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.

It’s not enough for me to let you know I have Chronic Fatigue Syndrome and I don’t feel good.

I want to give you details, about an astonishing variety of stultifying symptoms that are real life-stoppers. And I want you to be haunted by a chronic with a face. If it’s me, well and good. If it’s someone else that’s fine too.

But somehow people have to be touched by this devastator and destroyer. We are a huge part of the population, and yet nobody hears about us.

We have chronic blogging communities which is a good thing, because we need the contact. And within our small communities we share information with each other, friendship with each other … a world with each other.

But the outside world, the one you live in, never even hears of this condition. Like it’s not real. Unless you happen to know someone who has it but … it’s a mystery. Nobody understands it.

This is true. Nobody does understand it. We only know bit and pieces of things, that we try to make hang together as we grapple with it. We are doing a better job, getting more data than ever before.

But our media largely ignores us. Our medical community, researchers, funders, largely ignore us. Our communities largely ignore us.

So I am putting a face to this crippling disease. I am giving you an insider’s view of what it’s like to be bound and gagged year in and year out by illness.

Other chronic writers are doing the same thing. None of us will touch every one. But if enough of us do it, telling our stories, sharing our tragedies and our losses, some of it’s going to raise awareness with real people. The people who read articles like this, who care about their own health and other people’s health and well-being.

And maybe eventually there will be enough people who have become aware of how our lives have been crushed and consumed, that they might make a difference with the institutions who don’t seem to care about us …. and so easily pass us by …

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 about an hour is 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 excursions of the day.

This is what special occasions look like, on a good day, in a household with CFS.

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.

Saturday, March 20, 2010

What do we want?

We want the reality of our disease to be understood and acknowledged by the rest of the world.

We want the ongoing sick joke about being tired to end.

We want our autonomic dysregulation, our orthostatic intolerance, our POTS, our autoimmune dysfunction, our cardiac and cardiovascular problems, our hearing and vision problems, … and more … to be taken seriously.

We want programs and research and support like other “real” diseases have. MS. MD. Arthritis. Cancers.

When have you EVER heard of any of this type of thing for Chronic Fatigue Syndrome?

EVER.

I didn’t think so.

Saturday, March 6, 2010

Today I paid for another year of webhosting for my website ncubator.ca.

After I’d finished the process, I got an email declaring, “Ncubator.ca is Renewed”.

What a lift. Like the advent of spring.

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 …

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.