Thursday, August 27, 2009

And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.

I can't do this either. Except that I am. Except that I have to. Because there's no other choice.


Crazed Mom said...

Why do steroids make the pain worse? Does Zach compensate with other/adjunct pain meds when you are on steroids? Would knocking you out(Diprovan anyone?) be feasible?

Sounds like you have explored most complentary pain relief therapy. Ever try TENS? Water therapy? A lobotomy? Yes, I know I'm sick and twisted. (Worked for Jack Nicholson so I'm just saying....)

You know I'd take your pain from you if I could or if that was possible in some way. Love you girl. You are always in my heart and on my mind. Gentle non owie hugs just for you.

Anonymous said...

yes people have said that to me too. I never thought of it in that way (that they think it is a choice) but i have thought that the comment does assume there is something specially strong/different about me and the way i cope - and there isn't - i just have the "chance" to demonstrate it! I am just doing what everyone else does faced with the same challenges: their best to cope... I hope you can get a break from such intense pain soon...

Never That Easy said...

CM - There is no "why" with what I've got - at least not one that the doctors understand. So I just kind of have to keep track on my own. Yes, there were stronger pain meds, but there's not much left for me to try, and I'm kind of leery about taking the 'big dogs' unless I can't breathe because of how bad it hurts, since I know that means there's nothing else out there for me after them.

I do know you'd help however you could - but I'll pass on the lobotomy. ;)

Thanks Ashy, I am feeling improved today, thankfully.