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

Wednesday, October 7, 2009

The weather has turned cooler and overcast these days. Summer is over.
 
It seems every year that in the change of seasons from summer to fall, I experience some downturn. Some years have been worse than others. This fall so far has been, I think, the gentlest one in over a decade.
 
I haven’t gone out even for a walk, in over a week. That has something to do with windy, rainy weather. It also has to do with a lower level of energy. And a recent reminder of how much I don’t like to crash. So I am playing it safe at present.
 
Unlike other autumns, though, I feel some … contentment with this quieter life. I don’t really feel a desire to go uptown, for instance. To do the grocery shopping. To scan the streets for someone I know.
 
The loneliness is not nearly what it was such a short time ago. That has everything to do with having formed friendships on the net, and with having some work online as well.
 
I no longer fear that if I disappeared, nobody would notice. I no longer believe that if I were to vanish, nobody would come to look for me.
 
This is a source of contentment for me.

Saturday, September 26, 2009   
 
It’s my birthday today. I am now 54 years old.
 
And still recovering from CFS. Both in the long term (17 years and counting) and in the short term, from a crash that started about a month ago.
 
I had been hoping that with better health this year, that this couldn’t happen anymore. And now I know. It not only can happen, it can usher in all the old symptoms with all the old intensity.
 
Horrifying. Stopped my life in its tracks once again.
 
But the difference this time, has been that I have had breaks in the symptoms each day, sometimes only an hour here or there, other times I’m good most of the day, just get worn out and fragmented after too much activity and not enough rest.

“Too much” just happens to take a lot less than it did, and “not enough” means I need way more rest than I’ve been needing most of this year.
 
So! I have learned a valuable lesson once more. It is still possible to fall off of this cliff. I will try to be more aware and respectful of my very real limits. Again.
 
For the present, I am planning on enjoying my 54th birthday.

Saturday, September 12, 2009

September 3rd marked Ncubator’s 4 month milestone. And then I had a crash.

We chronics use this word to indicate an ugly relapse into old symptoms, lasting anywhere from a few days to a few weeks … to months … to years … depending on the crash.

You never know till you come out of one, what severity or length of recovery time you’re looking at.

I guess I would term this one a bounce, rather than a crash. Symptoms will lift considerably for awhile, say a few hours, and then descend to crush once again.

The upswings are lasting longer. I have cut way back on activity for now, even my beloved writing.

Live to rise up another day.

Sunday, August 16, 2009

There is an alchemy that comes about in relationship to others that cannot come into existence in isolation. 

Can you picture a hammock tied to only one tree?

Thursday, August 13, 2009

I have 4 new articles up this week, 2 on Ncubator.ca and 2 on EmpowHer.com.

On Ncubator, they are “On Leaping Through the Portal” and “The Soothing Therapy of Knitting”.

On EmpowHer, they are “Chronic Fatigue Syndrome Mimics Stroke” and “Top Ten List for Recovery From Chronic Fatigue Syndrome”.

I should learn how to hyperlink on here someday.

I have been in touch with some other women who write about their chronic lives. What a pleasure, it’s like having a little writers’ community. I have been loving it. How great to be able to share our lives once again.

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, August 3, 2009

 Happy Birthday, Ncubator.

You are three months old today.

What alot of change has come about in only three months! I don’t recognize my life. And I am … glad of it.

Saturday, August 1, 2009

I write to my imaginary friend, the one who is always there, who always wants to KNOW me. I write believing I can hear a response (my imaginary friend ALWAYS gives a response, lest I feel unloved or alone).

When I find indifference and lack of regard in the rest of the world, when I grow tired of standing with a gift in my hands, offered up to backs turned to me, and I and my gift are, once again, ignored as beneath interest …

Then I come here to write. Because here I have an audience, I have my imaginary friend.

Even if that audience is only me.

Friday, July 31, 2009

Some animals use echolocation to orient themselves. They emit calls to the world and listen for echoes from their surroundings.

This helps them determine where they are, where they are going, and what if anything is near.

Here is a poignant metaphor. We call out to find our place, to see if anyone is near, if anyone responds. A response helps us know where we are, where we are going, and whether or not we are alone.

For many with CFS, results of echolocation are bleak.

Too often they call out and find, there is no response.

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.