Tuesday, November 15, 2011

Strong and vigorous, or weak and tremulous

Imagine feeling great when it’s cold outside.  To warm up you get in the baths or the sauna.  You sweat, you drink lots of water, you detox.  You come out feeling warm and less toxic, and the effect lasts for several hours.  If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm.  You make dinner with a floodlight if the weather is clear.  If rainy, you find a restaurant.  After dinner, you walk down to the pools and sauna once again to combine detoxification with relaxation. 

After you disconnect the air [un]freshener in the public restroom, the smells no longer bother you.  You climb into your tent and slip under down quilts and flannel sheets, fall asleep right away, and in the morning, wake feeling rested.  It’s 6 am.  You throw on a sweater or jacket and watch the rosy fingers of dawn lift the sun into the sky.  In a short while, it’s warm enough to remove your jacket and replace your wool socks with flipflops.  You heat water for breakfast tea on your Coleman stove, make eggs or hot cereal or gluten-free French toast, and still feel good enough after breakfast and clean-up to do something.  You know you have CFS but you don’t feel sick.  On the contrary, you feel strong and vigorous. 

It’s only when you do something more strenuous, taking a 1.4 mile hike through a nature preserve in the desert, that you experience your limitations.  In the past, 1.4 miles would have flashed “DON’T WALK” in large red letters in your awareness.  But since you’ve been feeling so good, you think you can handle it.  It’s 7:30 am and still cool.  The sky has filled with light gray clouds.  The path has more downhill and uphill than you expected, and the desert sand is often as soft as the sand on a New Jersey beach.  You tire when you reach your destination, lie down on a picnic bench for 20 minutes, and conserve your energy on the way back to the car by walking in silence.  Still, after eating breakfast and going to the pools, you feel fine at the end of the day.  PEM is no longer your shadow!

So you find yourself wanting more.  You believe you’ll feel better as you release more toxins.  You’ve seen Dr. Rea and Dr. Hope, both of whom said you’ll become less reactive as you become less toxic.  And your naturopathic training has taught you that removing toxins facilitates self-healing.  The toxins, whether mycotoxins or xenoestrogens or pesticide residues mess up hormones and neuropeptides in addition to creating inflammation.  With a lower toxic load, neuro-endocrine-immune functions will work better.

Consequently, you visualize yourself in a little house with tile floors or marble floors, a covered patio and lots of windows.  Outside it is warm and sunny.  In the house you can keep your things organized, your refrigerated meds at easy access, your nebulizer hooked up.  You imagine doing your coffee enemas and CSM on schedule, reading at night in bed, and making food on an electric stove.  You decide to try four walls and a roof once again before you give up on the great indoors and escape to summer in S. America, Hawaii, or the Caribbean islands. 

Your first stop is an RV dealer.  The sizes and prices vary greatly.  Your husband wants to transport a trailer behind his 6 cylinder F150, which means you have to find something lightweight and small.  You look at several 16 to 19’ trailers and find them all depressing.  They’re fine for a short camping trip, even a month or two in the summer.  But you know living in them for 4 winters months will not work out well.  Besides, the new ones still smell of formaldehyde and the old ones could have mold, since older RV’s are notorious for getting roof leaks and growing mold.  Many MCS, CFS and EI people buy them and strip them to remove any materials that outgas and grow mold.  But you have no place to do that, and can’t wait 6 months for a place to live.  Besides, the idea of living in an RV park inside an 8 x 15’ space is hard to digest after living in an overly large house.  And so you return to your tent.

This has been my life for the past 10 days at Sam’s Family Spa in Desert Hot Springs.  

Sam’s is a nice place to park an RV, but not such a nice place to pitch a tent for those you like privacy and the feeling of being close to nature.  But if you’re into mountain views, Sam’s has them a plenty: ranges to the north, south, east and west – with openings for the Coachella Valley’s I-10 to carry vehicles (and pollution) to and from Los Angeles.  The air has the constant haze of pollution.  Even in nearby Joshua Tree National Park, which extends many miles to the east of Desert Hot Springs, the ozone data from the various government agencies rank it as ‘moderate,’ one step below the level considered risky for the sick and elderly. 

I did well here physically, and found myself wanting to stay on as my strength and vigor increased.  I didn’t react adversely to anything until the day it clouded up and some odor rose near the pools.  The barometric pressure dropped.  Lying out in the sun required wearing jeans and a shirt.  On that day I felt tired and dozed off after lunch.  I wondered why I was suddenly tired.

An internet friend (Lisa) showed up at the place and we transformed our virtual Facebook friendship into something three-dimensional and material..  She came by the pools shortly after I awakened from my nap and asked “Did you feel anything different this afternoon?”

“Yes,” I answered.  “I suddenly felt so tired that I dozed off.  This is the old CFS-ME me, not the new me who sleeps like a babe at night and no longer needs to nap.”

“I think you felt the stuff I’ve been talking about.  It’s not mold, but maybe something rising from the sewers that seems to come out at times in many locations.  It’s not so bad here, but when it’s worse, I get an extreme reaction and almost immediately feel suicidal.”

Interesting, I thought.  David came by a little bit earlier and was full of negativity.  He said it came on after he went into town.  I wonder if he was also affected by the same energy even though he doesn’t have CFS.

The next day, I was normal again, despite the constant drizzle of rain, some of which infiltrated the tent and leached into my clothing, causing me to wrinkle my nose as the wet patches in socks and slacks touched my warm skin.  I walked over to find Lisa and soon forgot out them, perhaps a record for me in dealing with unpleasant temperature changes and weather.  Amazing!!!

I love feeling strong and vigorous, watching my body deal with all kinds of things that in the past would have sent me to bed with a sour face and whining voice.  I’m happy, amazed, and sick of camping.

Fast forward to our arrival Sunday night in Tucson, where Kristy has a rental unit out in the country is the middle of nowhere that we agreed to rent for a month.  We drive the back way from Ajo through the Indian reservation, oohing and aahing at the magnificent saguaro cacti rising from fields and hills.  There are few road, no industry, no farming. The air is clean yet wet, for it’s been raining all day, even though our 7 ½ hour drive took us through sunshine until the last hour.  We walk into the house.  It smells like heat.  There’s a space heater in the bedroom and a heat pump with ductless heating in the den.  Otherwise the place looks inviting.  I turn the heat off and open the windows to air the place out. 

David lies down on the bed to take a nap.  I unroll my freshly washed yoga mat in the den and start doing yoga.  The smell of the mat starts to bother me and the thought crosses my mind that the place will not work out.  I push it out of my mind, roll up my mat, and take care of making dinner in our tiny but well-equipped kitchen.  I don’t want to fail, don’t want to be outdoors.  It’s cold, rainy, and I drove all day (9 – 5).  I set up the tent on the covered patio as a back-up in case I can’t sleep indoors, and I set up an air mattress on the floor of the den.  With three options for sleeping (the bed is the 3rd), I’ve covered all bases.

After dinner I lie down on the bed to do my nasal glutathione.  My heart is pounding.  I recognize the signs of a virulent reaction to some mysterious thing that exists indoors.  I hope I’ve caught it early enough and announce I’ll be sleeping out in the tent. I still want the house to work out for cooking, bathroom, and rainy days.  I put a wool sweater on over my pajamas and crawl into a down sleeping bag, reading for a while with my headlamp.  My heart is still pounding, my hands are ice cold, the tent fly flaps in the wind and triggers my startle response.  A pack of howling coyotes sounds quite near and coming nearer.  I do not fall asleep until I take a Xanax – the 1st I’ve had since leaving Ohio in September. 

I wake feeling week and tremulous.  David and I confer about our options.  We really don’t want to drive 8 hours back to Sam’s and live outside in our tent.  So he decides to remove all porous items from the house and clean it thoroughly.   He isn’t happy about cleaning a house again; in fact, he’s downright hostile to it.  But the alternatives seem worse.  And so I spend as my time outside as the cool weather permits.

After a day outside, I’m doing significantly better than I was in the morning, but I’m still not weak and still prone to that feeling of inner trembling.  We decide to give me a week to adjust.  If I stabilize and don’t improve, we’ll use the place as a base to shop for an RV or plan a camping trip in a part of the world experiencing summer.  If I get worse, we’ll have to leave ASAP. 

I sleep outside that night in the tent, falling asleep easily and sleeping many more hours than normal.  All that sleeping concerns me, but I tell myself to keep an open mind.  It takes a few days for an inflammatory cytokine storm to move through the cascade of effects.  In the meantime, we’ll get clarity about our next move.

Tuesday, I’m still aware that something isn’t quite right in the house, but only the bedroom seems to trigger me.  I’m okay in the bathroom and kitchen, where there were never porous objects to remove.  The den, which had only a few sofa cushions and a musty mattress stored in the closet, is where I spend the rest of my indoor time.  The computer modem is in this room and I’m glad to have a connection that doesn’t drop me every 15 minutes.  I increase my detox protocol – a 2nd coffee enema in late afternoon, a 3rd dose of cholestyramine.  I don’t have nearly as much sinus pain nor do I have palpitations.  I start to think the place will work out for a month.  Even if I don’t continue to improve for the winter, at least I could stabilize.

As night falls, my feet and ankles are cold.  Oops, this is a bad sign, for I only get cold ankles when my immune system has started to react to some inhalant.  I’m leery of putting on the heat, and even with 2 wool socks on each foot I feel cold.  I start dreaming again of going off to a warm beach where I can comfortably live outdoors.

Don’t know yet what tomorrow will bring.  It’s a life of uncertainty.  We try to view it as an adventure, but sometimes the old worrying habits get in the way.  At least we developed an emergency escape plan today.  Like all such plans, we hope we don’t have to use it.  But I must say, having had a taste of nectar, I want to bathe in its sweet waters again, and I’m not sure I’m willing to compromise.  I’m about to get another blessing from Mr. Trivedi which I hope will increase my intuition about the best course of action for my future.

For those interested in reading about the experiences of others with CFS who have also found their symptoms dissipate and their strength return when traveling or moving to a place with clean air, visit the forums at Phoenix Rising and look for the link on Hawaii. http://forums.phoenixrising.me/showthread.php?13799-Mold-or-Oxygen-Feel-better-in-Hawaii  


  1. I'm so happy to see how many improvements you've been able to make, Janis!

    It seems to me that you've been doing well because you've focused both on being in a good location in terms of outdoor air and on avoiding mold/toxic contamination from buildings (including cross-contamination of objects). Both of these have been important in my own recovery, and the recoveries of other people who have gone this route.

    Here is a new board that addresses the topic of the "Locations Effect." The goal is to share information about how we feel in different places, so that others will find it easier to find their way to good spots.


    Avoidance of indoor biotoxins and cross-contamination of objects is tricky. I have some information that I will be happy to email to anyone interested, so please feel free to let me know.

    Good luck Janis!


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  2. Hey Janis-

    Lisa forwarded this post to me. What a wonderful read! I found myself wanting to read the next chapter (and wanting to move to Palm Springs).

    I'm seriously considering embarking on mold avoidance so I'm trying to get information from people who are trying it.

    I'm fresh out of a relationship and have nothing to lose by trying it.

    I don't know if you're near any wireless places but if you are and if you get a chance I'd love to talk via email:

    tcampbellphd at google


  3. I enjoy reading you blog Janis! Thank you for including us on your journey.


Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.