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.

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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.

Singers gotta sing

One of the hardest things about being away from home is that I can’t sing – at least, not without annoying people. When I am at home, in my own space, I probably sing as much as I speak. It’s not socially acceptable to indulge in soaring, echoing vocals when in public, or when in a professional environment.

I always worried that there was something strange about this need to sing. There is a social perception of singers, an assumption that to be a performer is to be bombastic or a diva (this is not necessarily true, any more than the assumption that stage performers are necessarily melodramatic in their private lives), and it’s made me confused and shy about it. This shyness is another reason I never sought out lessons, although I’ve been meaning to do that, and I’ve been talking about it, for a good twenty years. I didn’t really want to add in something else that might make me odd, and in a way, I didn’t want my singing examined in case it turned out to be dreadful after all.

Singing is like flying to me, it’s like breathing and dreaming and I don’t think I could bear to feel bad about it (although I do have bad vocal days, and in a perfectly predictable twist, I have more bad vocal days because I don’t know what I’m doing, and every vocal technique I know has been self-taught and hard-learned in a remarkably inefficient way that could have been avoided if I’d just asked someone who knew what they were talking about). Most of my singing, my Big Voice Belting, is in the car, or in my study. Because I have hypermobility syndrome, I have a good deal of thoracic tightness – or to put it another way, my ribcage is really tight, and it’s hard to open up. It takes me a long time to warm up after a break.

I still do sing in public sometimes, little humming lines under my breath, trying to keep the notes as even as I can on as little air as possible, trying to get the music to echo in my ears. When I am happy, when I am elated, it’s a force that pushes at my throat and I literally bite my lip to keep the notes inside. When I’m happy, I want to express that by singing. I want to express sadness by singing. Even anger is something I can work through by singing.

It’s hard to write about, because of that instinctive self-consciousness, as though my feeling that I have to sing is something to be ashamed of, as though someone’s going to tell me off for “bragging” or “having tickets on myself”. Thanks, Australia. Let’s never let anyone be happy with anything they have, or anything they’ve achieved, in case they seem “smug” or “up themselves” or “pretentious” (or my favourite: “they’ve got tickets on themselves, haven’t they?”).

The reason I’m writing about it now is that I’ve become aware, ever so slowly, in the face of near-overwhelming evidence, that I’m not alone in this. There are other people who just plain desperately need to sing. Singers gotta sing. It’s not bombastic. It’s not necessarily performative (although there is certainly an element of that for me). It’s okay to want to sing.

It’s just – music. It is just living in the note.

A Day In The Life of My Picky Jerk Brain

Due to the way I am built, I function best in a world laden with routines. I need to tick off tasks in a regular way, progress on my various ventures, and not have too many interruptions. This makes me happy, and it calms my anxiety, my tendency to sensory processing issues, and other gigantic red flags which will surprise no-one who knows me. I am not adaptable to changes in my schedule. My brain just does not shift focus well. It’s hard to make decisions on the spot, so if I don’t have a plan, I just kind of sit around and fizzle and panic.

Due to the way my life currently functions, a proper routine is almost impossible. I work multiple contract jobs, and medical appointments are sprinkled throughout my calendar like confetti, writing off entire days that would otherwise be spent running errands, working, and doing the other things I need to do to keep myself sane.

My makeshift solution, after discussions with the appropriate healthcare professionals, is to make sure that I have a schedule or list of how I want tomorrow to go. Stick to the plan where possible. Build flexibility into the plan (sometimes that means being able to shuffle times around, but mostly it means constantly reminding myself that things might have to move, I might not get things done, and that is okay, as long as I get the bare minimum done, it’s okay, it’s okay, don’t panic…).

Today, I had a fairly simple plan: go get my blood test. Go to gym. Go to the post office to pick up a parcel. Then go to the train station and go to work. While on the train, call my surgeon’s office to explain that I turned out to be allergic to the terrifying immune suppressants (that’s another story). Meet friend for lunch (I’m not actually planning to eat – today’s a fasting day, but that’s also another story). Go back to work. Eventually, go home. Within the work plan, I had decided I would do either one or two batches of purifications. These are dead boring and I find them stressful, so it would depend how I was going. If I only did one, there are other useful things I can do with the extra time.

See? Flexibility. How boss am I?

So. It’s not even 10am, and let’s see how my plan is going.

I potter around the house until the pathology collection centre opens, making sure the bedroom is tidy and neat, the cat and dog each have water, and my bag is packed. I brush my teeth and go through the whole skincare regime, because I have time. I’m already wearing my gym clothes, so I pack clothes to change into when I get there.

Ooh! It’s 8am. Time to go

I head down to the place where they bleed me on a disturbingly regular basis. On the way, I start to have ideas for a story I want to write, wonderful ideas that flesh out the world and the characters and the plot. I am so happy with this that I nearly take a wrong turn (safely. I indicate and do head-checks and all that, I’m just used to turning there and today I shouldn’t).

“Whoops,” I think, turn off my indicator, wave an apology to the person behind me, and keep going to the pathologist. I get there just before ten past eight. The place opens at eight. To my surprise, when I take a number, that number is 6. The place has just opened. I expressed my surprise online, and two people pointed out that these were probably fasting blood tests and so, people were very keen.

That’s my first hurdle. That wait makes a difference to my schedule. I play Boggle on my phone for a bit before realising that I can do stretches in a waiting room without even standing up. So I do that. Long hip-openers, glute stretches, and hamstring stretches. Efficient use of time. This is okay. This is good.

My number is called. I get my blood test. Just after the lady (who remembers me from last time) finishes the draw, she eyes my outfit and says, “Are you going to gym, or have you already been?”

“Oh,” I said, “I’m going after this.”

“As long as you don’t lift weights. No weights for a couple of hours after a blood test.”

I blank for a moment. That’s a problem. That was my entire plan. And a couple of hours delay is not acceptable – I still have to go to work. Alright. Alright. I can cope. I can do this. My brain starts the panic cycle, but I slap it down like the experienced badass that I am.

“What about cardio?” I ask.

“That’s fine.”

Alright, I think, as I get into the car and prepare to drive to the gym. I’ll just do some treadmill time. I’m not equipped to trail run today, and it’s too sunny anyway. My bloody piriformis syndrome (fucking hypermobility, fucking hip pain, fuck, fuck, yes, I’m angry) is still calming down, so I won’t be able to do much time on the treadmill, but I can probably manage a gentle run if I warm up properly.

I get to the gym. My gym is currently undergoing renovations. Nearly half the parking spaces, never numerous to begin with, are taken up by utes and skips full of wood and other renovation trash. There is one parking space free. I instantly see from the way the dumpsters are arranged that if I drive into it, I won’t be able to back out.

No problem, I’m a hills driver. I reverse down steep hills and around corners every day just to get into my own driveway. I’ll reverse into this parking space. I start to get into position, and realise that I can’t do that either, because now there’s a ute that I’ll scrape and bump if I try to angle my car. I stop, fighting the panic cycle again. Okay. Now I have to reverse all the way back out of the parking lot in order to leave. I manage this with no difficulty, but I’m stressed.

Is there anywhere else near the gym I can park? No. It’s all full.

Fuck it. Fuck it. I can go to gym after work. It’ll be packed, because due to the renovations there’s not much room, but I can do that. I continue to soothe myself with promises of flexible plans, and am comforted by the fact that the iPod in the car is playing my Good Singing Day playlist, which includes Sarah McLachlan. Sarah Mac is very soothing, fairly easy for me to sing properly without stretching either the high or low ends of my range, and requires mild concentration for some surprise trills and lilts. This keeps the anxious part of my brain busy as I start up the road towards the post office.

I ignore the fact that, in my current state, there is no way I can manage an after work gym visit without hyperventilating. Monday evenings are packed and I don’t cope well. There’s a reason I joined a 24 hour gym. Right now, it’s more important to lie to myself.

My house is on the way. Maybe I should go home and change. Then I can get my keep cup, which I forgot. Also, I can call my gastroenterologist from my landline, which is more reliable than random mobile coverage on the train. Brilliant.

I get changed out of my gym clothes and pack them into a spare bag to put in the car (just in case I go to gym after work. Which in the back of my mind, I realise I am not going to do), and I call my surgeon’s office. “We are unable to take your call right now. Please leave a message…”

I hang up. I can’t deal with waiting for a call back to explain the problem and then wait for yet another call back from my surgeon. One call back is all I can manage. I sit there for a moment and wonder why they’re not taking calls. “But this is important,” I think to myself, as though only my business is important and other people call the office of a highly priced gastroenterologist for shits and giggles.

Well, shits anyway. Heh. G.I. pun. I’m on fire, people.

I dial the number again, with the same result. I close my eyes. Okay. Okay. I’ll call later, that’s all. And if after 10am, I’m still getting the same result, I’ll leave a message like the fucking neurotypical grown up that I am not, and deal with it.

I go and check that I haven’t left anything in the bedroom, and I spy Ridcully stretched out on the bed. He murrps and stretches out a paw to me. I pet him. He rolls over and shows me his belly. This cat. Goddamn it. This cat. I gently rub the belly and he purrs happily, stretching out his paw again. This is soothing. This is good. He’s very fluffy and for me this is tactile and emotional bliss. Thank god for cats.

I end the love session and walk out the front door, stopping to make kissy noises at my dog through the window. He looks at me, waving his tail happily, and then proceeds to gallop up and down the deck and bark at another neighbourhood dog currently having a tantrum. It’s going to be one of those days. I feel a bit sorry for my neighbours. He’s not usually like this.

I get in the car. I drive up the street. “Fuck the post office,” I think, “I’m already so behind and today is fucked.” I start to turn towards the train station and stop.

“Today is not fucked, you just have to rearrange things,” says the soothing voice in my head that I have worked very hard to train up. “It’s okay. It’s okay. If you go to the post office, it’s all done and dusted and you’ll feel better. Plus,” and here the soothing voice starts to cajole and coax, “You can get a coffee at the post office café and sit down and calm down, and deal with a few online tasks while you’re there, and then you can try to call the surgeon again. You’ll feel better.”

This is good advice. Thank you, soothing voice. I take myself up to the post office, still singing Sarah Mac. I’m admiring the golden autumn leaves and the sun lancing through them. It’s like a fucking poem up here sometimes, like I’m living in an Anne of Green Gables novel, only with more tourists and less Canadians.

Out of nowhere, the thought bubbles into my head that there are ulcers and lesions in my small intestine, burrowing through the mucosal layer as my immune system works to destroy my gut, and I’m so horrified by this I want to cry.

I yank my thoughts back. PRETTY LEAVES AND SOOTHING MUSIC, I insist to myself. AUTOIMMUNE DISORDERS ARE NOT FOR THINKING ABOUT RIGHT NOW.

Somehow, I succeed. I get to the post office. I manage to collect my parcel, make small talk with the guy behind the desk, and then go into the café and order a coffee. It’s perfectly decent (it’s a long macchiato, half the places I go burn them), if a bit watery. And I sit down. And I breathe.

I check my email. I sent two messages to two different people. I discreetly add a small tab of Splenda to my long mac, because “decent” turned out to be an excessive kindness. I’m about to RSVP to an invitation from my work email (I tried to do that earlier and it didn’t work, which also makes me panic).

(Word just crashed, by the way. I stared at my laptop and just said “No. NO. NO.” Fortunately, I had just saved. Thank fuck.)

After I do the above, I will try to call Surgeon Sam again. This time, I will leave a message if there is no answer. I will also call my gym and ask when the renovations are going to finish as I am considering putting my membership on hold until that is done, because I’m not coping with the new setup. Then, I will sit here for a moment. I will breathe. I may read a page or two of my current paperback.

Then I will go and catch the train.

If you’re reading this, I obviously decided to share the panicky nightmare of my morning. If you’re reading this, I decided that it was important that someone see what it’s like when this sort of anxiety takes hold. Everything gets over-thought. Everything is a potential disaster. A brain that adapts poorly tries to react to changing circumstances and marinates in a cocktail of stress hormones while doing so. None of these things are anybody’s fault. If anything, I’ve downplayed the level of stress and panic that has been taking place here.

I have the advantage that I’ve learned pretty well how my brain works, and I have a lot of coping strategies. My “soothing voice” is the main one. I also call it the voice of reason. I’ve learned to listen to it – it’s taken me a long time. I used to think it was full of shit, to be honest, but I’ve learned that I can calm myself down by internally talking to myself and reminding myself that the day is not ruined, everything will be fine, and most of these things are not a big deal. I don’t adapt well, but that’s okay, I can take my time to restructure my mental image of how my day is going.

At the same time, the anxiety is not rational. There’s a basic mechanical reason that I respond to things this way, and the initial response is not something that can ever be trained out of me. It is what it is.

I struggle sometimes.

Diagnosis Roulette: The Metaphorical Cricket Bat of WTF

My long journey towards diagnosis appears to have finally tottered to an end.

I haven’t updated this story in a while – when last we heard, our hero had discovered that 9mg of Budesonide EC was no longer effective in managing the abdominal pain. Since then, I’ve discovered that I had an FC (fecal calprotectin – don’t ask) score of 376 (it’s supposed to be < 50, so let’s hear it for “You Definitely Have Crazy Intestinal Inflammation”), and I’ve been to see a pain specialist, who turned out to be marvellous.

Absolutely marvellous. I’m now on 150mg of Lyrica (pregabalin) per day to manage what is apparently termed “Visceral Hyperalgesia” which is what happens when your viscera (innards) are so used to being in pain that your spine starts sending pain signals even when there is no reason to do so. It turns out that peristalsis should not hurt. I now rarely take my prescription codeine (although it is necessary when I break keto for fieldwork, because my inflammation and thus pain levels skyrocket). I can even take an extra 25mg of Lyrica one hour before a running workout, and the change in blood supply to my abdomen won’t cause me to stagger to a halt from pain.

To continue on this winning plan, I turned out to qualify for a pill cam, thanks to some surprisingly low iron (honestly, I was not expecting that).

This was exciting, I-live-in-the-future stuff. I actually ate a camera. I wish I’d taken a photo of the damn thing. It was probably about the size of a large fish oil pill. Then I wandered around all day with a belt and a sensor attached, while taking Amos for a walk, collecting next door’s dog for a visit, and watching Netflix. It was the most productive medical examination I’ve ever undergone, given that usually I’m unconscious at the time.

Anyway, then I went on a ship for nearly three weeks of fieldwork, during which time I was, unsurprisingly, not getting Telstra reception and thus not able to get my test results. As soon as my feet hit dry land, I called my surgeon.

And got my result.

I was right. I have Crohn’s Disease, ileal (i.e. in the small intestine). Patchy inflammation throughout, so reasonably widespread, although I’ll get more detail on how widespread when I go see my surgeon. It just hasn’t turned up in the first 80cms or so of small intestine that can be examined in a gastroscopy.

At first I was relieved. Immensely relieved. Also, surprised. I wasn’t surprised by the diagnosis – since that’s what I thought I had, for a long time – but by the fact that I actually got one. I’ve been getting medical tests that say “well… sort of?” or “you look normal, honestly” or “that’s a bit weird but…” for so long that, even after the FC score, I was still expecting the result to be inconclusive.

Now, it’s started to sink in that I actually do have an incurable progressive autoimmune disease and, while I feel a great deal better about the fact that I have an actual label I can put to what’s wrong with me (it’s not all in my head! I HAVE PROOF!), I’m not feeling great about the big picture.

My future will probably involve some reasonably terrifying immune suppressants, and it’s overwhelming. Imuran is the nominated drug in question, and Googling that made me want to curl into a little ball of panic. Fingers crossed that my reasonably good luck with side effects continues (I’ve managed to avoid side effects for Zoloft, Lyrica and Budesonide so far, because I’ve been blessed with the medication tolerance stick, but those are relatively benign drugs). I won’t find out more about it – the dosage, the risks, the monitoring plan – until my next appointment with Surgeon Sam, which is – who’s counting? – eleven days away.

What else my future will involve… is unclear. I’ve been brushing up on Crohn’s, reading the books that I’d already read albeit now with closer attention. Previously I’d been reading up out of curiosity, a bit of concern, and suspicion, as well as the comforting notion that if I did have Crohn’s Disease, I had a relatively mild form of it (this is still true. Mild for Crohn’s). Now I’m reading it with the reality that this all applies to me, at least potentially. This changes things.

My short-term goal is to get into remission. This will aid my long-term goal, which is to reach a ripe old age with my small intestine intact. This is now a goal I have to actually think about, as opposed to a smart arse off-side remark about something I might or might not have. I have to consider the literal possibility that I might have loops of my intestine resected (which is, as near as I can tell, a fancy medical term for “taking out bits of you and joining up the other bits, you’ll never notice, I swear”).

I probably have carbohydrate malabsorption (hence, why I do better on keto). I may have some iron malabsorption (hence, low iron, in spite of the vast quantities of iron-containing foods I consume on keto). There are huge categories of nutrients my damaged gut might be unable to absorb, leading to long-term issues. Iron, calcium, magnesium, folate, and the reabsorption of bile salts are all a matter of some concern (that latter one will explain the agonising gall bladder pain I occasionally get. I am hoping to hold onto my gall bladder for as long as possible, since I eat a high fat diet and I use the damn thing). The giant pile of supplements I started taking to account for deficiencies in my diet now morphs from paranoia into necessity.

Here’s my dream outcome: the terrifying immune-suppressants work, and I get into remission. I slowly wean off the steroids – and the immune-suppressants – and get to be a person who is just monitored. My flares are rare and separated by long periods of happy, non-active-Crohn’s time. My fatigue issues go away. My pain issues go away.

This is medically possible.

Whether it’s likely – and whether it’s more likely than other outcomes, which involve surgery and long periods of being unable to work – I don’t have the expertise to say.

So this is an emotional rollercoaster, but on the bright side, at least now I can stop wondering, and I can access more aggressive treatment, and I can easily describe what’s happened to me (this is crucial. Labels are very important to me).

It’s very hard to think about anything else. I might be a one-trick pony for a while.

Happy Diagnosis Day.