Saturday, August 20, 2016

Camping & Enjoying the Outdoors with ME/CFS

Beautiful Sylvan Lake in Custer State Park, SD
Sorry I have been absent from the blog - we just returned from a short vacation to one of our favorite places, the Black Hills region of South Dakota. It is absolutely beautiful there! Plus, we have lots of family in the area, so it was good to see everyone. It was exhausting for me, as you'd expect, and my son had one really bad day while there. However, we do love to travel and managed the trip well overall. This one was tough for us because it involved two very long days of air travel (12 full hours on the way out!) and a sort-of hotel stay (in a cabin but like a hotel room). We both manage better on road trips, when we can bring our camper with us.

Being outdoors is so important to me! I've written here before about the joy I get from the outdoors, how it conveys a sense of peace and tranquility. When I mention a camping trip, I often hear from other people with chronic illness, "You're so lucky!" But it's really not luck that allows me to still enjoy the outdoors: it's a combination of relentlessly trying new treatments for small improvements and of changing the way that we camp, travel, and get outdoors. I've been meaning to share some of our tips for camping and spending time outdoors, so this seems like a good time - these tips apply well to regular travel, too.

First, Improve Your Condition As Much As Possible
Before getting into specific travel tips, I have to mention treatments for ME/CFS. Too many people are told (by doctors!) that there are no treatments for ME/CFS and they just have to live with it, but that's just not true. There are many effective ways to treat ME/CFS, and I summarized those that have worked well for my son and I in that link. There are no outright cures (yet), but by trying different treatments, you can greatly improve your quality of life and ability to function, little by little. For instance, since starting beta blockers for Orthostatic Intolerance (an integral part of ME/CFS), I can now take walks (up to an hour!) without crashing afterward, which allows me to enjoy a bit of careful hiking.
Our Pop-Up Camper - Home Away From Home
Bring Your Home With You
If at all possible, find, borrow, rent, or buy some sort of camper for your outdoor adventures. In this way, you take your home with you (at least a mini version of your home). I do so much better staying in our own little camper than in a hotel! And I could never manage sleeping on the ground in a tent anymore. We just have a pop-up camper that is easy to tow, and we have taken it all across the U.S. I sleep just as well in the camper as I do at home (with my treatments for correcting sleep dysfunction that I take every night), we cook many of our meals ourselves so it is easy to stick to my diet (and far less expensive!), and it feels like our own little home-away-from-home. We also bring folding lounge chairs for my older son and I so that we can lie down and have our feet up. Folding bungee chairs work really well, too.

Stick To Your Routines As Much As Possible
I learned early on that I must stick to my daily routines if I want to function as well as possible. Yes, sometimes it stinks having to live life like a toddler, but staying within my limits helps so much! For me, those routines include getting to sleep by 10:30 pm every night, sleeping at least 9-10 hours at night, and taking a nap after lunch every day. My nap is sacred, and I never skip it! Without it, I would be useless by 4pm. In the car or on a plane, I bring pillow, light blanket, ear plugs, eyemask, and Valerian (a mild herbal sedative similar to chamomile that wears off quickly). In the car, I just lean my seat back or lie in the backseat at naptime. It's tougher on a plane (much tougher!), but I do my best, with a couple of small travel pillows and all the rest of the accessories I mentioned. LOTS of water, salt, and healthy snacks are also essential on a travel day. Camping or vacations with extended family are very tough for me, but I still stick to my own routines because I know I will crash otherwise.

With beta blockers, I can enjoy a slow paddle in the kayak.
Focus Your Energy On Fun
I find that I naturally feel better when we are camping, simply because I am away from my normal responsibilities and obligations - no internet, no computer, no to-do lists, no laundry or other household chores. With all of those daily must-dos removed from the equation, I find that I have more energy to devote to enjoying the outdoors, with a short hike or kayaking (I discovered that kayaking doesn't raise my heart rate much!). I wear a heart rate monitor during these times, to allow me to be active while staying within my limits. This does mean that I often have to stop and sit on a rock or crouch down to wait for my heart rate to slow down on a hike, but I am OK with that (and my family is very patient!).

Because of my limits and need for an afternoon nap, our typical routine when camping or vacationing is an easy activity in the morning, right after breakfast, and then back to the camper (or as in this week, cabin) for lunch and my nap. My older son usually rests when I do, and my husband and younger son can take another hike or do something else (though my husband has been known to enjoy a nap, too!).

Sometimes when we are just camping locally and feeling rundown, there are no active periods - we just rest, take it easy, and enjoy the outdoors surrounding us (and our books, too!).

Our son on a "down day," enjoying his book while resting on a camping trip.
Change Your Expectations
Especially if you are new to a life of chronic illness, you may need to adjust your expectations of what camping or vacationing means. Some people go on trips and cram everything they can into every moment, so as not to miss anything. We know we just can't do that. So, we choose the things we most want to do and schedule them for our best times (mornings for me).

Another adjustment that is needed is to stay flexible and change your plans based on how you feel. Monday this week, our son woke up feeling awful, with his Lyme symptoms badly flared up. I was OK but somewhat worn out from the long air travel day. So, over breakfast, we postponed our plans to go to our favorite hiking spots and instead planned a less active day. We drove our rental car through Custer State Park (an amazing place that rivals the National Parks!) along its Wildlife Loop, with a stop for lunch at one of our favorite lodges. So, instead of hiking that day, we drove through the park spotting herds of bison, wild burros, pronghorn antelope, deer, and prairie dogs - still a very enjoyable day but much more low-key. And the next day, we both felt better and were able to manage visiting our favorite hiking spots.

Relaxing by the campfire with my feet up (and a book!)
Relax and Enjoy
We enjoy our downtime, too. That's a big part of enjoying camping and travel with chronic illness - embracing the slower pace and learning to enjoy it. We always slow down for the afternoon while I nap, but that is just a normal part of our routine now. My older son, husband, and I all love to read, so downtime while camping or vacationing for us means books! We also enjoy having a campfire at night, a quiet, relaxing way to end the evening (which is low energy time for me).

Your limits and routines are probably different than ours. Perhaps you can't manage mornings and have to sleep past noon or maybe you use a wheelchair to get around. The same advice still holds - create your own camping & travel routines to meet your own needs. Every campground in the U.S. has handicapped-accessible campsites, and every public park has at least one handicapped accessible trail.

I have been sick for 14 years, my older son for 12 years, and our younger son was sick with milder ME/CFS for 10 years before he recovered. Through all of that, we have never skipped our annual family vacation or stopped enjoying camping. With some simple adjustments and changes, you too can still enjoy camping, travel, and the outdoors, even with ME/CFS.

IMPORTANT P.S. As much as I love the outdoors, I now have a healthy fear of ticks! I have had Lyme disease twice and our older son has 3 different tick infections that he's been battling for almost 10 years now.  You MUST take precautions when outdoors to prevent tick bites - there are infected ticks carrying Lyme disease and other serious infections in every state of the U.S. and on every continent except Antarctica. So what do you do? When the weather permits, you can wear light-colored long-sleeved shirts tucked into long pants tucked into socks. Check yourself for ticks frequently and definitely before bed each night. And always wear insect repellent that works against ticks. Most natural repellents either do NOT work against ticks or wear off too quickly, so DEET or picaridin is usually necessary. We wear bug spray with low concentrations of DEET and wash it off at the end of the day (you need to re-apply if you are outside for long - read the label).  Here is a Consumer Reports article on best insect repellents they tested. They've revised the article to focus on mosquitoes and Zika virus, but they still address ticks and Lyme disease, too (though the incidence maps are NOT accurate - the infections are much more wide-spread). As you can see in the article, there is only one natural product that they found effective. Believe me from hard experience, a little prevention can avoid a lot of pain and suffering!


Anonymous said...

Oh to be functional enough (despite having tried a gazillion things - recommended by specialists) to be able to spend time outside the four walls of my house or even outside my room - let alone outside or traveling!

Anonymous said...

And also to be able to afford (financially) travel, etc.

Anonymous said...

You are fortunate that you are among the more highly functioning, and able to travel. Both my spouse and I have ME/CFS, can no longer work, and have seen top me/CFS specialists. As you know, we all respond differently to trials of various treatments. Any increase in functionality is
tremendous for those of us challenged with this illness. For those of us mostly home bound, and unable to travel....sitting in the backyard, recalling travels prior to illness and
envisioning places you would like to visit in your mind can be helpful. Sometimes simple "adjustments" do not allow those
of us more severely affected to travel. So Treasure those
moments of travel! As I know you do!

Sue Jackson said...

So sorry to hear you are bed-ridden and severely affected. In most cases where no treatments seem to help, it means there are underlying infections behind the scenes. Once those are diagnosed & treated, then dramatic improvement usually follows - plus all the other treatments will work better. But with untreated infections present, it is often the case that nothing helps - we went through that with our son (in his case, it turned out to be Lyme and 2 other tick infections, but for many with ME/CFS, it is those or viruses). If you click on the first link in this post - Effective Treatments for ME/CFS, you'll find more information on diagnosing and treating underlying infections.

Sue Jackson said...

That's another great thing about camping - it costs almost nothing! Most campsites at state and national parks cost about $20 a night, you are handling your own food just like you do at home, and if you stay local, there is little gas cost either! Most of our money goes toward medical expenses, so camping has saved our vacations!

Sue Jackson said...

So very sorry to hear that both you are your spouse are so severely affected. One thing to be aware of with all the various treatments - even from the top experts - is that those of us with ME/CFS tend to over-react to everything, especially meds, and it can take a lot of trial and error to find just the right treatment, right dose, etc. Beta blockers are a good example - what works for one may not work for another or may have side effects. Lots and lots of patience and persistence really pays off in finding just the right combination for each person - as you said, we are all different.

I didn't mean for this post to be focused on travel, per se - I think it came off that way because I referenced our trip last week (which was an unusual one for us!). If you can manage some time lying in your backyard, then you can probably manage local camping, especially if you have some help (it must be extra-tough for you with your spouse also sick). I find that just being outdoors is hugely rejuvenating - glad you are able to enjoy your back yard!

Anonymous said...

I am glad your family (and others) have been helped by treating infections where applicable.
However, infections don't seem to be the reason for the illness severity of many of the people I know.