Off Kilter

One of the worst things about fibromyalgia, in my opinion, is how it changes your sense of self and your physical perception of being.  For me, this is often evident in the feeling that I just don't quite fit in my body right any more.  It's not necessarily anything I can pinpoint, just an overall sense of discomfort, like my body is a set of clothes that doesn't fit quite right. This is mightily annoying, to say the least.  I mean, if it was a set of clothes, you could just take it off.  But what do you do when it's your skin that isn't fitting right?

I've been suffering from this particular malady for about a week or so now this time around.  It leads to a sense of the entire world being off kilter and out of balance.  Or, rather, the sense that you're just not quite aligned with the rest of the planet.  You know the sense you get when the soundtrack of a film isn't lined up just right with the action?  Or you're watching an old badly dubbed foreign film?  Things don't match and the longer you watch, the more disconcerting this becomes. Imagine that your whole life is like that.  Just enough off so that you can tell something is wrong but probably not enough for other people to notice it.

So right now, I'm walking around in an ill-fitting skin, a fraction of a beat off of everything happening around me. I do not like this.  I do not like this in the least.  (I feel like I'm channeling Dr. Seuss here and my next line should include the word beast.) I can't say that my pain levels are extraordinarily high although my brain is definitely fuzzy and experiencing more difficulty than normal in process simple things.  Coming up with the right words is a challenge.  For someone who lives and breathes words like I do, this is rather distressing.

What if I lose my ability to put words together, either verbally or on paper?  What if the written or spoken word suddenly makes no sense to me and it's as if everyone is speaking in a foreign language that I don't know?  These are the thoughts that go through my mind when I'm in this off kilter, off balance, ill fitting state of mind and body.  Everyone with fibromyalgia knows that there are definite cognitive symptoms and effects that go along with it, the dreaded "fibro fog".  Just like everything else about this malady, I'm sure that's as individual as we are.

This lack of uniformity is part of what makes this such a difficult disease/syndrome/condition to deal with.  Not only do we not all experience all of the same symptoms or issues in the same way, even our own symptoms and issues can vary day by day and hour by hour.  One day, you might force yourself to get up and do things in spite of feeling like you can't move and find that the getting up and doing of things actually makes things better and the rest of the day is okay.  The next day, you might hold on to that thought, force yourself to get up and do things in spite of feeling like you can't move and find out that the getting up and doing of things actually makes things worse and the rest of the day is horrible.

There is no rhyme nor reason to life with fibromyalgia.  It's impossible to predict how you're going to feel from day to day and hour to hour.  You don't always know what's going to set you off (and there's nothing better than thinking that something is likely to trigger a flare and then having that flare not happen) and what's safe.  But life goes on and we have to go on with it.  Yes, it's really difficult to think about making plans for anything, even something as simple as a trip to the pharmacy or grocery store, in advance.  We do it anyway.  We have to.  When the time comes, those plans might have to change or be altered but we still need to make them.  We need to make them and hope that, when the time comes, we'll be able to do what needs to be done.  Otherwise, the fibro wins and I'm not going to let that happen.