2024.

This last year has been one of ups and downs. I’m still very much in recovery, and will be for some time to come. Something I’m verbalising a bit more these days, at the urging of my psych (he thinks I internalise too much), is just how bad things got when I eventually got hospitalised back in 2022.

See, I was weeks away from organ failure. It turns out that when I emailed my endocrinologist saying “I think I might be dying”, I was right. I was closer to dying than a lot of people realised. I just never really said anything about it, because by the time it was a thing I was in hospital, and I hadn’t wanted to worry anyone unless there was something concrete to be done, you know? While it was just “I feel like everything is shutting down but nobody can tell me why”, I hadn’t wanted to seem overly dramatic, and nothing I could articulate seemed extreme enough to warrant scaring people like that. By the time I got into hospital, I was used to framing it as investigatory. We were trying to figure out what was wrong, after all!

And then I got admitted, and my team got very concerned, and it turned out that the massive abdominal oedema I’d been dealing with for going on months by then was a sign that everything was, in fact, shutting down. I was close to congestive heart failure.

And I still didn’t say anything, because I didn’t want to say anything until I knew there was nothing to be done. I didn’t want people making plans to come see me and grieve unless they had to. I didn’t want to make people go through that for nothing if it turned out we could do something about it and make me not-dying.

My psych has informed me that this was not a particularly healthy way to deal with that.

So. 2024. Most of it has been dealing with recovering from the surgery I got in October 2023, to essentially reconfigure large portions of my digestive system. It was a good and necessary surgery and I got through it just fine, with remarkably good outcomes and no complications, but it, and the attendant medications, have meant a drastic lifestyle change that I’m still adjusting to, and that has been hard. My entire way of eating has changed. Some of that has been really positive – I’m very much enjoying not having food cravings anymore – but re-learning what foods I can tolerate and what eating patterns I need to adopt has been a sharp learning curve. And because my case is more complex than the typical bariatric patient (no judgement there; I’m just a medical snowflake) I can’t take any of the usual literature or advice at face value. I have to do everything for the first time, by myself. My team is great, but they’ve never had a patient like me before either.

Progress has been insane. I’ve lost 100 kilos since 2022. I’ve regained function that I never thought I’d get back. Just this last week, the Engineer and I drove three hours away to the city where most of my family lives so that I could see them for the first time since I got so sick. We drove down on Friday and stayed at a hotel, saw family for nearly five hours on Saturday, and drove back on Sunday. I was tired afterwards, and I’m spending this week resting, especially since my back is giving me twinges of “you spent three days in a row sitting in a car or sitting up for long periods of time” grief, but I don’t feel too bad otherwise, even though I had an annoying summer cold affecting my sleep. I’m actually giving some thought to trying to get my driver’s license.

At the same time, I have to be careful, because while progress has definitely happened, I’m all too prone to pushing myself because I have this sneaky little hatred voice telling me that I’m not trying hard enough. I miss working; I’m not well enough to work again yet. I don’t know if I ever will be, as much as I want to be. I can’t look that far forward yet. If I try to look too far forward, I lose sight of the fact that I’m in now and now-me has to be realistic about what I can do now, rather than what might be possible in one or two or five years’ time. And then I get mad at me for not being 2030 Better instead of 2025 Better, and then I crash and burn and it’s all very messy.

So, 2030 can be over there, in some ephemeral future that will happen when it happens, and what it looks like will be a delightful mystery. What I can focus on is 2025, because that’s the time frame I can do things about without over-stretching.

First objective: take ownership of my body. I’ve had trouble with this for a while, and the relatively recent health stuff has not helped. When you’re chronically ill, it’s often easy to feel like you have no choice in what’s done to your body in the name of your health, and I definitely feel that. I don’t like being told people are proud of me for making the choice to get the surgery or take the meds, because I honestly don’t feel like it was a choice, any more than it’s a choice for me to take my insulin. If I didn’t do it, I’d die. There’s no ownership there.

And with how drastically my body is changing, it’s also difficult to feel like it’s mine. I’ve had dysphoria for as long as I can remember; I’ve never felt comfortable in my skin. I’ve never been able to work out how much of that is gender identity, how much is informed by my illnesses, and now how much is because my body literally looks much different than it did five years ago, but the fact remains that I don’t really like my body, I don’t like how it makes me feel and I don’t feel like it belongs to me.

So what do I do about that? My plan is to at least like the things I can control about it. I’m going to get a hair style that I like and can maintain and get back into dyeing my hair, now that I can shower unaided again. I’m getting back into nail art. I’m going to look into getting my ears re-pierced, and get some pretty costume jewellery. I’m getting back into sewing, and I’m thinking about making my own underwear, because if I want peacocks on my underpants I deserve peacocks on my underpants.

If I don’t like my body, I can at least decorate it nicely.

Second objective is to do more creatively. I used to get a lot of joy out of writing. When I got sick, I suffered from a lot of brain fog; writing became immensely difficult. Heck, reading became immensely difficult. But the ideas are coming back, and I’ve missed writing so, so much.

I’ve got a few things simmering away. One is a dating novel-type game that I need to work out details for, but I’ve got a good brace of characters and stories for it. Supernatural-themed, where you play as an almost mediator-type; you don’t know the answer to everyone’s problems, but you’re good at figuring out who should be talking to who about what.

Another idea, or range of ideas, I suppose, is revisiting the idea of self-publishing the stuff I wrote back in the day. I still get hits on the fanfic website that I posted original stuff on, so it has at least some merit to it, and the people yearn for their spicy romance.

Third objective is more health-related. I need to knuckle down and see a dentist and optometrist and stop telling myself that they’re going to be mad at me for letting maintenance health fall by the wayside while I dealt with nearly dying. I need to touch base again with my physio. I want to keep swimming each week, because it’s good for me and I love the water. I need to follow up on what’s going on with my liver (I might have hepatitis! Because of course I might have hepatitis) and talk to my psych again and go “Cal, I am tired” and he will nod at me and tell me to stop being silly, of course I’m tired.

2024, in many ways, sucked. It was better than 2023, which was better than 2022, but these were not high bars to clear. I have higher standards for 2025. It’s going to be tiring. It’s going to be a lot of work. But it’s going to continue the upward trajectory, or else I will be talking to its manager and finding out why not.