For the first 9 years after being diagnosed with fibromyalgia, I did my best to ignore and resist it, and was determined to overcome this monster that had claimed an undeserved place in my life. I’ve begun to look at it differently, however, as that initial approach clearly didn’t work.
The past year has been a roller coaster ride, and I have moved in between powerfully accepting what is so and gnashing at it like a rabid animal, angry at the sickness and all it has taken from my life. Sometimes it feels good to just be ANGRY. I didn’t sign up for this, it wasn’t in the plan, and I am going to Hate. Everything. All the time.
Funny thing, though: When I’m angry and frustrated, the pain gets worse. When the junk in my head starts running the show, or I’m confronted by something I need to deal with, the aches begin almost instantly. People can literally be a pain in my neck. And the more I pay attention to this, the clearer the correlation becomes, to the point where I’m wondering just how much of fibromyalgia is brain, and how much is body. Which triggers which?
When my former doctor told me to relax more, that I had stressed myself out, and wasn’t really sick, I wanted to punch him in the throat. Now, however, I can see that he was on to something. He didn’t have the “not really sick” part correct, but he was right about the stress.
It’s difficult to go from being a person who is extremely on top of things with a mile-a-minute mind to a foggy, lethargic-minded scatterbrain. The closest thing I can compare it to is Flowers for Algernon. Some days I worry that the fog will never leave, and I’ll be trapped in an endless cycle of notes, alarms and reminders just to get through the day; it takes high-maintenance to a whole new level.
I thought eliminating gluten was the magic bullet — those first few months were a wonder to behold. But fibromyalgia is insidious, and I stopped paying close attention to my stress levels, which have been higher than normal lately.
The last few months have been the stuff of nightmares, with pain-wracked insomnia, brain fog so bad that I forget things in an instant, even with an alarm, thinning hair, swollen limbs, and crying in every imaginable public and private place. When I think of 40+ more years of this, the tears really start spewing. There are days of hopelessness, when I wonder if I will ever achieve my goals — if I can really continue to think big when sometimes it’s my goal just to get through the day. I didn’t want to blog about it because I wanted to find some answers for myself first, rather than simply posting about the aches and pains without some kind of solution to propose.
So here is where I find myself: I’ve renewed my commitment to mastering my illness not from a place of battle, but one of strategy. Work around the illness. Create teamwork. Build a solid foundation so that even if I’m flat on my back, the show goes on. This is all the mental part. When I was riding a wave of wellness a year ago, it was easy to pay lip service to that. But now, when I’m in the thick of it, is when it really counts.
If my head can have such a significant impact on my body, then why not create an empowering context with which to frame my life — and maintain that context? On the tougher days, it is sometimes a matter of letting go and giving up the frustration minute-by-minute, but as with any muscle I exercise, I’m getting a little bit stronger and better at it every day.
What could that mean for you, if you used your mind to your advantage, looking at your illness in a new way that gives you the power to master and outsmart it?