Wednesday, December 17, 2008

Stark Numbers

For a few weeks now, I've been seeing a behavioral specialist that my new primary care doctor recommended. At our first appointment, I told her that I was looking for new - to me - ways to manage my pain, up to and including heroin. I may have been joking, but I'm not entirely sure I will be able to say the same three weeks from now if this pain continues unchecked as it has been. (Yes: the Lyrica helps. It helps so marginally, though, that I'd stop taking it if that margin wasn't the difference between "needs to be committed because she can't stop screaming from pain" and "is able to limit screams just to when people touch her".) So she recommended a behavioral specialist that helps people with chronic illnesses find new ways of coping with the pain. I probably still would have preferred the drugs, but I went anyways. I went because my pain and I? We're so tangled up together that there's really no separating it from me anymore, and I just don't want to live like that: it isn't how I need my life to be. So, if it isn't going to get better/go away, then I need to deal with it better, because I feel sometimes that it is swallowing me whole.

The specialist is actually part of a group, and since I couldn't see her, I'm seeing an intern, who I really like. She's very nice, and has managed to - in the two sessions we've had - grasp what I am trying to say even when I feel like I am babbling like a fool. We talked a lot about how I am managing (or not managing) the challenges of living with chronic pain and illness, and she's going to see what she can do for me as far as additional strategies go. At the end of our last session, two weeks ago, she gave me a homework assignment, which was to track my pain. She gave me a week's worth of worksheets (she was sick last week, which is why I didn't have an appt.), and told me to try to circle a number for pain every hour I was awake.

This is not a new experience for me: in 14 years of dealing with this, if I hadn't have somehow tried to keep track of good days and bad days by now, then I don't know that you could call me very smart at all. But it's been a few years since I've done it, in that way that things come up - babies get born and start wiping poop on your face, houses get sold and you have to pack all your belongings up in under 2 months, grandmothers get sick and die in the same short time period - and you get too busy to do more record keeping type stuff. So, I had no problem doing it again.

I think, a lot of the time, that the people in my life are confused about my pain: they think I'm either exaggerating or that it can't possibly be as bad as it sounds. The thing is? I know that I actually understate the whole thing, so as not to spend each day focused solely on myself, so that I don't seem like a constant complainer who nobody ever wants to be around. I try to only grimace when Lil Girl hugs me or my uncle pats me on the back, rather than bursting into tears, which is how bad it truly hurts. I try not to moan every time I move, like my dad does when his back is killing him, because I hate that! I try to keep the whining to a minimum; try to do for myself when I can so that when I can't someone is willing to help; try to make my life as ordinary as it can be.

But the truth is?

During all of that, I am in pain. A lot of pain.

Always. It doesn't go away, not ever.

When I go to the doctor and say "I can't remember a pain free day. I don't remember what that feels like anymore." Or "my pain is 7 out of 10 - on a GOOD day," I am not exaggerating: that is as honest as I can be.


But I can't explain how I do manage to get up and get dressed (some days) and watch Lil Girl or try to go shopping or scrapbook or make cookies or any of the relatively small things I do that make up my every day. I can't explain it satisfactorily to myself, let alone to other people. "If your pain is that high, if you're really not sleeping more than 2-3 hours a night,you wouldn't even be able to function" a family member said to me recently. And the truth is? That sounds right to me, but I know it's wrong: I make it through my days, doing what I can do, living with what I can't do, because that's what I have to do. I don't have a choice - it's just the way it is. This is the functioning I am able to do, so it's what I do.

The pain is not going to go away if I wait long enough; the fatigue isn't going to get better no matter how long I rest (3 years of sleeping 18 hours a day certainly cleared up that mystery for me), and time is going to pass, life is going to move on whether I do anything or not, so I do what I have to do.

And now I'm wandering away from my point (there's a point) more than a little.

My point was that seeing my pain quantified in those little charts (which, because I am sad, I have since converted into an Excel worksheet. Complete with graphs. Seriously: professional student much?) was a surprise to me.

Not that I didn't know the actuality of living my life, but seeing these numbers? Has really brought up a lot of conflicting emotions for me.

It's made me angry, because I see how much of my life is really consumed by pain. There's no real emerging pattern, which drives me crazy. It's so frustrating to see it all in black and white (and colors: wait till you see the colors) because I just want to erase all the high numbers and start over. It's also made me really conscious of the levels of pain - having to seriously consider where I was at, every hour, made it more possible to see all the different yet subtle ways I was feeling better or worse.

I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.

It makes me want to cry - with grief, because this is my reality and there is no ignoring it and with relief, because I'm not going crazy, it really is as bad as it seems.

And it makes me hope, really hope, that when I go in for my appointment tomorrow, she'll have some magic up her sleeve. It's the season for miracles, right?

3 comments:

Crazed Mom said...

Once again your daily courage humbles me. I'm sitting here with a sore knee(old age I think) and a headache wishing I had something better than Advil. I have has no energy since school ended, I feel a slight empathy for your chronic fatigue. If it makes you feel 1/100 as crappy as I do, I do not know how you cope.

I have said it before and I will say again. Every single day I think of you~you are my personal heroine. You awe me.

I sincerely wish Santa Claus was a real man who could make miracles happen. I would ask him to cure you. I have what I need, so I would ask for you.

Ignore the crazy, unempathetic family, they are incapable of understanding. They don't want to be mean, they are simply too limited to be able to put themselves in your wheelchair for an hour, let alone a day. Forgive them~they know what not they do.

I see your indominatable will and spirit that keep you going. I see the inner core of strength that shines within you.

You are my hero. HUGZ that do not cause pain to you.

The Goldfish said...

I have so much empathy for this NTE. Sorry it has taken me so long to comment - this window has been open on my computer for the last few days while I've mustered up the brainpower to type something in it...

I have had reason to perform the same exercise at different stages of my illness and it is at once heartening and demoralising. On the one hand, there it is, your perception of things is justified. On the other hand...

I am very fortunate never to have faced that doubt - at least not explicitly. I'm also lucky to have managed to get the drugs I need - except for periods of weeks in between getting worse and getting it sorted. Nobody should be in this sort of pain long-term, and I'm kind of hoping that as well as offering psychological help, the lady you're seeing may help make a case for better medication.

I'm glad you had a good day on Thursday. Hope you have several more good days over Christmas and that 2009 is a little easier for you.

Maya Jewell said...

I've just found your blog and felt as though I could almost write this entry myself. Though I'm in a lot of pain, you definitely have a rougher time of it on the pain scale than I. Mine is kept down to a dull roar with Ultram and industrial grade ibuprofen.

The part with which I identify most is how it feels to keep track of symptoms. I can't do it very often or for very long. So much of my time is spent trying to prove to myself that I am not my disease. However, sitting down, asking myself the question one needs to in order to keep a log; how much pain am I in? how much fatigue? how is it affecting my life?, it's more than I can bear.

I truly feel for you.