Tactical Shift

Pain Spectrum – Low red. It has been a busy few weeks
BM/RD Index – 15
Fuzz meter – 4

Sorry to have been away for so long. My K and I had a busy (but wonderful!) few weeks, filled with family events. Two lessons learned: it is possible to do a lot if you rest a lot, and delegate, delegate, delegate.

Neither of these things comes naturally to me. My K calls me the energizer bunny – I always push myself to go and go because I know that I am usually worthless when I finally stop. But we had A LOT of stuff going on these last ten days, more than I’ve had to tackle, really, since the car accident, and there was no way I was going to be able to pull it off without some serious revision in my plan o’ attack. So I forced myself to rest. I excused myself often to take naps, and acknowledged that I was not up to most of the day trips. When we had guests over, I let my SCBFs do the bulk of the shopping, the prep work, and the clean up, while I mostly sat in one place and let our guests come to me. It all felt rather Grande Dame-ish, but shockingly, I am actually out of bed and feeling relatively okay. Hmmm – I don’t know if the Energizer Bunny is a good nickname any more – but don’t anyone start calling me Auntie Mame just yet, please.

So, to all you Chronics out there - how do you handle regulating your pain and the resulting exhaustion come crunch time?

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New post on raves & rants

Pain Spectrum – Pure yellow. I could go either way today.
BM/RD Index – 10
Fuzz meter – 5, but this level might have more to do with those drinks last night than with pain. Heh.

A new post over on raves & rants today: “One Small Rave”.

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Pride and Shame

Pain Spectrum – yellow alert
BM/RD Index – 25
Fuzz meter – 4 mild fuzz buzz


There is an outstanding article by Orhan Pamuk, “Freedom to Write” in this issue’s New York Review of Books. While reading this article last night, I was struck by a leitmotif running through it: that of Pamuk’s “mutual pride and shared shame” when dealing with his fellow countrymen in Turkey. Pride and shame: the words jumped out at me, striking a raw chord much different than the one the author intended.

Coincidentally, later that night, my K and I got into a tiff concerning the impending visit of his parents. This trip (a rare one) does not concern us. They are here to see their grandchild, and will stay with K’s older brother and his wife. We are the periphery. We will host a nice dinner and make a few trips to Brooklyn; we might even take them sightseeing for a bit. No one expects us to do much more: this is an impromptu trip, K is very busy, and I am, well, sick, as everyone knows.

I get agitated almost every time we see K’s parents. His parents come from family lines that pride themselves on strength, and I am definitely not strong, at least not in ways that I feel that they value. Consequently, I think we just make each other uncomfortable.

You know what – those last couple of lines? All bullshit. K’s parents value me and care for me very much. This is my problem. It is my pride that says these things, so that I do not have to own up to how ashamed I feel around them. I picture myself through their eyes and all I see is failure and a lack of strength. I am a horrible daughter-in-law, my shame says. I tricked my K into loving me. I am nothing but a parasite, and a poor mate for any man to bring to his family. So I rail at trying to meet up with them, because I am ashamed that their son chose to stick with me, and too proud to admit it. Pride and shame. They pricked me into a stupid argument last night and then kept me up as I tried to come to grips with them.

I wish I could say that this problem surfaces once in a blue moon, when we meet up with the in-laws, but I am beginning to realize that I am contantly wrestling with these emotions. The truth is, even after all these years, I am ashamed of being ill, of hurting all the time. I don’t want to be seen like this. I dread the stares I get on the street, much less at a party where I know people. The temptation, then, is to let my pride mask my shame, to stay at home and feign disinterest. What makes this worse is that staying home is often the right thing to do. Nowadays, I am often in too much pain to do very much for too long - ah, but the key word here is often. Often, but not I think, always. I am quite sure that I have at times let pride trump pain. I worry now that I am becoming a recluse, refusing to go places because I am too proud to let others see how much I hurt; too shamed by the fact that I can no longer mask the pain and its toll on me the way I once could. Pride and shame – they can destroy you as much as pain and depression. At least I see it now. The problem is, what to do about it?.

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You get what you need

Pain Spectrum – high puke green, with some yellow flashes, but we did a lot yesterday, so I am very happy with this level.
BM/RD Index – 8
Fuzz meter – 3 very mild fuzz buzz

In our household, the stereo is always on: news, music, podcasts - you name it, we play it. No surprise then that I have a soundtrack of songs that take me through life. Different moods have different playlists, and my roster of must-hear songs changes all the time. There is one song, however, that stands above the rest in my pantheon of song greats- the Rolling Stones “You Can’t Always Get What You Want.”

This song inspires me, but probably not in the way that Mick Jagger intended: I might be in pain, but I am not worried about getting my next fix. I love the refrain, however.

You can’t always get what you want
You can’t always get what you want
You can’t always get what you want
But if you try sometimes, you just might find
That you get what you need.”

These words are a mantra for me. They remind me, often when I am at my lowest, to rejoice in my life and be thankful for it.

I spend a large part of everyday in front of the computer, and if I am not writing, I am surfing the web. I’d like to say that I spend all that time bettering my mind, but that would be bullshit. I do what most other people do: I poke around places and I plan and I dream. That fabulous looking eco-lodge in Costa Rica? I could do that. A walking tour of Greece? Ditto. Or how about that great new restaurant downtown, or that swanky new bar? That 400-dollar doodad? So want it. Most of the time, K or another one of my SCBFs (hi Bro B!) will drag my head out of the clouds (I bought the doodad while no one was paying attention). For the longest time, this really pissed me off. What right did my guys have in telling me that I can’t do or buy what I want?

I’m sure you see where this is going, but I will spell it out anyway: what I want is oftentimes not what I need. As a matter of fact, what I want would most likely destroy me or leave us destitute (or some combo of both). But while most of my wants are unrealistic, they do serve a purpose if I pay attention to what they are trying to tell me. I just spent three weeks straight staring at far off places - perhaps I’m feeling a bit housebound? The answer isn’t a trip to Greece, however: a great day around NYC will do the job just as nicely. Staring longingly at restaurants and bars, and wishing I was well enough to be fabulous? Time to break out the grill and bring all my fabulous friends to me. There are plenty of ways to make the house feel fresh without blowing our savings; most of the time, my longing for new things is just an attempt to mask that I am feeling trapped at home, and should be recognized as such. (Yeah, I have been definately feeling housebound lately. Thank goodness it is spring!)

This isn’t a perfect system: I still really want to go to Greece, and eat out and, umm… I can’t actually justify the cost of most of the household stuff I covet. But just because I can’t do all the things I want to do (either right now or ever) doesn’t mean that I can’t have a great time doing those things that I can. And I think that is always worth singing about..

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Mercutio

Pain Spectrum – pure red for the last three days, in varying degrees.
BM/RD Index – 28-30. Feeling pretty blue.
Fuzz meter – pretty fuzzy, so please excuse any meanderings today.

This past week saw an all-too-common occurrence in the New York Tri-State Area: the fluctuating weather pattern. Wednesday and Thursday were beautiful, balmy days full of the joy and promise of summer. By Friday night, the temperature was dropping fast. Saturday came the rain, and the cold. And with that came the pain. Plans? Finished. I spent the weekend huddled either on the couch or the bed, in various stages from mildly comatose to knocked-out sleep. The pain has been pretty bad. The sun came out for a bit and the pain levels began to alleviate, but this morning brought thunderstorms and more pain. The sun is finally coming out now, but today marks day three, and I’m shattered. I didn’t always react so strongly to the weather, and hopefully, as I build my strength back up from that car accident from a year and a half ago (more on that in a later post), I will stop being such a human barometer. But it does beg the question: how much does where we live effect how we feel?

I do not have a good answer for this. I have lived in a variety of places in the world, and all of them had weather conditions that varied from not so good to pretty damn crappy for much of the year – long winters, humid summers, lots-o-rain – that sort of thing. New York has been the best of a bad bunch. I have had many people suggest that moving to a drier, or at least more temperate, climate could do wonders for the pain. This would seem like a simple problem. Time to move, right?

Well, no. I love NYC. My family is here; K works and goes to school here. The city is compact and relatively easy for someone of limited mobility to negotiate. There is a tremendous diversity of culture, and much of it is free for the taking. The weather here may not be San Diego constant, but when it works, it is glorious.

From what I have read, the verdict is out on this. For every one report that says to those in chronic pain, “You must move!” there is another claiming that it makes no real difference. I have always believed that one’s level of overall happiness plays a big part in this. We all know how closely tied depression and pain are to one another. I am happy in the here and now. It would depress me to move away from so much that I love, and surely that would impact my pain levels, regardless of the weather?

Suspect reasoning, I know. Either way, I have always managed to avoid giving the weather theory any real test, but this may be about to finally change. K and I are going to be taking a trip that, owing to a series of circumstances that could only be family related, will force us to be in the Northwest over the New Year 2007. Rather than spend yet another vacation in the cold and damp (I honestly don’t know how we always manage it), my SCBF has come up with the brilliant idea that we jet down to Southern California, a place that neither of us have been. SoCa, were it is always warm, and mild, and at least in the winter, relatively free of humidity. In other words, point zero for my so-called perfect weather.

I do not want to go. The very thought of it terrifies me. It is, as I see it, a lose-lose scenario. If I feel consistently better while we are there, then I will have to at least give the idea of moving away from my beloved city some consideration. And if the weather does me no damn good? All these years, like it or not, I have kept the idea of the magical land of perfect weather in the back of my mind. It has always been there for me, a balm when things get really rough; the idea that we could always move to better weather. It would be another myth destroyed. And I do not have many of those left. So, do we go, or do we stay? Perhaps there has been a reason for all those trips to the cold places after all.

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The Push-Pull

Pain Spectrum – dull green traveling up to light yellow flare
BM/RD Index – 22 (I have a headache; hence the yellow flare-ups)
Fuzz meter – mildly fuzzy

These right now are mostly for my SCBF (Stupid Crazy Beautiful Freak) K, who has asked me to write (and post!) a bit every day saying how I feel and what I am thinking about. This is my first attempt, which makes today’s topic very, well, topical: the Push-Pull.

The Push-Pull is a balancing act that never stops. I need to push myself to do just about everything, as I think most people do when every action is a painful one. And pushing is good; it gets me to exercise, to go out and enjoy the sunshine, to cook a nice dinner or pursue a challenging project. Push too much, however, and I collapse. I then have to spend a fair amount of time pushing all the more to get back to the same mental/physical point I was before I pushed too far in the first place. As I get older (and yes, the car accident has definitely made things worse) the points back from the collapses keeps on getting harder and harder to reach. This, of course, scares me. A lot.

Fear is not necessarily bad, however, because this is where the Pull comes in – it is the rope that brings me back from the precipice before I go to far. Pulling tells me to take it easy, to let someone else be in charge. Its when I tell myself it is okay to sleep a bit late, to just sort of loaf for a bit to build my strength back up. But pulling too much is as bad as pushing too much. Too much pull and I stagnate. Misjudge the pull, and before I know it, that nice walk in the sunshine is not going to happen unless my K is there pushing me in a chair. So then in comes the fear again. And the Push.

It is a very fine line that I find myself falling off of all the time - in both directions. Two decades into this dance and I still haven’t gotten it nearly right. Which is why my push often looks more like a lurch, and my pulls come off suspiciously like yanks. I realize that the problem of balance in one’s life effects both Chronics and Spors (Spors - Sporadics, i.e., normal people, without pain. But no one is ever really normal, right? Just like everyone has felt pain more than once in his or her life. Therefore - you guys are sporadic. Spors. Please, do have fun with the name association thing). So, then how do you handle your Push-Pull?

PS – why is the Push-Pull so topical? Can’t think of anything more fear-inducing right now that posting my thoughts to a web page. Even if no one is reading it yet. The result called for a rather large push.

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WTF? Where to go when you want to know

The skinny on what the other pages are for, and what all those made up words and phrases mean. Like making up words? Want to see another discussion page? Wonderful - suggestions are always welcome and appreciated!



bm/rd index: The blue meanies and the red devils. A rating index of depression that runs from 1 to 50.

It is a fact of my life that pain and depression go together. I believe that it has to do with the way that I am hard-wired, and I am willing to bet that there are many others like me out there. Even at my happiest I can never escape being in pain; ergo, on some level I am always a bit down. Depression is a subtler beast than pain however, and is much better at hiding its claws as it digs deep into your psyche. That is where the Index comes in. It makes me evaluate, every day, how bad my sadness is.

Why blue meanies and red devils? Well, I tend to be a bit of an angry depressive. Besides, the whole concept is a bit monstrous, and I always feel that it is good to laugh your demons away. Here’s my rule of thumb for the index:

1-15: great day, barely even aware that the BMs are around.
15-25: mid-level bm day. Little bit sad, little bit mad.
25-40: volatile. Most of the time I am only suffering from high-level bms. Every so often, however, the red devils start to attack. I could go from grumpy to nasty in a nanosecond.
40-50: red devil territory. All SCBFs should run for emotional cover.

btw – I seriously hope that I am not the only chronic out there whose depression is not only pain-related but has a sharp sting to it. I would love to hear how others deal with it, or how you deal with depression in general. What type of barometer do you use?


chronics: People who are in pain all the time. The degree of pain can vary (and I sincerely hope that it does) but it never goes away. Ever.


fuzz meter: A ranking of concentration ability from 1(great) to 10(sucks). Ah, the fuzzies. Those tiny little tribbles that periodically try to take over my brain. I have been battling these little monsters since first becoming ill, and am still am not sure if they are illness related, pain-related, or a mixture of both (as with the bm/rd index, I would love to hear from others about this). Simply put, there are days when my brain refuses to work, where my ability to think becomes fuzzy. Fuzzies generally come out with higher pain levels, but not always. Sometimes they just appear on their own. The thing about fuzzies – when they are around, there is no getting rid of them. Rest can shorten their stay but nothing can make them simply vanish. It is good to remember that the fuzzies are not always bad; after all, fuzzy-sharp pain is better than sharp-sharp pain. But by and large, fuzzies stink; because when the fuzzies are high, I become the mental equivalent of a slug. Ugh.


medicine cabinet and tool chest: The medicine cabinet is the place to talk about meds that help with pain; the tool chest is for everything else. Exercise, meditation, alternative medicine – you name it; if it is not a manufactured med, it goes there. I hope that both of pages these will become places where people can discuss and ask questions about the two ways of battling pain: with medication and without. Splitting them up like this is for practical reasons only: I do not believe that the two are mutually exclusive, nor will I engage or promote a discussion about whether to medicate or not. Everyone responds differently to medication and treatments. What works for one person simply does not not always work for another. Yet I believe that any chance to alleviate one’s level of pain should be looked into, even if it doesn’t ultimately pan out. Think of these pages as suggestion boxes. The more that people share what works for them, the better chance someone has of finding something new that can help.


pain spectrum: My version of a pain scale, which is color-based. See the picture and note on the left.



raves & rants: This is the place to let it all hang loose. Really bad day, where the pain is all-encompassing and you are stuck screaming in your head? Rant it out here. Woke up and feel like you can (relatively) conquer the world? Great! Spread the news here.

The hardest thing for me to do is express how I am feeling; I mean, so what if I am not feeling well - like what else is new? But deep down, even I recognize it is essential that chronics share how they feel. Being honest about what my pain feels like and how it is affecting me on any given day is an important process for me, and for the SCBF’s who love and care for me. That is why I made the pain spectrum, the bm/rd index, and the fuzz meter. Sometimes, though, just gauging the pain isn’t enough. Sometimes, you just have to scream it out. That’s what the rants are for. It is also really important, however, to celebrate and to share the good days with people. Plus, a list, a mantra of what made it a good day, of what makes life beautiful in general, is so important to have when the pain is bad. I find them to be a lifeline. My raves give me something to cling to until the worst of the pain attack recedes.

So then, rant when you need to let go, and rave when you need to remember. Added bonus: chances are pretty good that around here, someone else will read it and truly understand how you feel.


scbf: stupid crazy beautiful freaks. The people who love and care about chronics. (And yes, family members count as SCBFs, too. Just because they are blood doesn’t mean that they have to care.) SCBFs have given themselves a thankless job. Caring about (and for) a chronic is difficult, to say the least: I do not know about the rest of you, but I give “high maintenance” a whole new meaning. Besides, how hard must it be to see someone you love always in pain and know that there is nothing you can do to fix it? Yet these wonders of the world do it anyway; hence their name. I thank the powers that be every day for granting me so many SCBFs in my life.


spors: The rest of humanity. From sporadic, because as the song (sort of) says, “everybody’s gotta hurt sometime.”

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