It feels appropriate to be writing this the day after a long journey, because it’s probably a good illustration of the boom-bust nature of energy for many of us with EDS-hypermobility. For some reason, it seems to come with really strange adrenal glands – Meaning that we get spikes of completely irrepressible energy, interspersed between absolute, crushing fatigue. If the spike of energy is in the middle of the night, it means we’ll be up until sunrise, even if it’s just lying very still whilst the brain whirrs and clicks, either with something useful (Planning serious work!) or something that started useful but ended up ridiculous (How do I design the lift mechanisms in this skyscraper that I will never build?) or something completely useless (ANXIETY! AAARGH!). If the spike in mental energy and physical ability manage to coincide – That’s the time for massive projects, and sudden outpourings of work, hard exercise, or long journeys.
Today, even getting this writing out is like being drowned in toffee. The kettle, where my cocoa is, is visible from bed, on the landing, but it might as well be on the moon.
One of the things that is right at the core of talking about hypermobility syndrome is talking about pacing, and it’s one of the things that makes the average zebra want to rip their hair out. Pacing doesn’t just mean “Try to stay a little bit active every day, even if it’s just making a cup of cocoa”, which is sometimes a problem, but is at least a problem that people understand, it also means “When you have that sudden burst of energy, don’t try to do everything at once.” And that’s the part that hurts, and honestly that makes it so frustrating and limiting. “Pace yourself” means “Even if you feel like you can complete this project today, stop before you feel anywhere near ready to” and “When you’re at the gym, if you feel like you can do twenty reps, do five.”
Living life in tiny portions sometimes feels like no life at all. But, well, the result of trying not to – Of saying “I can do all of the things I have to do today, so I will” – results in awful things. The most immediately obvious one is that it can result in injury; Luxations happen more often when you’re fatigued and not in perfect control of your movements, but the most insidious one is the energy crash that comes the day (or the hour) after doing something “too much”. Not just a little bit of sleepiness or stiffness that wears off throughout the course of the day, but full-on, unable-to-raise-head-to-watch-TV, unable-to-listen-closely-enough-to-comprehend-an-audiobook, all-energy-devoted-to-breathing-and-blinking fatigue. Honestly, on those days it’s sometimes easier just to keep the eyes closed, to avoid needing to blink. And, again, it hurts.
In that state of exhaustion, any luxation is going to have to stay luxated. Any limb that’s pinned under another limb, or a twist of the torso from how you woke up, or even just having the wrong number of pillows so getting a progressively more sore neck, is just going to have to stay there. After three or four hours, if you’re lucky, you might be able to roll over and reach your medication, and a carton of something to wash it down with. Maybe not. Maybe you’re just stuck. And that, of course, interacts badly with the adrenal stuff – Lying still and in pain will increase adrenaline metabolism, which will increase energy and anxiety and result in more tension in more muscle groups, which will result in more pain (since you still can’t really move adequately), which results in days of insomnia punctuated by random naps, for days or weeks after a crash. And the crash itself can last for days, or weeks, or, in horrible instances, months.
No wonder we all seem to have disordered sleep to some extent or another.
(Notable runners-up to be “E is for…”; Edvard Ehlers, eyesight, eyelids, embryology)