A few months ago, I wrote a proposal for patronizing my recovery from Chronic Fatigue Syndrome. I had borrowed the idea from the art world. If an art patron can patronize an artist because they believe in the good his art sends out into the world, then a recovery patron can patronize my recovery because they believe in the good I’m going to accomplish by helping other CFS patients. I included details of my plans for using my experience to help others.
I feel strongly about helping other CFS patients because I have been quite shocked at how difficult it is to get properly diagnosed with CFS (took me two years, many take longer). It is even more difficult to recover – in fact many consider this impossible. When I realized that I had figured out how to recover from my unusually severe, paralyzing case of Chronic Fatigue Syndrome (a.k.a. Myalgic Encephalomyelitis or ME), I knew I had something useful and unique to offer other patients. Continue reading →
I began to panic as I looked at the Google Alerts webpage. I wanted to choose an alert that will help me stay on top of Realitynibs’ niche but I immediately felt overwhelmed by the possibility of being deluged with automatic email messages! What to do?
I needed a balance between quantity and quality. I could set alerts for the many names of Chronic Fatigue Syndrome. But as I thought back to the elevator pitch I wrote recently, I realized that my focus within the niche of CFS is demonstrating full recovery. So, I am most interested in the very latest understanding and any news or blogs concerned with that would likely mention the latest name proposed by the Institute of Medicine. Continue reading →
When Carlos Taylor decided to captain a crowdfund for my recovery, I gave him a big silver heart. He put it on a chain and wore it to work the next day. When a coworker asked him about it, he explained about his friend who is recovering from Chronic Fatigue Syndrome. She replied by telling him about Joey Tuan who had (almost?) recovered from the same condition and then started a forum called HealClick. I’ve been meaning to join ever since Carlos told me that story…
You may know that I’ve challenged myself to 30 posts by July 4. It’s my way of fighting for my freedom from Chronic Fatigue Syndrome and inviting you to join me by letting go of something in your life too! I’m using a template for this challenge called 31DBBB which stands for 31 Days to Build a Better Blog. As it turns out, day 9 asks me to join a forum. Aha! Continue reading →
One of many reasons might be that they were describing things I’ve had to figure out on my own in the midst of both medical misunderstanding and social isolation. So I began to wonder, how would I have told myself to pursue recovery given what I know today? Since my case has been unusually severe, I suspect that at least some of the advice that I’m about to give to my past self would be useful for many ME/CFS patients today. Continue reading →
I’ll never forget the day I added mobile compatibility to Realitynibs.com. You can install software packages called plugins into WordPress blogs (Realitynibs is a WordPress blog). I decided that one particular plugin was best for touch smartphones and another plugin for simpler mobiles. I even found an online phone simulator to test my interface for simpler mobiles!
I got into a zone and sat at my desk until it was all done a few hours later. Then I realized I was in trouble. I got up carefully, lay down on the floor and writhed in pain for quite a while… Continue reading →
Fifteen minutes into an afternoon rally in front of the Federal Building, Susan Kreutzer looked ready to drop. She sat down on a low wall for a while, letting her husband and half a dozen other protesters carry on while she recovered what precious little energy she could. –Erin Allday, “Chronic Fatigue Patients Protest Lack of Funding“, San Francisco Chronicle
I first became a fan of Karen Cripps’ when our respective blogs were listed on Dr. Jacob Teitelbaum’s Helpful Links page. There was a total of three blogs on the page so it was easy to notice my neighbors!
I received a message from Bola on Monday night where she was suddenly feeling a lot of doubt about initiating the Freedom Challenge because it included the possibility of helping her. This post is my response:
Ultimately you have to keep in mind that for the donor, helping you is helping the world become a better place. You were put on the earth for a God given purpose. Your purpose is much bigger than you are alone. Remind people that the reason you were born was to help them support that purpose.
In effect, you become the steward of their bigger purpose to serve. Demonstrate in your request that you are the best servant for this higher purpose. Continue reading →