High Functioning While Chronic

If I were to describe my condition I'd call it "high functioning while chronic."
Be advised, I am no longer a good example of the person ill with CFS. By normal standards, I am more like a slightly dull-witted, lazy good ol' boy who likes alot of siestas. While there are still many things I can't do, and many areas recovery hasn't begun to touch yet, I am largely ... functional.
I can go to the store, I can carry on a lucid conversation, I can count money (mostly). I dress myself, cook, do laundry. Generally I look pretty fair.
But don't be fooled. I am the tip of the CFS ice berg.
Some of the devastation I've been through personally is found all over this website. But the fact that I could write it, upload it to the net and then do it again, trumpets the fact that I am not any longer a representative that you can look at and say, Oh! I have some understanding now of CFS.
Sorry, you don't.
To find that representative, you need to go into the darkened bedrooms of the chronically ill who can't sit up without being overwhelmed with dizziness. Whose vision is so compromised, they can't read this article.
Seek out the tent cities of those so chemically sensitive they can't live indoors. The one-room apartments of those who can't afford anything better if they also want to eat because they can't work and there isn't decent disability for them -- and that's the lucky ones who get any disability.
Find the nice looking homes of chronics whose spouses work and can keep a decent standard of living going ... but mom -- or dad -- is bedridden. The kids only see them for brief times through the day and can't talk about anything heavy or even anything that just requires ... thinking. Spouse is lonely, worried and at sea as to how to help their beloved chronic. Because pretty much, there is no help out there.
There is no help out there.
I will say it again. There is no help out there.
Not from the governments and not from the media, not from the community groups that raise money for charities, and not from the medical community at large. There is a tiny handful of doctors who practice conventional medicine, and naturopaths, and other alternative practitioners, who are doing what they can.
Some of them go above and beyond the call of duty for their chronic patients out of compassion and mercy. But they are grossly outnumbered by the ones who believe we are lazy, neurotic or malingerers. And they are far outnumbered by the masses of the desperately ill who need help.
And besides, the desperately ill do not have the strength to go and see these people, even if they could afford it. They need help to come to them.
We have to find a way to help ourselves, as a chronic community. We can't wait any longer for the government or the medical community to make up their minds about whether we are worth the trouble. We will wait till we die.
So we high-functioning chronics need to focus on getting better so we can band together and do something to help the plight of the truly invisible, truly frail and truly helpless. Because we have each of us been there at least for a time.
And we can't just leave them there. And we certainly can't walk away kidding ourselves that anyone else is going to get them out.

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