The Unexpected Blessings of Pain Management Medications

March 31, 2013 at 5:46 pm (Uncategorized) (, , , , , , , , )

It’s easy, sometimes, to get negative when you suffer from chronic pain. I mean, I’m almost afraid to open with that statement, lest my reader go “duh” and skip the rest of the post. I’ve written a lot here and other places about how my pain makes me angry, tired, upset, depressed, lonely, and frustrated. I’ve tried to includes some thoughts as to how it makes me happy, awake, contented, stable, connected, and calm; but it’s not hard to see how those times may be much fewer and far between-er.

I was having a chat with a friend who also suffers from some acute and chronic pain, and we were commenting on the effects of opiates on memory. It is very true that since I’ve been on the heavier opiates, and on a more regular regimen (rather than just taking them whenever things get really bad), my memory has gotten much worse. I’ve been lucky that I have someone in my life who helps me keep track of things, both physically – where the hell did I put that thing?!? I just had it three minutes ago!! – and temporally, like constantly telling me what time it is, even though I not only asked three minutes ago, but I’m sitting at my computer with my phone right next to me, both of which proudly display the time.

Now, granted, some of this is just Del being the peculiar creature he is. One of the tradeoffs of being a deeply introspective and mystical thinking sort, is that mundane and material things sometimes baffle the shit out of me. I have strong anxieties about every day things like filling out forms, or being on time. I get wrapped up in whatever I’m doing in the present moment, like highway hypnosis, only awakening when I realize I haven’t peed in five hours or I’m practically falling over from exhaustion or low blood sugar. Rave is excellent at making a plate of fruit, cup of tea, or whatever else I have been overlooking, magically appear next to me specifically so I can concentrate on whatever I’m working on and not deteriorate to a point where recovery takes longer than it should.

In a way, though, the opiates effect of making me much more focused in the present moment, is it’s own blessing. Sure, it’s annoying as hell when someone shows up at my door and I’ve completely forgotten we had made plans, but when it comes to things like having a meaningful conversation or working on an essay or devotional piece, people notice that I’m fully invested and hard to distract. Although, the distraction issue surfaces in a different way; if we’re talking about cars, and all of a sudden I see or hear something completely unrelated to cars, I might go off on a tear about this new subject and forget we were ever talking about cars to begin with. You might laugh, but when I think it’s important, I may jot down the subject of the conversation or the reason someone asked me to listen, specifically so if I get off track I can glance down and remember what I’m supposed to be talking about.

When I talk to people about meditation, one of the biggest hurdles they struggle with is letting go of the immediate past or the immediate future. They can’t relax into the present moment because their brain is too preoccupied with what just happened to them, or the thing they just read/saw/did. Or they might be fretting about things they could be doing instead of meditating, or get stuck making a mental list of all the tasks they need to tackle once this meditation thing is over with. I don’t have that problem, and I admit it’s partially due to the opiate’s effects on my brain. It might take me a few minutes to let go, but once I do, I almost have the opposite issue! I forget what I was just doing, or what I am supposed to be doing right after I finish. I let the thoughts and feelings of the meditation guide me to whatever I do next, which can be useful sometimes, but not so much when you have deadlines or pressing needs that must be addressed.

Overall, I am thankful for this opiate-influenced ability, though. It can be easier for me to let go of harmful emotions, if I just remove myself from any reminders of why I might feel that way. I can wake myself out of a ruminating state much quicker, and let myself get lost in whatever is more productive than sitting around bemoaning my current state. I can have fun tonight, even though I know tomorrow is going to be challenging in some way.

This is a big change for me. I’m a Libra, and one of the qualities we supposedly share is that we rehearse. Before I go to a party, I lay in bed imagining the people who are going to be there, and the conversations we’re likely to have. I play out what I’m going to say, and try to guess what questions they might ask and how I should answer them. Before each class I teach, even if I’ve taught it a hundred times, I take a quiet moment to look over my outline or notes and picture myself teaching the class. In fact, I can feel very flustered if a situation I’ve rehearsed in my head goes wildly differently in real life.

However, the opiates have softened this for me. Although I still rehearse, I don’t get so hung up on things happening exactly the way I project. I am quicker to tell myself, “It will be what it will be”, and not let myself get stressed over creating mental flow charts of “If they do this, I’ll do that, and then if they do this other thing, I’ll run off to the bathroom to avoid reacting to it where they can see.”. I can release my expectations and instead allow myself to fully experience the reality of what I’m engaging with.

This also helps me tremendously in my interpersonal relationships. Instead of projecting what I want or need onto someone, I can relax and explore who they really are and how they are different than the version I’ve created in my head. (Oh, come on, I can’t be the only person who thinks this way.) I can focus on someone’s crisis without getting overly distracted by my own feelings and needs. And honestly, people can tell me things in confidence, because unless it’s somehow shocking or important enough to leave a lasting image, I’ve probably forgotten it five minutes after you finished telling me.

It’s important to me to remember these positives, because the world is very good at reminding me about the negatives. People who don’t understand or experience chronic pain try to be encouraging by suggesting that if I try an alternate form of pain control, someday I might be able to “get off the drugs”. It is very hard not to be able to drive myself places, and the main reasons I don’t drive is because should something terrible happen, the amount of opiates I’m on would make me a liability. (Even though long term use obviously creates a level of tolerance, that won’t likely be taken into consideration if I get into an accident.) There are lots of reasons why the opiates limit me, but at the same time, they bring their own blessings and allow me to do and experience things I wouldn’t be able to otherwise.

Thank you, Mistress Poppy, for bringing pleasure with the pain, gifts with the sacrifice, and unexpected blessings among the suffering.

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You won’t like me when I’m angry.

July 18, 2012 at 10:00 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health) (, , , , , , )

Being sick makes me angry.

I think it’s the emotion I feel the most often in direct relation to my illness. I get depressed, frustrated, upset, but most often, angry. Really, boneshakingly angry. I get so mad I turn red, and shake, and can’t engage in polite conversation. I have to listen to loud music and feel like a suburban teenager whose every pore is screaming for something, anything to happen.

Sometimes, that’s how I feel. That even if things were to get worse, much worse, at least then something would be happening. I would be that much closer to figuring out what the hell is going on. Every time I get hung up on some other thing – like emergency surgery – I get even more angry. When that happens, something is happening, but it’s like your parents getting a divorce. It’s something, but it totally sucks and doesn’t make life any better.

When I get angry, my muscles tense up. I become hyper aware of my body, and every little pain seems that much bigger. My blood pressure and blood sugar go up. I am not breathing deeply, and I get lightheaded. I get nauseous and can’t even sip water without feeling sick. I start to get really worked up, and maybe I even vomit. My chest starts to hurt. I can’t make simple decisions. I fall behind in my work because all I can mentally handle is staring at moving pictures. I don’t stick to my diet. I can’t express how I’m feeling to my loved ones, even though they can easily see I am not doing well.

In other words, I get sicker.

These things have long term consequences. When I stop being angry and find a little piece of peace, my muscles ache from being tense for so long, or worse they won’t untense and I find myself with limited mobility. The things I do to control pain don’t work as well, since I’m hypersensitive. Usually that ends up leading to me in one of those bouts when clothes hurt and I end up having to sleep on fuzzy blankets and can’t touch anyone. I get intense headaches that come and go for days. My jaw starts to pop from all the clenching. My blood sugar control goes out the window and I end up using insulin. I have a backlog of correspondence and other work that I now have to face in a short amount of time. My loved ones are cautious around me and feel like they can’t come to me with their shit because I’m so lost in my own. But at least I’m totally up to date on the Glee Project, right?

It becomes a cycle. I get angry because I’m sick, I get sick because I’m angry, and then I get angry that I’m sick because I was angry. I feel like I’m always just this far from treading water. I either have to artificially reboot – cancel something and create some free time so I can catch up on the stuff I fell behind on; or I end up turning to those around me and begging for assistance. Well, that’s not entirely true. Another outcome is that I just don’t get stuff done. I stop going to doctor’s appointments, I stop answering email, I stop checking Facebook/Fetlife, I stop answering my phone, I stop engaging in anything that might, y’know, make me feel human.

I know what the answer is. I’ve always known. But it’s sort of like menstruation – I’ve been doing it since I was 18 or so (late bloomer) and I’m 37 and I still don’t always recognize the signs that its on the way. Because when I get lost in the cycle, the first two things I jettison are the ones that always end up helping me in the end.

Sleep, and meditation.

I’m never sure how to address the sleep issue. Stress gives me terrible insomnia. It’s never a good sign if I’m only sleeping 4 or less hours a night, or if I’m sleeping in 2 hour shifts. Now, a part of that is also related to pain – obviously when my pain is bad, I don’t sleep as well (often I have to sleep in a particular position, and if I move even a little I wake up). Sometimes I end up taking Alteril – an OTC mixture of melatonin, valerian, and l-tryptophan. I don’t like it because the next day I’m in a fog and lack motivation to do much of anything, which is kinda not the point. I used to take Ambien, but it’s expensive and I got to a place where I couldn’t sleep without it.

Meditation is another ball game. I’m a giant hypocrite, in that when I get angry, I stop meditating because my brain won’t shut up. And yet I tell people all the time that it’s better to sit still and breathe for five minutes even if their brain won’t shut up the entire time because it helps them create a habit of it. But as someone who is supposedly good at this stuff, I have a short temper with myself when I have to go back to basics all over again. Although really, that’s meditation in a nutshell. There’s really no such thing as “an advanced meditator”. Because once you believe you are, you’re not. It’s a Schrodinger’s Cat thing. But meditation is totally within my control. Even just taking five minutes to slow and deepen my breathing would make a difference. I just need to give a damn first.

Sometimes I just need to get out of my environment and do something different for a while. That’s not as easy as it sounds, because I can’t just run away and pretend my life isn’t happening in my absence – I might as well stay home and watch Law and Order if that’s the case. I have to both get out of my routine, but not abandon it completely. So events don’t count, since I can’t spend hours answering email and writing there. (I always think I can, and then I totally fail, every single time.)

So what do you do? How do you break out of your cycle of anger-stress-pain-anger? What coping mechanisms work for you? How do you enforce meditation when you feel like everything is fruitless? I’m all ears.

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Breathing in, Breathing Out: Tonglen

April 18, 2012 at 1:32 pm (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health, Tuberculosis (Inactive)) (, , , , , , , , , , , , , )

There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.

First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?

Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?

So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.

I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.

Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.

And then I let go.

My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.

I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.

It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.

When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.

You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.

I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.

I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”

Kinda like this.

For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.

Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).

But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.

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