Why am I so blank all the time? Observe the Tiredness/Fatigue Scale to the left. One of the symptoms of connective tissue disorders like Ehlers-Danlos is chronic fatigue. I don't think anyone noticed anything when I was a child, mainly because nobody was paying any attention, and when they were, they were busy approving of the way I camped in the corner with a book and had no discernible needs. It got pretty prominent when I was a teenager and people started trying to force me onto a more conventional 'adult life' schedule, which not coincidentally was when I started pushing back against people's expectations and said people got pissed about it.
Most people most of the time hang around between 0-3. If you've had a colicky infant, you've probably visited 4, and hope to never see it again. I routinely finish my day at 4-5, and it's not unusual for me to have entire weeks of 6, if I'm particularly busy. The amount of physical effort doesn't have as much to do with it as you'd think -- three hours of dance class or hauling equipment around is roughly equivalent to three hours of heavy cognitive load during a chaotic shift at the reception desk. It's having to sustain some sort of effort over a long period of time without a break that's the problem. I can do almost anything for a couple of hours, a couple of times; there is basically nothing that I can do eight hours a day, five days a week, 50+ weeks a year.
You will notice that this chart doesn't actually say anything about how being that tired feels, it just describes how people who are that tired function. When it says "preparing meals is difficult", that doesn't mean I can't physically wrangle pots and pans. It means that I can't focus long enough to safely use a stove. I'll do things like put a pot of water on for pasta, zone out, and then suddenly realize that it started boiling several minutes ago and I've just been staring dumbly at the bubbles the whole time.
If I try to do more than about 20 hours of 'job' in a week it eats into my ability to do important 'not-job' things, like clean my living space, feed myself, or shower.
Going to bed at a 5 on either scale does not mean I wake up back at 0, either. I am very, very rarely at 0. Usually it involves drugs. Unfortunately, that means that being at 0 is incompatible with being in close enough contact with reality to care about my to-do list -- I confine myself to wandering around the apartment while out of my skull, at most about once a week, and the most coherent thing I can do is watch YouTube and knit. Getting a break does help, but the trade-off is that I have to make up the time some other day, when I'm uncomfortable but can kind of think.
I very rarely bother telling anyone about any of this. Most people have a lot of trouble wrapping their heads around the idea of being in this much discomfort/distress pretty much all the time and not devoting your entire earthly being to fixing the problem. It leads them to be very 'helpful' and most people do two things that I find especially draining.
One of them is fuss. They hover and express sympathy and check in constantly. It forces me to divert energy from the 'coping' subroutine to the 'being sociable' one, when I can least afford it. They mean well, but they also tend to get upset if they realize that it's not very helpful. The only way I've ever found to stop it is to either conceal all evidence that I'm having a hard time, so they don't start in the first place, or to manage their emotions about my condition by lying through my teeth and telling them how much I appreciate their solicitous attention and don't want to trouble them to do any more of it. Telling people bluntly that this reaction makes things worse mostly makes them withdraw to give me laser-powered concerned looks for the rest of the time I'm around.
Often this comes with suggestions on how to fix it. I have started feeling white-hot rage whenever anyone asks if I've tried meditation. I have. It makes things worse. Aside from the fact that sitting still hurts worse than being in motion, almost all meditation sequences start by telling you to 'check in' with your body. All I can think is: Bitch, I have a connective tissue disorder. It causes chronic incurable musculoskeletal pain. I do not want to 'check in' with my body. I have specifically instructed my body not to 'check in' with me unless I'm about to break something important. Dissociation is my friend.
The other one is they try to excuse me from doing anything. I know they do this because this is what they would want. They think it's a good idea because pain/fatigue for them is a temporary state; they can wait it out and come back to a task later, when they feel better. This is not a temporary state for me. If I'm that bad, and I'm still here, then obviously I thought doing this thing was important enough to show up for, regardless of my condition. What would actually be helpful is having other people take over the stupid, repetitive, mundane shit that is getting in the way of me doing the important thing, so I can get it over with and go home.
It is very rare to find anyone who can intuitively guess which things I class as 'stupid shit' and consequently, even if I try to explain this, they tend to fall into a loop where they do one thing (probably not up to my standards, which is infinitely more irritating when I'm already forcing myself to stay functional), then come back for orders. This still makes me responsible for the executive function part of the task, which is actually harder than the physical one, and negates the point of getting someone else to do it.
The least energy-intensive solution I've found is just to make sure nobody notices I'm having trouble. Policing my speech and facial expression does take effort, but part of that effort is folded into the work of keeping myself from biting anyone's head clean off, which I have to do no matter what, because less function = more cranky.
All of which is to say, I haven't written much lately, because the only thoughts I'd be committing to electrons are things like 'I hate everything', 'when do I get to sit down', 'why are people like this', 'fuck this weather I am tired of migraines', or 'hnbvggggggggggggggggggggggggggggggggg' as I faceplant into the keyboard.
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