“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Sunday, July 31, 2011


As I'm trying to navigate the latest changes in my health, I look for patterns that help me manage my time and energy the best I can.  So here's what I have figured out right now.

I have an energy window from about 10 am to 7 pm where I feel pretty good.  12 to 3 pm are my very best hours.  I try to schedule most of my activities for this magic window of time.

In addition, I'm finding that I have an activity threshold.  This is where I'm learning.  I can tolerate an activity for a certain period of time.  My body is very clear in warning me when I start to cross that threshold.  The first thing I notice is that my cognition begins to wane.  Next, my eyes begin to twitch, and the more stress, the more I twitch.  Finally, if I've really pushed it, then I have muscle weakness and shaking.

My goal these days is to discover my activity threshold.  In my excitement over my new-found energy, I have a tendency to try something and ignore my body's signals that I'm overdoing it.  Although I bounce back and recuperate faster than I did before, I'm sure that the bouncing back and forth can't be good for me.  I can only imagine that staying within my activity threshold would help me heal even faster.

Thursday, July 28, 2011

XMRV Treatment: Five Months

I have been on ARVs (anti-retrovirals) for five months now, and I have experienced no side effects.  I continue to see a steady improvement in my health.  I would say that I have gone from about 20-25% at my lowest in February to about 35% now.

The greatest improvement has been in the symptom of fatigue.  It used to weigh on me like a suit of weights, making every movement and activity feel so much more difficult than normal.  The lifting is like the sun breaking through the fog, and it has had a huge impact on my overall mood.  It's been better than any anti-depressant I've ever tried.

My pain has been lessening as well.  It's hard to tell if my cognition is improving.  Sometimes I think it is, but it is the first thing to go when I overdo it.

One challenge I face as I start feeling a little better is which activity to add to my life.  There's a whole list of things that I want to do, that I should do, that I once dreamed of doing.  I haven't had to prioritize in a long time.  Everything was off the table before, and I chose my activities based solely on necessity and urgency. 

Suddenly, I have choices in front of me.  And each day I seem to choose a different combination based on my whims.  One day, I spent a little individual time with each of my kids.  One day, I went to a water polo tournament (about two hours).  Another, I had friends over to swim.  And another, I went to a party at a friends house.  See?  One or two "big" days a week, and the rest of the time I'm recovering or preparing for it.  I'm not sure I'm adjusting to my new healthier me very well.

I feel like I have found the perfect regimen for me.  I have the ARVs, which I believe are stopping the disease.  I feel like my body is broken, and that the essential oils and supplements that I'm taking are helping to repair it.  And I am able to exercise in the pool most days, which I feel is strengthening my body.

I will write a new post soon about the essential oils I'm taking, because I love them.  It's the first time that I've found something that helps with my symptoms.