What a ‘Good Day’ With Fibromyalgia Looks Like.

By:Vikki Patis
The Mighty

When you have a chronic illness like fibromyalgia, a “good day” doesn’t mean what you might think it means. A good day could mean you didn’t wake up in complete agony that morning. A good day could mean you managed to walk the kids to school, or sit in the morning traffic without pain. A good day might mean that you got out of bed at all.

What some people don’t understand about fibromyalgia is that one day you can be bounding across the office, striding with purpose to a meeting, and the next day, you could be curled up on the sofa, calling in sick or desperately downing coffee, trying to stay alert. Without proper treatment, the latter was more common for me. I couldn’t afford to call in sick, but there were plenty of days where I drank my body weight in coffee, snatched a 20-minute nap in my car at lunch, only to crawl into bed at 8:00 p.m. without eating or showering, too exhausted to care..

Since my diagnosis and subsequent treatment, my good days have become more frequent. A good day for me means doing 5000+ steps without thinking about it, attending a Pilates class, managing to make dinner and shower in the same evening. These seem like tiny, inconsequential goals, but they’re huge to me. Having a “good day” means I can focus on my career, have some kind of social life and enjoy the days, rather than simply dragging myself through them.

A good day for someone with a chronic illness is a day where they might forget, for a few hours, or even a few minutes, that they’re ill. A good day is a day where I can savor being alive, enjoy a short walk or go out for lunch with a friend. I’m so used to saying “I can’t” that when I decide to say, “Actually, yes, let’s do it!” it’s still a surprise.

But having good days doesn’t mean you’re cured. Part of fibromyalgia is having your symptoms flare up, bringing you down and casting a shadow over your life. A recent flare had me in horrible pain. My back seized up like it was locked in chains. “Fibro fog” can leave you dazed and confused, shuffling through the day like a zombie, forgetting to put dinner in the oven or just completely unable to function at work. I describe it as kind of like having the flu – your brain isn’t working, your body is aching and you’re completely exhausted. Now imagine having to deal with that half the time, and having to continue on with your life, because, let’s face it, life stops for no one. Even with fibro fog and in the middle of a painful flare, I still have to go to work, feed my cats, clean the house and do everything else that comes with daily life. I’m fortunate to have a partner who is fully supportive and does his share, but not everyone does, and, even with him, it can still be unbearable.

So, do the good days cancel out the bad? Absolutely not. The bad days, when they arrive, are really quite bad. But the good days make it all worth it, to me anyway. Having several good days between bad means I’m brighter, I feel happier, accomplished. It gives me something to focus on when I’m in the grip of a flare. It’s that sunshine behind the cloud – the cloud is there, and it’s center-stage, but it will pass..

 

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