Jody’s Blog . . . a life after chronic fatigue syndrome

Saturday, May 8, 2010

It’s not enough for me to let you know I have Chronic Fatigue Syndrome and I don’t feel good.

I want to give you details, about an astonishing variety of stultifying symptoms that are real life-stoppers.

And I want you to be haunted by a chronic with a face. If it’s me, well and good. If it’s someone else that’s fine too.

But somehow people have to be touched by this devastator and destroyer.

We are a huge part of the population, and yet nobody hears about us.

We have chronic blogging communities which is a good thing, because we need the contact. And within our small communities we share information with each other, friendship with each other … a world with each other.

But the outside world, the one you live in, never even hears of this condition. Like it’s not real. Unless you happen to know someone who has it but … it’s a mystery. Nobody understands it.

This is true. Nobody does understand it. We only know bit and pieces of things, that we try to make hang together as we grapple with it. We are doing a better job, getting more data than ever before.

But our media largely ignores us. Our medical community, researchers, funders, largely ignore us. Our communities largely ignore us.

So I am putting a face to this crippling disease. I am giving you an insider’s view of what it’s like to be bound and gagged year in and year out by illness.

Other chronic writers are doing the same thing. None of us will touch every one. But if enough of us do it, telling our stories, sharing our tragedies and our losses, some of it’s going to raise awareness with real people.

The people who read articles like this, who care about their own health and other people’s health and well-being.

And maybe eventually there will be enough people who have become aware of how our lives have been crushed and consumed, that they might make a difference with the institutions who don’t seem to care about us …. and so easily pass us by …

Saturday, September 12, 2009

September 3rd marked Ncubator’s 4 month milestone. And then I had a crash.

We chronics use this word to indicate an ugly relapse into old symptoms, lasting anywhere from a few days to a few weeks … to months … to years … depending on the crash.

You never know till you come out of one, what severity or length of recovery time you’re looking at.

I guess I would term this one a bounce, rather than a crash. Symptoms will lift considerably for awhile, say a few hours, and then descend to crush once again.

The upswings are lasting longer. I have cut way back on activity for now, even my beloved writing.

Live to rise up another day.