Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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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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