Saturday, October 29, 2011

What a Crazy Illness!

Sunset my last night at City of Rocks, NM

My stuffed nose disappeared the last day at City of Rocks.  Four days in the desert to clear up and acclimate!  I felt so good in the morning that I took a hike up the camp road at sunrise. 

Surprise!  Just because I feel energetic and strong doesn’t mean I can do anything aerobic—at least not yet.  I was pretty wiped out by the time I reached the top of the road, and instead of walking the entire loop, I returned down the hill (after resting for a while on a picnic table) and felt pretty tired most of the morning.  Next time I try taking a walk, I’ll do it on level ground.  At least walking to and from the bathrooms doesn’t tired me like it used to.  That is progress!

After City of Rocks NM, I spent two nights in a room made ‘safe’ for EI in the suburbs of Tucson.  The air in the room felt stale; but so did the outside air.  It was an attractive residential area, but only one window opened, and it seemed that the air exchange was lacking something.  The owner had converted her garage into a place safe for people with environmental illness, using metal shelving, mold resistant insulation, and tile with non-toxic grout.  I loved having a real kitchen and immediately drove to a supermarket which specialized in natural foods and bought a ton of fresh food, planning to make dinner for my wonderful host.

Within a few hours, I felt the lethargy and fatigue of my worst CFS, but devoid of other symptoms.  My host suggested it was a normal response to four hours of travel plus all the packing and unpacking.  I noted the possibility, took a swim, did some yoga, and was still tired.  I went to sleep at 7:30 pm and logged in more than 9 hours.  The second day, I felt the same lethargy all day, and the need to crawl into bed by 8 pm.  I tried spending most of the day outside, but it made no difference.  So I packed up my stuff and left early the next morning.

On the way out of Tucson, heading for Ajo, I saw a rental house share about 25 W of town which I really liked, so I decided to cancel my plans to drive all the way out to Ajo.  Instead, I headed up I-10 through Phoenix and then NW towards Kingman.  As I pulled out of Phoenix towards Wickenburg, where I’d planned to stop, the air felt clean and fresh (and significantly cooler).  I missed the RV park, and it was still early, so I continued heading north towards Burro Creek (land maintained by the BLM) which I reached just before sunset, enough time to enjoy the stupendous mountain views, find myself a site, and locate the bathroom.  I felt fabulous even though it was windy and cold – conditions that, in the past, would have sent me whining.  It was enough to put on a fleece jacket and some wood socks.  I made a sandwich for dinner and ate standing up at the side of the picnic table.  All the discomfort in my feet and head that gave me orthostatic intolerance in Tucson was gone!  Wow!

View from Burro Creek Campground

There’s not much to do after dark in the wilderness without a tent and lights (both tucked away in the car).  After listening to two CD’s, I was still not tired, and so I got out my computer and started writing this blog.  So much for my Tucson hosts theory that I was tired from packing and driving 4 hours!  I did all the same activities today, even drove an hour further, and continued to feel better as the day progressed.  Does that make sense?  Not based upon my previous experience of 20 years with CFS.  It only makes sense when I think of myself having Environmental Illness (EI) in which certain (unidentified) pollutants and toxins that I inhale or touch are having a profoundly negative effect on my brain and body.  When I get away from them, my body starts to function better.

The air is clean and fresh out here.  The sky is amazing out here.  There are no lights anywhere, not even on the bathrooms at the campsite.  You can see the milky way streaking across the sky.  I’m at a slight elevation (the road was uphill nearly the entire way after Phoenix), and mountains rise on four sides.  The wind whips through the valley, and the temperatures are in the low 60’s and dropping, but with my toasty down sleeping bag and wool long underwear, I have no fear of the cold. Now, after a full day of activity, I’m barely tired. 

Meanwhile, I’m so pleased to have escaped the ‘chronic fatigue’ I experienced in Tucson.   After living with it for 20 years, I have such tremendous joy at my newfound freedom from it.  All I need to do is live in the wildnerness!  Aaagh!  I want the modern conveniences of plumbing and electric and a nice kitchen again.  They’re no longer ‘conveniences’ but ‘necessities.’  And I miss easy access to internet and land line phones (because the cell phone hurts my ears). 

Even though sleeping in my Toyota Avalon is not an experience in comfort (for one thing, I’m a few inches taller than the car is wide, so I need to keep my knees bent all the time), I felt so good in the morning when I awakened that I decided to walk down to the gate to pay my fee.  When I got close, two huge bulls were grazing inside the campgrounds, and a herd of calves and cows were standing outside the cattle guard looking in, afraid to step on the metal slats.  One cow was trying to slide in around a rock at the side of the gate, but not fitting through..  I walked back to the car to get the camera, but when I returned, the calves and cows had dispersed.  It didn’t take long to pack up and head to Wikiup for a hot breakfast.  From there, it was almost another 2 hours to Dolan Springs.
In my fantasy, Dolan Springs was to be the wilderness experience near a quaint little town.  If you look on the map, it’s clearly in the middle of nowhere, with state parks and wilderness areas surrounding it, the west rim of the Grand Canyon 40 miles away, the Lake Mead recreation area north and West, the town of Kingman about 40 minutes south. In my fantasy, Kingman would have a great supermarket with lots of organic foods and a Trader Joes.  I stopped for gas at a shopping center that had all the stores normally next to Trader Joes, but no Trader Joes. 

North of Kingman the landscape changed.  No more stately Saqqara cacti, just acres and acres of sandy dust and little shrubby bushes.  I was quite disappointed, and for whatever reason – the mysteries abound—I started to get pain in my left sinus.  Was it emotional?  Was it because I got stuck behind a diesel truck on the uphill?  Was it the dust in the air?  Some pollution or industry around Kingman?  As always, many questions, no answers.  I guess it’s not for me to know the specifics, just to learn to trust my bodily experiences and honor them.

Dolan Springs looked like a typical Western town right out of the movies.  Dollar Store, no-name supermarket, one paved street through town, lots of trailers, RV’s, mobile homes, a few cafes, restaurants, a gas station, a chamber of commerce, a public library, police, fire, school.  I didn’t feel drawn to the place but I told myself to be open-minded.  Maybe the rental house would be lovely!

And it was.  All tile floors, all electric.  Roomy, clean, well-lit.  Just up against the eastern slope of the mountain surrounded by fields of Joshua trees.  Large empty garage in which David could paint.  The only thing that bothered me was the proliferation of aluminum foil, which he’d used to cover all the wooden shelves and doors, since many of his previous tenants were sensitive to wood.  I decided to give the place a try as the owner offered to let me stay for a night or a week.

We chatted for awhile.  I spent too much time in his house, which was not good for me.  I stopped in the public library – knew right away I can’t be inside that building – and had the same experience at the Dollar Store and the no-name supermarket.  What quality of life would this be?  Still, I figured the true test is how I sleep.

Fatigue again about 7 pm.  Kept myself doing odds and ends until 8:30.  No trouble falling asleep.  But since 1 am, I’ve been awake.  Turned off the heat and opened the window.  My left sinus swelled up badly.  So I finally got out of bed, and here I am, chirping away like a nightingale.  Chip chip chip.

My host in Dolan Springs told me that there was mining on the other side of the mountains (between Dolan Springs and Kingman) which had contaminated the water, but the well on this side is excellent.

Still, I am clearly reacting to something around here.  The combination of congestion and excitability (which I feel in my central and peripheral nervous system) is a sure sign of that.  Again, a mystery.  People say the air out here is good.  People say this is a great place to get away from electro-magnetic pollution.  Apparently, it’s not the place for me.

I’m sorry to move on.  I don’t have the vagabond mentality. I like to nest, organize my belonging, make a beautiful inside space and look out at a beautiful outside space.  So far only the rental 25 miles W of Tucson appealed to me visually, but the place was rather small for 2 people, and the sensitive owner has more restrictions that I think my husband could tolerate. 

So I guess that leaves me
    Still searching.


  1. Have you considered nutrition as a factor as well? Some of my health problems went away when I started eating Paleo (basicly no grains, no vegetable oil, very little milk products or processed products).

    Alas, mainly the non-ME/CFS problems went away (Acne, migraine/sinus problems), the ME/CFS symptoms improved only temporarily (but markedly) for about 2 month...

  2. "Within a few hours, I felt the lethargy and fatigue of my worst CFS, but devoid of other symptoms. My host suggested it was a normal response to four hours of travel plus all the packing and unpacking. I noted the possibility, took a swim, did some yoga, and was still tired."

    You "felt the lethargy and fatigue of" your "WORST CFS", so you took a swim, did some yoga, and were still tired?

    Can you see what's wrong with the picture Janis? Seriously. Talk about stressing or overstressing your overstressed, overtaxed adrenals.

    I still don't know what you're running from. I hope you'll address this in your next post.


    Karen J.

  3. Hi Karen J,
    I'll take you up on that! Quite soon.
    Be well.

  4. Great post! I am also paying close attention to my environment so I can find a place where my immune system behaves nicely, even though I wish I could just stay in my current city. And I have to respectfully disagree with Karen- even if adrenals are really a problem, yoga and swimming are great, gentle activities that won't raise cortisol.


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