When I was first diagnosed with fibromyalgia, my reaction was surprising, even to myself. I felt this overwhelming sense of relief, pure and giddy relief. Far from being devastated by the incurable nature of the illness, or the lack of any dependable treatment (this was 10 years ago), I was so overcome with gratitude to finally, at long last, have a name for what I’d been feeling for so many months.
Since then, I’ve discovered this isn’t an uncommon initial reaction. Lots of us have been battling for so long with the naysayers, the ‘it’s all in your head’-ers, the ‘you’re just tired’-ers — not to mention the utter lack of information — that by the time we finally achieve that diagnosis and have a word to put to the horrid aches and myriad other symptoms we’ve been dealing with, we truly are relieved.
But after diagnosis, my emotional reactions to this illness’s ups and downs have been all over the map. Flares don’t always make me feel hopeless, and remissions aren’t always accompanied by contentment and joy. One emotion — or perhaps it’s better termed a belief — has been constant, though: my refusal to call myself “sick” and live squarely in the confines of my limitations.
Until now.
I’ve always been a fairly optimistic person, and when I first started dealing with fibro as a life-constant, I brought that same attitude to my treatment and daily coping techniques. I can’t say for sure that it made my experience of the pain and other symptoms any different. But somehow, I admit, it felt a bit … virtuous. As if I was “rising above” the illness.
Lately, however, the illness has risen above me. Risen above, and done a body slam on my ass, keeping me pinned to the mat. Or the bed. Or the couch. Or wherever I end up collapsing at ever-earlier hours of the ay.
A few years into my search for conservative treatments (read: anything other than prescription drugs) I read about something called “Phoenix Rising Yoga Therapy.” I’d been into yoga for a few years at this point, so this appealed to me. The idea, basically, was that a therapist/yoga instructor would work with you one-on-one, while you did yoga asanas (poses), adjusting your body and giving you light massage.
I called and made an appointment, and during our first conversation on the phone, the therapist was explaining her approach. “It’s important that we not go too far too fast, so we have to take this slowly,” she said. This rang all kinds of alarm bells for me. I blurted out, “Yeah, but my goal is to get better. I refuse to accept these limits.”
There was silence on the line.
“Hmm. I’m sure you agree it’s not smart to push yourself.”
I mumbled something like “Yeah, sure.” But the next day I canceled the appointment. I can’t explain the reaction I had to the woman’s statement. It offended me, as if she were trying to put me in a cell, or something. I know, obviously, that she was just expressing the philosophy of yoga, where it’s not about pushing the envelope but playing at the edge, and not about competition ever, even with yourself.
What I was saying was that I wanted to beat fibro — not just transcend it, but beat it, maybe literally, into the ground.
What she was saying was “this is your reality, and you can transcend it but you can’t beat it.”
And I wasn’t ready to hear it.
It got me wondering today, now that I’m several months into this … this whatever the heck this is — monster flareup? relapse from hell? — I wondered how others felt about it. So I asked the fibro-fab ladies (and one fibro-fab dude) on Twitter: “Do you honor your limits, or refuse to accept them?”
And here are some of the responses I got, all of which resonate with me deeply:
I tell everyone I know with pain to “listen to your body”, then I go & overextend my limits every time! I’m my own worst enemy.
I used to refuse to accept my limits until I wore myself down to a point where I was bedridden & completely dependent on some1. now I have learned 15 yrs later what my limits are & try to keep within them. Sometimes I push it but for the most part I dont.
I have to honor my limits. If I don’t, I wind up…well, kinda like I’ve been the past few days, totally flaring miserable!
[S]omething in between. I decide just what is worth it and what isn’t. I am not a hero.
More of the keep doing stuff until I fall over the cliff of my limits kinda guy myself. I know there there, but….aaaaaaaahhhh
What about the rest of you? Do you honor your limits or deny and push past them? What effect does it have on your experience of your symptoms?
I don’t know that I have any answers, by the way. I’m still struggling to make sense of this myself. For nine years, I adapted and adjusted and was functional. Then, last year, the rug got pulled out from under me, and I’m still trying to find my footing.
UPDATE: Almost as soon as I posted this, an email from Yoga Journal arrived in my inbox with these almost scarily prescient comments:
Are You Working Too Hard?
As hatha yogis, we work earnestly to find peace through the mind-body connection. The fruits of our practice are a direct result of the quality of our time on the mat, rather than the quantity.
If we allow our ego to lead our practice, we run the risk of overefforting and creating agitation in the mind and injury in the body. If we practice with humble curiosity and compassion for ourselves, then our bodies, breathing, and minds are more likely to become calm and peaceful.
Hi……this is HanHouse from Twitter. I just read your blog and I loved the honesty! I could have written those words. I can relate so much to what you said.
I’ve had fibro for 27 years and you’d think after that long that I would have a pretty clear roadmap of how to live with chronic pain….where, in truth, I am still stumbling along, trying to retain my life and what I want out of it, instead of “co-operating” with my illness and remaining within it’s boundaries. I am just stubborn enough not to want to do that. I do have to lay down for a nap most days, because the fatigue is just so incredibly strong. But for the most part, I push.
I have my own antique business (online AND brick & mortar shop) which requires me to stay active to a point. It’s my passion though, so I don’t mind. Sometimes I think if it wasn’t for my business I wouldn’t have a reason to get up in the morning. Other times I feel overwhelmed and worry that I won’t be able to continue. The nice thing about my business is that I can take a day off if I want to. :o)
It’s been an interesting journey, that’s for sure. I have a good doctor (who also has chronic pain), a supportive husband, a mom & an aunt with fibro, and an online support system on Myspace….so I have the validation and the help that I need emotionally. But it all boils down to my own attitude…how I deal with what I have been dealt. Every day is different, yet every day is the same. I’m still learning….
~ Julie
Hi Julie! Thanks so much for your incredibly honest and thoughtful comments. I appreciate so much the kind words.
I feel you on “stubbornness” – I’ve always had a mile-wide “I wanna do it myself” streak probably from birth. Like most gifts, it’s also a curse sometimes. Like you, too, I’m somewhat of an “old-timer” with this illness (10 yrs for me), and even so am always still feeling my way. It’s not a path so much as a ride in a county-hopping tornado: there ARE no straight lines!
For others w/ chronic pain who haven’t embraced Twitter yet, I urge you to consider it. It’s been an amazing place to connect with other fibromyalgia-dealing women and men for me, a constant and immediate support group whenever you need one.
I have to admit, I struggle with this. I say I’m going to pace, then try to push it and end up in bed for days!
Hi Wealthy and Healthy!
That’s a foreseeable result of pushing beyond our limits, isn’t it? Yet, we all do it.
My advice would be not to add to your burden by compounding it with guilt. There was a post recently on another blog which I can’t find right now (if anyone knows, PLEASE contact me or comment here and leave a link, ’cause it was awesome) suggesting that the way the author dealt with things was to basically build in and accept the blowback!
In other words, she’d say to herself, “I need to go to my nephew’s birthday party, but I know that will cause a flareup for two days. So I’ll plan to go, knowing the next two days I can’t schedule anything more taxing than bed rest.”
I thought that was kind of genius. A little stunning, too — we talk about accepting limits, or ignoring them and then paying for them as if we’d forgotten what happens when we do too much, but hardly ever do we contemplate willingly and knowingly assuming the risk of the worsened pain and/or fatigue or other symptoms.
I was just thinking about this today. I usually almost always push past my limits and end up useless for days or even weeks. However, on the rare occasions that I actually honor them, the next day I’m better and can get back to my routine. So really I’d save days upon upon days if I didn’t push myself so hard. On the other hand, I think you have to have the attitude that your going to fight/win/go past what you think you can just to get a shower everyday with this disease.