Three weeks since the Trivedi retreat, I'm still bubbling with enthusiasm. Every day I move closer to recovery, millimeter by millimeter. Twenty two millimeters make an inch -- a real, visible difference!
I have moved up a notch on the Bell Scale from a 30 (during April relapse) to a definite 40 going on 50. Dr. David Bell defines a 40 and a 50 thus
40 Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 50%-70% of expected. Not confined to house. Unable to perform strenuous duties; able to perform light duty or desk work 3-4 hours a day, but requires rest periods.
50 Moderate symptoms at rest; moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
The categories seem limited to me because I'm so much more focused on what I can doand, perhaps, because I've been sick so long I've forgotten what it is like to be completely asymptomatic. Here are some of things I now can do, compared with 3-10 weeks prior.
now 4 loads of laundry in 4 days v. used to do 1 load in 3 days
prepare easy meals and clean up afterwards v. left cleanup for someone else
go the stores and do other things afterwards v. used to go to store and rest
skip nap if I get 8 hours of sleep v. couldn't function without nap
wake refreshed after 7-8 hours sleep v. exhausted and groggy in morning
15 min anaerobic exercise (weights) without PEM v. always tired after exercise and sick next day
shower, straighten up, do something else v. showering always left me tired
walk 4-6 blocks in divided doses v. used to walk only around the house
Since the Trivedi blessing energy worked on my heart, I've only had very slight palpitations, like a soft flutter, about 3 times -- none of that out-of-control forceful palpitations like a wild animal trapped in a cage. Recording blood pressure and pulse 2-4 times a day, I see a pattern of decreased tachycardia. I recover my quickly from overexertion.
Standing is still my biggest issue. If I have stress, if I don't sleep well, my blood pressure drops and I get symptoms of orthostatic intolerance after a few minutes on my feet. If I am rested and relaxed, if my blood pressure is over 100 systolic and 75 diastolic, I am able to stand for a longer time without symptoms. Because of the standing problem, I'm not quite back to where I was in March 2010, before relapsing.
I haven't pushed the envelope to see how far I can go. I just find myself doing a little bit more every day.
To be fair, I ought to point out that I've had some symptoms re-appear. I barely worked on the computer and didn't have time to blog for over a week because every night, by 8 pm, my right eye would ache, my right tonsil would swell, and my right shoulder and hip would hurt. I'd have to lie down with an ice pack, or soak in epson salts for a hour to get a little relief. It hasn't bothered me the last two nights.
Also new has been a few days of muscle tension. In the past I had muscle all the time; this (as well as depression) got me into yoga. I found that doing hatha yoga postures relieved my body tension; it also helped me deal with insomnia. As unpleasant as it is, I'm celebrating that I now have the energy to get tense! Hopefully I'll soon develop the energy for a vigorous-enough yoga practice to release the tension.
My attitude towards new symptoms has been positive: I see them as the body's attempt to heal. For the eye pain, I imagine my retina trying to repair the damage from the retinal detachment. For the tension, I celebrate the capacity of my adrenals to make more stress hormone. This attitude in itself is worth all the trouble I went to in Chicago!
May you all find a path to recovery! I'm still working on developing a Trivedi effect (tm) study for ME-CFS in hope of helping those who can't afford to pay his fees for blessings.