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 …

Friday, May 7, 2010

My son Jesse and I went to my mom’s for an early Mother’s Day visit this afternoon.

Though we only live a three-minute drive away from her, this is the first time since around Christmas that Jesse has been able to make this trip.

I have been over to see her a few times since the New Year, but only a couple of times.

It has been probably about two months since I’ve been to her house.

Jesse and I both have Chronic Fatigue Syndrome. We are both recovering at our own rates.

Each of us has different symptoms. But there is a core commonality to our lack of stamina, brain fog, and neurological disturbances.

In a way, it’s good that there are two of us. We understand each other in ways that most people can’t.

We spent an hour with my mother today. Not a very long visit, and not what we used to do in the days before we were ill. We used to spend the whole afternoon, pushing into dinner hour.

But about an hour is about what Jesse can handle before he starts to deteriorate, and that’s about the limit unless we want him to have to spend the rest of the day flattened in bed afterward.

Which of course, we don’t want. So, an hour it is.

It was a nice visit. We shot the breeze, had a few laughs. Exchanged Mother’s Day gifts. And then it was time to be on our way.

Not too long after we got home, it was time for both of us to head to our rooms to lay down and rest from the exertions of the day.

This is what special occasions look like, on a good day, in a household with CFS.