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The Long, Winding Path You Face After Accepting Fibromyalgia

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I’m pretty shy about sharing my writing. Last week, I accidentally shared one of these Mighty articles on my general Facebook feed and had some alarmed responses. People were a little freaked out and thinking I wasn’t coping very well. Freaking out in a good way, a kind way, and I guess when you’re quiet like me, struggles that seem really obvious to you and me come as a shock to people who don’t have mind reading abilities. Because, after all, we don’t look sick.

But the response took me back a little. Because the implication, suddenly, was that I wasn’t coping as well as I should be and I kind of think I’m doing pretty OK.

It got me thinking about the process of dealing with a chronic illness diagnosis. It’s a long process, that’s for certain. It took me a full two years to accept that I was actually sick and within that period there were bouts of anger, frustration, mourning, depression, conviction that I could overcome it (a.k.a. denial), thinking my life was over, feeling fragile, feeling absolutely fine, feeling not fine but like I could deal with it… Like I said – a very long process.

And now I’m at acceptance (most of the time – denial still likes to sneak in – I mean, it could really be a calcium/magnesium deficiency, right?) and this opens a door into a whole new process. Because now, at the age of 48, I have to figure out how I’m going to live this – how I’m going to metaphorically (if not physically) get off the couch and do something!

A little while back my husband mentioned that he had another 20 years of work to go and that really whumped me on the head. “What on earth,” thought I, “am I going to do for 20 years?!” I’m sure as heck not going to lie on the couch and watch life go by. I mean, I might lie on the couch, but I’ve got to have something meaningful to occupy my time.

The last eight years I’ve been doing the homeschooling mom thing. I have a kid who had some issues that were best handled with homeschooling. Before I got really sick (because, let’s face it, this has been brewing for 20-some years), I had been dipping my toe back into the working world. But now, those activities aren’t really proving to be all that fibro-friendly. My kids are high school age, and heading towards independence, and I’m not really sure what my next chapter is going to look like. I had a plan, but obviously that plan is not an option anymore.

So, I’m casting around for things to fill my brain hours – volunteer activities that don’t require a lot of physical work, things I can do creatively from home that aren’t crafty (because me and all things crafty just don’t work), something maybe intellectual but tiny (tiny chunks of intellectual material – does that exist?), things I can do to contribute…

And so, I’m kind of all over the place. And like any mom, my kids kind of make life difficult sometimes. And like anyone with chronic pain, I kind of feel like crap all the time. And like anyone with fibro, I’m really bloody tired. And like most women everywhere, I don’t know what the hell to make for supper (and could someone in my household learn to cook already?). And I really, really need a break, but I’m too sore and tired to go anywhere.

But I think, really, I’m coping OK. In fact, I think I’m right on track in this process of dealing with my “new reality.” I’m sick. Some days I’m really mad about it. Here’s the list of things I can’t do anymore. Super sad, frustrating, depressing. Now let’s start working on that list of things I can do. And I know that can and can’t list is going to keep morphing and changing, but I think the steely grit has started to set in. I’m ready to
get back out there and, gingerly, carefully make my mark.

Today, at least. Tomorrow, I may need to spend the day napping.

So – sad, mad, glad… it’s all going to be one big ball of a mess with me for a while. But I think that’s OK – I think that’s right where I need to be.

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Thinkstock photo via pkujiahe.

Originally published: November 10, 2017
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