Sunday, January 24, 2010

My Best Week Yet

I had a few extraordinary days this week.  Can you see the big smile on my face?  It is exhilarating to realize that I am REALLY making progress!

Last Saturday I did more than I've done in many months.  Even after a night deprived of sleep (I got about 5 hours), I moved through a full day without stress.   The catalogue of my activities sounds almost like a normal person: shower and wash my hair, cook and eat breakfast, pack brown bag lunch, clean up the kitchen,  acupuncture, drive 55 miles, drive around Columbus, watch 3 hour opera (Carmen, the MET HD broadcast), walk around Easton mall visiting 4 shoe stores, drive home, make dinner, e-mail and computer forums for over an hour.   Around 8:30 pm  I felt REALLY tired, but aaah,  it was such a good feeling to be tired after having done so much.

If you have ME-CFS, you won't be surprised to hear that I was very very tired the next two days.  I could barely walk around the house.

But by Tuesday, I felt recovered.  In fact, my head was clear -- almost as clear as I remember it in the past -- which made it possible for me to concentrate for several hours on an editing and translating project!   The next day, my mental clarity was almost as good during a morning conference call with my collaborator.

This changed again on Thursday after my doctor's visit.  I showed Doc my low nutritional mineral levels and asked if I could get more minerals in my I.V.  He added all those he had available.

I told him that I'd developed restless leg syndrome since my last chelation, but had kept it under control by taking potassium and calcium at night.  He suggested eliminating EDTA this week, and maybe taking it every 3rd week in the future.  So I did only a half dose of DMPS, which I calculated as <1 mg.

Despite the low dose, I had trouble falling asleep on Thursday (my usual response to chelation), and I was brain-fogged and spacey again on Friday and Saturday, leaving the cashier at Staples with the two reams of paper I'd purchased but remembering to take my rebate receipt!  

Despite being a space cadet, my energy was great.  I went to the gym on Friday and was able to increase my weight by 5 # on each machine.  My yoga practice Saturday afternoon was strong.  Moreover, I went with a friend to Goodwill and stayed there for nearly two hours, on my feet the whole time!!!!  This, for me, is an extraordinary accomplishment... for orthostatic intolerance has been my nemesis.

Back in October 2007, when I relapsed for the 3rd time, orthostatic intolerance (e.g. difficulty standing due to a failure of the autonomic nervous system to regulate blood pressure and stress hormones) became severe that I had to go around the house in a wheelchair.  I relocated to the D.C. suburbs to live with my mother so I could have another person in charge of food shopping, preparation and cleanup.  After working with an acupuncturist, I improved enough after 7 months to return to my home, but I still found myself limited to 15 - 30 minutes of standing during the day.  To be able to stand for two hours at one time --even though I was exhausted afterwards and could barely function at night -- gives me a wonderful feeling of freedom.

Two hours on my feet at one time!!  I am beside myself with excitement.   Perhaps you shake your head or waggle your finger, for we ME-CFS patients are supposed to limit ourselves, do less, resist the urge to push the boundaries of our abilities to avoid problems.  But no, we always push the limits of what we can do -- often inadvertently --paying the price for our indulgences the next day.

I did ignore the first sign of fatigue.  My shopping cart was full of things to try on and I was not going to leave the store until I tried on those bargains!  It was, at most, 15 minutes from 1st sign to exit.  And how would I see that I was doing better if I didn't try to do more?

It is now nearly 24 hours since my standing orgy and, although I have spent most of the day in sedentary activities, I am still fairly functional.  But I must confess, I have no desire to go back to another clothing store!  It might be easier to diet and get back into my old jeans, than to buy new ones in a larger size :)  

Seriously, I am hoping that, as I get more active, my weight will return to its optimal level.  I will shed the rolls of abdominal fat that have hung around since I started taking Cortef  in late 2007 (hydrocortisone).  I am now, thankfully, for the past two weeks, off of cortisone and thyroid supplements.

What's in the week ahead?  A new gut protocol designed to clear out biofilms.  I will post about this soon.


  1. So happy, and inspired to read about your improvement Janis! :D
    Fingers crossed the upwards trend continues.

    Looking forward to reading about your Biofilm protocol because I need to tackle those...difficult to tackle things myself!!

    Have another GREAT week :)

  2. Awesome Janis. Your story gives me a lot of hope, especially because OI has been my archnemesis as well. Glad you decided to stick with treatment. Hopefully a sign of things to come.

  3. Hi Janis

    what would you put the improvement in orthostatis tachycardia down to, or would you say it was down to everything you have done? OI is my nightmare too - I can cope with the other symptoms but would dearly love to be shot of this! Congrats on your improvement.




Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at 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.