Thursday, April 06, 2006

Hey, Who's In Charge Here Anyway - Part 1

A few weeks ago there was a post on Co-Cure that linked to this site http://www.recoveryfromcfs.org/ It's about a guy who'd read about another guy who had recovered from CFS and decided to try some of the same things. Guy number 2 did get better. As you would probably have guessed after 26 yrs. of illness I'm not holding out much hope for cure, but hey, even being able to get a bit better would be an improvement huh? And so I read through the site and have been pondering ever since.

Mr. Campbell begins by pointing that he only had a moderate case of CFS and had no other conditions, ie no MCS, no FMS and that he had none of the typical stressers the majority of us have, ie kids, financial problems, spouse. And he wisely counsels that what worked for him won't work for everyone. Smart man. We won't throw any rotten bananas his direction.

I did find a few things on the site which echoed in my head because they were things I had noted myself and had been mulling over already.. and hey, they sounded sane! The first point was that he accepted the fact that he was ill. Now that may sound like a "no duh" thing to some of you but it really is something most of us deal with. Most of us were fairly healthy before this beast struck and took us down rather quickly. But because the symptoms are so strange yet so common in ways (sore throats, swollen glands, flu like symptoms and fatigue) everyone expects it to 'go away' fairly soon, after all those sorts of things just don't last forever, right?! Even mono comes to an end... well, usually...

And so in accepting the fact that one truly IS ill, has a real and not imaginary illness and one that is not known to go away with any magic pill or treatment we SHOULD stop pushing ourselves to 'carry on as usual' - keep pushing to accomplish the things we've always done with ease... like working 50 hrs a week while raising 3 kids and keeping house and paying bills and entertaining friends and keeping hubby happy. No indeedie! Sick people don't do all that... well, unless they have one of these UFO type illnesses - meaning those that the public at large believe is as probable as being abducted by an alien mothership. Sick people take care of themselves. They pamper themselves a bit. They address their symptoms best they can AND they rest! Oh that guilt inducing word, rest!

You ask anyone who has CFS if they lay in bed during the day and you'll probably get punched in the nose. The reason is that question is typically an accusation. They also will respond with the old "no duh! it isn't called chronic FATIGUE syndrome for nothing!" reaction and then continue to try to explain to you in our limited English vocabulary that the fatigue of CFS is NOTHING like the fatigue you think you have after a day's work! It's not like the fatigue you have after too many nights of little sleep. It's closer to, yet not quite the same as the fatigue you get when you have the full fledged influenza type flu NOT 'the flu'. And so myself like every other PWC will admit that yes indeed we do lay down during the day. How much depends on the day.

But Bruce Campbell suggests that merely laying down when you're already wiped out won't cut it. He suggests that we need to treat our bodies like any other person with any other type of illness would by allowing our bodies the rest it needs to heal... like resting BEFORE you're wiped out. Regularly resting. Planned rests. Not laying there on laptop typing away for hours while talking on the phone and watching Independence Day at the same time kind of rest. But peaceful, eye's closed, brain quieted, body resting type of rest - restorative rest.

Now it occurred to me that I get little of that. Ya, I lay down a lot. Heck for the last year and a half I've been practically living in my bed. ... But I haven't really been resting. I've been collapsed. Wiped out. Whipped. Exhausted. (oh how limited the English dictionary is!). But the whole time I've been fussing about what I didn't get done that day. Stewing over the mounting bills and things wearing out. Wondering if my daughter would forget what I looked like if i failed to help her out every five minutes or if my husband would assume I was molting. Nope, that hasn't been rest. It's been work.

In retrospect I've done very little resting in all the years I've been ill though I have spent a good deal of time laying down.

This all made sense to me. I've had some very bad spells in the past followed by better times. I have to remind myself of that fact when I'm feeling low. It gets me through the valleys of this illness. I will admit however, that this last year and a half brought amnesia. I could barely recall having any 'better days' since I became ill. It seemed like one very long wasteland of life that was on the downhill slide with little hint that things would level off again let alone improve. Nothing I did seemed to matter much. During this time I noticed that the less I could do the more I felt pushed to DO something. DO DO DO ! It's surprising how many times we need to be reminded that we ARE ill and accept that fact instead of continuing to think we must do what everyone else out there is doing - or rather what we think they are doing.

REST. Yup, I need some of that.

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