Tuesday, October 4, 2011

My first three days alone

Day One (Saturday)
I dropped David at the airport at 3 pm and soon felt a mix of emotions, turned off the radio, and tried to stay present as I drove through town looking for a place to pick up wifi.  The principle feeling was sadness, which I felt as heaviness in my heart.  I already miss David. 

I also felt some excitement.  Camping alone will be a huge challenge for me, as I’m not an experienced camper.  I’m ready to take it on, but not as ready as I was before I crashed two weeks ago.  The wind was taken out of my sails when I had to leave with a chaperone, so to speak; and although I’m glad I had David along to help with the physical labor of moving and setting up camp, I frequently found myself angry because he was there---not so much angry at him, although that’s how my anger often manifested, but angry at the situation which had prevented me from doing something I really wanted to do.

I had to put up with the acrid smell of overheated grease to go online, lost the connection several times as I tried to upload pictures to my blog, and finally closed out before going through my e-mail.   The heat outside was leaving me feeling dehydrated.  My lips had started to get chapped yesterday, and although I drank often, I couldn’t seem to drink enough to rehydrate my body.

Dehydration is a common problem with CFS and CIRS because the hormones that control how much fluid we retain are often too low.  I know that’s true in my case.  I try to drink frequently, but because of the walk to the bathroom at the campsite, and the fact that I’m not beside a faucet with cold water, I often wait until I’m parched before getting a drink.   In the next few days, I hope to be more cautious with this as I don’t plan to drive around the way I did.

Back at the campsite, I piddled around feeling unmotivated and aimless – a sign of feelings being numbed out.  But when I finally got the tent re-organized, with my clothes out of the suitcase in piles, and took a hot shower, I felt hugely better.  My sadness now feels less like missing David and more like grieving for the loss of a life of comfort in my nice, modern house, for the loss of the lush, green lawns and woods of Ohio, for the loss of the freedom to go into buildings without getting assaulted by smells and toxins that provoke an immune response. 

I look around the campsite with its dried up grass, dirt, tents and RVs everywhere, and miss the privacy I had home in Ohio.  There, my nearest neighbor is 200 yards away; here, less than 20 yards.  I hear voices at the neighboring picnic table, wait in line for a shower at the rest room, and as my eyes scan the surrounding area, see more cars and structures than nature.  I will not be alone, nor lonely.  Yet I long for the experience of  a retreat in nature where I can sit quietly, alone, listening to the sounds of wildlife and water and wind.  I hope the place clears out Sunday afternoon. 

Since the crash, I’ve been harboring the fear that I either won’t get better, or that it will take me too long.  Once in a while, especially when symptoms of orthostatic intolerance emerged, it would pop up into my consciousness.  Today, after David left, I realized I was already feeling stronger.  I didn’t have the urge for a nap today.  Nor did I long to lie down.  This is to me the best sign that I’m doing the right thing.  Now that I’m alone, I think my transformation will accelerate, and I’m psyched.

Day  Two  (Sunday)
Waking at 6:20 after a good night’s sleep, I enjoyed the opportunity to meditate in the morning silence. My mind is quieting down from the chatter I’ve been experiencing since the crash 2 weeks ago, and I felt quite peaceful in the intervals between the thought trails.

Much of the cool morning was filled with chores.  I appreciated David’s contribution to cooking and dishwashing when he was here, yet found myself valuing the silence more.  I worked at a slow pace, feeling present with each task.

I was still quite congested, and now had loose bowels to add to my symptoms.  As usual, numerous theories came up for evaluation:  I ate something bad; I’m taking too much Vitamin C; I’m detoxing; I’m reacting to the milk in this Starbucks Chai Latte.  Whatever.  It’s another uncertainty of this complex illness.  Yet the amazing thing is, I don’t really need to know!  Perhaps an answer will come.  If it does, great.  If not, I go on with my program until the next step is 100% clear.

After breakfast I drove into the nearest town (25 miles) where I sat outside at a Starbucks reading e-mail and posting my blog.  The traffic noise and smells were mildly annoying but not disabling.  I made a cardboard awning to place around my laptop so that I can work outdoors.  It folds up in my laptop carrying case.  It works in partial shade, but not in full sun, where my limited contrast sensitivity restricts my vision.

Lunch was another mix of chores: move the cooler, change the icepacks, boil water to wash dishes, walk to the pump to fill the water bottles.  I was tired enough afterwards to take a long rest in my tent, during which I practiced yoga nidra and centering until I felt my body relax and experience the flow of divine energy, which I experience as a melting, tingling, and light-filled sensation.  I was still tired afterwards, so I lay in the tent reading an interesting novel, The Elegance of the Hedgehog.  Then it was time for the long walk to the shower to wash my hair in preparation for a special master blessing the next morning.  More chores around dinner, including lifting the heavy freezer and the cooler into the car and putting away anything that might attract raccoons.

By paying attention to my bodily sensations and thoughts, I was able to discover that CSM dehydrates me.  I made a point to drink more water, and decided not to take it tomorrow during the hot afternoon when I’m already hydration-challenged in this dry climate.

The last thing on my agenda was driving 2 miles east to get a cell phone signal so that I could join the Trivedi Master Enhancement Program monthly call.  Guruji is currently in Hawaii spending nine days in intense prayer and trance, during which time the energy from his transmissions is significantly intensified.  In answer to his request to share about ‘fear of the future,’ I spoke about my own lack of fear.  In the past, the entry of new symptoms (GI, respiratory) would have sent me spiraling into anxiety with fearful thoughts like ‘how will I manage now?”  “I’ll be too tired to take care of myself” leaching onto my stream of consciousness and sucking me dry of calm, positive thoughts.  No more, thanks to the blessings.  I might have one of those thoughts, but it slides away quickly, leaving me free to think positive and hopeful thoughts.

Day Three (Monday)
I woke with a splitting headache at 6:20, which is quickly becoming my habitual time, and has to be the most remarkable transformation for a girl who was a night owl even in childhood.  I felt very hot, checked the temperature (55 degrees) and put a fleece vest over my pajamas to walk to the bathroom – another remarkable experience for a girl who’s been cold since childhood. 

When I got back to the car to put away my toiletries, a yearling doe came close, about 3 feet away.  I know she is hungry, and even though we’re not supposed to feed wildlife, everyone at the campground does because the drought has destroyed all their food and they are starving.  A neighbor has left me a bag of corn, and I dropped a handful on the ground for her before going into my tent for my special master blessing.

Usually I rest in the master blessing energy for 25-30 minutes.  Today, I stayed in it for over an hour, savoring the freedom to let it run its course and wait for the urge to move, or the hunger, to call me away.  I realize I could live in that energy all the time.  I do, actually, if I think about it, for the divine is always with us, always filling our cup with unconditional love and joy.  Yet I rarely am able to pull out of my contracted state to experience it.  In the past, when I was doing well, e.g. in remission, I’d often get a few moments of this experience in meditation, but as soon as I relapsed, that experience would become inaccessible.   Guruji’s ability to make this energy available to my conscious awareness is truly a miracle! 

I went through my usual process of theorizing about the cause of my headache and came up with four theories which made sense.  Was I reacting to the polyurethane foam in my new Thermarest sleeping pad just as I’d reacted to the latex foam bed?  Was my down sleeping bag still provoking reactions despite its fourth washing with borax?  Was the sinus infection rebounding after taking my last Diflucan two days prior?  Or could this be detox from the powerful blessing last night?  I thought of solutions to all of them, believing they may all play a role. 

To the extent that detox was involved, I knew a coffee enema would help me.  With the campgrounds emptied of weekenders, leaving only six big RV’s and me with my tent, I knew the bathrooms would be empty enough to accomplish the operation in peace.  And I did.  Coffee enemas stimulates bile flow and liver activity and also raise glutathione.  This one relieved my headache.

Post lunch fatigue was extreme with the temperature in the shade climbing to ninety and the sun beating down on the picnic table and car.  I’d planned to walk over to one of the shelters, but felt too tired and full to go anywhere. I rested in a shady spot and then lethargically finished my chores.  I’m fantasizing about air-conditioning or swimming in one of the lakes.  Fantasize is the operative word, since both make me sick right now. In the meantime, a few sprinkles from the pump as I washed off my yoga mat gave me partial relief, and a few hours later, after two hours of sitting in partial shade, I felt restored.  I did yoga for the first time in over a week, enjoying myself so much I nearly missed the window of opportunity to prepare dinner in the little daylight remaining. 

Day Four (Tuesday)
I tried to sleep last night without a down quilt or bag, but I still woke with a sinus headache at 3 am, at which point I covered my chilly body with the luxurious loft of down and slept another 3 ½ hours.  It’s not as bad as it was yesterday, and already, in mid-morning, it’s barely noticeable.  I still think about renewing my prescription for Diflucan but don’t act.  Azole-type prescription drugs kill off sensitive yeasts and fungi and leave more toxic, axole-resistant mutations to flourish.  Better to get the terrain healthy enough for my own body to eliminate the fungal sinus infection.

I also think about how I might sleep without my Thermarest sleeping pad.  The asphalt pad is hard.  I’d need to pile towels and blankets over my yoga mat, but I have a pretty minimal supply with me.   So I consider the options: 
1.  sleep on the backseat of my car.  This gets a B- rating.  It is not the greatest environment since my carpets are a bit moldy and I need to buy a new vehicle.  But on the plus side, I’d like to experiment with sleeping in the car so that I can travel further west and crash for a night without having to pitch the tent and schlep out all the bedding.  I could cover another 100 miles each day without those laborious chores.
2.  Wait for the replacement of the Big Agnes air mattress I used over the summer to arrive.  I rate this option B.  David is mailing it tomorrow.  It should take 2-3 days, but sometimes priority mail takes 1-2 weeks.  When I mailed the damaged one back to Big Agnes in Steamboat Springs, it took 3 weeks!  Do I want to wait that long before I know if the Thermarest polyurethane is causing sinus pain around my left eye, temple, and cheek (just as the natural latex rubber foam mattress did)? 

I stare into the hole of inertia, like a giant yawning mouth.  I will do nothing, which is another way of saying, I will wait another day.  When the urge to act is compelling enough, I will do something.

In the meantime, my steps are more sprightly as I walk to the bathroom in the cool mornings, which assures me that my energy and well-being are definitely improving little by little.  I’m not feeling any loneliness, and the chores don’t seem weighty today.  I finally got an hour to return to editing the book I'm writing.  Only a hint of restlessness, a curiosity of what I might find if I drive west to the Arizona and California deserts.  I have not yet explored a desert climate, but hope to do so before this odyssey is over.

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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.