Today It's All About Pain, and Riding the Edge

I've had a rough day, worrying about money, getting myself into a tizzy. Silly me, I'll be OK. I'm just wrestling too many accounts and homes and bills at the moment.

(image from the American Pain Foundation's video)

And I seem to have a bit of food poisoning, if there is such a thing as "a bit" of food poisoning. Either that or the flu. Or maybe I've just gotten myself into a lather.

And my pain has been rough this week. I miss my massage therapist, the wonderful Christopher Hannan. The pains in my neck muscles, shoulders, and back have been flared up this week, and I know if I just had an hour or two with him, I'd be righted - at least as well as I ever am.

Something made me think of my fellow sufferers from the APF video, and then of an article I read about "Understanding Chronic Pain", so I'm sharing the link with you. It's a helpful depiction of what chronic pain does to the mind, body, and spirit, and the doctor has wonderful quotations from literature and the Bible about pain. They comfort me.

Rod's helping me to try to avoid pain more, and abide with it less, which is my tendency. I try to ignore it and everything about it, to stay in denial until it absolutely takes me over, and only then do I bow to it. Rod's suggesting a more preventive plan, and I'm ready to try it.

In the past I've been approaching this disease with the idea that I want to give it as little as I possibly can give it in terms of time, thought, anguish, adaptation, and of course money. My thinking was that the disease takes enough of me already. It already robs me of my time and energy and what I want to do with my time and energy. I didn't want to give fibromyalgia any more of me than it had already taken. I wanted to give fibromyalgia its due, as minimally as possible, doing just enough self-care to keep it at bay, and no more. I have wanted to ride the limit, pushing as close as I can to it without going over the edge into extreme pain and fatigue. I wanted to maximize what I could do and how much living I could get out of life.

Look at it this way, if my healthy self allowed me 100% of my time and energy, and if my fibromyalgia self, on average, gives me only 75% of my time and energy, I wanted to ride that limit right up to 74% without going over the edge into being "down" for the day, or several days. The problem is, with this disease, one never knows where that edge is, whether its at 41% or 62% or 73% on any given day. I never know how many spoons I have to work with each day, so it's a guessing game (see Spoon Theory). It's a wonderful illustration, but The Spoon Theory's author explains it as though one always knows how many spoons they have to work with, but we don't do we? Even so-called "normal people" :) don't know how many spoons they have in a given day. But if I played it right, and guessed the right number of spoons, and monitored myself through the day correctly, and fibromyalgia gave me a good day, I could maybe get 74% of my allotment of living for the day. What's wrong with that? Doesn't everyone do that?

I was being stubborn, as usual, something my Dear Mother says I have had a talent for since birth. And stubbornness has gotten me pretty far.

But I have to wonder whether I am cutting off my nose to spite my face. My stubbornness and refusal to deal with it has gotten me into trouble, too. What if I tried a more even-keel approach? I don't know. A lot of the experts recommend it. But what if the more careful approach would give me a consistent 60% every day, or even most days? Wouldn't I be giving up that other 14% I might have had if I had ridden up to the limit? Yes, yes, I know. I'm ignoring the times when I ride the limit so close that I fall over it into the other side, into the state of fatigue and pain that takes me out for hours, or days. On those days I have to deduct from my percentage of successful living, and maybe I go backwards for a while. I've been gambling that I can maximize my living by riding that limit. Now, I'm willing to try a consistent routine and less of a roller-coaster.

But I have a feeling that with this disease, there is no even keel. That's been my experience so far. By definition, fibromyalgia is a f***ing roller-coaster!! I don't think I even know how to do the even keel any more. The disease has had me in its grip since....1994(?). That's almost 15 years that I've been riding its waves up and down, trying to get a handle on it, trying to out-guess it, and wondering which element in the routine may be throwing me off. Was it the new medication? Was it the weather? The angry husband?(!) Or maybe the long commute that day,getting stuck in traffic, or the stress and cold of scraping ice off the car and hoping not to get mugged while doing it?

At one point I considered trying to create a database and programs to track every element in my routine, my environment, the weather, my diet, sleep, the meds, etc. in an effort to find a pattern to the flares. But I had barely begun the database design when I realized that there were so many variables that could possibly contribute that it seemed nearly impossible to expect a pattern to emerge. Every time that I had come close to thinking I knew what it was, the pattern was disproved. The only consistency was the inconsistency - and that certain weather (coldness or low gray cloud-cover) would put me down every time.

So why spend that much time thinking about it? I want to spend my 74% not thinking about fibromyalgia. I feared that if I spent that much time tracking every detail about myself that I would start to think of myself as a sick person who needed that much charting, and I did not want to get that self-obsessed. I have too many other interesting things to think about.

All o f that leads to where I am now: in Arizona, away from that sort of weather, and with an opportunity to start new with a clean slate stress-wise. I can manage my own stress picture by choosing what to worry about. That should work, right? Maybe.

So I am going to try for an even keel. A consistent routine, good diet, exercise, low stress. We'll see what that does to the disease roller-coaster. [Right. Being away from everyone who loves me is low stress. Right.]

I am committed to trying it, though. And I'll let you know how it goes.

But...I'm still not sure that I'm made for the even keel. By nature, I need to shake things up, try new things, do different things. Oh, I'm going to fight this. It's going to be a huge battle against me. I wonder which one of us will win. :)