Monday, August 15, 2011

Ch-Ch-Changes, Part One

I wrote this post about two weeks ago, and then was waiting to find time/energy to upload some photos with it. Of course, then I flared and pretty much disappeared off the web.

Ch-ch-ch-changes ...

In most ways, nothing has changed here in Sick Momma-Land: I'm still trapped in limbo without a clear diagnosis; I continue to be intriguing to (some) doctors because of my tantalizingly abnormal labs that indicate something isn't right with me but diagnosis eludes them; I still search for that elusive balance between taking care of myself and being a good parent and spouse.

So what's changed?

I find myself infected by a meme I keep finding in various places on the Internet: the choice to push the boundaries of life with a chronic illness and to stop putting everything off until the illness goes away.

It is a fine line, of course, to do more without making oneself sicker by doing too much.

I'm mostly taking baby steps onto the tightrope as I try to find my center of gravity, and hoping that my safety net is securely in place as I occasionally make the inevitable stumbles.

I'm trying to face my fears of trying things I know will be challenging. In April, I went along for the four-hour drive to visit my inlaws for a weekend, and while it confirmed I don't travel particularly well anymore, I learned an important lesson: I need to schedule longer trips so I actually have some time at my destination that I'm not flared. In other words, I need to build in rest days/periods.

We will test that out this fall when we go to Chicago to visit my family for the first time since before I got sick. In fact, it was on June 5, 2007, that I woke up in the wee hours intensely ill with what started as bilateral pneumonia and turned into my mystery illness. We'd been scheduled to fly that day to Chicago to celebrate my eldest niece's high school graduation, and since I literally was unable to sit up much less get out of bed, we canceled the trip at the last minute. 

I have tentatively planned trips there since, but haven't followed through. This time, we've got the plane tickets bought ... and I'm hoping that there isn't a jinx that will force us to cancel this trip too.

Other changes?

I have increased the frequency of acupuncture appointments. And I think it's helping with my energy levels, which have a greater impact on me than my pain levels.

Also, I've found a new hobby since I fear I will never have the energy and stamina again to make quilts. It has some of the same appeals -- pretty fabrics, the ability to play with color, the sense of creating something -- but is on a much smaller scale so that I can accomplish something in the 15-30 minutes I'm able to spend before my hands hurt too much. 

I'm making fabric flowers that can be made into hair pretties for the young crowd and things like brooches or purse decorations for the grownups.

I'm still mastering the techniques, of course, but my quality assurance tester and model is delighted by them. And she tells me that they are much admired by her friends, so I have fantasies of someday having enough stock to open an etsy shop and sell them. :) In the meantime, I have a girl who is loving the test models and I hope to get them perfected enough to give them as gifts and maybe to donate for the school auction. 

One wasn't enough, but she thought three was almost enough. :)

Please ignore the messy counter and fridge behind her!
I also participated in a six week workshop on parenting wirh chronic illness led by  the awesome Maria of My Life Works Today. I wasn't sure going in what I'd get out of it, but it  was definitely worth the time and I felt like I made real friends who grok what it's like to live this life.

I love the support I've found online in so many places; the online chronic illness community has been a godsend! But it's also wonderful to get to hang out in "meat space" and have the kind of free flowing conversations that work best verbally. It was hard sometimes to drag myself out for a two-hour session when I was home already feeling drained and exhausted. But even though the sessions tired me out more, it was a "good" tired. (Of course with three spoonies involved, there were a few cancellations. I think it took us eight weeks, maybe nine, to do our six sessions. But it was a wonderful, wonderful experience for me.

Meanwhile, I will try for one more change: to become a more frequent blogger. I'm not sure how it got to be so long since my last post, but I'll be trying to do better. :-)

Hope all of you are as well as possible.



Leslie said...

Glad you're back!!!

Laurie said...

Happy to see you writing again, Aviva!

Sherril said...

Cool flowers!