Tuesday, May 10, 2011

Day 357--The Word of the Day is...


I woke up, after sleeping nearly twelve hours, with pain on both sides of my neck.  Since then, it's spread across my shoulders and into my upper back.

I have a therapy appointment in an hour so, despite the temptation to call Dani, my therapist, and cancel for the day, I have forced myself not only to put on clothes but to put on a skirt.  And a top.  And to write this, to stay busy so I won't be tempted to cancel.

I really do need to see her.  She's one of the only people right now that I trust with my fibro, who I feel hears me.

After the rheumatology disaster yesterday, I had a long talk with my mother who had been at the appointment.  She felt the doctor was fair and matter of fact; I felt the doctor was a bitch who could give a shit less and blamed me for not feeling better.  This is one of the reasons I think it's critical to bring a second party to the doctor's office.  Not only do they hear things you don't, they can also give you another opinion on what happened.  As I said yesterday, I'm not rational right now.  I'm not in the mood to give people second chances or whatnot.  I'm in pain and it's incredibly frustrating to hear people say things about you that seem unfair.

Dani is the one person that I can go to without my mother and feel like I'm being heard.  I don't want to take my meds before I go because they make me sleepy and it's hard to concentrate.  I want to be able to pay attention to what's going on.  I want to hear what she has to say and answer her questions fully.  Being in pain makes that difficult, but being medicated makes it near impossible.  I rarely take medication before I see her.

Tuesday is the day that i normally see Dani and then go to the bar beneath my mom's work and enjoy a couple of drinks and maybe a cheese plate while I wait for my mother to finish her work.  Today I won't be able to do that because I'll be driving.  Don't drink and drive.  I believe strongly in that--both of my parents were in a drunk driving accident when I was a child and my father almost died--so I try to practice what I preach.  So unless my husband drops me off up there later, I won't be going.

It's ironically become an entertaining little habit of mine.  I enjoy it, and the alcohol does help the pain.  Obviously, it has a numbing effect, and since I don't take medication before seeing Dani, the alcohol tends to take the place of my painkillers on those days.  It's funny, because on some days, alcohol does a better job than the painkillers I've been prescribed.  And I enjoy my time with my drink and my cheese plate, and my conversation with the bartender, who has started to recognize me.  It's like "MY" time.  Nobody there to tell me I shouldn't be drinking or delving into why I do what I do.  Nobody there to remind me of my responsibilities or the pain I'm in.  I can be anonymous, unseen, and normal for an hour or so in the darkness of the restaurant and bar.  I like that.

I think there's an element of normalcy in getting to have a day away from the medications.  I recognize that alcohol in and of itself is a painkiller and has similar properties, especially the way that some people use it.  That may include me, how I use it, I'm not sure.  I don't drink to the point of stumbling out drunkenness.  I have two drinks with my cheese plate and then I'm done.  But being able to do that--have my two drinks--makes me feel normal, as though I'm one of thousands of people who stop off somewhere after work to have a drink with a friend or colleague before going home.  So rarely do I get to feel normal these days.  Nothing about my life feels normal anymore.  Walking the dogs, which I did the other night, was incredibly painful because they pull the leashes.  Trying to gain energy to take my children places is hard.  I slept twelve hours last night and could easily sleep three more right now.

Pain colors everything I do. It's been that way for as long as I can remember.  When I was a young child, my pain was emotional, and it's built upon itself for forty years.  It makes me think of the block structures my preschoolers sometimes build.  If my pain were a block structure, it would be incredibly intricate and strong; it would sway in the wind but never fall over.  And it would attach to my spine and spread outward of my body, reaching areas I didn't anticipate.  It would anchor in my neck and crawl upwards into my skull and outwards into my shoulders.  Some days it would spike downwards to grab onto my back and hips.  And if it wandered far enough, into my knees and down to my heels.

I suppose it's like living with another creature inside you; one that spreads itself across and against you, one that attempts to claim ownership of your body and mind.  Some days it nearly succeeds.  But some days it doesn't; it's forced to let go of its grip and to slither back into nothingness.  Those are the days I hope for.

But that day isn't today.

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