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

May 3, 2009

 Ncubator.ca is now up on the net. 

Al has taught me how to upload pages. More or less.

I still need a little help now and then but it is getting easier. 

I still need to take breaks, when my head fogs and my nerves vibrate.

A little rest goes a long way, though, these days.

Instead of having to go to bed for the afternoon, a half hour usually suffices. 

Note to self — Remember to listen to this fragile body and brain.

I used to have an old habit of going for broke, and ignoring fatigue, bent on meeting my goals and getting things done.

Don’t want to fall back into unhealthy habits, and lose the ground I’ve gained this past year. 

I will try to pace myself, and maintain the health I’ve regained.

May 1, 2009

 Alan and I got a step closer to having Ncubator ready to open its doors. I’m pretty excited. 

A certain balancing act is required. I get so intent upon writing, I could do it for hours. And I do it for hours. 

All the while I must keep in the back of my mind, that I do not want to burn out and crash.

And so I will make myself go and rest. Read a book. Wash some dishes. Knit a little on my latest project. 

My energy has been so good recently and I’m having so much fun, it’s easy to overdo.

Then I’ll feel the “body stone” sensations swirling and whirling, and feel my brain slow right down, and know I need to lay down awhile. 

I’m not much of a marathon runner anymore. Nor even much of a sprinter. But my strength and clarity are coming back, a bit more and a bit more.

Just don’t push, Jody. Let this thing happen in its own time.

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 12, 2009

It has been many years since I have written for my own website, Ncubator. I never expected to do it again, frankly.

That is, until a few days ago, when I was thinking about starting a blog or a website, so I could get serious about writing once more. 

And I thought, if the domain name is available, why couldn’t I get it and use it again?

And even if .com isn’t available, I could be happy with .ca or .net or … hmmmm … 

So here I am. Alan is invisibly keeping this show on the road as I know nothin’ about building websites and … I don’t even know enough about this stuff to be able to say WHAT he does. NO idea. I’m just glad he does it. 

So I feel like I’ve come back to an old home of mine. One I thought I’d never see again. And I feel like I am moving through the empty rooms, full to bursting with the anticipation of filling them again.

Not the same as before, differently, but, the shared history remains. And maybe, after I begin the re-furnishing, and moving back in, maybe old friends might even drop by.

And, okay, it’s been awhile, so maybe I can’t expect many old friends but … I can hope to make some new friends in my old stomping grounds. 

Welcome me back, Ncubator. It has been an extraordinary journey.

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…