7:32am December 28, 2012

Lots more about pain.

So yeah. As described, I was in much more pain than I thought I was.

I get so confused. The more pain the more confusion, until I don’t know I exist at all sometimes.

And it’s confusing to know what to do. How much to say before people say enough is enough, get better or else. Except I’m not getting better very quickly.

And that would bother me so much less without the expectations. I can remember back before my first nerve block. When trigeminal neuralgia and central pain had combined in this unholy union that had me regularly contemplating suicide.

And I was lucky. I was lucky to have a friend who let me live on her couch. I was lucky she’d do all-night movie marathons to give me any distraction at all before I fell asleep from sheer exhaustion on her bedroom floor.

And I remember the short-term numbing meds they gave me to test and make sure it was the right nerves. And I remember all three branches of my trigeminal nerve being in constant agony. But they numbed one. Just one. And it was like the world had changed.

Suddenly I was a part of the world. I was connected to things. It was amazing. And then. And then the numbing meds wore off. And I felt like a huge door between me and the world was slamming shut and locking. And I was just trying to find a way to peer through a tiny window in the door. And I couldn’t stop crying.

My friend said before that she didn’t know chronic pain could be traumatic. And she’s no stranger to pain myself. But she said my eyes changed, suddenly a thousand-yard stare instead of whatever they looked like before, and she knew what that meant. She did her best to make me feel better but I felt too distant to feel anything. Which was almost worse than the pain.

I was thinking about suicide constantly and trying not to let on. I knew a psych ward would be terrible for me in that amount of physical pain. Only my closest friends knew. And they also knew I didn’t really want to die. I just wanted the pain to stop. I knew I was going to receive treatment. But I still kept getting these urges to jump out the window. I held on just by living moment to moment, because the urges were so far against what I actually wanted. Sometimes the brain starts sending out those impulses when people feel trapped in a corner.

Since then I’ve had several other time periods where my pain level stayed 8 or above for the most part. Most of my hospitalizations have been like that.

Severe delirium, for me, is always accompanied by severe pain, often even a 9. It’s pain you can’t run from, can’t do anything about, and in my case can never localize. I feel it everywhere and nowhere at once. My DPA had a brain injury once and she thinks that since delirium is brain damage, maybe it causes the same weird kind of pain she felt when she was recovering. A kind that doesn’t seem to be any specific place but is so severe it just consumes you. At any rate, I spent a long time with that pain at the hospital, with nobody doing anything about it. I was often unable to communicate so they ignored me.

I can’t describe how it changes you. It’s like being ground down every second. You survive because you have no other choice. Not because you’re tough. Just because you literally can’t do anything. You can’t even think well enough to plan anything at all.

I’m afraid of it still. Sometimes I remember it and start crying like I’ll never stop. I remember the parts of me, walled off. I suddenly fear those walls. And this feeling of exposure to everything in the world, like I was shattered to pieces and the world came in the cracks. Or I was disintegrating and blowing away into the sky and was I dying?

And time seeming to act weird. Crawling by at a snail’s pace but suddenly missing hours and days and weeks. That was one of the worst parts because it made the pain seem forever. At that point, the only thing I could turn to was a wood carving of Sekhmet my friend gave me. She has a well-deserved reputation for fierceness – but that fierceness and toughness is what you need when you’re in so much pain you think it will break you forever. And somehow it worked. It was the only thing that got me through experiences that felt like they were destroying me. I don’t care if the intense, somewhat intimidating lioness who took care of me while I was in the hospital was a delirium hallucination or real on some level – She did for me what no human being was able to do and I can’t possibly not be grateful.

And so that’s where I’ve learned to turn when things get that bad. And it’s got me through the worst of the last… however long it’s been since the nerve block. Again I experienced a 9 on some days, complete with delirium and passing out before I could reach ten. There’s a point past which all I can do is ask a god for help. And they do help. The pain stays, but I get through it a little better than I had been doing. They help me stay connected to the world.

This doesn’t mean I don’t pay a price for being in this much pain all the time. I wish I could describe that price better. I don’t want anyone to feel sorry for me, you understand. I just want people to understand that pain isn’t something to take lightly.

Sometimes I feel like parts of my body belong not to me, but to pain itself. Pain does its best to destroy my relationship with my body – with myself. My mind starts shutting off large chunks of itself that would normally be there. My feelings get warped. My entire life, I’ve had a personality partially shaped by pain.

Sometimes it makes me feel strong. Sometimes it makes me feel weak. Sometimes I cry, sometimes it hurts too much to cry. Sometimes all I do for hours is lie down curled up in a ball. Sometimes I snap at people who don’t deserve it, at home or online.

Often I distract myself by constant mental activity until I can’t anymore. Like reading or watching videos. And then when I can’t anymore… my body is flooded with even worse pain, from head to toe, and I can’t do anything about it. Sometimes I dissociate. Sometimes I become delirious. Sometimes I pray. Sometimes I do my best to reach out my mind to the best parts of the world. And sometimes I can’t do any of those things, and just wait until the most hellish part passes.

Why am I writing this? Because pain is a secret. People don’t want to know, and people become afraid to tell. People hide it from friends, lovers, family, and doctors. People are taught that only the weak admit to pain. People like me – disabled people – get taught to hide our pain to make caregivers comfortable and convenient, and are taught that it is never as bad as it actually is until we ourselves believe it. Some people commit suicide rather than seek pain treatment because doctors treat them like criminals for seeking help, and because many doctors involved in end-of-life care don’t know some really basic information about how pain medication does and doesn’t work.

Many of my close brushes with death come down to not showing pain. The same is true for lots of other people with developmental disabilities.

But on a personal level.

I want to be able to reach out.

I want to stop feeling like I’m bad if the pain doesn’t go away fast enough.

I want people to stop treating me like my pain is best out of sight, out of mind. Leaving me with only a tiny support system to handle it with me.

Like I’m weak for admitting pain, when actually I’m so tough that it’s almost killed me several times.

When people wait for it to be over. I’ve had it my whole life. It will never be over. It gets better or worse but never gone. But people act like if we don’t get better fast enough then there’s something wrong with our character.

The worst is reading stuff by bad medical professionals. The ones who don’t want to deal with the fact that pain exists, so they turn it against their patients.

One guy (not my doctor, just a guy I know online) said, “I used to work in a pain clinic. I stopped after I realized that my patients refused to get better until they got their secondary gain met.” Secondary gain is a term that means something like, you get something out of an illness or injury, ranging from workman’s comp to sympathy. And a lot of medical professionals who can’t deal with the reality of pain, blame all lingering pain on the patient getting something out of it. Rather than realizing that pain treatment is not always going to be effective.

It enrages me. Most of my friends and family have chronic pain. And we don’t get a damn thing out of it but misery. Misery we don’t want, even if it somehow magically got us all sorts of material and social goodies.

Which by the way. It doesn’t. People don’t give you sympathy if you have chronic pain, even if I wanted it. Chronic pain makes people without it uncomfortable. And instead of admitting that, they take it out on the person who is in pain. Especially in societies that encourage selfishness and a survival of the fittest attitude. Or worse, that messed up new age idea that we all choose our own destinies.

But I’m tired of hiding.

I’m tired of downplaying it everywhere I go. And yes pretty much everything you hear from me about pain is downplayed, not exaggerated.

It’s not that I want to make myself hyper-aware of it by talking about it constantly – that can make pain worse. But I want to be able to be realistic when I’m near the end of my rope. I don’t want every conversation about pain to be filled with terror. If I’m in enough pain terror only makes things worse.

I want to be able to be part of the world with my pain. It’s not a part of me I enjoy but it’s part of me. And I’m always, always afraid to say how bad it is. Even when it’s literally a matter of life and death.

And I want people who know me, to know this part of me too. Not just the good parts. Not just the better days. But also the days I can’t do anything but lie curled up in a dark quiet room and cry. And the days when it’s too bad to cry. And the days when all I want is someone to sit by my bed and silently understand that I can’t type but I still could use the company.

And I want to have friends who are there even if it never gets any better, even if it gets worse, who won’t blame me. And for people who aren’t friends – but who at least understand. And for people to not find me useless even if I never write another essay on disability rights or other political topics ever again. Who can let me be human and weak without trying to force me to be anything I can’t be.

I still remember how shocked I was. I was getting a nerve block and there was a long wait before I could get the procedure done. And I told them I didn’t mind waiting but could they tell me how long the wait was because if it was more than five minutes I’d need to lie down on the floor. I was trying to do everything I could to accommodate them and shape myself into something they could deal with, even with searing pain.

So imagine my surprise, when they said “This is an emergency then” and went and grabbed everyone they needed and did the procedure immediately. They actually understood that a person whose face hurts so much they can’t sit up, is in need of immediate treatment, not just a floor to lie on. I am used to accommodating everyone else about my pain and they accommodated me instead, and I was so surprised and confused.

I’m still perpetually surprised when things like that happen. And I know I shouldn’t have to be.

And I know that most people see hiding pain as a virtue and showing it as almost… sinful or something, even if they’re not religious. Medical professionals are no exception. And it shouldn’t be this way. It isolates people with severe chronic pain, makes us sound weak, contributes to all kinds of problems, even threatens our lives. And untreated pain is actually terrible for your health but people who don’t get treatment are praised, people who look for treatment are often treated like criminals unless we are lucky enough to have a kind of pain that responds best to non-narcotic medications like Lyrica. And people scrutinize us for that elusive secondary gain we supposedly are all getting, even if they’ve never heard the term.

The reality is most people with severe chronic pain are telling the truth, even downplaying our pain. And it’s other people who seem to get secondary gain out if denying our experiences.

I want to live in a world where we don’t have to be afraid, to hide, to pretend it isn’t happening. Where people take us seriously. And where people help us if they can, even if it’s just emotional support, instead of doing that thing where if we don’t get better there’s something wrong with our character. I want this for all of us. That’s why I write about what the experiences are actually like, and try to be less afraid than I’ve been this whole time.

Now of course I’m completely worn out beyond… anything. I’d better post this and get some sleep before I see the doctor today. And I’m going to tell him exactly what things have been like lately. And maybe I’ll try and stop subtracting one to three numbers from my pain rating.

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