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

Recap: You Did It!

Under the Dragon!

 

There are so many parallels between having a chronic illness and being imprisoned. –Fiona Martin, journalist visiting from Sydney, Australia who became my friend on Alcatraz Island.

I am joyfully celebrating publishing two of the thirty intended posts for the Health Activist Writer’s Month Challenge (HAWMC) 2015. Here’s why:

First of all, that’s two posts more than I wrote for HAWMC (pronounced HAH-mick) 2014.

Secondly, I have a gung-ho habit of pushing beyond my limits in a way that interferes with my healing. So this year, I promised myself that I would find a way to participate gently, within my limits, and sustainably. Days 1 to 10 of this challenge went by without any submissions from me. I began to day dream about doing the whole blog challenge in one day. It was very hard to give up my Mega-Type-A-Overachieving ways!  Continue reading

Day 12: Day of Rest

Kick your feet up! What is your ideal day in? When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself? #HAWMC

 

Day of Rest

In the middle of writing my post for day 11 of this blog challenge, I managed to stub my toe so badly that the nurse I called insisted I go to the emergency room. X-rays of my foot were taken at UCSF and they confirmed that my little toe was broken. My poor toe was taped to the next one and I was fitted with an orthopedic shoe which I must wear for the next few weeks if I want my toe to heal properly. I was also instructed to ice my foot – which has a lovely black and blue area surrounding my toe – every couple of hours and keep my foot elevated above my heart even when I’m sleeping. (I currently have my foot on my desk as I write this. Thank you yoga!)  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