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

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.

Sunday, January 3, 2010

During the winter, CFS seems to close in on me in a way that was not happening during the warmer months.

I am not as ill as I was last winter, but the day to day habits of my life become more closed in and insular.

While I don’t have the distressing neurological symptoms from before, my energy level is lower. And I find that a certain … hibernation mode seems to be what comes naturally. I liken it to the flowers and trees that cease to bloom; the animals that go to their nests; even my cat spends more time in the house sleeping.

I try to view this as a time of rest, waiting for the renewal of spring. Conserving energy. Regenerating.

It is a bit frightening, as it feels at times like I am failing (waning, not losing) at life. The strides forward of last spring and summer are mostly put on hold for now. I don’t go out. I don’t have any desire to.

But I remind myself that this hibernation, the time spent in bed reading again — something I left behind last summer being so busy with other things — is from choice this time rather than necessity. It is so that I will have the needed energy for my freelance writing, for my friendships on the net, for my family.

And it is so that when the warm weather comes again, I will be ready for it …

I hope …

Monday, August 10, 2009

This virtual world has been a real education for me these past few months.

I have done a little writing for a few different sites at a penny a word. Learned something from each of them.

Last week I began actually working for EmpowHer.com, a great women’s health website. I had been contributing articles on CFS to this site over the past four months, and now I have the opportunity to do some freelancing for them.

After being so sick for so many years, and after only being back online for such a short time, this is like a dream come true.

Wow.

Only on the internet!

Monday, July 27, 2009

How does a wealthy man get, and stay, wealthy?
 
He doesn’t do it by spending everything he has.
 
Bingo, CFS’ers, Push-Crashers. All you really need to know about the role of rest and regeneration. In a nutshell.
 
If you keep spending your energy, … well, it’s gone, isn’t it.
 
It makes a difference this resting thing. This irritating going to bed thing. This laying back when you’re dying to get a-move on.
 
You’re presently living in a form of deficit and you need to get out of the red, into the black.

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…