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

Thursday, July 29, 2010

 
July has been a red letter month for me.

I have gone bike-riding three times this month. I don’t know when I was last on a bike, it has to have been years ago.

I couldn’t ride a bike during the months and years when I had severe pain in my neck, shoulders, arms and hands.

I couldn’t ride when my feet and knees went on me.

And I couldn’t ride when I had vertigo. I’d have fallen off. Or I’d have had worse symptoms set off from the herculean effort and energy expanded just keeping my balance.

But hey. Now I can ride a bike!

The first foray was only around the block. I waited two days to be sure there were no serious repercussions. Arms a bit sore, but that was to be expected.

So I got back on the bike again and went down to a little spot by the water and panted for awhile on a bench. Felt the breeze, watched the waves. 

Felt alive in a way that hasn’t happened much in some years now.

My last trip (so far) was down a bike trail or greenway near my place. At the far end of it is my mother’s house. I wanted to find out how long it would take to ride that trail to her place. First experiment took me 15 minutes down the trail and then back home.

I am confident that I’ll be able to ride to my mother’s house before the summer is over.

Saturday, May 1, 2010

I’d like to thank Jodi of the blog Surprising ME for laying the Happiness Award on me. That makes me … happy.

These are the rules that go along with the award:

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy.
3.) Pass this award onto other bloggers and inform the winners.

So. Here are 10 things that make me happy. They are absolutely not in any kind of order, except for the fact that the first one is about the beginning of the day and the last one is about the end of the day.

1. Being able to check my email and do some writing on my laptop in bed in the mornings. I love that I can do this especially because it means I don’t have the severe CFS morning symptoms that I used to for many years.

2. Laying out in the sunshine with a book by Diana Gabaldon.

3. Watching a movie with my husband Al while we’re drinking coffee with cream.

4. Finishing a knitting project.

5. Freelancing and being paid for writing.

6. I love taking fish oil. Don’t laugh, I really do. Used to hate it. Now when I take it I can FEEL that it’s good for me.

7. Being able to drive a car again and running errands on my own.

8. Spending time with email friends and on Phoenix Rising’s ME/CFS Forums.

9. Having our kids from out of town come to visit and share a great meal.

10. Ending the day with the love of my life, Alan.

I would like to pass this Happiness Award on to Lisa of Sundog Tales.

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.

Friday, July 24, 2009

I posted an article on Ncubator yesterday called “No Disability for Jody”. Since then I’ve received two lovely emails from friends who were shocked to learn of my state of affairs. I appreciated these so much.

It got me thinking, though. And I want to clarify something.

This is not a new situation for me and my family. I didn’t write about it for us, really. I wrote it for the untold others who are in the same situation or worse.

I wrote it to inform the able-bodied people out there who have no idea that this can happen in a country like Canada. Or the U.S. Or Australia, England, or … pick a country, any country.

It can happen everywhere. And it does.

That was the point I wanted to make. That the safety net of this and other countries is failing. And vulnerable people fall through it every day.

Just be aware.

Wednesday, July 22, 2009

If you’ve ever had a tendency to feel indispensible, a good run-in with CFS will cure you of that.
 
You will discover in short order that you are indeed dispensible, and possibly even forgotten, faster than you can imagine.
 
It is a heartbreak.
 
And it is a breakthrough of the first order.

Monday, July 20, 2009 

Saturday, July 18, 2009

I’d like to say I do this for the good of mankind. That that’s why I write here.

I’d like mankind to be healthy and happy, don’t get me wrong.

But I am not here on the net for mankind.

I am here for me.

Because the silence from the rest of the world has been shouting at me for years.

For years.

And now I am shouting back.

 
Friday, July 17, 2009

My world had gotten very small.

I would look around and see, really, nothing out there for me, beyond my own four walls.

Suffocating. Depressing. Infuriating.

So I took a leap through the portal of my laptop, into the virtual world of the net.

The reason I am here is because (except for my beloved family and my naturopath) I had to go this far afield in order to find people who cared about me and my life.

Thank God for the internet.

Monday, July 13, 2009

I guess it’s been a good week. I know it has.

Yet I feel … unsatisfied.

That seems strange to me. I am involved in things that just three months ago would have been beyond my ability to imagine. If you’d told me then what the next three months would hold, I would have … doubted that it was even possible.

Three months ago, right around now, I was newly online, with my very own laptop that my Baby bought for me from some money he’d inherited. At that time I was checking my email once a day (there was never any there) and checking my bank balance online. And then I’d close it up.

Since then, I have started writing for EmpowHer.com, and have now 18 articles published there, all taken from my website Ncubator.ca, which has 46 articles at present.

I’ve added this blog with posts from mid-April (starting during the isolationist time period that was, unbeknownst to me drawing to an end) to about a week ago.

I’ve had a few dozen requests to reprint some of my articles, and have seen some of my articles on numerous different websites.

I was invited to do an interview, and a podcast, within Ncubator’s first two weeks of existence.

All of this is fantastic, especially considering how solitary life had been till recently. I no longer feel that if I were to disappear, nobody outside of my immediate family would notice. That is very comforting.

I have done some writing for pay, a couple different copywriting gigs, and now a new writing job for Edubook.com which I am enjoying.

I belong to Facebook, with a bunch of old friends, and am a member and now an administrator (assistant) on Cort Johnson’s Chronic Fatigue Syndrome Forums (Phoenix Rising).

I have reconnected with some old friends who I exchange emails with again. And I write, and write and write without vanishing into fog.

So how can I feel unsatisfied?

I have pondered this, it doesn’t sound right to me either.

Here’s what I think.

I think that it is NOT that I am dissatisfied with any of this. Only a moron could be.

I think it’s because, … I just want … more.

This feels more positive. Because it means, I can handle all this stuff that I have going on, and still have time and the ability to move into more things than I’m doing now.

I had been afraid, with each new step, that this one or that one would cause the crash that I feared would be inevitable.

But I am still standing. Not only standing, but beginning to run. And still itching to run some more.