Key Resources for CFS Recovery

Solving my recovery puzzle has been a slog!

Yesterday I began reading “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness“. This was a report released in February 2015 by the Institute of Medicine which had been commissioned by the United States Government to examine the evidence base for ME/CFS. Merely getting through the report brief reduced me to hot tears and I’ve spent the past 24 hours wondering why.

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

Are You Reading from Mobile or Desktop?

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

What is Your Freedom?

Refraction @Large Catches the Sun

Do you have something you’re ready to let go from your life? If so, I hope you’ll consider taking the Realitynibs Freedom Challenge

While you ponder what image or words might effectively depict your freedom, I’d like you to know that I have challenged myself to 30 blog posts in the next six weeks, starting today (Memorial Day) and ending by July 4. This is terrifying because merely taking a shower uses up most of my energy for the day but I’m committed to getting through the next six weeks in a healthy, sustainable way. I’m going to have to be incredibly disciplined about pacing myself yet accepting imperfection. Yikes!

Here’s an elevator pitch I’ve written to get things started. What do you think?  Continue reading

What is Your Top Tip? #TopTipCFS

CFS is like this broken window pane which obstructs viewing but like the sculpture within, I am still there.

I can just see my former colleagues rolling their eyes if they read what I’m about to tell you: I have decided to give an interactive, live, online presentation about top tips for recovery from Chronic Fatigue Syndrome.

Something happened at Sun Microsystems one day that concerned me, and I told everybody that I would be part of the solution. Having identified the problem as insufficient understanding of the enterprise concept, I thought an event that discussed the true reality and meaning of “enterprise” for a corporation that sold software to enterprises might be a good idea. It seemed kind of obvious and silly at first. And I got lots of good-natured teasing. But what I intended as a small, department level idea ended up catching on and turning into a successful, company-wide event.

Well, something has happened in the medical world with respect to the treatment of CFS patients. Continue reading

Take the #GivingTuesday Challenge!

Giving Tuesday 2014

 

I have been working hard behind the scenes to return to Realitynibs and now it’s Giving Tuesday.

Have you heard of it? It comes once a year, after Black Friday and Cyber Monday. I know you want to thank me for keeping you on the cutting edge of social trends. You’re welcome!  Continue reading

Recap

Day 30 (April 30) – Recap

  • You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? OR
  • Describe your HAWMC experience in one word!

I have found this year’s blog challenge harder than last year because I put the added constraint on myself of doing it in a healthy manner! For example, I’m publishing this post on the evening of April 30 rather than staying up too late last night. But you should have seen what it took for me to accept that I was too tired to finish this on April 29…  Continue reading

Congratulations

Day 29 (April 29) – Congratulations

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

I was having a conversation with Doug Lisle, an evolutionary psychologist. “He’s going to think I’m a freak”, I thought to myself. But I decided to tell him what had just occurred to me anyway.

He was saying something about dreams and I told him that I often have these … not quite dreams, more like visions, halfway between being asleep and being awake.  Continue reading

Must Follow!

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Day 28 (April 28) – Must Follow!

Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

 

If I could recommend only one Facebook page for ME/CFS patients it would be that of the The Optimum Health Clinic. I mean, I transported myself to London from San Francisco so that I could benefit from their programs. You can’t get a bigger endorsement than that!

If you’re on your own either because there’s no ME/CFS doctor in your vicinity or because you’d like an in-depth understanding of your recovery, then my top recommendation for you would be Jacob Teitelbaum’s Facebook page. I think it’s the best approach for physical improvement (outside of diet).  Continue reading

Titles: Five Possible Books

Day 27 (April 27) – Titles

  • If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles.
  • What about your biography?
  1. I Am Alive!
  2. Losing a Decade, Gaining You
  3. The Blooming of Bola
  4. The Gift of ME: An Insistent Path to Wholeheartedness
  5. A Canary in Our Midst

Dear reader, which title do you like best?!

Pain-Free Pass

Things began to turn around just before dinner. Phew. That was really close…

The day before, I was proudly taking the bus from the Optimum Health Clinic back to my flat. It was early evening on a Saturday. But because it was December, the sun had set and it was completely dark outside. No matter. I had made it on the bus, and I knew that all I had to do was sit there until it got to Marble Arch. I didn’t even have to worry about the energy draining problem of figuring out which way to walk from the bus stop.

Taking the bus had been a goal since arriving in London in the Spring. I was feeling happy and proud because of my accomplishment! That is, until the bus driver announced that everybody had to get off. They were prematurely terminating the route because Oxford Street was so crowded with Christmas shoppers.  Continue reading