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


  1. you said it best Sue, its the every minute every day - its like our constant shadow that doesn't need the sun - but i am so impressed with all you accomplished - and next year give me a heads up and your family is welcome to enjoy a few days at our lake house in Waupaca, WI -

  2. I enjoyed hearing about your trip, but was sorry to hear about Jamie's migraine and the write it so well, Sue. A 5th member of the family that is not fun to be around and causes havoc. Ugh. It is wonderful all that you guys can do though...Yahoo!!!! Lots of good memories.

  3. Thanks, Heather!

    I forgot to mention that - the other highlight of our trip was meeting up with two other families dealing with CFS, one mom and son in Chicago whom we met at CFSAC last year, and another mom in South Dakota who is part of our Parents Facebook group. We loved meeting up with these friends!!


  4. Sue, you said what I was just getting ready to post! How we can never escape this monster living in us. I've been struggling terribly lately.... and when you mentioned the emotional part, I wanted to cry. (never do as it just takes too much out of me)....

    Thanks so much!

  5. Rob Hynes12:41 PM

    Is it ME/CFS or Lyme? Confused.

  6. HI, Rob -

    I can see how you'd be confused if you weren't a regular reader - it's a complicated mess is the short answer!

    Both of my sons and I have ME/CFS - I've had it for 10 years and they've each had it for 8 years. One my sons' (Craig, the younger one) CFS is quite mild and is thankfully well-controlled with Florinef (OI treatment). The other's has always been worse but we noticed he kept getting worse over recent years. About a year ago, he was diagnosed with Lyme plus two other tick infections, bartonella and babesia, which we suspect he has probably had for about 5 years, since the last time he was diagnosed and treated for Lyme (but not tested for co-infections). So, he is now undergoing treatment for those 3 infections, but it is a long and difficult process when they've been around for so long.

    So, short answer is we all three have CFS (to varying degrees of severity), but Jamie also have the 3 tick-born infections.

    If you are interested in more info on ME/CFS and Lyme and how to tell the difference, I have written about it fairly extensively - just click on "Lyme disease" under the categories/labels in the left sidebar.


  7. Dear Doubting Thomas -

    By mistake, I just deleted your two comments (just hit the wrong button), and I wish I hadn't because I'd like to address them.

    Basically, you left 2 anonymous messages saying you didn't believe we had ME/CFS because of all we'd done on vacation.

    Well, this is what moderate ME/CFS looks like. Not everyone is bed-ridden or housebound by it. Some people are even higher functioning than I am and are still able to work - that's still ME/CFS, too. There is a broad scale of severity in this illness, and that's one of the challenges in properly diagnosing it.

    I think I clearly explained our limitations and crashes here. Vacation is definitely easier than everyday life - there are no responsibilities, no stress, no worries - so we can do a bit more than during a typical time at home. But if we were well, we'd be doing a lot more. We are NEVER able to tackle a hike longer than 1.5 miles now, and before CFS, we loved going on long hikes and even backpacking for days, hiking 8-10 miles a day! I still have to nap EVERY day, no matter how well I am doing, and I am pretty much useless in the afternoons and evenings. If we were well, we would be doing a lot more - maybe taking a hike in the morning and then doing something else active in the afternoon (instead of resting at our camper).

    I firmly believe that we can still live our lives in the face of this devastating illness. I have worked very, very hard to find effective treatments for myself and my sons. I have read every bit of research that has come out in the past 10 years and tried anything that shows any promise at all. As a result, I have been able to improve my quality of life - if you click on the links in this post, you can read about which treatments have worked the best for me. We each take a big pile of pills every day.

    Besides small improvements through treatments, we have always strived to maintain positive attitudes, finding joy every day, even in our very restricted lives.

    I hope that you can find this same sort of improvement - and also peace - in the face of this debilitating illness.