Mary Schweitzer

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Mental "Self-Help" and CFIDS

How do you talk about mental "self-help" without descending to the level of "if you THINK like a well person, you will BE a well person"?

(Sort of reminds you of The Music Man, when the con artist band director came into town with the "Think Method" -- the players would "practice" their nonexistent instruments by "thinking" they were playing.)

When a male doctor says you could get better by changing your perception of pain, you might try kneeing him in the balls and then ask him how his perception of pain is.

Back to reality: my doctor practices a type of behavior adjustment therapy that makes sense and RESPECTS the degree to which we are really sick. That is, you try to keep track of your activities and crashes, and learn what it is that sends you into a downward spiral or a crash. If you can find your upper bound activity level -- that is, the activity levvel that you can generally sustain day to day without bringing on a crash, then you live within that constraint and you can regain a sense of independence and control over your body and the disease.

Every once in a while you push the envelope to see if you've improved any -- usually it happens because there's something you want to do. so I go to Florida, do more things than usual, see what makes me crash (if anything). Well, I did crash. But I did find out that I can do A LOT if I am in an electric motor scooter, and I can also ride pretty long distances in the car if I use the backseat and a pillow and lie down the whole way. Conversely, the times I accidentally had to walk further than I had planned brought on a retaliation the next day -- I did a lot of unwilling and unintentional walking Wednesday, and Thursday I was in a lot of pain and spent the whole day in bed. (But that was okay -- I had planned that day "off," so to speak.)

In other words -- the doctors who would have you "will" yourself to be better by pretending you're not really that sick are absolutely wrong. It's like asking someone with a broken leg to walk without a limp. I think when they are talking about perceptions of pain, they mean their own perception of your pain, and it makes them uncomfortable to have to realize how much pain/discomfort/illness you sustain every day. So they want you to pretend that you are not really that sick, which will make THEM feel better.

As opposed to my own doctor, Marsha Wallace in Washington, who has said (and I am so grateful for that) publicly that patients with CFIDS and fibromyalgia are the bravest people she knows.

Now, WITHIN those limits imposed by our serious physiological illness, if you can find ways to -- as another doctor put it -- to THRIVE, to STILL have a life -- that's good for you. That has to make you better.

But the process starts with recognizing your limits, accepting them, living within them -- and then learning to enjoy and appreciate life in spite of them. (If you go into remission, you'll find out.)

Which is why Internet has been a godsend for me. Here, I am not an invalid, somebody who makes other people uncomfortable. I am just ... me. Surrounded by other "just me"'s for whom I have respect and affection. Being able to be honest about my life, not having to hide it, to pretend I'm okay when I'm not -- and then to move on -- THIS is healthy.

© Mary Schweitzer, 1998

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