Sick But Not Sick Enough

I am both fortunate and unfortunate in the challenges my body has thrown my way. On the one hand, I have confirmed Crohn’s Disease of the small bowel and (semi-diagnosed) Ehlers-Danlos syndrome (hypermobility type). I have Seasonal Affective Disorder (I get miserably lethargic and non-functional in winter). I’ve had endometriosis.

These are not good things.

But on the other hand:

  • I am cashed up enough that we can afford tools to mitigate my S.A.D. (sun-lamp, sunrise alarm clock, redecorating to make house look bigger and brighter and so that more light reflects off surfaces, also going on holiday to warmer sunnier places in winter).
  • My endometriosis case fell into the two-thirds of cases that actually are resolved with a single laparoscopy. I no longer have symptoms.
  • My EDS is a moderate presentation (partly due to the fact that I was a sedentary kiddo and thus did not accumulate long-term connective tissue damage like a more active kid might have done. This is a feedback loop – moving was awkward and painful, which is why I was a sedentary kiddo…) so I can do a lot of things that more severe sufferers cannot. Even more, we’re financially secure enough that I can afford to work casual/part-time so that I have more time for the extra exercise and sleep required to manage EDS. And we can afford physiotherapy, clinical pilates, gym memberships, etc. without worry.
  • My Crohn’s Disease is solidly in the “mild” category. It’s only in my small intestine. It’s scattered. There’s little to no scarring, only limited narrowing, and no real risk of obstruction. I don’t have chronic diarrhoea. I don’t need a stoma. I can still absorb enough nutrients (not efficiently, but I can do it). Mild Crohn’s is still no picnic: I am in pain all the time when I’m not taking something to manage that pain, I have secondary carbohydrate malabsorption due to my inefficient gut, sometimes I feel nauseated after eating (less so when I’m on keto), and currently I’m dealing with monstrous fatigue issues possibly due to B12 absorption problems, but otherwise, I’m dandy.

Number four is the topic of today’s post.

Since my diagnosis, I’ve been on the following drugs to treat the Crohn’s (I’m not listing pain relief here. That’s a whole different post):

  • Budesonide EC/Entocort. This is a corticosteroid, much like prednisone, but with many fewer side effects because it is largely processed in the liver. It’s distributed through the lower small bowel, terminal ileum, and upper colon. These are the most common sites for Crohn’s to affect, and some of my inflammation sites are in that area (all in the ileum though, not the colon). I’ve been on the maximum dose (9mg/day) for over a year. Surgeon Sam thinks it’s not doing much, and he doesn’t want me on corticosteroids for no reason, so we’ve tapered that to 6mg in the last month. My pain seems to be worse though, so I will report back on that front.
  • Imuran/azathioprine. This is an immunosuppressant, also used to treat leukaemia. I took it for ten days and developed facial redness and scaly skin, which apparently means it’s a sign you have an allergy or intolerance and you can’t safely take it. Well, bugger.
  • 6-MP/mercaptopurine. This is the pre-metabolised version of Imuran. It’s associated with more side effects, but can sometimes be effective when Imuran doesn’t work or isn’t tolerated (the reverse is also true). I took this for about a month or so, and then it turned out I was producing nearly four times the level of toxic secondary metabolites that humans can tolerate. So I had to stop that one.
  • This is another immunosuppressant, but it operates along a different pathway to the other two. I had monster nausea the first time I took it, which is not uncommon, but as soon as I started smashing the supplementary folate, it went away. However, when I was away at sea for a month, I developed extensive and bizarre bruising. Now, I’m uncoordinated, and I was on a boat, and I’m also on corticosteroids (see (1) above) which can weaken capillaries a bit. EDS sufferers also bruise very easily due to our wacky collagen. Given these profoundly confounding factors, it’s not entirely certain that the methotrexate (or mtx to the in-crowd) was responsible for the bruising, but I was away at sea, so – via email – my surgeon advised me to stop taking it.

Right now, I’m taking a tapered dose of Budesonide and that’s it.

The Budesonide is not working. It barely takes the edge off. So, if I’ve tried Azathioprine, 6-MP and methotrexate, and none of those seem to be safe for me, what’s left?

Well, there are a few other treatments. Very powerful, scary, effective treatments.

It’s just that they’re also incredibly expensive. We are talking ludicrous numbers. Now, I live in a country with very good socialised, single-payer healthcare, and I’m used to benefitting from that. However, the budget isn’t endless, and Medicare (the Australian version) won’t cover these newer treatments unless you are very sick. Basically, my Crohn’s has to be much, much worse before I’m able to be treated with these medications.

It’s good that I’m not sick enough for Remicade. I don’t want to be that sick.

But I also don’t want to be untreated. Crohn’s Disease is a progressive condition. Even if you’re asymptomatic, it can progress and do a fair bit of damage to your digestive system (which is why “controlling it with diet” is a bit suss unless you’re also being regularly tested and checked out for inflammation). If I leave it long enough, I will get sicker. The inflammatory patches will spread. They will get more severe. The pain will get worse. I will develop other symptoms and side effects I currently don’t have to deal with (everything from internal fistulas and abscesses to painful skin rashes to gall bladder issues and even to bowel obstructions).

And then… then I’ll get treated.

At the moment, we’re trying to avoid that outcome. I’m scheduled for a ketamine infusion in ten days to treat my chronic pain (visceral hyperalgesia). I’ll be in hospital for a week. If that goes well (or even if it doesn’t), I’ll go and see Surgeon Sam afterwards, and we’re going to try putting me back on the methotrexate – only this time, we’ll be monitoring my liver tests weekly. This way, we should be able to work out whether the bruising was caused by the mtx or not. If not: sweet. I can stay on the mtx.

Hopefully, I can be on a medication long enough to find out if it’s actually doing anything, because there’s the possibility that mtx might be safe for me to take, but might also not effectively treat the Crohn’s.

One sad undertone to all this is that I really would like to have a kid at some point, and Budesonide is a teratogen and methotrexate is an abortifacient. So my only real hope of doing that is to get into remission and go off the meds. It’s possible. My Crohn’s is mild, and remission is definitely achievable.

Right now it’s a frustratingly distant possibility. I’m 36. I haven’t got forever.

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Confessions of a Language Pedant

Above all else, I prize precision and clarity in communication. I delight in capturing an experience verbally in a way that makes sense to me. I am horrified by imprecise, confusing language. My head aches and my stomach rolls when I try to untangle twelve line sentences filled with an excessive abundance of dependent clauses (there’s a reason I only studied law for one semester. I’m convinced judges don’t know how to end sentences, so they just keep going and hope nobody notices).

I used to prize writing my texts and emails and social media updates with the same sort of language I use in my blog, in fiction writing, in scientific writing, in academic essays: expressive and precise. I can never quite manage concise, but I take precise to be a requirement. I would use full stops. I would capitalise appropriately. I would not use “weird, made-up words”. I would cast severe shade on people using “u” and “ur” as actual tools of communication.

I’m over it.

Over the last ten years or so, I’ve witnessed the same thing so many have: the rise of a multitude of technology-inspired dialects. First inspired by slow typing and awkward phone keypads (remember having to press a button three times to get the letter you wanted?), and then spreading like wildfire when smartphones appeared. Perhaps the typing got easier, but by that point we were used to the shorthand.

Pundits opined the decline of literacy, and while on the one hand I felt a bit confronted by this new vowel-reduced stream-of-consciousness, I also felt that this was – to put it bluntly – a bit of a pointless wail. Rapid communication in one form does not in any way preclude being able to write precisely in another. If I say “I’m gonna lose my shit” aloud, it doesn’t mean I’m unable to write “I’m actually getting quite angry,” should I need to communicate more formally.

It took a little longer for me to pick the other problem: there’s a huge amount of privilege in being able to correctly and precisely employ standardised written language. A good amount of it is class privilege (education-based); some of it is able-bodied privilege (it is very hard to take time to type accurately on small phones if you have, for example, crippling joint pain in your fingers; and it is hard to mentally structure sentences if you have chronic pain affecting your concentration; not to mention learning disorders).

Did I really believe that those people who didn’t have access to my advantage – not the least of which was my ability to absorb language and grammatical rules like a goddamn sponge from a ludicrously young age – had less of a right to be heard?

No. No, I did not. For a little more effort, I decided, I could translate some confusion in punctuation and capitalisation (although I have trouble when people use giant walls of text. I can’t parse that. My brain has its own quirks that require a bit of kindness, and one of those is a desperate need for whitespace. In the absence of whitespace – that is, appropriate use of paragraph breaks – I get completely lost).

There are certainly limitations. Punctuation and capitalisation exist for a reason – the sentence structures of English can be extremely convoluted, and common examples (such as “Eat, my children!” vs “eat my children” and “helping my Uncle Jack off a horse” vs. the alternative sentence without capitalisation) readily highlight the problem. We’ve standardised the written language for a reason, and the reason isn’t to be a complete snob about grammar: it’s to aid in communication and understanding. And yes, I get very twitchy about inappropriate apostrophe usage (or lack of apostrophe when needed), but I have learned to just quietly correct them when reviewing papers and move on.

It is all very context dependent. Certain modes of expression are hilarious on Twitter but useless in a formal email. If my friend texts me “so fkn drnk” I know exactly what she means – and even, to an extent, can read a mood through the sort of text dialect she’s using – so I don’t care. At the same time, I’ve read text messages from employers that make zero sense due to their inability to figure out how to insert a comma, and emails from other employers that sound like they’re shouting at me because they are so internet-clueless that they don’t realise USING ALL-CAPS IS ACTUALLY VERY RUDE.

There is still a value to standardised, precise language. At the same time, and to use a bit of a hackneyed phrase, language is a living thing. It evolves, and it does so rapidly. Whether social media has accelerated the pace of that evolution or whether it’s simply accelerating the geographical spread of those changes is a question that I’m not in a position to answer. I’m not saying anything new here: numerous people have come to the same conclusion.

One very important example – at least as I see it – is the use of the singular “they” pronoun. Far from people whinging and wailing about the grammatical awkwardness of it, it seems to be that it is less of an imposition on standardised language than the rate at which we currently generate new words, the rate at which we “verb nouns”, to the point where people honestly have entire conversations in meme-speak and emojis (I do love a good emoji sentence. It appeals to me on a very basic level. I find it inherently hilarious, because it subverts expectation).

Add in other people’s preferred pronouns – be it xe, ze, etc. – and I’m now just starting to think of them as little sub-names, not too much different from a prefix or a suffix. It’s not so different from the fact that I’m technically called Doctor in some contexts, and Ms in other contexts, and I have the luxury of a nice, easy, binary pronoun: she/her (good morning cis privilege, we haven’t spoken today!). It’s a little identifier. We can change our names. Why shouldn’t we have some say in our other identifiers?

What I’m trying to say is that the labels we give ourselves, the labels we give each other, the labels we give things out in the world, and the way we structure our communications – these things are always in flux. They have always been in flux. Somehow, the human animal manages to keep up very well. Throw us a curve ball in language, and we might blink and scramble a bit, but generally speaking, we’ll catch it. Everything from management-speak to strange shorthand (“totes”) to combined words (I’ll bring up “chillax” as an example, even though that’s one that I actually can’t get behind. Some people hate the word “moist”; I hate the word “chillax”).

Picking one thing to get upset about – over all the other shifts and changes we just take in our stride daily – seems like it has deeper meaning. Sure, there are certain kinds of dialects we associate with certain traits – I’ll never be able to convince some people that use of the phrase “going forward” or employing “action” as a verb doesn’t inherently mean that person is a wanker (I actually find them useful shorthand, and I don’t manage anybody).

But we need to move beyond this idea that incorrect grammar or punctuation means someone is somehow deficient in understanding, or that they don’t deserve to be heard; we need to move beyond this idea that the language we have now, or that we had yesterday, or – to be more specific about how humans actually work – the language we had when we were learning language ourselves is somehow the ideal Plato’s fucking cave language and that all subsequent changes to language are a corruption of the glorious ideal.

We need to remember what language is for. It’s for communication and expression. It can be beautiful and wild and precise and reasonable; most importantly, it is for making yourself understood and for understanding others.

Speak. Write. Be heard. Use the dialect that makes sense to you. Make yourself understood. Have patience. Embrace the change – because you’re not going to be able to stop it.

 

Gotta Die Of Something or “Quality of Life vs other Quality of Life”

(note: apologies for the long gap between posts. I’ve been overwhelmed lately, but I have so many ideas and also personal updates, so I’ll catch up, I’m sure!)

I was born at the very start of the 80s, the height of the low-fat and jogging obsessions. The adults in my life were profoundly scathing of “wankers” who cared about health, seized on any vaguely fluffy research that declared red wine was good for you, and loudly proclaimed that one had to die of something (while, by the way, being very anti-smoking and anti-drugs, based on their own personal experiences).

This attitude has waned a little (along with the low-fat obsession, and thank fucking god for that one) and it’s a little less prevalent, but now it emerges in a different way. It feels like there’s a constant tug of war between the gluten-free-meditate-yoga-wellness crowd and the oh-for-fuck’s-sake-you-tosser crowd. I admit, I don’t have a huge amount of patience with the former, because a lot of what is promoted isn’t actually supported by science, and I don’t want to waste my time and money.

(Note: yoga, when performed correctly, seems to be very good for muscle development, balance, mood, flexibility and strength. It does not – as some of my yoga instructors have claimed – balance my pituitary gland. In the same way, a good chiropractor can help ease back pain. They cannot cure or prevent viral disease.)

But I’m not entirely sure I have a lot of patience for the second crowd either. I’m not talking about people who have just decided what matters to them and what doesn’t. That’s what everyone has to do. No, I’m talking about people who feel judged the minute you excitedly share that you got a personal best at the gym (and I don’t even mean when you talk to them directly), or that you’re excited about a new low-carb recipe.

This is the “You gotta die of something” and the “Who wants to live forever anyway” and the “you won’t live forever, it’ll just feel like it” crowd.

I’ll take “Appalling Logical Fallacies and Over-Simplifications” for $500, Alex.

The amount of time and money I spend on my health is legitimately ridiculous. I’m exercising constantly. I run 2-3 times a week. I lift weights at least once a week (preferably more, but I’m having some scheduling issues at the moment). I go to clinical pilates once a week. I have a sports podiatrist that I see regularly. I scuba dive (although I could argue that’s a net negative for my health; another story). I go indoor rock climbing. I try to sleep a sensible amount (I’m so bad at this one right now). Most of the time, I eat a very strict low carbohydrate diet, in order to reduce the nausea and pain from Crohn’s. That means no sugar, no wheat, no rice, and almost no fruit. Sugar-free everything. I also take supplements, because it turns out that when your gut isn’t good at absorbing nutrients (thank you, Crohn’s Disease), and you’re required to cut a bunch of stuff out of your diet for various reasons, you miss a few things. Also, when you’re hypermobile, taking fish oil for your joints goes from “might as well” to “actually, you really notice when you stop.”

I’m that person who will occasionally order the almond milk decaf cappuccino and then add in two packets of artificial sweetener, because I’ve finally admitted that I actually don’t like almond milk decaf cappuccinos very much, I just want the psychological crutch of a “coffee” in the evening without staying awake all night and getting the gut discomfort of lactose consumption.

I turn down alcohol because my reaction to it isn’t worth it, 95% of the time. I don’t want to lose my entire next day to fatigue and sore joints.

I am, in the parlance of the adults around me when I was a little kid, a total wanker.

I’ve given up things I really love eating (not forever; I break keto for extended periods due to travel, and then I get to have pizza and almond croissants and yum cha and also feel very sick).

This was all my choice, but I sometimes feel taken aback when I end up talking to one of the “gotta die of something” crowd, because I always want to reply, “That’s true. How soon would you like that to happen? How much would you like it to hurt when it does? Do you want to be able to move in the meantime?”

I don’t reply that way. It’s more trouble than it’s worth, and it’s important to leave people to their own priorities and decisions. But I want to.

The fact is that I’ve given up some things, and forced myself to do other things (all that working out is time I could spend doing other things) and in that sense I’ve missed out on some fun. I’ve reduced my quality of life from that measure.

But in another sense, my quality of life is profoundly better because of this.

I can walk straight, now. Pilates has repaired my posture to the point where it doesn’t hurt to sit at a desk or go for long walks.

I can lift heavy things without whimpering. Basic everyday tasks are easier. Chores are less overwhelming. My energy levels are still profoundly shithouse, but I do have two chronic illnesses, so that’s not surprising. They are, however, better when I’m eating right and working out than the rest of the time.

I don’t feel sick all the time. I am in pain, but again: my Crohn’s Disease is not being effectively treated (that’s another whole story) and that’s an expected outcome.

I get less abscesses and less of certain other very unpleasant recurrent conditions because of the shift in my eating. I am less bloated.

I get less sugar cycling, less fatigue, less afternoon crashes.

I get less mood swings and less anxiety.

And I’ll take missing out on booze, on almond croissants, on office birthday cake, on indulgent take-away dinners. I’ll take that, because now I can move. In a way, I hate that it all works so well. I hate that exercise really does help with the pain and fatigue of EDS, and I hate that the diet mitigates my CD symptoms. It’s great that it works – because oh my, something that works? Gives me power over my life and my illness and my body – but I kind of wish it was a beat-up, and that I could stop doing it, because it all takes a great deal of mental and physical effort (and cash. Much cash).

The price is high.

The pay-off is so good.

I’ve decided that feeling awake and mobile matters to me more than those things I gave up. Most people I know have picked out their priorities, and decided that some things give them enough joy that the health costs are worth it – and I’ve made that decision for a few of my activities – while other things aren’t worth it, so they’ll take the hit there. This seems very sensible to me, because there are so many different kinds of quality of life. There are things that give you joy, and things that make you healthy and reduce long term pain, and most of the time in life you don’t have to decide between them; but sometimes you do.

And it would be nice if we could stop calling people wankers for making that call.

On the personal side? I struggle with smokers. My step mother died of terminal lung cancer, with six months from diagnosis to death. It’s hard to watch the people I love smoke. But when it comes down to it, that’s their call. They know. I respect the people I love. I respect their adulthood, their intelligence, their own priorities. They’ve made the call.

The hardest thing I find to deal with is where ignorance is involved (obviously, smoking is not a culprit here; everyone knows it is profoundly linked to lung cancer). People who don’t do what their physiotherapist tells them because they “get enough exercise” (and then wonder why they’re not getting better). People who don’t vaccinate because they think it causes autism (yes, being like me is much worse than dying of measles-induced encephalitis). People who don’t know that they should get the pain in that joint or muscle investigated, because it could be an easy fix and then they won’t have to deal with it any more. People who are bloated and complain of constant gut pain but won’t get checked for an allergy or an intolerance because they might have to give something up. That’s not an informed choice.

So yes: I struggle with this too. I want everyone to have all the information they need to make the choices that will make them happiest, whether that means giving something up or doing something extra to stay healthy, or whether it means deciding they can tolerate a risk or a discomfort because something makes them really happy. And it’s hard to get that information sometimes. Not everyone has a background in science. Not everyone has a fantastic medical team that they can trust to listen to them and tell them what they need to know.

And that infuriates me most of all.

My Brain Slapped Me and Look, It Was For the Best

Note: I actually wrote this a couple of months ago and then chickened out of posting it. I’ve now found myself in a damn-near identical head space so it seemed like the time to suck it up, fortify, and get it out there.

It’s sometimes hard to tell a linear story when a number of different factors come together, but I’ll do my best to make sense of this.

  • It’s winter. I don’t do well in winter. Seasonal Affective Disorder makes my brain feel like it is shrinking, and it’s too small for thoughts. I can’t concentrate or focus or move well. It’s too dark. It’s too cold. I struggle.
  • I’m on immunosuppressive therapy. I’m not 100% sure, but I think it’s entirely possible it’s causing some fatigue issues since it’s actual fucking cancer medication and I have definitely had the nausea reaction and I am definitely immunosuppressed (Do. Not. Ask. Unless you know me very well).
  • I’m overscheduled. As a person who is not fully employed and who juggles multiple contracts and responsibilities, I find it hard to say no to projects, since it is statistically very likely that sooner or later I will have no work at all.
  • I have Crohn’s Disease. It’s a progressive autoimmune disease and it affects my ability to absorb and use nutrients from food. It also means I’m in pain a lot of the time, in spite of my helpful nerve blockers.
  • I have hypermobility syndrome/EDS, which means that I have to work out a lot or it hurts to move, and sometimes I work out a lot and it hurts to move anyway, or hurts to move in a different way.
  • I have a uterus, and it’s a fucking bastard.

It turned into a bit of a perfect storm. A bunch of deadlines appeared for a project. The project turned out to be much larger and more complex than I thought it would be. I got very stressed. My hormones started singing the song of their people, and I spent most of the weekend feeling like my abdominal cavity was (a) swollen, (b) on fire and (c) tearing slightly (I can’t swear to the swelling but the rest of it is not literally true). Pain is exhausting.

I had so much work to do.

I kept trying to work.

I kept failing to get work done. I was so tired. I was in pain. I couldn’t think through the fog. I kept feeling like more and more of a failure.

And yet.

I kept trying to work. I would swear, set the work aside, and then try to write, and this wasn’t much better, only now I was failing at writing, which feels much, much worse than failing at anything else.

The pain was bad. The painkillers made me fuzzy – and didn’t really touch the pain.

Kept trying.

Kept failing.

From Saturday, through to Wednesday. I spent a lot of Wednesday running errands. When I added it up, I’d spent more than an hour in the car, and I had gone for a run (I hadn’t finished the training session as prescribed, but since I did run about 5.5km, I figured it wasn’t a complete wash), and I’d gotten a blood test, and I’d picked up Amos from his overnight test-playdate.

I sat down thinking “no, I really, really need to get some work done.”

Tried again.

I just couldn’t think. It felt like my head was tight. I felt feverish. I felt pressure at the corner of my eyes. Everything just started to feel like it was at the end of a tunnel. My limbs felt heavy. My mouth wouldn’t move when I tried to speak.

Hey, if you’re an autistic person reading this, and you think this sounds like a mild shutdown? Yeah, that’s what I think too.

I lay on the couch, barely able to move, tears leaking out of my eyes. I had enough dexterity to send two and three-word messages to Husband and my mental health buddy. Eventually I managed to get myself up. I put Amos outside, since he hadn’t been out for a while.

I staggered to bed. Stripped my clothes off.

Slept for about ten hours (with some interruptions).

I got to Thursday, and I managed to get to a psych appointment, where it turns out I’m actually really, really upset about the fact that I have to work out all the time and I have to drive all the time and I have so much to do and I am so tired and in so much pain and why won’t it stop, why, why, why.

Here’s the deal: I have not adjusted to the fact that I can’t do as much as everyone else. I still castigate myself for being incompetent or lazy or irresponsible when I can’t focus. I still feel like a failure when I get to the end of the day and haven’t checked off everything on my to-do list.

I haven’t worked out how to live with the new normal, and guys, that’s hard. It’s so much harder than I thought it was going to be. I didn’t really expect there would be a new normal. I didn’t realise I’ve been driving myself so hard for so long. I thought I was just skating by on the bare minimum and wasting time, and it turns out that, when objective people look at my life and my schedule, that’s not the case. My “wasting time” is what happens when my over-worked brain stops being able to focus.

I have a few friends who don’t have a way to measure a normal work ethic, a normal way to handle the curve balls that life throws at you; and it turns out I’m more like these lovely, overworked, hardarse people than I thought.

My brain has told me to stop. To learn to be kind to myself. To understand that spending hours working out is a priority, and that sleeping and relaxing is a priority, and that work has to take a hit, and yes, I’m privileged that Husband can keep the wolf from the door and I can afford to not work all the time.

This is my reality. This is reality for a lot of people, and most of them don’t have the advantages I do.

But if you can, be kind to yourself, and don’t wait for your brain to slap you, because it did not pull any punches.

Marriage Equality Plebiscite Rage Vomit: Step right up

Alright, since we’re here, and since we’re apparently having this godawful debate over extending basic human rights and treating people with human decency and dignity I’m just going to say it. It’s not original. It’s a bit weird coming from mostly-straighty-McStraightPants-who-is-actually-fucking-married over here in the corner. It’s fuelled by horror and rage.

But I’m going to say it anyway.

This is about extending human rights to people. Your default setting should be yes unless there is a very good reason to vote no.

1. There is no logical, sensible, useful reason to say no to marriage equality. Follow these dots.

2. If your reasoning is religious, then you should say yes to marriage equality, because your religion should not get to decide who other people marry. I do not follow your religion. If I wanted to marry a lass, or a nonbinary individual, I should be allowed to (were I not already shackled, since our legal system is based on monogamy, which works for me personally but not for everyone, and that’s an entirely different conversation). You are welcome to follow your religious rules. Go nuts. You cannot and MUST NOT apply those to other people. Do better. You can’t apply your religious rules to other people by majority vote. We do not live in a theocracy. You better believe there are a lot more heathens and atheists around than you think there are, and we just want you to stop with that bullshit (not to mention people from other religions, or people from your own religion who actually agree with marriage equality).

3. If your reasoning is that you are concerned about “children”, then we can go a couple of ways. I’m going to go into sub-points.

3a. This is about marriage, not children. Surprise, surprise, when two blokes or two ladies shack up, newborns rarely miraculously appear. I mean, it’s not out of the question, given that trans people exist, but if you’re thinking of voting no, you might not be aware that trans people exist, and can have babies. Regardless, letting them get married does not mean they are going to have children. Next!

3b. Marriage is not for making babies. It might be that way for you, but it’s not that way for a lot of people. Many married couples do not have babies. Sometimes by choice. Sometimes by infertility. Sometimes because they’re tying the knot in their twilight years and are well past kids and have done that dash already (cf. my dad for exhibit A on this, as he has married twice in my adulthood, both times to wonderful warm-hearted women who were unlikely to experience a flush of post-50 fertility). So if you think people with roughly matching genitalia shouldn’t get married because they won’t have babies, then it’s a non-sequitur. It really is.

3c. Same-sex couples ALREADY HAVE CHILDREN. They adopt. Or do the IVF thing. Or foster. Whatever. In some way, they provide loving homes for kidlets because many of them have the same need to lavish adoration and care on small helpless humans that straight people feel. Marriage equality will not affect this. It will simply legally legitimise existing relationships, allow public acknowledgement that these families are Actual Proper Families (acknowledgement that should not be necessary as it’s bleeding obvious). We actually do have legitimate fucking scientific evidence that kiddos do better when they are in families with married (or at least civilly committed) couples due to the feeling of permanence, reduced social stigma, and increased recognition. It bothers me, since I don’t think anyone should feel pressure to have the party and the piece of paper.

3d. “Kids need a mother and a father.” No. They don’t. They emphatically do not. As someone who had both, and who doesn’t speak to one of them due to some nasty abuse, the effects of which I will be living with literally every day for the rest of my goddamn life, I didn’t care. All I needed was to feel loved and safe. Loved. And safe. I was aware that I was loved. I was not safe. I did not feel safe for an extended period from 1995 to 2001. You know what? It’s also good when kids have parents – of whatever genitals and personal gender ID – who love each other and can communicate effectively about *how* to keep kids feeling loved and safe. ONE parent who can keep the wheels turning over is good. TWO would be fantastic (and also stop the one from losing their goddamn mind, because by all reports being a single parent is insanely difficult). There is NO EVIDENCE that kids need one of each biological sex in their home life. There is none whatsoever. In fact, the evidence says something rather different: it says that kids do well when their parents are committed and loving, and that makes them feel loved and safe. See above. I know it might be hard for you to imagine a family that doesn’t look like yours, or that doesn’t look like what you grew up with – and you know what? That’s okay. That’s okay that you find that hard to picture. It doesn’t matter if you can see it. You don’t have to. You just have to know that it exists, that it works, and that at the end of the day, it’s none of your business.

3e. “But if there are two guys, who will make the sandwiches? And if there are two women, who will play sports with them?” Are you fucking kidding me. If I actually need to refute this, someone tell me, because otherwise I’m going to assume the profound idiocy in this statement is self-evident. Also, you think very poorly of both men and women.

3f. This is important. Are you ready? We’re still on “but the children!” So here’s the kicker: QUEER KIDS ARE CHILDREN. Yes. Very young queer humans are children, and the absolute best thing we can do for queer children is fight homophobia. The best thing we can do is make it safe for them to be themselves, to pursue their own love lives and sex lives safely, and to not treat them as though their love is somehow different or lesser – not treat them as though they are lesser. Queer kids are dying because of the constant flood of messages they get about this shit. If you care about children, care about all the children.

3 closure. I’m hoping now we have settled the children issue. Marriage equality is good for children. Moving on.

4. “But it makes me uncomfortable to see two guys kissing!” Oh lordy. There is a bunch of other stuff you can look at. Maybe people don’t want to see you kissing, ever think about that? Also, it’s possible that not everyone in the world is into PDAs anyway (I actually kind of like them up to a point, as I think it’s sweet, but not everyone is as mushy and demonstrative as I am). The world does not exist for your viewing pleasure. There are people who don’t want to see me in a bikini, or tight pants, or a glamorous sequinned gown, but is that going to stop me? This is not a reason to vote no. This is not a reason to take rights away from human beings. If your reason comes down to “but gay people are icky and now I feel icky” then you have no reason and you must vote yes to marriage equality or it honestly make you a terrible person.

5. “But it’s redefining marriage!” Alright, let’s deal with this one.

5a. A lot of the time, this is coming from a religious perspective, so we’ll take that first. Christianity – or whatever your religion might be, I’m basically looping in the ACL here – did not invent marriage. I have heard people describe marriage as a gift from god, and you know what, fine. If you think that your Christian (or whatever) marriage is a gift from God, then sure, you do your Christian marriage the way you want to and don’t marry someone with genitalia that roughly match your own. But marriage, in the sense of a legally recognised union of two people creating a new legal unit for the purposes of government recognition, has been around for literal millennia and in countries that have had nothing to do with your particular spiritual leanings. You might not think those marriages are real and that they didn’t matter. But you did not invent marriage, and here’s another factoid for you: same-sex marriages occurred thousands of miles away from your religion in cultures that had never heard of it. Australia extending the right of marriage to include all consenting couples is not redefining marriage past anything. It’s only redefining what we’ve had since 2004 and you must admit that 13 years is hardly an ancient tradition of bigotry. I’m betting you coped before 2004 with a legally ambiguous definition of marriage. You’ll cope now.

5b. So what? Words get redefined all the time. That is how language works. It is a living thing, and living things change. How will this affect you? This argument also comes from non-religious people and I have no idea what the problem is. Your marriage will not change. I have read commentary from one person who was concerned that people would see his wedding ring and would not automatically know that he was married to a woman, and who argued that marriage equality would take away his right to be recognised as a fucking straight person. Are you serious. Who cares? If it’s that important to you, say “MY WIFE” at some point in the conversation and move on. How is this a point of obsession? If this is your argument for voting no, you need to vote yes.

6. “Next people will marry animals, children, inanimate objects and immediate first-order relatives!” No. This is about consent. Children, animals and inanimate objects cannot consent. Marriage to immediate first-order relatives is illegal, and under these changes will remain so. This argument literally makes no sense. Please reconsider ever using it again. Maybe write it down and symbolically set it on fire. Dance around the flames. Celebrate its death.

7. “I’m entitled to my opinion!” Yes and no. You’re entitled to believe and think whatever you want. You’re not entitled to hurt people for no good reason. You can vote no because you believe irrational things and one or more of the above horrendous “no” arguments somehow resonates with you, in spite of all evidence and empathy and logic, but here’s the thing: if you vote to deny someone’s rights, if you vote to make them feel like second-class citizens again, and more so than they’ve already been dealing with for their entire fucking lives, if you vote to make the lives of queer kids harder, if you do this without a good, rational reason, then you are a terrible human being. Unfortunately, you’re legally entitled to be a terrible human being. If you have any illusions about yourself, any basic conviction that you’re a good, decent person, you need to make good choices based on good reasons. If you don’t do that, I’m sorry, but you’re fucking trash.

8. “You’re being angry and confrontational!” Yes. Yes, I am. Or at least, as much as I know how to be given that I’m an anxious mess who doesn’t like talking to people I don’t know. You know why? Because this whole thing stinks. It fucking stinks. It feels like this is so goddamn obvious and I don’t know why this argument even happens. I’m angry because there are people that are very dear to me who are being hurt by this, crushed by this, infuriated and exhausted by this, and I can’t do anything to help them. I can’t. Do. Anything. I feel helpless and it makes me angry and furious and I’m lashing out the only way I know how. This isn’t about my feelings, but when I’m angry, shit like this happens. And how much worse is it going to be for those people I care about? What I’m feeling is going to be a tiny mosquito bite compared to what they’re going through. I can’t step in and take the blows for them. They’re suffering, and for no goddamn reason.

If I weren’t angry, if I weren’t feeling confrontational, I would be inhuman.

If you’re considering voting no, what does that make you?

This Keto Life: The trouble with n=1

I recently returned from a wonderful ten day holiday in Indonesia, staying on the island of Gili Air and diving nearly every day (and I saw turtles on every dive. Only one shark this time though). While I’m on holiday, I don’t tend to eat keto, in spite of the damage this will cause. It’s just too complicated and difficult and two weeks won’t do a huge amount of damage.

Besides. Margaritas.

So I come back, having gained some water weight (and some non-water weight, because nom), and feeling sluggish and bloated, but hopefully not having given myself the usual long-term consequences (I did develop an abscess, probably due to increased inflammation – ugh – but it was tiny and I managed to blast it with antibiotics).

Here’s one thing that I find interesting: when I first went keto, my resting heart rate (RHR) went up. Not a huge amount, maybe 6 bpm, but it definitely increased from a stable point. I thought this was odd, but didn’t pay it too much mind.

Now, I have a Charge HR, and thus a continuous heart rate monitor. It’s true that it’s not the most reliable monitor, and also that the way it calculates “resting heart rate” is a little bit bogus (if you’re not moving, it thinks you’re resting. Maybe you are. But maybe you’re absorbing some profoundly stressful news, or reading an exciting book with cliffhangers. You see the problem).

The trends, however, are very reliable.

When I break keto, my RHR pounds to the sky, usually maxing out at about 73. When I get back on keto, it starts to plummet – my usual RHR (at least according to the Fitbit) sits somewhere between 57 and 60.

I am tempted to assume – and there is some good evidence for this – that this is because my body is now better adapted to a low carbohydrate, ketone-based metabolism, and so I run more efficiently when that’s in operation.

Here’s the problem: I’m one person, with a complicated body. There are a number of other things it could be.

It could be that my overall inflammation is lower when I’m on low-carb. This is well supported in the literature, and would interact with my Crohn’s (which is, after all, an inflammatory autoimmune condition).

It could be that I’m less anxious because I have predictable control over my diet (I plan a lot when I’m on keto and I find that comforting). The reason I don’t think that this is the case is that when I’m on holiday, I’m not stressed at all about food choices. I give myself free rein. All the same, it’s a plausible hypothesis that there is some underlying anxiety – I’m usually away from my home and my comfort zone and surrounded by strangers when I’m on holiday, so it wouldn’t be a surprise that my RHR is a bit elevated.

It could also be hormonal. I’ve noticed that my RHR is locked in very tightly to my hormonal cycle, and skyrockets around ovulation time, dropping off when the period arrives. And I did get my period about a day after I got home. So this is plausible – but again, it’s not always the case with the keto RHR changes.

What I suspect has happened is that going back on keto has lowered my inflammation, and that this has interacted with my hormonal cycle as well, because both of these things affect my RHR.

But I don’t know. I won’t ever know. Because there’s no way to test this with n=1. You’d need a wide sample of male and female people with active ileal Crohn’s disease, some of whom have adapted to a keto diet and some of whom haven’t, and then you’d need to monitor their RHR as they went on and off keto, to see if it changed, and how much.

This bugs me, because of who I am. I want to use it as supporting evidence that keto is good for me (I have a bunch of evidence for that already, but I get anxious, because it still is considered a really weird way to eat, and I get nervous when I stand out from the crowd, and already I have social anxiety around food choices), but I can’t be 100% sure (or even 95% sure with a basic p-value of 0.05) that this is what the relationship is, between ketone-based metabolism and cardiovascular efficiency.

The above is why I always narrow my eyes whenever anyone says “Well, [thing that is shown to be a placebo or worse] always works for ME.” Because maybe it does, and people do know their own bodies, but maybe it’s comforting, and anxiety is a factor, or maybe there’s something else that is correlated with that practice, and maybe…

Yeah. I’ve been told by a GP that perhaps I “over-science” my health.

All the same, it’s strangely fun.

O Bendy Gymster: I am the Puppet Master

I haven’t been having a wonderful time with my workouts lately. There have been numerous interruptions – hormonal crap (which results in debilitating pain), piriformis syndrome (where your piriformis muscles get inflamed and then press on your sciatic nerve, causing your hip to buckle), and so forth and so on. This means that when I do manage to drag myself to the gym or to the trail, I feel sluggish and reluctant, and I can’t do what I used to be able to do. This is profoundly discouraging and disappointing. I admit that sometimes I just want to cry. (I work so hard and I’m back to square one! AGAIN.)

(note: one comforting thing is that square one has moved. Square one is now “I can only manage running 3kms instead of 9kms” when once square one was “I am allowed to run for fifteen seconds at a time.”)

When I don’t work out, I get problems. This is the source of my common flippant claim: “I work out so that I don’t fall over.” It’s a shorthand summary of the truth.

I took about a week off from any physical activity due to Crohn’s pain issues. I almost never do this. The end result was that my nervous system forgot how to map a bunch of my core muscles.

This is the part of hypermobility syndrome that’s really hard to explain, but it’s crucial to the whole system. I’ll summarise.

HMS (or Ehler’s Danlos Syndrome, depending on the categorisation) is a genetic defect in collagen production. For some people, it is fairly benign, and for others it is debilitating. What this means in broad terms is that the ligaments that whole your joints in place, making sure that the fulcrum of the lever operates appropriately, are… pretty shit at their job. If you think of your joints as levers, which they absolutely are, HMS/EDS is about having fulcrums (fulcra?) that don’t stay put. They shift. So much power is lost. I have pretty well-developed musculature (if I flex, you can see I have abs, and my body fat percentage is high enough that this shouldn’t be possible), but so much of the power of those muscles is lost simply because my levers are so bad. So much of the muscle is busy just trying to hold steady (it’s probably why they’re so buff, actually. Standing up is working them pretty hard).

(cue: GODDAMMIT LIGAMENTS YOU HAD ONE FUCKING JOB)

I’m lucky in that most of my problematic joint sockets are actually quite deep, which compensates a bit for this problem. There’s only so far my joints can move, because of the bone construction. I have a ridiculous range of motion for some things, but am limited in others. This is a good thing!

The other silver lining in my case is that – because of the coordination issue (which I’m getting to, trust me) – I was a sedentary kid. I didn’t work out. I didn’t exercise. There’s a whole story there about toxic sporting kid culture that is very important to me, but the upshot is that, unlike most people, by the time I found out I was hypermobile (mid-late twenties), I didn’t have two decades worth of heavy impact activity and resulting connective tissue damage. I had a relatively clean slate for a hypermobile person getting into maintenance physiotherapy.

So, to recap: I don’t get dislocations because my bones are helpful. I do get subluxation, which is partial dislocation, and joints moving at the wrong angle and rubbing at the wrong part of the joint. This leads to inflammation, pain and weakness.

Here’s the clever bit, and why physiotherapy helps: if you maintain good muscle tone and tightness, the muscle can actually help support those joints and hold them in place. The downside is that my lower back is always tight, because it’s holding my spine in place. The joints I’m talking about include vertebrae. I can actually over-stretch, because if I loosen those tight muscles, my vertebrae move about very slightly, but enough to cause the above inflammation. By contrast, I do get overtightness in other muscles that I do actually have to stretch – calves, glutes, and the muscle across your chest (I think it might actually be the pecs, feels like a steel cable when I don’t stretch it enough).

Muscle tone (technically: tonus) and strength sticks around for a little while if you don’t work out, but the tightness (that feeling you get after you work a muscle group really hard, which I have to do all the time) loosens fairly quickly.

Meanwhile, you start to lose that extra kinetic feedback.

In order to maintain muscle tightness and tone, you need to be able to activate those muscles. One of the problems with HMS/EDS is that you get reduced kinetic feedback. The human nervous system just didn’t evolve to deal with the enhanced range of motion; there are also autonomic dysfunction symptoms (my feet are ALWAYS cold, it’s like Reynaud’s in that way); and to be fair, the way you learn to move when you have EDS is different from how most people move. You tend to use the wrong muscles to compensate for the angles at which you’re moving your joints, and that means that the right muscles don’t get mapped properly to your brain.

As they say, nerves that fire together, wire together, and the relevant nerves just don’t get to fire.

This is basically an issue of proprioception. I essentially don’t know where I am in space most of the time and I don’t know where my muscles are.

So a big part of my physiotherapy is what we call muscle activation: it’s teaching my nervous system to fucking find the relevant muscles, and map to them. Our brains are extremely plastic in this way, so it does work, but it is hard work. I can’t tell you how many times I’ve been lying on a gym mat, trying to convince my glutes to fire and move my thighs in a clam motion. I can use the wrong muscles to mimic the movement, but the exact, correct movement require a muscle that has gone to sleep.

“Just… fire, damn it.”

The muscles that I often can’t find:

  • Glutes
  • Piriformis
  • Various core and abdominal muscles, including transverse and lateral
  • Some weird supportive muscles in my mid and upper back I don’t know the name of

When these muscles are active, when I’ve mapped to them, I feel glorious. I walk like a standard functioning human being. In order to achieve this, I not only have to do my regular physiotherapy exercises, but I also have to do a regular weights regime, clinical Pilates, and running, and lots of walking.

When I don’t do this work, my muscles lose tightness, and my brain literally forgets how to find the muscles. It does come back faster after the first few times, but here’s what it feels like when I forget.

My body feels like a stranger to me. I feel like I don’t fit inside it. It hurts to walk. It is exhausting to do most things (because using the wrong muscles is tremendously inefficient).

I feel like I am operating a badly-designed puppet, and it’s not even mine, it’s a puppet someone left at my house.

When I’m trying to wake it all up again, re-map the system, I go up stairs slowly. I place my foot, make sure it’s straight, and I twist my hip slightly, and push. My legs are twisted because of the way I’ve walked for most of my life and the way the muscles have developed. My instinctive internal rotation is ridiculous, particularly on my right side (which not coincedentally is the side where the piriformis syndrome is worst, and where the hip spasms and collapses underneath me).

I have actually given up on bench press – my favourite lift and the only one of the “big three” that my body can handle – because I can’t map well enough to set my right shoulder. It’s loose.

It’s not all bad news. I made a wonderful discovery recently!

I’ve recently taken up rock climbing, and it turns out that rock climbing encourages the sort of whole-body muscle activation that short-cuts a lot of this work for me. It’s not quite so useful for the legs (at least in this aspect – it is still a workout for the legs), but for my upper back, it is wonderful. A couple of hours at the indoor rock climbing gym is worth a week of rows and face-pulls. I basically reset my loose shoulder in one visit. And it’s fun, super-fun.

As I’m writing this, I’ve just come down with a cold, so workouts will be minimal. I try to balance my need for activation against my desire to not infect the local population with my plague. There is a fair bit I can do at home, so I’ll work on that.

I’m working on re-mapping my body right now. It’s hard work. What I need to accept is that I’ll get back, and I’ll fall down, many times for the rest of my life. I’ll end up back at square one so many times, and I’m accumulating connective tissue damage around my joints that will follow me forever.

But the alternative is to not move, to not use my body, and that’s not something I’m willing to accept.

So. It’s time to start getting back to it.

Up we go.