Thursday, June 13, 2013

To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

 
"noting the need for pacing isn't uncommon advice – but the problem is that it needs to get to the newly diagnosed quickly. People who develop ME/CFS don't instinctively know that it's absolutely imperative that they stay within their energy envelope. Why should they? It's not something they've ever needed to do. Plus, it takes time to learn and to shift from that everything-is-normal state to the I-understand-my-limitations state."
 
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This would be THE #1 thing I'd ask doctors to tell a patient. 
 
Too many of them are still passing along the ill-begotten advice to "exercise your way back to health", which does more harm than good.  I definitely made myself worse by giving in to the outside pressure of what other people thought I "should" be doing.

The Post-Appointment Post, 2013, Part I | No Poster Girl

 

Dr. Cheney told us that the new office was saving him a substantial amount each month in practice costs. "Medicine," he said, deadpan, "is a very expensive hobby."

Wednesday, June 12, 2013

Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties



 
I got sick at 28, got diagnosed at 29, lived with limitations throughout my 30s, and lost my career in my early 40s.
 
People don't think of young people as having chronic illness -- oh, that's only something that happens to old people -- and don't understand the adjustments we have to make in order to get by in life.  I could pass for healthy at work, but when I got home, it was obvious that I was Not Well.
 
While other people were going out on weekends to hike and ski and kayak ... I was home trying to rest up enough to get through the next week of work.  Most weekends I didn't have energy to socialize.  Every expenditure of energy evenings and weekends had to be weighed against what it would cost me -- if I do this today, will I have to take Friday off work because I've "run out of gas"?

In the Kingdom of the Sick: An Interview with Laurie Edwards

 
"When patients are sick with symptoms that aren't easily managed or don't fit neatly into diagnostic boxes, this often opens up room for skepticism and doubt. I know this firsthand since it happened to me: when my lungs and immune system didn't respond the way doctors presumed they would, the doctors began to question me. Was I taking my medication properly? Was I just a stressed out, anxious college student and was that why I couldn't breathe? I was in the ICU with very low oxygen levels and these were the queries I received."
 
* * *
The first doctor I saw in 1987 refused to believe I was physically ill (despite me reporting fever, vomiting, diarrhea, and other objective symptoms).  He went through a long list of questions, eventually asking if I had any legal matters pending.  I did have one minor issue where my lawyer was trying to find and serve the respondent, but the law was 100% in my favor, it was in the hands of a top lawyer, and I was so unconcerned about it that I'd completely forgotten about it until he asked the question. 
 
Nonetheless, his reaction was "Aha! That's it! You have anxiety!" about something I wasn't worried about at all.  But it gave him a way to blame me, so that he wouldn't have to spend any more time thinking about what might be the problem.