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.

Random Thoughts

I started a post a week ago, about the passage of time, while I was waiting at the dentist office.  Blogger seems to have eaten it in the intervening week.  Somewhat ironic as it's hard to believe that it was a week ago, already.  The vagaries of time is just one of the random thoughts I've had that I've thought about posting about recently.  You'll notice that none of them have quite made it into the blogosphere as of yet.  I'm hopeful that I'll actually finish something and get it posted before another eon has gone by.

Here's the thing about time: I know that, according to the universe, it is a constant and consistent thing.  Seconds go by, making minutes, which go by making hours, which make days, which make weeks, etc.  And these units of time are all uniform, each one the same as every other.  But it doesn't seem that way to most of us.  I'm sure we've all had the experience of a minute that felt like an hour and an hour that passed in what felt like a minute.  I mean, sometimes I look at my son, almost 16 now, and I remember so vividly holding that tiny newborn baby.  It seems like it was yesterday and sometimes my heart aches for how quickly those years have gone.

For those of us with chronic pain, time can seem even more inconsistent than usual.  Time can slow to almost nothing when you're waiting for a pain pill to take effect or you're waiting for it to be time for the next one.  At the same time, it can fly by and you've lost another week before you quite know it.  Another week where you didn't really get a chance to accomplish anything except make it through from one day to the next.  Sometimes, it seems like that's really all there is.

I've felt somewhat swamped by feelings and emotions lately.  Naturally, that's had a somewhat detrimental effect on my pain levels, leading to multiple mini-flares.  Not all of those feelings and emotions have been bad.  My sister completed her last round of chemo for ovarian cancer and was proclaimed to officially be a cancer survivor and in complete remission.  That was definitely news of the happy variety.  It still brought me to tears but they were tears of sheer joy.

Other things have not quite been as happy.  My mother was officially diagnosed with Alzheimer's after months of testing and more testing and struggling. I wonder if there will ever come a time when thinking about this does not make it feel like a hand is squeezing my heart and making it hurt. I also don't know whether to blame these emotions for the tightness that bands my chest and back and makes it seem like I can't breathe some times.  (Never fear, I have, indeed, discussed this with the doctor and it does not seem heart or lung related.)  Just thinking about this diagnosis can make me feel like I'm on the verge of a panic attack.  I worry about whether my mother will even recognize me the next time I get to see her.  Definitely emotion worthy.

This also tends to be a difficult time of year, anyway.  June 17 marked the 10 year anniversary of the death of my father.  Another way that time fools us.  How can it possible be 10 years already that he's been gone? Shouldn't I miss him less  after this many years? Sometimes he still feels very near.  The other day, I was driving home with my son.  He'd spent the day with two classmates, constructing a trebuchet for the Honors Physics class they are taking in summer school.  We were taking it home with us until it was time to take it to school for the assignment.  Consequently, my car smelled like fresh cut lumber and sawdust and I became completely swamped with emotion and drove home in tears.

You see, my dad was a carpenter and that scent brought him instantly to mind. I could practically see him, standing behind a saw horse, cigarette between his lips, carpenter's pencil tucked behind his ear, getting ready to cut a piece of lumber in our garage. In those memories, he is bigger than life, like he was before cancer shrunk him.  It is one of my big regrets that neither my husband or son ever knew my father before cancer.  Big or small, though, he was always my daddy and he always will be. I doubt another ten years will dim the pain of hearing my brother say the words "Dad died." Heck, just typing them made my eyes leak and my breathing stop for a moment.

I know how incredibly lucky I have been to have been blessed with such love and support in my life. You can't hurt like this unless love like that has been a part of your life.  And I still have that love.  He might be gone but I still have my father's love inside of me.  It's part of what makes me who I am. And I'm not alone.  If anything, my sister's experience with cancer has brought the three of us sisters even closer. At least, I feel very close to them right now and know that they would drop everything and be here for me in an instant if I needed them. So would my brother. I am lucky to be surrounded by that kind of closeness and love, even if there are many miles physically between us now.

I am also exceedingly blessed to have a husband who supports and puts up with me.  I'm sure that isn't easy as I've been an emotional trainwreck lately. He never complains about what I can't do because of the fibro and never makes me feel bad about not being able to do the things I used to.  And that goes doubly for our son.  I often feel like I'm letting him down and I know he doesn't really understand why sometimes I ask him not to hug me so tightly or why I can be crying for no apparent reason (such as driving home with a trebuchet in the car). But he constantly tells me how much he loves me and what a great mom he thinks I am. And when I'm feeling like a failure because I missed a drumline competition by sitting in the car at the venue because I couldn't take the sound and the crowd and I hurt too badly to sit in the bleachers, that goes a long way.

Fibromyalgia is an isolating condition.  Unless someone has suffered from a chronic pain condition, they can't really understand what it's like. We spend a lot of time in our head, just trying to make it through from one minute to the next. Not everyone is as lucky as I am to have family who loves and supports them on this journey to the new normal of our lives.  Never doubt for an instant that we hate it and, no matter what our lives were like before, we'd give most anything to have those lives back. Except my family.  I would not trade even being forever pain free for them. My wish is that everyone have at least one person in their life whom they feel that way about.