5 Challenges. 5 Small Victories.

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I find that the most difficult aspects of dealing with CFS are almost impossible to articulate. That’s what makes them so challenging…

1 . Doctors and friends only see me when I’m at my best. They don’t see me when I’m holed up at home unable to go out. So it’s difficult for them to understand how serious my condition is.

2. You need your brain to solve this problem but you can’t quite access your brain.

3. Like any crisis, CFS is tough on the relationships in your life. But the added complexity of being in a misunderstood crisis seems to bring the worst out in some people. I call them Chronic Fatigue bullies.  Continue reading

Professional Organizer Meets Chronic Fatigue!

Welcome to the first Realitynibs.com podcast!

Please click image or here to listen to this podcast.

“As children we’re often pushed by our parents and teachers and with good reason. Like mother earth … they want us to fly. And it can be difficult to understand when someone does not need a push, they’ve developed invisible limitations.”

Margaret Lukens helped me a lot during the first few years of my dealing with Chronic Fatigue and Fibromyalgia. For most of that time, I simply didn’t know what was wrong with me. In this first Realitynibs.com podcast, she had many insightful things to say about handling chronic illness both from the patient’s point of view and from the perspective of friends and relatives. It was nice to have a good laugh about things that had been quite serious when they took place! Continue reading

Medical, Social Misunderstanding of Chronic Fatigue & Fibromyalgia

Or, Diagnosis: Epilogue

I listened in horror to my voicemail.  Somehow, it had recorded a conversation between my father and a friend of his. The incisions on my tummy had only just become painless in September 2005. But no longer. Apparently, my body couldn’t take listening to less than flattering words from my own parent.

Later his friend tried to justify my dad’s behavior. “Devin” had expressed anger because my father was nowhere to be found while his daughter prepared for, then underwent, major surgery. Father was only reacting to that anger. “At any point in all this, did he ask how I am?” I inquired. Silence. Continue reading

Ask for What You Want

In my opinion, the first treatment step for Chronic Fatigue Syndrome and/or Fibromyalgia should be telling the patient to read this essay. Maybe it should be the first step in response to any human condition, from love to fear. It is reprinted here by permission of Jacob Teitelbaum, M.D., who published it in his book From Fatigued to Fantastic!

Ask for What You Want

by Bren Jacobson

Man is born free, but everywhere he is in chains.

–Jean Jacques Rousseau

As a counselor for the past thirty-five years, I have worked with many, many people who have overcome chronic fatigue syndrome and fibromyalgia. Through this experience, I have come to the conclusion that enlisting the aid of someone who can see the situation in a more detached and objective way is one of the quickest ways you can find your way out of the maze of CFS/FMS. Just treating the body without bringing the mind, emotions, and spirit into balance is, at best, a partial solution and often only a temporary one. Enlisting the aid of a guide or counselor, meanwhile, can help you figure out what you want and how to most effectively express those desires so as to enlist the help of others. This is not because one is broken and needs to be fixed, but because it is a shortcut to returning to a healthy and vital life and it enriches one’s life and relationships. Continue reading

What Just Happened?

“You don’t look sick.”

The woman who uttered those words to me had cancer that had spread. Now we’d met in a residential clinic both trying to get our lives back.

There was one other person at the dining table and there may have been more people in the room. I watched as her words seemed to hang in the air inviting me into a battle of wills. Continue reading