact, it was just the opposite.  The all loved me so much that they just could not accept that I could possibly be that sick.  They were all in deep denial about my illness, trying to convince themselves that my illness was not serious and that nothing had changed.  In addition, they misinterpreted the way I acted when severely ill as depression and believed that what was best for me was to help me “get my mind off” my illness by not focusing on it.  Once I understood this, I could begin to forgive them, though it was a slow, gradual process.

Today, things are much better between me and my family.  Most of them now do understand that I have CFS, that it is a serious illness, and that it is not going away.  Though some of them still feel a bit uncomfortable with the fact that I am chronically ill, they do their best to be kind and supportive to me.  For my part, I try to be honest about my illness and its effects without focusing too much on it.  They now understand I need to nap every day, they can tell when I’m not feeling well, and they will even ask how I am doing occasionally.

So, how did we get to this new and improved state?  Well, again, it was a very slow, gradual process.  I think what helped the most was finally turning my mother around because she has a lot of influence with the rest of the family.  Because I didn’t seem to be getting through to her by talking, I wrote her a six-page letter.  In it, I explained what my life with CFS is like, how I perceived the way my family treated me, and how their actions really affected me.  I tried to emphasize that I understood they thought they were acting in my best interests.  I said that I thought they believed these things:
·      “the best thing for me is to keep my mind off my illness
·      I am consumed with thoughts of illness and focus too much on it
·      talking to me about my illness, how I’m feeling, etc. will only make me focus on it more
·      I am depressed a lot because of my illness”

And then, I explained:

“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through.  I feel as though everyone is pretending that everything is just fine.  What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick.  The worse I feel, the more I feel ignored and invisible.

I want to emphasize that I’m not looking for pity or coddling.  I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness.  All I want – and need – is simple honesty and acknowledgement.”

I also explained why it was so difficult for me to spend time with other people:  “Stress and exertion come in all sorts of forms: physical, emotional, mental, social.  Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can.  Any kind of social interaction is exhausting for me.  When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally.  But it’s not personal at all.  I respond the same way to social interaction with friends.”

I realized that my mother thought I was depressed and that she had to cheer me up.  I think this may be true for many of our family members.  They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.  

Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.

To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it).  My mother actually sought out a therapist who specialized in helping families of chronically ill people.  I think she finally read some of the information I’d been sending over the years about CFS.  And she changed her attitude and the way she treated me dramatically.  Eventually, that led to changes in the way the rest of the family treated me also.

I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction.  I have also tried to share information with family (and friends) about what CFS is and what its symptoms are.  As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end.  I feel as if I lost my family for a while there, but I have them back now.

What have your experiences been with your family?


Monday, July 09, 2012

Movie Monday 7/9

Whew, when can I go back on vacation?  It's been so hectic and busy since we came back.  I miss those vacation days with no stress, no responsibilities, no obligations...ahhh.  I spent this morning running all over town, and the rest of this week (and next) look to be more of the same, trying to squeeze in all the kids' doctor appointments, dental appointments, haircuts, plus errands, etc.  What happened to the lazy days of summer?

Well, at least our evenings are quiet and laid-back - that's a nice change from the way things are during the school year, and we all enjoy it.  So, we did watch a couple of movies this week and discovered some new TV shows (new to us):
  • When Ken spent an evening golfing this week, the kids and I hibernated with a good suspense movie, The Interpreter.  It's an older movie that I'd seen before, but I thought they'd enjoy it (and I didn't remember what happened anyway - brain fog is helpful that way!).  Nicole Kidman plays a UN interpreter who overhears of a plot to assassinate a visiting president from the war-torn African country she is from.  The Secret Service (including Sean Penn as one of the agents) is sent in to investigate the claim and provide protection.  The investigation turns against the interpreter, though, when it is discovered that she used to be a rebel before she moved to the U.S.  It's an intelligent political thriller, filled with twists and turns and plenty of action and suspense.  We all enjoyed it (again).
  • Friday night, Craig (13) announced that he was picking the movie for a change and chose Night at the Museum 2: Battle of the Smithsonian.  He has seen it before (several times!) but he likes to re-watch favorite movies, and the rest of us hadn't seen it.  It's a fun family film, filled with action and comedy, both clever and slapstick.  Amy Adams was a great addition as Amelia Earhart, and it's great fun to see the Lincoln Memorial statue come to life.
  • We have been searching for a new TV show that we can all enjoy together (a rather tall order!).  Our two past favorites are The Mentalist and Bones, but we've caught up with Bones and are waiting for the latest season on DVD of The Mentalist.  Complicating matters is the fact that Jamie spent much of this past year home sick, so he's watched just about everything worth watching On Demand.  But he discovered a new gem this week - the sci-fi show Alphas.  It's about a group of people with special abilities - sort of an X-Men type thing, only dialed down a bit  - who are searching for others like themselves, called Alphas.  And of course, there is a group of bad Alpha-type people out there, too, who want to use their special talents for evil and not good.  So, there is action and suspense and, most important of all for us, a great sense of humor.  The best character on the show is Gary, a savant with autism, played by one of our favorite actors from Bones (Ryan Cartwright who played Vincent Nigel-Murray) - he plays the role perfectly and with great humor.
  • And I asked my friend Baffled from the blog Infinite Daze for some TV recommendations because I knew she enjoyed sci-fi shows.  She came up with a long list for us to explore this summer.  One that we tried last night was Warehouse 13, a show about a secret group of government agents searching out lost antiquities, with some steampunk elements.  We watched the first show of season 3 (unfortunately, previous seasons are not available On Demand or through our library) last night and enjoyed it very much - it's another show with a good sense of humor.
Have you seen any good movies lately?  Do you have any good TV series to recommend to us?

Sunday, July 08, 2012

Upcoming Webinar on Post-Exertional Malaise

The CFIDS Association is sponsoring a webinar on exercise intolerance aka post-exertional malaise (PEM), the key defining characteristic of ME/CFS.

To sign up for the July 19 Webinar or learn more, use this link.

To read more about PEM, check out Jennie Spotila's excellent series of articles and other resources on PEM.

Friday, July 06, 2012

Vacationing with ME/CFS

Ken, Jamie and Craig on the Milennium Force

There were more roller coasters on our recent vacation than just the ones at Cedar Point (amusement park).  As you all know, you can't just leave your CFS at home when you go away.  It accompanied us on our 3-week trip, like a 5th member of our family.

Jamie, our 17-year old son, and I both managed pretty well, considering how difficult ME/CFS can make things and how bad this past year has been for Jamie.  We both were very active and enjoyed hikes, swims, rock climbing, and yes, even roller coasters!  But we both had plenty of low points, too, including a day for each of us when we hit rock-bottom.
On Top of Mt. Baldy, Indiana Dunes National Lakeshore

Let's start with the highlights - they're so much more fun!  We were away from home for three weeks and drove over 3000 miles, camping in our pop-up trailer along the way.  We swam in ice cold Lake Michigan and climbed a giant sand dune at Indiana Dunes National Lakeshore.  We climbed 223 stone steps to the top of Mill Bluff in Wisconsin.  We went to all of our favorite places in Custer State Park in South Dakota, including scrambling up the rocks at Sylvan Lake and the Needles.  We hiked our favorite hike at Badlands National Park, the 1.5 mile Notch Trail, including climbing a rickety ladder up the rock formations.  Retracing our steps from 10 years ago, we hiked the Balanced Rock Trail at Devil's Lake State Park in Wisconsin, climbing to the top of a boulder-strewn bluff.  And, perhaps most amazing of all, we spent a day at an amusement park in 95 degree heat, riding rides until 4 pm (without a nap for me!).

On Top of the Rocks at Sylvan Lake, Custer State Park, SD
So, yes, it was a wonderful trip, and we did some great things - things that, for Jamie and I, are nothing short of miraculous!  I wore my heart rate monitor whenever we were active and was careful to stay below my anaerobic threshold - which meant stopping every 5 minutes along the Balanced Rock trail and sitting down to wait for my heart rate to drop low enough for another 5 minutes of climbing!  My family was very considerate of my limits, and I clocked my longest hike at an hour and 22 minutes - again, miraculous.  It was the heart rate monitor and beta blockers that allowed me to do all of those active things and mostly keep up with my family.  And my heart swelled with emotion when I was sitting at the top of a huge rock formation in the Needles with my sons, and they told me how glad they were that I was there with them and how surprised they were that I could do it.  Absolute nirvana for this mom.

Jamie, who has not yet consented to wearing a heart rate monitor, experienced lots of push-and-crash cycles on the trip.  He'd do whatever he wanted on the active days, hike as much as he could, just let loose and enjoy the freedom; then he'd spend the next day or two in the car or lying on his bed in the camper, reading (which he loves to do) and waiting for the resulting crash to pass.  So, he had probably about an equal number of good and bad days, but his crashes never lasted for more than a couple of days and then he'd be back on his feet.
On Top of The Needles, Custer State Park, SD

He hit bottom, though, one day when his light sensitivity (a symptom of his Lyme disease) was especially bad, and it set off a severe headache (the fact that he'd gone hiking twice the day before may have had an impact, too!).  He gets these headaches sometimes; they are debilitating, and nothing gets rid of them but rest, quiet, and dark.  But this one kept getting worse, until he mentioned he also felt nauseous.  He took some ibuprofen for the headache, and, while we were out picking up our aunt for a visit, he vomited it back up.  For the first time, we realized that these really severe headaches that hit him are probably migraines.  He spent the rest of the evening wrapped in his blanket on the sofa in the camper, eyes closed, not reading, and absolutely miserable - he missed dinner, his aunt's visit, and the campfire.  Fortunately, he felt fine the next day.

The Notch Trail, Badlands National Park
For me, the low point was a bit more mundane but classic CFS crash.  One day in the Black Hills (South Dakota), after a morning spent hiking, I felt not only physically crashed but emotionally wrung out.  I hadn't been feeling all that good to begin with, but I had pushed myself to join my family at our favorite place, Sylvan Lake.  I woke up from my daily afternoon nap no better but still pushed myself - to help with the laundry, to make dinner (I know, even after 10 years, I haven't learned this lesson!).  By dinnertime, I was not only exhausted and achy but also feeling horribly blue, with my emotions turning me inward, wallowing in my own self-pity and obsessing over certain unshakable thoughts (the familiar but unstoppable downward spiral).  During our campfire that night, I lost it.  I just started bawling, telling my family how sorry I was that my illness limits their vacation and ruins their fun, how difficult it is living with CFS (as if they don't know!), how even when I try to keep up, CFS is still with me every moment of every day.  I had a good cry, and they comforted me.  Then I had a good night's sleep, took it easy the next day, and was fine again.

Of course, my thoughts that day, though overwrought and overwhelming, were essentially correct.  I can't escape from ME/CFS for even 10 minutes.  I know I am blessed that certain treatments have helped to improve my quality of life and allow me to do more, and, believe me, I am grateful for that.  But, even with those improvements, it is still a struggle every single hour of every single day to live with this illness...even in the midst of a wonderful family vacation.  All we can do is take it one day at a time (one hour at a time), cherish the good times, and wait patiently through the bad days.

A Great View of Devil's Lake from the Balanced Rock Trail, WI

Monday, July 02, 2012

Movie Monday 7/2

Don't worry - I haven't been badly crashed nor have we entered the witness protection program!  I have been silent for over 3 weeks because we were off on our annual vacation, traveling cross-country with our camper.  This year, we headed to one of our all-time favorite places, the Black Hills region of South Dakota, and made lots of fun stops along the way.  If you are interested, you can check out photos at our trip blog

Overall, we had a great time.  Jamie and I both did fairly well, with only a few rough days for each of us.  We both managed lots of active fun, hiking and climbing on the cool rock formations, and even a long day at an amusement park on the way home!  I will tell you more about the ups and downs of traveling with CFS once I get caught up - I still have over 950 unread e-mails to get through!!

For now, I thought I'd jump back into the blogging world with a quick Movie Monday post.  We got home late Friday night, and relaxed and recovered this weekend with some DVDs:
  • When Craig went to the movies with his friends and Jamie went to bed early, Ken and I decided we only had energy for something light, so we watched No Strings Attached, starring Ashton Kutcher and Natalie Portman.  It was a very light - fluffy even! - romantic comedy, somewhat predictable but still fun.  Portman plays a commitment-phobic, very busy doctor-in-training who has neither the time nor inclination for a serious relationship.  She proposes an irresistible deal to Kutcher's character: get together for sex and have fun, with no strings attached.  Of course, Kutcher eventually falls in love with her and breaks all the rules she established, and...well, I think you can guess what happens next.  There's not a lot of emotional depth to this movie (it bothered me that Portman's emotional problems didn't seem to have any cause), but it's good for a couple of hours of light escapism...which was just what we wanted!
  • After visiting South Dakota, we realized the kids had never seen Dances with Wolves (which was filmed in Custer State Park, one of our favorite places), so I ran to the library as soon as we got home to borrow it.  We all watched it last night.  The kids loved it (and I had forgotten most of it!).  In case you never saw it when it was released in 1990 (and won 7 Academy Awards, including Best Picture), it is the story of a Civil War hero who, at his own request, is relocated to the army's most remote post, a deserted and primitive outpost in South Dakota.  There, he encounters a local Sioux tribe and is gradually accepted and welcomed by them.  It's a fabulous, epic movie with amazing scenery - we especially enjoyed the scenes with the huge herd of bison that we recently saw ourselves at Custer.  Highly recommended.
 Have you seen any good movies lately?

Close Encounters with Custer State Park's Bison Herd