When you're talking about Chronic Fatigue Syndrome, the word "progress" is not often spelled with a capital "P". That's because any progress is excruciatingly slow. If you've ever watched a bit of time-lapse photography encapsulating the growth in nature, you'll get the idea.
But progress with CFS is not like a flower opening over a period of hours or days. More like leaves budding, turning color, and falling off a tree. Over a period of years.
That, my friend, is slow.
I don't know why improvement, when it comes at all, is so slow. Aside from the heroic work being done by a few CFS champions determined to crack this thing, precious little research has been done on Chronic Fatigue Syndrome.
The reasoning seems to be, "Well we don't know what the problem is ... so we don't know where to look ... so I guess we won't."
Meantime, we sick ones muddle along as best we can. We employ metaphors, we follow hunches, we use a lot of trial and error. We guess a lot. And our health goes up and down. If we're lucky. The unlucky ones just stay down for years at a time.
They know what to expect each day but it's a hard way to live. I think they'd prefer the daily uncertainty we who show improvement endure.
One measure of progress is how far you can range from your bedroom. And how often you make that distance every day.
My tether used to stretch only from my bedroom to the adjoining bathroom. Some weeks later, it extended to my living room, but only once a day. Within two hours it was back to Ground Zero (my bedroom).
These days, I can travel as often as I want from my room to the kitchen or living room. Even better, I can stay there as long as I want. I can even go out. Listen, I can even drive a car. And when I get home I don't have to go straight to bed.
The tether has loosened, given me more leeway. But, if you'll pardon my mixing metaphors (we do that a lot too) the tether can be like a rubber band. Stretching, stirring up hope, and then --
Snap!
Back to Ground Zero once again. Who knows why.
And so the slow progression begins once again. First, there's the downtime, recuperating from the onslaught of CFS symptoms. Then the gradual, tentative testing of the tether. Can I venture out of bed today without ending up face down? Then, maybe try for the living room?
This cycle has repeated on me more times than I can (or care to) count.
But really, what other option is there?
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