Tuesday, May 17, 2011

Chronicling chronic fatigue

What a whirlwind for me yesterday.

The writers' conference was really great for me in so many ways. I spoke to authors, publishers, mentors and writers of all kinds. I got feedback. Boy, did I get feedback. It ran the gamut from "blog books don't sell", "people don't want these type of detailed medical stories", and "you have so much promise as a writer and your material and story needs to get out". Interesting.

The publisher who is interested in signing me on a contract is a lovely lady, and we had a good meeting together. I am now expecting the contract to come in email, and I'll look it over and learn about what it means for me to work with them. It all feels very positive. One thing I want to know is if I'd get an editor with whom I can work closely. I am new at all this, and need professional guidance.

It's emotionally draining to live in the "future" of my book. That will happen, with Gd's help. It *is* happening. But here, on my blog, I get to still live in my one-day-at-a-time comfort zone, right?

I got a lot of "wow, you look great. You don't look like all the stuff you've been through". To that I say "you don't live with me", and we both laugh.

As expected, today I am dealing with the price of having had a long day out of town. I came home last night with pain, limping my way into the house. My sleep was fitful and heavy with dreams. I woke many times with my heart speeding. I got out of bed because of the neck and shoulder pain. Needless to say, like the day after so many times I've had travel days, I have been wiped out and in bed all day. I really resent that the price is so big, an entire day in bed. Sometimes even more. I know resentment doesn't get anyone anywhere, so I work on it. My lot, embrace it. Yeah, RIGHT. OK, maybe not embrace. I just have to live with it.

It is seeming more and more that what I am actually trying to live with is that distasteful "diagnosis" (which seems to me an un-diagnosis) called "Chronic Fatigue Syndrome" (CFS). The Mayo Clinic website has a list of symptoms for CFS, and I could check all of them... almost all. Here is that list: 

Primary signs and symptoms
Chronic fatigue syndrome has eight official symptoms, plus the central symptom that gives the condition its name:
  • Fatigue
  • Loss of memory or concentration
  • Sore throat
  • Painful and mildly enlarged lymph nodes in your neck or armpits
  • Unexplained muscle pain
  • Pain that moves from one joint to another without swelling or redness
  • Headache of a new type, pattern or severity
  • Unrefreshing sleep
  • Extreme exhaustion lasting more than 24 hours after physical or mental exercise
Yes, I often have a sore throat.
Memory and concentration have had a huge plunge in the past year.
I don't have traveling pain, but the neck & shoulder pain popped up with no apparent reason. I will do the MRI to see if any underlying cause can be detected, though, but I honestly believe that it's all here. What can be done about it to deal with life, that is the question.
That is the question. It boils down to quality of life.

For a few years now, it's been boiling down to quality of life.
But can I really blame this on the NF?
Did I have an ideal quality of life beforehand, working two demanding careers? Maybe I felt that what I was doing in those careers was very quality work, but my *kids* certainly didn't have quality mommy time in their life.
Now they have me lots more, Baruch Hashem.
Now I want health. I want to be on my feet for the better part of the day and feel healthy and strong enough.
That is my definition of quality of life, and that I did have before NF.

I gotta put this computer away now. I feel really sick and fevery.


  1. Thanks for posting such useful information. In addition to the pain relief brought about by the chiropractic care for back pain, the doctor may also help you to find relief from headaches and other joint pain.

    Head aches Sydney

  2. wishing you all the best and a complete refua shlaima! cheering you on! rochel.