"I'm not sure about a birthday party in September," I said to my sister this morning on a Skype call. "I don't know if I'll have the energy."
"I thought you were getting better," she replied.
"I thought so too. I'm doing things I haven't done for years, but I'm also not doing things like cooking. I think my net energy expenditure is about the same." I took a breath and sighed. "Whenever I get tired, I start doubting everything."
I suppose that is how it should be. After trying a gazillion therapies -- expensive supplements, i.v.'s, restrictive diets, electrical gadgets and more -- I am still not able to exercise and travel. While my sister and mother are going to castles and Roman ruins in Germany, I sit in Ohio, looking out the windows. At least the views from my house are wonderful, lush and green, like this view from the office window, where I am sitting at the computer.
Should I continue to be optimistic that Trivedi's blessings will continue to help me improve?
I ask this question after nearly three months. I know my tendencies: I am optimistic at the outset of each new thing I try. I see benefits. I believe it is helping me -- at first. Then, after three or six or nine months, I look back and see that my progress has been infinitesimal. And I have to admit that I engaged in quite a bit of wishful thinking projected onto reality.
"I think you're improving," David piped up. "You're living with the ups and downs every day, but I see significant changes."
After the call, I pressed him to clarify. "You have more energy... for just about everything. You're more vibrant. You're not lying around all the time." Hmmm, can I trust him, or is he also a willing participant in POWTOR --the projection of wishful thoughts onto reality?
I look back over the days since my last blog: 11 days ago. Yes, I did have quite a bit of activity. Thursday and Friday we drove up to Detroit, met with Dr. Martin Lerner and picked up a Holter monitor, drove to Ann Arbor, stayed overnight with friends, drove back to Detroit, stopped in Toledo, and drove home.
In Ann Arbor, I did two things I would not have dared do earlier the month before: walked around a farmer's market in the heat and then went into a museum, 25 minutes before closing time. Afterwards, I did yoga for an hour, then talked with friends for 2 1/2 hours and even helped with the dishes. I felt NORMAL all evening -- to the extent I can remember what normal is! I paid the price at night by not being able to fall asleep, until, after 6 hours of tossing and turning, I got the bright idea to put the sofa-bed mattress on the floor and woke David.
The next day I felt more brazen: after lunch in Toledo, we stopped at this amazing all-glass building across from the art museum, where we toured the exhibitions of old glassware and modern glass art. We spent nearly an hour on our feet, and while I was tired afterwards, I didn't feel sick. I put my seat back, raised my feet onto the dashboard, and let David drive the remaining 2 1/2 hours to our house.
Saturday we had company for dinner (I made salads and dip, David grilled the meat) and then drove an hour to Wooster to see the old musical, Gypsy. Afterwards, we went out for ice cream. By the time we finished after 11, I was not only tired but had a sore throat.
I thought it was the typical CFS sore throat that has been bugging me for the last few months, but I found out on the following Wednesday (after two days of a low fever and all over aches) that it was a strep infection. I left the doctor's office with amoxicillin capsules and a promise to rest and drink plenty of fluids.
Reluctant to take antibiotics, I kept thinking this is the strep coming out of me after all these years. I kept thinking of Reckeweg and German homeopathic caveats that antibiotics push the infections deeper into the body and set the stage for chronic illness. Hadn't I taken tons of antibiotics, for strep throat, tonsilitis, you name it, in the years before I came down with CFS? As chronic disease reverses, the suppressed infections and toxins have to come out , as as they do, they produce the very symptoms that were once suppressed.
I decided to hold off another day. I added monolaurin to my regimen of salt water gargles (reduces swelling), xylitol (it kills strep!), and ProBoost thymic protein A (supports T-cell maturation). For the first time that night since the gluten episode , I didn't wake multiple times during the night and had normal urination. My kidney-adrenal meridian had recovered from the setback.
Thursday, miraculously, I felt fine. My throat didn't hurt at all, and I had no fever. I read e-mail, rested, and drove to Columbus for satsang, a gathering of friends who chant and meditate together. The antibiotics are still unopened.
I felt great until I got home that night and got very upset about one of those relationship issues which I know is not important but I just couldn't seem to surmount. The emotional turmoil spilled into Friday, despite 11 hours of sleep, and we didn't have a chance to talk it through until late Friday night.
Saturday. Energetic after I awakened at a record late: 11:40 am, I did a load of laundry after showering, hung it out to dry, then started another load. By 3 pm I felt tired. Was I trying to do too much? After three days of fever followed by three days of emotional turmoil, I should take it easy, I told myself. Yet I felt such a compulsion to get things done.
That compulsion is the most significant difference. In the past I have recovered the ability to exercise, the ability to concentrate, read, and work, and the ability to sleep through the night. But I have never before recovered the motivation (or ability) to get little things done around the house. While I peer into the pantry closet and wish I could tackle a big project, I am mostly content to be tackling little projects. They will all add up, bit by bit.
I know in my heart that someday I will surmount the disorder that accompanied my fall into ME-CFS. I look at the stacks and boxes on the bookshelves at my future projects. They no longer seem impossible.
Next blog: my experiences at the San Diego Trivedi retreat. I leave in 3 days and return on August 2.