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

April 13, 2009

It’s only been five and a half years since we closed up Ncubator.com. That seems hard to believe, because it feels like more than a lifetime ago. 

At that time, most of our kids were still teenagers. And I hadn’t hit fifty yet. 

But I was falling further and further under the spell of Chronic Fatigue Syndrome and was facing the hard fact that I couldn’t do all this stuff.

I couldn’t manage Ncubator.com, writing, running forums, emailing people, and all the other things I loved so much. 

We had to shut down Ncubator.com and it was a hard loss.

The fact that it was our own decision, the fact that nobody wanted us to close down and alot of people tried to persuade us to stay — did not lessen the pain of loss. But we knew it had to be done. 

And so began a new phase of sickness for me, and a new phase of caretaking for Al. 

I went from being very connected to people in my town, my church, my homeschool group, and our website, to being very alone a lot of the time.

Had to be. I couldn’t be around people very long before exhaustion and psychedelic nervous system messages were bending my brain for me.

I would have to go to bed. I did not answer phone calls nor return them. For years. This mainframe could not sustain that type of activity. It would instead go very wonky and then quit.

Laying down. Unconsciousness. That was the order of the day. 

But here I am! Lordy Lordy. Here. I. Am.

April 8, 2009

I am an intensely private person. And I’m a person who feels a strong need for connection, for community. 

I am also a person who has been chronically ill for many years.

I’ve lost touch with most of the people I used to know. And I have grown away from the interests I used to share with my old friends. 

I have become healthy enough recently to be able to look for friendship and connections again.

But … That is easier said than done, I guess.

I’m not particularly shy but I am at a loss as to where to begin.

I have a MySpace page which I have visited and stared at a dozen times or more, each time determined to write something. And each time … I am at a loss… I really know no one outside of my family these days. 

Where, and how, to begin? 

In the old days this would be a cinch. I had a website with many writers and many readers, and many online friends and associates. But things have changed so much for me these past years. 

If I were outside a room, a party, a gathering, at least I could just wander in and begin, speak to this one, or that one, develop a conversation, a relationship. But on something like MySpace or Facebook … well, I don’t have friends to contact, so nothing happens. Nothing at all. 

So. Now what? 

I’ve started a website (or rather, my husband has started one for me). It is an offshoot of the one we used to own and run. It will be a very different site from the original.

It will be … about me. It will be a place to talk about what it’s like to have Chronic Fatigue Syndrome for years, and what it’s like to slowly recover from it. It may be a place to talk about some of my hobbies — I’m really into knitting right now. 

I guess I don’t have to have a clear idea of what to do. When in doubt … start writing…