Pain Management, Logic and the Mild High

In spite of the bummer of a title (and I can’t make it chipper and perky without employing some rather extreme suspension of disbelief), this is not supposed to be a complete downer of a post. It’s more about trying to find a way to be systematic and logical while working within a fairly chaotic system.

I have quite a few friends with chronic pain issues; by comparison, I’m fairly new to this (or am I? more on that in a minute).

My “magical wizard steroids” aren’t working so well any more, and the pain is back, although not as bad as it was pre-steroid.

There are different types of pain involved, and I actually have a little private glossary with terms for different pain, and a habit of trying to pinpoint which part of my internal abdominal cavity is affected. I’m using iPeriod as a pain diary (I mean, I also use it to track periods, but there are note sections, and ways to rate pain, so I’m all about that off-label use).

I have pretty good pain tolerance, too; and humans don’t remember pain well; this is why I started keeping a pain diary (which is every bit as gloomy as it sounds, but not nearly as Marquis de Sade as it could be. I’m sure there’s some delighted S&M author writing marvellous erotica for the kinky folks and calling it “The Pain Diaries”, but forgive me if I don’t google it). I don’t trust my memories of pain.

I have one parent with a substance abuse problem, so I question every decision to take painkillers – because the only painkillers I can take are narcotics. Paracetamol does literally nothing for my intestinal pain and NSAIDS (non-steroidal anti-inflammatories: naproxen, ibuprofen, diclofenac/Voltaren) are verboten when you are suspected of having inflammatory bowel disease.

I take the painkillers; they really help (they’re not perfect; with severe pain, they get rid of… some… of it); and they do make me slightly high. They used to make me really high, and I’ll be honest: that was fun, and felt like a consolation prize – but then I started to develop a tolerance.

I am writing in this roundabout way to put off describing the problem, but let me lay it out as analytically as I can.

  • I don’t want to take painkillers because they make me fuzzy and they are addictive and also I run out; which means I have to go back to the GP for a prescription; which means admitting that the treatment isn’t working; which makes me feel like a failure; which also makes me scared that the GP will think I have a substance problem (which she doesn’t, she is patient and constantly assures me that this is not something I should be worrying about right now. She is a fucking gem, I’m not even kidding). Also, they have side effects. Codeine slows down peristalsis and guys, I have a bowel problem. This isn’t great.

 

  • To deal with the fact that I don’t want to take the painkillers, I start inventing weird rules like “I will wait at least an hour to see if the pain goes away on its own” – and sometimes this actually works. The pain isn’t constant, really. Or at least, if it doesn’t go away completely, it wanes.

 

  • I also think a lot about “how bad is this pain? Can I work through it and tolerate it? Because if I can, I should.” This is not in a moral sense, but mostly because of (1) above. I can’t live on codeine. So I try to assess and analyse the rusty stabbing under my ribcage and the burning fiery cramps behind my navel. I try to put numbers on this. It doesn’t really work.

This system is, as you can see, a bit of a mind-fuck. I’ll run on this system for a while, and then I’ll start yearning to take painkillers – not because I’m desirous of the very mild high (although it is nice with the world the way it is running at the moment to briefly not care and not be terrified), but because I’m just tired of being in pain. I’m tired of trying to block it out and work through it, even though I can actually get away with it for a wild. I just want a fucking break from it, even though I don’t desperately need the painkillers at that point.

Here is the flipside:

  • a more scientific approach to pain management is to take effective painkillers at the onset of pain, as soon as possible. This is a hell of a lot more effective than waiting until it gets bad. This is what you’re supposed to be doing, at least for short-term pain. I’m not sure what the advice is for long term pain (as a side note, when I got sent home from the hospital recently after surgery on my hand, the doctor – who doesn’t know me – wrote “take two tablets every 8 hours” on the panadeine forte prescription and I LAUGHED AND LAUGHED AND LAUGHED because my running time is “every 4-6 hours, don’t hit max dose”. Every eight hours. HAHAHAHA nope).

 

  • Actually being in pain all the time, even when it’s just in the background, is an honest to god, bona fide mental health issue. It makes me I get bad tempered. I get frustrated. I get depressed. My creative juices dry up, my intellectual fascination shrinks to a pinpoint. I only get by focusing on the next thing and the next thing and I can’t look at the big picture or I just start crying. Also, I am not much fun to be around. I try to have a fairly tight, iron control on my temper and behaviour so I don’t make life unpleasant for the people around me, from co-workers to friends to Husband – and it’s exhausting. I sometimes just want to sit down and rant and say that it fucking sucks and I’m done with the whole mess, but I also want to stay positive… (not in a “toxic positivity culture” way, but in a “don’t give up” way).

 

  • I actually need to take the painkillers before I work out. As a person with hypermobility syndrome, I need to do a lot of core work, and also I run. Running is known to fuck with gut function, even for people with sensible and healthy and functioning digestive tracts. Running keeps me healthy in other ways, though, and I desperately want to keep doing it. Yesterday, I forgot to take drugs before I went for my run and I basically collapsed in a heap from pain in my last running interval. I pushed through until that point, and then I just… couldn’t.

 

So this is where I sit. I sit stuck between “I need to tough this out” and “I need to function” and I go back and forth. Some people don’t understand why I don’t take painkillers all the freaking time; and some people don’t understand why I take them at all. I don’t know how to find normal here, or what the benchmark is. I suppose I’m writing this to try and get it all out, and hope with fingers crossed that someone else with chronic pain issues will chime in and tell their own story and how they manage it, because I don’t get it. I feel like I’m living a half-life while I get this shit sorted out, and it’s just… balls.

Hmm.

My apologies, gentle reader, that was a bummer of a post. I’ll write about something else next time.

 

Burn This Homily* To The Ground: The Moral Virtue of Silence

  (*for homily, read “platitude” “trope” “so-called wisdom” or “widespread bullshit”)

There isn’t any.

NEXT.

Oh, wait, that was hardly the excessively worded deconstruction that I usually enjoying inflicting on my hapless readers. I suppose I should go into more detail.

Those who read my blog but haven’t met me might not be surprised to learn that I am frequently just as verbose in person as I am online. Those who know me on Facebook, but not really in person, will be aware that I post a good deal of banal bullshit on my own life (updates on pets, how much sleep I’ve had, how good coffee is, why adulting is so hard, all the exercise I’m doing, the fact that I’ve actually done laundry and now have clean knickers, why I’m having surgery yet again and yet somehow surgery can’t cure being a clueless git who gets herself injured all the time) in addition to the sharing of various political articles (the next person who says “echo chamber” to me is going to get… look, I want to say throat punch but let’s be honest: a violent temper in my case doesn’t equal actual violence and the worst I’m going to do is get enraged and glare at you, so let’s just imagine I am way more badass than I actually am, alright? NOW QUAKE IN TERROR YOU FOOL)… holy crap, where was I?

The coffee just kicked in. I am bouncy and alive and, given that I had surgery on my hand just over a week ago, involving a general anaethestic which generally drops me on my butt with overwhelming fatigue and literal chemically-triggered depression for 2-3 weeks, this is a miracle.

I like to talk.

I have a lot to say.

I don’t have much of a sense of privacy, except in a few key areas which will surprise no-one. I’m usually quite willing to discuss things that do surprise people – the only thing that gives me pause is making them uncomfortable (as some discussions do leave people thinking “Holy fuck, how do I respond to this? Was this a grave confessional?” and I wish I could just tell them, no, dude, seriously, I talk about shit, I talk about everything, I don’t really give a fuck as long as it’s not making you uncomfortable and unhappy). If things butt up against my “oh wow suddenly I don’t want to talk about this, that is such a weird feeling for me…” line, then generally I will say so (being a bit of a people-pleaser – yes, really – I’ll start out trying to soft-pedal a change of subject in the hopes of not having to shut down a particular line of inquiry).

People like to critique other people for sharing boring shit on social media. Here’s my response to that [link], but to TL;DR: filter and scroll on, my friend, this is an amazing superpower you have. I’ve had people admit to me that they’ve filtered me because I just post so much and then I look at their feed and realise that they’re incredibly selective about what they post; I often feel a brief moment of envy and wistful admiration that they can do that. I am just not built that way. I never have been.

I have, in the past, felt ashamed of being so open. It makes me vulnerable. I’m an easy person to hurt. It used to make me feel foolish, when other people invoked their right to privacy and managed to deal with their problems and their lives without turning it all into a GIGANTIC BREATHTAKING HILARIOUS TERRIFYING NARRATIVE that could be shared with all and sundry.

Because we do have a trope that very talkative people are foolish, or shallow. We have a strange sort of societal notion that really valuable people are quiet and thoughtful (as though those things have to go together, honestly). There’s a lot of “well, who needs to hear about that when there are more important things?” (scroll, my friend. Scroll like the motherfucking wind)

There’s a lot of “No-one needs to know everything about your life” memes. Well, no. But I also don’t see a lot of romance in shutting up, either.

There’s a lot of “Empty vessels make the most sound.”

Spare me. The fact that I’m caught up in my giant breathtaking narrative in no way makes me superficial. It just means I like communicating. I like telling stories. I like reflecting – aloud, for an audience. It’s how I roll. If it’s not your thing, that’s fine; I don’t get to tell people what they should listen to or receive. I was shocked when I realised that I’m not alone, that there are a tonne of other people out there who live inside this constant stream of consciousness, that it’s not a completely abnormal way to exist. What a huge relief that was! We are numerous. We are vocal.

We are storytellers.

I read a lot of romance novels, either of the standard present day drama setting or the science-fantasy/paranormal settings. I’m a big marshmallow when it comes to those sorts of things and I enjoy them greatly (when well written, at least. And plotted. And charactered. I am quite picky these days).

The romantic male protagonist (because they tend to be quite heteronormative, but I do read a few that aren’t) tends to be silent and brooding. The heroine (see previous parentheses) tends to have to guess at his feelings and desires. Even in well written ones, the heroes aren’t overly communicative. There’s an element of toxic masculine tropery in that, but it doesn’t just apply to the guy: it applies to the women as well. They tend to be relatively quiet. Often, the bouncy, babbly, talkative women are sidekicks, or immature teenage sisters, or best friends who are tragically marked for death (Scream springs to mind). And the bouncy, babbly, lovable talkative guy rarely gets to have his own triumphant story.

That’s not true of all genres, but there is a running pattern.

I want a talkative hero. I want a romantic sexy hero who never shuts up. Maybe he babbles and gets embarrassed, maybe he’s just bouncy and a storyteller, but he’s not brooding, he’s not uncommunicative, he’s not living in a silent well of sexy broody tragedy, he’s just – well – a talker. There are probably things he doesn’t talk about, maybe that’s where the hook is, but who knows?

We have this idea that people who talk, people who communicate well, hell, even people like me who communicate more or less constantly… aren’t interesting. They’re superficial. They have no rich inner life. I’m not sure why. Maybe there’s less for the reader/viewer to figure out (hey, babble is a defense in many cases; you know we’ve got plenty of mystery of our own, hmm?). Maybe it runs up against that vicious “show, don’t tell” rule which means a main character probably shouldn’t be too self aware.

I did in fact get told this would be lazy writing if a character understood themselves well enough to realise some of their own flaws and try to actively work to correct them.

What, characters can’t get therapy?

A lot of which is – by the way – about talking, and about giving yourself permission to talk, and to feel, and to be open in a safe space about a whole bunch of shit that previously you thought you shouldn’t bother anyone with or that you were overreacting about and honestly, in therapy, it doesn’t matter whether you’re overreacting or not – what matters is that you’re reacting, and that’s interesting, and why, and what does it mean, and does it help and what do we do with it now?

This post is about talking. It’s about telling stories. It’s about, yes, run-on sentences and poor grammar and firing off ideas as they march through my talkative, talkative brain.

And it’s about telling you, that if you’re one of those people who, like me, has so much to say, even about the little things, all the little things, and you’re tired of people implying that you’re shallow or stupid or boring because you have so much to say – it’s okay. It’s really okay. Seriously? The only thing we have to worry about is making sure we let other people get words in edgewise. It can be hard to learn to listen when you have so much to say all the time, and if that’s a problem you have, I promise, you can learn and work on it and it gets better. It doesn’t mean you have to shut up all the time, just pick your moments.

It’s okay to talk. Honest.

 

 

Dog Quest: Rehoming

We have a bit of a sad announcement to make. Some friends already know, but as I’ve been struggling to come to terms with it, and haven’t been prepared for any pushback to come my way, I haven’t put it on Facebook, so here it is.

We’re going to try to re-home Abby.

There are a few reasons for this, but before I go into it: this decision was not made lightly. This decision is heartbreaking. I question it every day when I look at her adorable little face; when her oddly truncated tail goes “thump-thump-thump” on the floor when she see us; when she cuddles into my lap; when she brings me the tug rope and shoves it into my hand because IT IS PLAY TIME NOW.

It all came to a head when Lestat died. Lestat died because Abby, while she didn’t get to do physical harm to him, literally scared him to death. He was too old and his poor ticker couldn’t take it. She got through the door while I was carrying something. She doesn’t do this to Michael, but I’m unsteady on my feet, and it’s obvious. After what happened with Jabba, there was a lot of self-recrimination. I was being careful. I was about to close the door behind me. She literally bowled me over to get to our old man cat.

We talked it over after the attack on Jabba, but we couldn’t bring ourselves to do it.

Here’s the thing: Abby is a lovely dog in many ways. She is 100% a safe dog with people. As far as I’ve seen, she’s gentle with kids (very limited exposure though). She is very clever. She is trainable, learns readily, is eager to please, very playful and an enormously fun, loving dog.

But she has a very high prey drive; and she is very anxious and reactive. These are not easy things to deal with, especially in combination. She has attacked another dog. She has attacked cats. She is a gun dog in a Rottweiler body (with the possible exception that I don’t think she would have good retriever instincts – as a side note,  she would probably train that well. It’s very easy to take stuff away from her).

These don’t make her a bad dog. They don’t make her a dog that wouldn’t make someone a wonderful companion – but that someone needs to have no other pets.

We’re rehoming her for Ridcully’s sake; that doesn’t require explanation. As far as Abby is concerned, he is a fluffy edible toy. Amos does not have this cat-eating impulse.

We’re rehoming her for Amos’s sake; that does require explanation. While he loves to play with her, she bullies him. We’ve been told this is “normal dog hierarchy”, but this is by people who haven’t witnessed it. I have seen normal dog hierarchy: pushing and shoving and wrestling and jealousy. There is a level of antagonistic interaction that is perfectly normal. This is not that. Amos sometimes hides behind me when Abby comes close. He won’t play tug rope if she also wants to play. Some days he plays with her happily. Some days he actively avoids her. She causes him high levels of stress. When she gets frustrated or anxious, she basically starts fights with him, which end with him throwing her off, snarling, and running away. Actual fights, not playing. Sometimes these require intervention. I have stepped between snarling, furious dogs more often than I’d like. Professionals in the field have watched Abby’s interactions with other dogs very closely and have admitted that they can’t figure out her triggers. She is fine with them. She is happy. She is playing. Then she is not fine, is freaking out, and needs to be removed.

Yes, Amos will mourn when she goes. Yes, he will need a higher level of interaction from us to compensate. We get that. We still think, long term, he will be better off.

We’re rehoming her for our sake. We have tried a great many things to deal with her anxiety – exposure therapy, medication, carefully managed “working distance” – but it is beyond our skill level and available time. I could probably manage Abby’s issues quite well if I did literally nothing else with my life. I take my responsibilities to my dogs very seriously and the constant stress and guilt of trying to manage Abby and make sure she is feeling happy and safe is exhausting; it’s making me miserable. The constant stress of getting her away from the door that keeps Ridcully safe is exhausting. Distract her so she stops barking. Redirect her stress into play. Put stinky goop on her paws so that her anxious licking doesn’t give her yet another fungal or bacterial infection. It is constant. When we want to take Amos for a walk (Abby does not like walks; it took us a long time to work out that the extra stimulus freaked her out and she was always eager to get back in the car and go home), we always have to think about what we will do for Abby. Leave her in the yard? Risk of over-stress and abandonment panic. Put her in her crate? She will feel safe, at least, but that means we can’t stay out longer than a couple of hours (I refuse to leave her in there longer than that, unless it’s overnight for some reason).

Ultimately, we’re rehoming her for her sake. This is not rationalisation. This is just fact. Abby needs to be an only pet – no other dogs, no small fluffies. She needs someone who can make sure she gets lots of playing and interaction every day (i.e., someone who is home a lot, like me, but who is not dealing with the dramatically fluctuating energy levels of chronic illness. She’ll bring me the tug rope and I will be prostrate on the couch and… sigh). Maybe a family with teenagers who will romp with her. She needs a dog-experienced owner. She needs a yard that has opaque fencing so that she can’t see into the other yards and get stressed about it (this is actually an important tactic for anxious dogs).

Living in our house – where she is in competition with Amos for attention, where she can’t get the stimulating interaction she needs as a dog with a high prey drive and energy level, where we have post-and-wire fences that mean she gets worked up by anything that happens in the neighbours’ yards, where she is constantly aware of prey items she can’t get to – it’s not good for her. It might actually be making her condition worse.

There is a family or owner out there that will be delighted with Abby. She has an extremely sweet, loving nature. She is a fun, playful, snuggly dog.

She is just not right for us.

In terms of pushback: please don’t suggest we are “giving up” or doing this lightly. We fucking adore this dog and have had her for three years. Please don’t suggest we haven’t “really tried” – you have no idea I swear to god. Please don’t suggest that the Amos-Abby antagonism is normal dog interaction – you haven’t seen it (a couple of friends have), and you may not have a benchmark. Please don’t say we’re abandoning her or betraying her – I already feel like that is the case, and we have gone through this mental space so many times. Keeping a dog out of guilt isn’t going to make for a happy home either.

I wish things could be different. I deeply regret this, and the necessity of it, but when I picture her in a home with an experienced owner, as an only dog, happily playing tug and bouncing around in a yard that is all her own, I feel an overwhelming sense of happiness and relief. It will be hard to find the perfect home for her, but I’m sure it’s out there.

The ease of kindness and imagination

This post is not about the big, challenging sort of kindness – the sort where you take lots of time out of your day, or dedicate your life to volunteering, or donate large swathes of money and time to helping people who need it. This isn’t about the huge passionate kindness that understands the kind of cruelty that drives so much of the world and seeks to address it.

This is about small kindness; and it relies – I realise now – on imagination. It requires only tiny sacrifices, and yet I think perhaps the fact that they are so small is what makes it so difficult for some people, because they are sacrifices of self-image, in a way: seeing yourself as the better person, the wronged party, the one who sees things as they are.

I don’t need imagination to know what it’s like to be that person, because I have been – and doubtless will be again – a judgemental, self-righteous prat. I think people who haven’t been are in the minority.

That teenager taking a posed selfie out in the street? Bloody narcissistic kids. Or…

…their friend’s going through a rough time, and they know this will make them laugh.

…they’ve not been able to leave the house in a week and here they are, and goddamn, it’s an achievement that deserves to be posed and celebrated.

…they really enjoy it and it harms no-one.

That woman with the screaming baby who won’t take it out of the café? Selfish bloody parents, right, only thinking of themselves and their spawn? Or…

…she suffers from post-natal depression and desperately needed to leave the house and see other adults and talk to a friend.

…she knows that if she waits five minutes, kidlet will self-soothe and it will be fine, and she’s going to give that a chance to happen.

…she is actually deaf, and doesn’t know at all what screaming baby sounds like (not common, but does actually happen!).

That person driving slowly in the right line?

Is about to turn right, and is slowing down for the turn.

That person with their headphones on who misses some auditory cues?

Is autistic and needs to reduce sensory stimulus in their environment to avoid physical pain.

People who are blocking the path outside a store?

…maybe just navigated a large group of people and are working out when they can move without walking into someone.

Yes, I get it. You’ve had a hard day. It’s been a long one. Maybe you’re tired, and you don’t deal too well with loud noises yourself. It is hard to find patience when you’re at your wit’s end, when you have your own problems, but I find that when my patience has run out, my imagination is still running full steam.

I can usually imagine, well enough, what a person might be going through to cause them to behave in a way that I somehow find objectionable. I can generally find a pretty benign explanation; and somehow, when that happens, when I find that explanation, something in me eases. The tension, the frustration, the judgement – it just loosens. That person is just trying to get through the challenges of their day – challenges I know nothing about – in the same way that I have to.

Yes, I get frustrated by people driving 10-20 below the limit in the right lane – until I see the indicator go on. Then I’m embarrassed, because I’m the arsehole.

Yes, I get distressed by loud screaming babies in echoing cafes. I actually can’t filter that noise out, and it goes straight down my spine and rips my brain out through my ears. My whole body stiffens up. It’s painful. I hate it. I can’t fix it or change it. But that is not anyone else’s fault. It’s for me to bear, and since most parents really do take kidlet for a walk after a few minutes, or the kidlet actually settles, it’s not a big deal. I’m not selfish enough to assume parents must remain housebound.

Yeah, I’m mystified by selfies too. It’s not my generation. I don’t quite get it. But then, my dad’s generation don’t quite get me either, and I wish they’d extend more patience sometimes, so I roll with it. It’s also none of my business.

There are things I can’t find enough imagination to excuse. Bigotry, for example. Body-shaming. Failure to do head-checks before changing lanes and nearly side-swiping me (oh, the adrenaline. So much adrenaline). Actual rudeness. People being mean to get the laughs. There are things which are not okay.

But the small stuff? You don’t need patience. You just need imagination.

I write this post to make sense out of something that happened to me a few days ago. It was incredibly upsetting, and it did trigger a spiral into depression and insecurity that I’m still fighting my way out of, because it woke a few of my sleeping serpents (they lurk in that portion of neural tissue referred to in scientific parlance as “the jerkbrain”).

I squeak when people surprise me.

Sometimes it’s just a jump and a gasp. Sometimes it’s a shriek. That’s pretty rare these days.

It’s an overdeveloped startle reflex, to call it one way. To call it another way, it’s a conditioned fear response to unexpected stimulus. Let that sink in.

It’s partially borne of my tendency to hyperfocus; when I’m focusing on something, I only see that thing in front of me. I am not aware of changes in the external environment. This is part of how I’m put together – I’m not neurotypical – and it is in the basic architecture of my brain. It is not changeable.

Because of this state, a lot of the time, all external stimulus is unexpected.

Now, if the external stimulus is, say, my phone, I will be surprised, but I won’t jump, gasp, squeak or shriek. I might startle in some way, especially if it’s a particularly shrill sort of noise.

If it’s a human being unexpectedly approaching me, I have a fear response. This part is a legacy of some life experiences I don’t wish to address in more detail. Unexpected touches, unexpected speech – if I’m in hyperfocus and think I’m alone in my space (this is key), I will be scared. Even if there are other people around and I think I am functionally alone (i.e., I’m not expecting anyone to touch me or speak to me), violations of those expectations will frighten me.

This is irrational in one sense – none of these people wish to hurt me. It is entirely rational as far as my brain is concerned, though, because it was a reasonable association to form, over time, for many years. In fact, sometimes even if I’m prepared for it – if I know someone is going to playfully poke me in a certain way – it will still happen. I don’t claim to understand the process fully. I can steel myself and be determined not to let it happen, and it will often happen anyway, and deafen surrounding people in the process. It’s hard-wired.

I do not, in any way, hold people who make me startle like this responsible. I’ve thought about it a lot, and there’s not anything they can do to avoid it. I don’t mind the playful approach, either – it makes the whole thing fun and lighthearted, which is a gift when this reflex comes from such dark and painful origins. People can joke about it, in a warm friendly way, because it’s a weird quirk, and that’s fine. I laugh it off and make fun of it, because that’s the easiest way to smooth over an embarrassing issue that can’t be changed and is too personal to explain in public.

It gets better over time. It’s taken twenty years for it to become something as mild as it is right now. A full shriek is rare these days.

It’s annoying for the people around me. Most people don’t like sharp, loud noises, be it out on the street, or in an office or laboratory environment. It’s a little disruptive. I’m aware of that, just as I’m aware that it’s not something I can control, or change. I can talk myself down afterwards, sure – I usually don’t need to, because “so-and-so isn’t going to hurt me” is patently obvious – but I can’t actually talk myself down ahead of time.

I used to feel really guilty and embarrassed about it, about how silly it all was, how juvenile it made me look, how disruptive it was.

I actually managed to let go of that. Feeling guilty and embarrassed solved nothing. It wasted time and energy I could spend on other things.

A few days ago, a co-worker took it upon themselves to deliver a full lecture on this particular quirk of mine. I explained that it was involuntary, that I had tried to control it for over twenty years with no success, and considered the matter closed. I was told to keep trying. To try harder. I was told this was a childish idulgence; that it was manipulative. I was told – and this puzzles me – that people will ignore it if I’m not careful (“But… I want people to ignore it? That’s actually the end goal?”). It was basically made clear to me that, at thirty five years of age, all I needed was some plain talk to overcome my juvenile behaviour and bring me in line and re-wire my trauma response.

Here’s where imagination and kindness come in:

I don’t believe that it takes much imagination to come up with many reasons why a person might have an over-developed startle reflex; and it certainly doesn’t take much imagination to find that a good subset of those reasons are really, genuinely awful and personal. I can find dozens and dozens of reasons in my own story-telling brain that aren’t “they’re doing it for attention” or “they think they’re super quirky” or “they just don’t care that it’s disruptive.”

It is the work of mere seconds to come up with this.

The conversation should have stopped when I said “This is involuntary. I cannot fix it.” Instead it turned into a diatribe on my inability to control my response to some of the most painful and scarring events of my life, events that have changed me irrevocably; a diatribe on my inability to change the hard-wiring of my brain; a reminder that I don’t quite fit in, in spite of years of hard effort and work and therapy and research and personal sacrifice; it was a scathing indictment of the effort I put in to heal from the past and just be human.

To the speaker, I imagine they just thought there were delivering their plain talk, on something that annoyed them, for which they imagined there was a very simple solution: stop doing the annoying thing. But there was no imagination there; there wasn’t a pause to come up with an alternative explanation, to consider that I might actually be telling the truth about my own state of mind; and because there was no imagination, there was no kindness.

I talked at the start of this post about the small sacrifices that need to be made for this sort of kindness. In reality, sometimes it’s so small that it’s enormous.

You have to sacrifice the idea that there is always someone to blame.

When you stop blaming people, when you can imagine what might have led to this situation, it is a lot easier to be kind.

A Tale of Olfactory Memory Triggers

A few years ago, when I was first toying with Paleo as a concept (before I did some digging and saw some logic fails, and long before I realised that the reason it worked so well for me was because of carbohydrate absorption issues), I tried to make cauliflower rice.

Brilliant, I thought. I’ll not only be able to replace my delicious rice with a low-carb, grain-free alternative, but I’ll manage to get some veggies into me at the same time. What could go wrong?

I diligently grated the crap out of some cauliflower and set it to steaming. The kitchen filled with the smell of steaming cauliflower as I turned my attention to the other dish that was going to be accompanied by it (I don’t recall what that was, now).

In the space of about five minutes, I went from a mellow, excited person who was experimenting with food in a safe space (remembering that I have some anxiety about food), to a bottomless pit of rage, despair, fear and panic. Violent anger. Nauseated fear. Misery. On the verge of weeping. In fact, I did start crying.

“What the freaking hell?” I sobbed to Michael.

And then I realised: I don’t have good associations with the smell of steamed cauliflower. As sensory triggers go, smell is known to be almost overwhelming in terms of triggering memory, and for me, the memories of that smell are associated with some really unpleasant times (long story I won’t be telling here). It is a visceral, deep response, bypassing the logic centres entirely. I was actually embarrassed. What a benign thing to be triggered by!

So. Steamed cauliflower was out.

Years later, on the keto train, I decided I really wanted a rice substitute. As it is, I do the maths and allow myself really small amounts of rice, but I always want more, so it’s an exercise in frustration (delicious, delicious frustration).

Today I opened up a pack of cauliflower rice from Woolworths (thus obviating the necessity of me “ricing” it myself and thus having to clean up something where the smell might cause days of misery), and decided to fry it. The Parent very rarely fried things, and never vegetables, so I thought perhaps the smell wouldn’t be an issue. I sniffed the packet, and it was… okay. A bit uncomfortable for me. But okay.

I used toasted sesame oil, which is both delicious and strong smelling. I quickly scrambled some eggs to add in, to dilute the flavour further. I added generous helpings of soy sauce.

Fried cauliflower rice with egg and soy sauce, I thought. This is brilliant. Admittedly, I was a bit anxious. The smell was creeping through the sesame oil a bit, but maybe it would be okay.

I had a mouthful, prepared to spit it out and go cry in the corner.

Hmm.

I chewed thoughtfully.

Not bad. Probably a bit too heavy handed with the soy sauce, I thought to myself.

If I put the fork under my nose and inhaled, I felt awful. If I didn’t inhale, and just ate it, it was fine.

“Victory!” I declared. “And over time it will get easier and better. Exposure therapy! Desensitisation! Low-carb alternatives! Yes, this is where it’s at.”

I got through half a bowl before it caught up to me.

Now, it’s not so bad that I’m having a panic attack. It’s definitely a diluted effect. But I can feel the muscle tension crawling out along the base of my skull and along my shoulders; I can feel my stomach tightening; I can feel a little adrenaline kick as my fight-flight rears its cautious head.

And I scrapped the remainder and tossed out the cauliflower rice.

Cauliflower, it seems, is not for me. Somehow, I’d feel better about it if I simply didn’t like the taste; that’s easier to explain to people, and I suspect that for the most part that is what I would tell people who ask in the moment, since I am very self conscious about my limitations with food (whether it be the low-carb requirement or the sensory processing issue or simply anxiety about trying new things with an audience).

But it’s not the problem. The taste was fine.

By the way, this is also why I don’t do roasts…

O Bendy Gymster: Running on the spot (metaphorically)

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”

-Red Queen, Through the Looking Glass.

 

This is not a post that is actually about weight training, but that’s a good example to start with. Then I’ll get to the running metaphor. Then I’m going to vent like a motherfucker.

When I talk about weight training, sometimes someone will ask out of curiosity how much I bench. I always pause before answering, because in spite of the fact that I’m not competitive about this and that I do believe the only thing I should be competing against is my own record, I feel embarrassed that I’ve been training in various ways for this long and not cleared 40kg.

Some of this is because my training is interrupted frequently; and some of this is because my joint issues mean it is actually more dangerous for me to test my max weight/reps than for most people (connective tissue injuries ahoy!), so I don’t do it often.

Most of this is because my muscles have to work twice as hard as those of most other people (not mathematically literal, by the way, but they do have to work harder) to do the same thing, because a good deal of muscle strength and tension in every movement is dedicated to holding all my bits in place. Most people have useful ligaments that do that for them.

For example, when I undertake a bench press movement, I spend a lot of time setting up. After experimenting with various positions, these days I use heel drive and a carefully curated upper back arch for my press. Force is passed through the lower body and up through my core to brace. My medial glutes (I think, sometimes hard to tell) are involved in making sure my hips – which are under mild tension, because the bench parts my legs a bit – don’t “flop out”, which would result in the wrong muscles taking the strain. Therefore they’re already sort of pre-fatigued (physio people will have better language for this) before I try to pass force up the chain.

Then there’s the shoulders. Shoulders are a fucking complex joint. They’re not even really a joint. It’s a joint system. Their complexity is a source of enormous frustration to me, because when they feel loose (usually the right one, for some reason), it’s not a matter of just tightening a muscle to pull them back into position. I have to roll the shoulder – a huge roll – to try and reset; then try to pull inward (how do I describe this) and back down using muscles across my chest and upper back, and simultaneously tighten my lats to bring it down and under. And I’m a person with poor proprioception and limited feedback – I spend ages finding these muscles. I will sit there, with my eyes closed and my right arm out to one side, feeling around inside my nerves to work out how to control the bits of me that get my shoulders into position. I must look very odd.

Then I can press. While maintaining exactly the right amount of tension across every single one of these muscles.

And if I don’t do it right, I get impingement problems. I get bicep tendinitis. I yank things.

That means that these muscles are already pre-fatigued, at least from a nervous system viewpoint, which is an enormous (and sometimes under-discussed) part of strength training.

Most people (a) don’t have collagen problems, and thus can trust their joints mostly to stay put and (b) use their stabilizing muscles instinctively, as part of a well-coordinated nervous system.

After every break from gym, I have to re-teach myself all this. At my last workout, I nearly cried in frustration. I managed two reps at 35kg, and I should not have done the second one, because I could feel the weakness in my right shoulder, which just refused to set properly.

That fucker.

I’ve been away on fieldwork. It was an amazing experience. I had to break keto – intensely. I worked long days. I was in pain. The steroids are helping. I have many wonderful stories to tell, because I had adventures and they were fantastic and important and I would do it all again three times over, but it did break me. Four weeks of insufficient sleep, really hot weather on one trip followed by icy rain on another trip, bad diet (for me), sleeping in a tent for that last week, and long days of hard work meant that I came home so exhausted I could barely string sentences together, and with my joints and gut so inflamed that I could barely stagger from one end of the house to the other, and I absolutely could not do it without groaning. I took serious painkillers for joint pain, which I never do, because I save those for my abused small intestine. When I did that, suddenly I could think, and walk straight.

I broke myself. As I said, I would do it again, and while I was on fieldwork it wasn’t so bad because I was busy and excited and could ignore it and just soldier on, but as soon as I got home and relaxed, everything broke.

I went for a run the other day. I’m not silly – I decided to ease back into it, so I wound my training program back three weeks.

I still couldn’t do it. I got through two running intervals and, while my cardio was perfectly fine, my muscles were like noodles. Burning noodles on fire.

A bit of experimentation has shown me that the strength of individual muscles is just fine; but the stamina, the endurance, the ability to sustain stress over time and repeated movements, is destroyed. This is expanded and compounded by the fact that, as stated above, they also have to keep my joints in, and they have to work very hard to do that while running.

To put it another way: I can do one bench press at 35kg just fine. I can do one of everything (that I usually do – pull-ups still escape me), no problem.

And if gym and running and fitness were just idle pursuits for me, just things I did to stave off the inevitable heat death of the universe – I mean, myself – that would be a bit frustrating, but okay.

Except they’re not. These are things that I do, not only to stay sane, but to stave off pain and fatigue. I need to have a good base level of muscle strength and sustained tone, or my joints will hurt – sometimes a lot – and I won’t be able to move much without at least a background level of ache. I need to have decent cardio in part to counteract my background levels of fatigue. I need to make walking around easier for myself because every extra physical stress I put on myself magnifies exhaustion.

Because, cry me a river, I know, but I work so hard at all this just to stay functional. When my schedule and health allow, I work out 5-6 days a week. Running, weights, pilates, hiking, diving, occasional swimming… They’re all a part of my general regime.

One glimmer of excitement and fun is the rate of progress and improvement. I will get more fit, I will increase my strength. I will be able to run longer and easier; I will be able to lift more heavy things; I will be able to do more in my life because of this.

Not this year.

This year… this year I’ve been running on the spot.

2016 has sucked for a lot of people for a lot of reasons. For me – ignoring world events just now – it’s been health bullshit. I’ve bounced from scan to operation to scan. I’ve been sick and inflamed. I’ve been fasted and exhausted. I’ve spent cumulative months recovering from anaesthetics (I’ve had three general anaesthetics and two twilight sedations this year), which always destroy me. I’ve had multiple scans that require a certain amount of prep, and it can take up to a week for me to recover from them. I’ve spent an increasingly ludicrous amount of time in moderate to severe to actually screaming pain.

I’ve had to break keto far more than I’m comfortable with – remembering that I’m on that diet for good reasons, like reducing the stress on my inflamed small intestine and keeping insulin low and generally reducing inflammation. Travel for work (and on a couple of occasions, for fun holiday! Not complaining!) has meant that I’m constantly swapping in and out of keto, and while it’s good to be metabolically flexible, generally speaking to get benefit from keto you want to be in that zone for at least a month.

So: pain. Inflammation. Interruption.

Back in May, I could run 6-7kms. That was my limit and it was hard and it was more of a stagger at the end, but the future looked bright, because I was training hard and extending my distance.

Now I can run for one minute intervals.

This year, I have worked my arse off to stay healthy, to get healthier, and not only has that not worked, I am just working twice as hard to stay where I am. I have sweat pouring off my body, shaky limbs, wobbly joints, and I’m pushing myself to the point of exhaustion just to not get worse. It takes a sacrifice of time and energy, and that’s time and energy that could go towards writing papers or other professional obligations, social obligations, keeping the household ticking over smoothly, even creative work. I prioritise hours and hours and hours every week to do this so that I can get better, so that things can get easier – but this? This just feels like bullshit.

I’m not giving up, but I am being honest about how horrible it feels to try and claw my way back to where I was a couple of years ago.

I work out and I want to cry because of how hard it is, something that used to be so easy, something that brought me so much joy, something that made me better able to face the world from inside my slightly idiosyncratic body.

Diagnosis Roulette: Cautious Optimism vs O FRABJOUS DAY

So far, in 2016 I have had:

  • surgery to correct an abscess
  • an MRI, recommended by a doctor at the outpatient clinic after the surgery who was horrified that no-one had ever actually tried to figure out why I’ve been getting regular abscess since I was fifteen (implied: “The A.F.? Your GPs are all hacks?”)
  • an “examination under anaesthetic” combined with an extremely minor incision to correct the proximal cause of that particular abscess
  • A colonoscopy to look for signs of Crohn’s Disease in large intestine (possible ultimate cause of abscesses): clean.
  • Another MRI to look for signs of Crohn’s Disease in small intestine (possible ultimate cause of abscess): clean.
  • Blood test to look for signs of Crohn’s Disease (when advanced, it causes various deficiencies): clean (in fact, my B12 is amazeballs)
  • Stool test (sigh) to check for signs of inflammation: came back borderline. Definitely over the “normal” range, but not comfortably in the “holy crap, something is wrong with your crap” range.

At this point, I took a break. I’m reasonably sure that “Diagnosis Fatigue” is a real and common problem, and I was so tired of being told that everything was more or less normal. I’d spoken to a colorectal surgeon and a gastrointestinal surgeon and a gynaecological surgeon so far and there were no solid plans or answers.

I went on a holiday, diving in Vanuatu. I mostly stuck to keto, except when I was on holiday. I was in pain more or less constantly, but the nausea and fatigue were much worse when I ate carb-heavy meals. I went to a conference in New Zealand. I signed up for another year of national committee service, about which I feel conflicted as I have been too exhausted, sore and miserable to do much productive work on that.

The pain steadily got worse. I put some of it down to endometriosis, which I’d been diagnosed with in 2012. I’d had a laparoscopy, which had corrected the endo, and had a year or so of much easier periods, and just figured it had come back.

So I got back into the game, because who needs to put up with that shit if there might be answers? I girded my loins (there’s a pun in there somewhere), and picked up my Diagnosis Bat (it’s like a cricket bat, but way more metaphorical), and went back to my specialists.

In the second half of the year, I’ve had…

  • A second laparoscopy to correct endometriosis. There was no endometriosis. My intense period pain can potentially be attributed to gut issues (they interact in a fairly intense way – particularly if one is an inflammatory disorder. Any inflammatory disorder can potentially make your periods hell).
  • …another poop test (SIGH).
  • A CT scan of my small intestine (mmm, delicious barium sulfate): clean (the tech thought there might be a small region of “narrowing” but it wasn’t certain and my surgeon thought it was probably just peristalsis).
  • A gastroscopy: small spots of inflammation spotted in jejunum (first loop of small intestine). Biopsies taken. Biopsy came back clean.

These last two procedures happened very quickly, largely because I went back for another consult with my G.I. surgeon, and in contrast with my previous consult I was able to say with some confidence that I was literally in pain all the time. The previous appointment, a few months prior, had merely involved being in severe pain intermittently.

We’d progressed from “intermittent” to “all the time.”

While all this was happening, I was more likely to become nauseated after eating, no matter what I ate (again, less nausea with high fat foods). I was more likely to get what I refer to as “stabby pain” which needs to be distinguished decisively from “burning, cramping pain.” The latter is really awful and is constant. The former is genuine agony, which last week rose to indescribable heights and I would have ended up in the Emergency Department if I’d been able to think clearly instead of just sitting on the couch crying and screaming and upsetting my dogs.

My G.I. surgeon is a lovely man. I had no troubles about reporting pain, and at no point did he assume that “I can’t find an obvious cause” correlated with “the pain is all in your head” (which happens to a lot of people). He has taken this very seriously at all turns, and he also knew I was about to head off on fieldwork (I fly out tomorrow), and some action needed to be taken. He was comfortable diagnosing inflammation in my small intestine, regardless of what the ultimate cause might be (still could be Crohn’s. Still could be something else, although names for those Something Elses escape me presently).

He prescribed me 9mg Budesonide.

This is a corticosteroid that is mostly processed in the liver (about 90%), so unlike prednisone, the excess drug doesn’t just wander around causing systemic side effects. It’s much more target specific in that sense. The drawback to this is that it takes a lot longer to take effect. Prednisone can result in improvement within 48 hours. Budesonide takes – on average – 10-14 days to kick in.

I have been dutifully taking my three capsules, half an hour before food, every morning when the alarm goes off. I’ve been curiously watching out for ‘roid rage and mood swings (got a wee bit manic a few days ago, but there could be alternative explanations for that).

This was before my horrendous “stabby pain” (which I am cautiously and relucantly putting down to possible pancreatitis or gall bladder issues secondary to the Undiagnosed Inflammatory Issue, as the pain profile matches exactly, and also this is why I am not drinking alcohol of any kind for a while because I am just too scared of that happening again).

Today is Monday. On Saturday night, I was out at a show with a friend (Matilda. It was awesome). I was in quite serious pain – not hospital-level pain, and not “stabby pain” but serious pain – throughout the entire evening. I took some Panadeine Forte and it took the edge off it a wee bit, but the burning cramping agony was there, in the background, until I went to sleep that night.

Saturday was day nine of the Budesonide regime, and I was starting to reluctantly conclude that it wasn’t working. My mood was starting to plummet. I’d had a pretty awful day on Friday as it was, and this was making me feel a bit hopeless. I was struggling to maintain any kind of psychological equilibrium.

Sunday (yesterday) was a reasonably good pain day from a gut perspective. I had a lot of joint pain and inflammation and fatigue, so it was hard to really assess what else was going on. There was stomach pain, the kind of pain I’ve come to think of as “normal” rather than the increased levels of the day before.

And I’ve taken three pages and over 1100 words for a recap. Why are we re-capping, Kate?

We’re re-capping because I woke up this morning with no pain at all.

Alright, that’s a slight exaggeration. My ankle feels a bit sore, my lower back is still strained from an injury that took place about a week ago, and my left hip is wonky, but I have no belly pain.

None.

Zip.

Nada.

I noticed this when I first got out of bed.

I then ate actual food. No nausea. No pain.

I drove into the city with Husband in the car and marvelled, occasionally changing position, hunching, straightening, shimmying (look, if you don’t dance in the car, what are you doing with your life?), taken deep breaths and holding them, exhaling sharply, basically doing everything I could to compress my abdominal region to see if there was pain.

Nothing. Perhaps some very faint, mild tenderness on the left, under my ribcage.

It could all go to shit (pun intended). I could be wrong. This could well be false optimism. I am trying not to get excited.

But… at day eleven, of a drug regime that takes 10-14 days to take effect, I have a very sudden cessation of gut pain.

I don’t know if this is diagnostic of anything other than “You had inflammation and now we gave you steroids and there is no inflammation.” I don’t know if this means we can say what caused the inflammation – whether it’s Crohn’s located more deeply in my ileum than the gastroscopy could examine (apparently he managed to look at a good 80cms of intestine, but with 4.2m of ileum, that leaves a lot of mystery), or whether it’s some other cause.

All I know is that I am not in pain and it makes me staggeringly happy.