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

May 16, 2009 

I guess I overstepped myself again. This past week, I’ve had to do a LOT of resting.

I’ve even gone back to a nap in the late mornings or early afternoons. I’ll be reading a book on the couch or on my bed, and start nodding off. 

Because I am stubborn and mulish and don’t LIKE going to bed, I try to hang in there.

Grab the book I’ve almost dropped on the floor, clap my hand on the open pages before my book closes on me, lift my head and give it a shake one more time, then another and another until — okay I can take a hint. (Sort of.)

My body is telling me very clearly it is time to lay it down and catch some z’s whether I like it or not. 

Went back to bed at 11:30 a.m. today, slept after awhile. Got up at 1 p.m. Did I feel better when I woke up?

The answer to that question for someone with CFS is … complicated. Yes and no. That is to say, yes I was less tired . But no I didn’t feel better. Sorry, that’s the clearest I can get. 

Still, last week was a good week. Ncubator was a week old and looking good to my eyes. I learned how to add on to the site by myself and that gives me greater creativity and flexibility so that’s very cool. 

I posted an article about my mom, on Ncubator and on EmpowHer.com for Mother’s Day, and had the pleasure of showing it to her on the net. I was at her house on Mothers Day, and that was my gift for her, with a little basket of raspberries to sweeten the deal. 

Later that day, our son came over to celebrate Mothers day with us.

Last week my brother from Toronto came to visit us. He stayed for a few hours, and had a chance to visit with everyone. It was a great visit, though I was pie-eyed at the end of it.

My face was getting numb and I was venturing to speak less and less often as I couldn’t trust my words to come out properly and my thoughts would suddenly drop down a trap-door never to be heard from again. 

Went right to bed after that deal for an hour or so. Rested up enough then to make dinner. I was starving! 

Which reminds me — for years, I didn’t get hungry. I knew to go get something to eat because of what time it was, or because I was getting numb in the head and vibrating. But I didn’t get hungry.

Well, I have started getting hungry again and I find — it’s a real pain in the neck. But it’s an encouraging sign of improvement too.

May 8, 2009 

Today for the first time in a while, I had a nap in the afternoon. 

I’m really trying to balance my new-found energy and activity on the net, with getting adequate rest and regeneration. 

Man, it’s hard. But worth it. 

This time last year, I had just stepped up to a new energy level. I no longer needed a morning nap of 2 hours. 

I “only” had to lay down for 2 to 3 hours in the afternoon.

Then after dinner, I would lay down in bed with a book for the rest of the evening.

 This was a great breakthrough at that time. 

These days, I try to have some quiet time for an hour or so in the afternoon, but it’s normal to be able to be up in the evenings. Sometimes I’ll watch TV with Al in the living room, sometimes I write emails and work on the net for 3 to 4 hours. 

I sleep like a regular person all night and wake up feeling only half-wonky for the first hour or so, and then I’m usually up for running some errands or getting some shopping done. And I am NOT exhausted when I come home (usually). 

THAT is a blessed change.

May 5, 2009 

Last night, I wrote some emails, and tweaked Ncubator, created some new pages, put up a new article.

By 9 p.m. I was having neurological fireworks, tingling and vibrating, brain slowed way down.

I made myself back away from the laptop, climb on my bed, and pick up a book for half an hour.

Monitored my remaining symptoms — still not so good — read for another half hour. Monitored — ah, much better by 10 p.m. 

I cautiously approached the laptop, opened it, and laid hands upon it. So I was a little careful but I know I overdid it between 10 p.m. and midnight.

Alright, I was still at it at midnight, so I guess I REALLY overdid it by 1 a.m. when I ran out of ideas … and ran out of steam … 

Today I woke up feeling spacey and shakey. I know it’s from overdoing on the computer yesterday. But I was having SUCH a good time! 

If I want to continue to have a good time though … 

So I went to bed and read in the late morning and early afternoon, something I don’t normally need to do anymore.

I thought about going uptown, decided there wasn’t anything that had to be done and it can all wait for a day. Or so. 

Al wrestled with the internet all morning and came out the victor, with a new email address for me — editor@ncubator.ca.

Ahhhhhhh. That was my name for five years, B.C. (before my crash). It was “.com” back then, and it is “.ca” now … doesn’t feel any different though.

Feels good. Feels like coming home.

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…