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.
Abundance
Sunday, July 31, 2011
Patterns
Posted by Shelli at 5:13 PM 7 comments
Labels: CFS, chronic fatigue, chronic illness, healing, pacing, XMRV
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.
Posted by Shelli at 1:41 PM 9 comments
Labels: CFS, chronic fatigue, chronic illness, life with CFS, living with CFS, treatments, XMRV