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ME/CFS-Beauty in Desolation

Posted May 26 2010 10:27am

A theme has emerged in my writing this week, metaphors of life (and life with ME/CFS) found in astronomy. Imagine the photos below this post were taken on the moon.

My husband and I drive far to my CFS Specialist and had an appointment scheduled recently.  With all that has been going on around here and the stress we’ve been feeling, we had been grumping away at one another and needed to do something to change that. We decided to pull our trailer with us to my doctor appointment and camp on the way home.

Then, we decided not too. My youngest daughter, not used to living with parents snipping at each other, concerned about our relationship, encouraged us to go in spite of our list of reasons to drive straight home…ie. too much to do, everyone needs us, two of the trailer wheels need to be replaced and the inside hadn’t been readied for a new season of camping.  And, how in the heck do we pack with me unable to and him so busy?

We decided to do it anyway by way of shortcuts.  J (writing “my husband” over and over is getting tedious) threw things unpacked into the trailer to organize once we got to our destination. We let go of having the trailer in “ready for a new season” condition and took care of the tires by dropping the trailer off at a shop on route to the doctors and picking it up afterwards. We then set out to Crater’s of the Moon National Park, a place we’d never been before.

For two days we found ourselves and us beneath the stress.  There is something incredibly peaceful, calming and spiritual about Crater’s of the Moon.  It is a place of desolation, miles of thousands of years old solid lava in a myriad of forms, and formations, from plateaus of smooth swirls to craggy mini-volcanos.

I found there, a metaphor of living with a debilitating illness. Chronic illness melts away much of what we’ve grown and built and changes the terraine of our lives.  In so doing, the basics remain… the simplest of things.  If we let ourselves be present in what is left, we can come to find beauty, beauty that we most likely would have missed, in our pre-illness, filled with “doing” lives.

In some of these pictures, you’ll see what we call our “ENABLERS”.  They are tools which allow my husband and I to do what we love most in spite of the physical struggles of ME/CFS.  We are fortunate to have had the means to have slowly collected what we need to get us out in nature–our trailer (a dozen years ago), my wheelchair and walker in more recent years, and last summer during the US of A’s “Cash for Clunkers”– we turned in our ancient, barely moving van for our “Mid-life Crisis”, oh so fun, blue metallic truck.  J is my greatest “camping enabler”, as he does all the work to get us up the mountains and back and all the work in between.

We camp differently from “norms”, (love that term Jo), but I believe we enjoy it as much if not more, because it is something difficult and often impossible to do with disabling illness…like the occasional unexpected green tree growing out of the desolate terraine of Crater’s of the Moon.

A typical day camping begins with my husband cooking breakfast and me helping as much as able.  We linger over coffee and french toast (and my morning meds).  We get ourselves dressed and presentable enough to emerge from our little home on wheels and take a “wheelchair walk” -husband pushes me, I get out now and then and walk, using the wheelchair for support until my legs start shuffle, then, I sit down again. My husband returns to his wheelchair pushing work out.  As you can tell from the pictures below, pushing the wheelchair burns off a heck of a lot more calories than sitting in it.

Crater’s of the Moon has paved paths around mini-volcanos, caves and lava formations.  This made wheelchair walking easy.  I do though fantasize about an “all terraine wheelchair” that would allow us to wheelchair hike- off road.  How cool would that be?

The rest of the day, I lounge solo in the trailer, take in the beautiful views out the windows, crochet, read and sleep. My husband mountain bikes.  Dinner is much enjoyed, as we sit together talking, me propped up on pillows to help our evening last as long as possible. When my brain isn’t too tired we play Rummy until it is– rotating being Gin and Rummy 500.  He’s better at Gin and me at 500.

During my doctor’s appointment my quality of life was talked about.  In a medical sense, due to my lack of function, neurological struggles and pain, it is considered low (desolate perhaps).   I hate that.  Low is not what I believe my quality of life to be (high in physical challenges/pain yes, but low in quality, NO).

My life in spite of being home bound and all that ME/CFS has melted away, is filled with my family, love, friends and the dear ones I’ve found in my laptop, soy lattes and chocolate when GP is in check, good reads, beautiful yarn, stacks of warm blankets, amazing views out windows, movies on weekend nights, short shopping escapades with my daughters, political debates with my son, snuggles with my granddaughter, and ways to do what I love the most with my hubby–take to the mountains and stay awhile.

*The photos below include the view out our back trailer window (the one with the green tree), caregiver respite (my hubby taking a much needed rest on the picnic bench), me taking a break on my walker during a short walk, J camouflaged in red.  The rest are of landscapes, and one is of us on a wheelchair walk (J put the camera up on a rock, set the timer and ran so we could both be in it).  The photos are small; you can enlarge them with a click.

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