So about that hospital thing.

So this is where we are.

When I was admitted to hospital at the start of September, I was severely unwell. I’m not sure who realised how bad things had got, because I’m good at talking about some things but very good at not talking about other things, and I had reached the point where I was quietly, 100 per cent certain that I was not going to see 40. That wasn’t the 4am depression “I feel like I’m going to die right now” crying crash, either; that was the background noise of most of my days, that sometime in the next two or so years, all of the things going wrong would just quietly topple over and that would be it.

The trouble with being complex, though, no matter what House tries to tell you, I’d that there’s no LOLWTF department that’s waiting to treat you like a fun little puzzle. You’re just weird and inconvenient and you don’t make sense, and the medical system isn’t set up to deal with you, and your doctors are being as strangled by the red tape as you are.

In a way, the pitting oedema was a good thing, because it gave my endocrinologist an excuse to admit me. You have to have a reason, after all. Paperwork has ticky boxes and there’s no “idk lol” category for “Why are you admitting this patient”. So my endocrinologist put in “YES IT IS FOR FLUID OVERLOAD” which was A LIE and confused all the poor nurses on the endocrine ward, because they would read my paperwork and see “admitted for fluid overload” and then see me being allowed to drink as much water as I wanted which is the opposite of what happens when you have fluid overload.

But I digress.

So we played some shenanigans and got me into the hospital and promptly got me seen by ALL THE SPECIALISTS. Initial tests cleared my legs for DVTs; the oedema there is likely, as we’d previously thought, a result of POTS. Annoying, but manageable. More on that later.

Further tests cleared organ involvement. I know I say nothing in my body works right, but in actual fact, the chassis is in pretty good shape. My kidneys function well, my heart is apparently fantastic and not just for a fat woman, and the only issue my liver has is the usual weight-related fatty liver that will ease as I lose weight; its actual function is good. I’ve got a bit of scarring on my lungs from the pulmonary embolism back in 2010 but I can breathe fine lying flat and my saturation is good. No concerns there.

The problems with me lie in my programming – basically, if it’s hormonal, it does not work right and probably hasn’t for a long time. This is a big problem, because the endocrine and autoimmune systems are still not very well understood. I’ve been a mess of not working right probably since I first developed diabetes, and that’s nobody’s fault, but it’s going to take a hell of a lot of time and work to even begin untangling.

So what did we do this last month? Well, a big step is my weight. I’ve never been one to say my health is bad just because I’m fat; I’ve also never been one to say that none of my health problems are because I’m fat. Being as fat as I am is bad for me; that’s a fact. What we could never work out was why I had so much trouble with my weight, even when the doctors agreed that I should be losing something.

It turns out that when you never feel hungry and you never feel full, your hormones don’t operate correctly and you don’t digest or use food properly. And I’ve been living like that for over a decade, with my body trying to figure out if food is actually a thing that, like, exists.

Whoops.

So what we’ve done is a type of bariatric procedure called a gastric balloon. It’s a balloon filled with silicone inserted into the stomach, usually with the intent of reducing the stomach capacity to help train you into eating smaller meals, because in disordered eating, especially binge eating, the stomach can stretch and this sort of procedure can be helpful in re-learning healthy portion control. In my case, it has the added benefit of returning hunger and fullness signals because it takes up space in a maladaptive stomach that wasn’t sending those signals until it was absolutely empty or full to the point of sickness.

It’s actually kind of nice to feel hungry again. It’s not “oh, I haven’t eaten in 12 hours and now I feel nauseated”. It’s “oh, I should have a bite but it’s not urgent” and it’s not urgent.

Also I’ve lost 20 kilos. That’s not the rate we want to keep; my endocrinologist says 1 to 2 kilos a week is the most I should expect or aim for. The first month is always dramatic with fluid and glycogen and should not be maintained. But with that loss has come a dramatic increase in mobility that I didn’t expect. I’m moving so much easier already. No miracles, but a nice change.

This is the start. It’s a very long road ahead, and it’s going to be a lot of work, and make no mistake, I am still very sick. But we have made some good concrete steps, I have a good team and a solid plan, and after a month, I am home with my people and my cats and I can see past 40.