One of the things that you quickly become aware of with EDS-HM is that collagen is everywhere. It’s not just in your skin, your joint capsules, your eyes, your nail-beds, your gums, it is everywhere, and that messes with every system you have in weird, subtle ways.
In no way is this more apparent and weird than in the stomach.
One of the many things that controls appetite in the healthy person is the stretch receptors in the stomach – Stretch far enough, and they send a signal back up the vagus nerve that you’re full, and should stop eating. They are literally just cells on the surface of the stomach which, when they get far enough apart, ping a signal. Very simple, very much mechanical. Fill up with bread, milk or lard, and it will take the same volume of stuff to activate them, they do not care.
There are two ways that this can go, in EDS: One is that the stretch receptors are insensitive due to being constantly moved around, and thus no matter what you eat, you never feel sated. The other, more common variation, is that you eat a single spoonful of something, it hits the stomach like a four-pound lead shot, and the stretch receptors decide that you’re full.
The result of this is either eating and drinking like Thor until there’s nothing left to eat, then feeling sick for the rest of the day as you try to digest far too much stuff, or settling down to a delicious meal, when you’re ravenous, then eating a mouthful of it and suddenly being put off, even though you know that two chickpeas and a bite of paratha won’t fill you up.
Many zebras spent chunks of their childhoods either being told off for never finishing a whole plate, or being picky eaters, or for constantly eating between meals. Most of us are inveterate grazers, and if left to our own devices won’t have anything approaching a three-square-meals setup, and the remainder eat like snakes; One huge blowout feast on Monday, sleep all of Tuesday, work on Wednesday whilst picking at leftovers, then eat again on Thursday. Repeat.
The cruellest thing? These can both happen to the same person. So one week, they’ll be happily snacking on handfuls of almonds and raisins every hour or so, and the next they’ll be craving buckets of vindaloo and stealing off the side of their dining companions’ plates once they’ve finished their own. So there is no way, whatsoever, to plan ahead.
Anecdotally, many of us report fairly intense food cravings – Never just “I’m hungry”, but more specifically “I need protein” or “I need carbs” or “I need B-vitamins”, even if it’s expressed out-loud as “I need toast, with marmite” or “I need fish and chips”. I sometimes wonder if that’s a side-effect of years of not being able to rely on our stretch receptors, and instead relying on the “taste” receptors in the stomach, which can tell the difference between fats, proteins, glucose, monosodium glutamate and a handful of other things, to mediate hunger for us.
Whatever it is –None of us have a very normal sense of appetite, even before we get to talking about gastroparesis, that often means tube-feeding, either for the long or the short tem, or slow gut transit, which causes food to sit in the stomach for longer than normal and thus to feel less urgent hunger, or our odd adrenal responses that mean that we might not feel hunger at all until it’s absolutely gnawing. And many of us are on some kind of restricted diet due to the combination of other gut problems that EDS causes, making finding suitable food often a complete nightmare – Does it have to be low in FODMAPs? Does it have to be nearly liquid? Does it need to be extremely nutritionally dense, so as not to just take up space uselessly? Does it need to just be a light broth or basically flavoured water, to sate food cravings whilst the actual nutrition goes in through a PEG-tube?
So that’s basically the first challenge, and the first thing that makes the EDS-HM experience deviate from the norm.
(Notable runners-up to be “A is for…”; Ableism, anger, arthritis, arthralgia, Aargh!)