Sunday, May 10, 2009

I'M FINE (what it really means)

Most people don't really want to hear the truth when they ask "how are you?" so you come up with a vague answer like "OK" or "pretty well, considering" or "better than 2 years ago".
I've reached the point where I can say "fine" most days and mean it.  Please don't think that means I'm 100% back to health and will be returning to my full-time career as soon as I can find a job.
Here's what I really mean:
Having finally gotten the right pills that allow me to sleep more than an hour or two at a time, I now wake up feeling like a normal person.  This is a vast improvement over years of feeling as tired as when I went to bed because I'd gotten little or no sleep, and what sleep I'd gotten was poor quality.
Don't be confused into thinking that because I feel normal when I wake up, I remain normal all day. On bad days, a mere 5 minutes of activity is enough to make me stop feeling normal and remind me that I'm still sick.
Getting 4-6 hours of sleep most nights (as opposed to the good old days when I was lucky to get 2) has increased the amount of daily activity I am capable of doing, so that it is now possible to stay within my limits, as opposed to when I was getting almost no sleep and even 3 trips a day to the kitchen for meals was exceeding the amount of energy I had available and thus making me worse on a daily basis.
If you see me out and about, that means it's a good day.  I don't always feel that good.  A few weeks ago, we spent several hours running errands, just to get everything done while the weather was nice; the next day, I looked and felt sick.  For logical reasons, you aren't going to see me out and about on bad days, so unless you come to my house, you will never see what a bad day looks like.  They are still there, you just don't see them.
As long as I stay within my Daily Activity Limit, and practice pacing (work a little, rest a little interspersed throughout the day), I continue to feel pretty good.  I don't feel as good when something causes me to exceed my Daily Activity Limit.  By no means can I match the total activity of a healthy person; that means that although I look good and say I feel good, I'm still not employable.
At this point, I am able to live a relatively normal lifestyle; I just can't accomplish as much in a day as someone with full stamina.  But I am able to run errands, take care of household chores, cook, do a little light cleaning (some tasks are physically beyond me), watch TV, knit, read books...  I may spend a lot of time "on" the bed, because then it's easier to lie down when I need to, but I'm no longer spending most of my time "in bed", too exhausted and/or in too much pain to concentrate on a book or a movie.
While, certainly, there are some CFS patients who are so sick they are entirely bedridden, for most of us, we are at least semi-functional.  Being bedridden is not, and never has been, one of the official diagnostic criteria, though there have always been doctors who refuse to diagnose CFS unless your husband has to carry you into the office because you're too weak to walk (and some who won't even diagnose it then!).
I feel good because I'm able to stop and lie down when I hit my limit.  As long as I pay attention to my limits, take naps after overdoing, etc., I can say I feel "fine", but "fine" should not be confused with "well". 

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