It has come to my attention that May is supposed to be Ehlers-Danlos Awareness Month. I've neglected to post anything, on account of I've been busy coping with the consequences of Ehlers-Danlos.
May is a busy month for me. I perform, I do technical work for live theater, and I admin at a couple of places that deal with both of those things. This May, I ended up working for 21 consecutive days without a break. I didn't exactly mean to, but a combination of a coworker having to go out of town for a family emergency and several people who scheduled their spring recitals in September and then failed to do any planning until April slowly whittled away my days off until I had Things To Do every goddamn day for three solid weeks.
Ehlers-Danlos Syndrome is officially a genetic disorder of collagen formation. The direct effect is that all of the connective tissue in my body is basically made of Silly Putty. Collagen keeps all of your various bones and muscles strung together, so it makes logical sense that this would cause a lot of musculoskeletal problems, and it does: A cardinal symptom is repeated subluxations and/or dislocations of joints, with or without discomfort. Mostly without, in my case -- half the time I don't figure out what's gone weird until a nerve gets pinched or a joint that's supposed to be weight-bearing suddenly isn't.
But you know what other body systems depend on collagen to function? All of them, motherfucker. EDS patients notoriously have trouble with eyesight (ligaments pull on your eye to refocus), teeth (gums are held together by collagen, and collagen is the scaffolding of both bones and dental enamel), digestion (your intestines are stretchy because of collagen), chronic fatigue (when you have to use muscle to hold all the things together those muscles get hella tired), and the big three, blood pressure, breathing, and circulation.
There is a reason I don't work full time. No two EDS patients have exactly the same list of bodily obstacles -- we amuse ourselves by comparing, seriously -- but the worst ones for me are fatigue, musculoskeletal pain, and blood pressure issues. And of those, the fatigue is the one with the most practical impact, because it makes managing literally everything else harder.
None of my issues are likely to kill me per se, but they literally all get in the way of something important. Wrangling them takes a lot of logistics. Think about all of the things you have to do every day. Then add that I have to remember to take medications on time, remember to carry medications I only need sometimes, keep out of the heat, stay away from allergens (like fucking TREE POLLEN), not stay standing too long, not stay sitting too long, carry water, carry electrolyte packets, carry snacks, carry caffeine, don't carry so much it wrecks my back, get enough sleep, don't let my sleep schedule get so wonky I sleep through things, stretch, don't stretch too much, eat regular meals, and like a billion other things I keep forgetting.
Basically, my body is very bad at homeostasis, so I have to micromanage all this shit myself. And fixing some things breaks others. It is a lot of cognitive load, which I have to mash into fewer usable hours per day than most people get.
If you know someone with ADHD, you have inevitably heard someone grouse that 'oh they can be on time to fly out for their vacation, but they can't be on time to work every day?'. The undertone is that they think it's a matter of suspiciously only being able to do things that you enjoy. If you have ADHD, you know that the answer to that is yes, and it's not because work isn't important, it's because you fly out for your vacation once. And being on time for that flight once probably involved days of stressful overplanning, moments of sheer panic, and maybe not sleeping at all the night before.
That is essentially what it takes to get me up to doing 40 hours of work- and work-like things per week. I have to front-load a lot of it, because I straight up will not be able to do anything but work for pretty much all of that time. I admit to enjoying the part where I don't have to think anything over before paying a bill, but I'm not so hot on the part where I live on takeout because I can't stay standing long enough to cook. There's 'tired' and then there's 'not able to focus well enough to safely use the gas range'. I did buy a bunch of freezer junk before I started, but I share a kitchen with two other people and only have so much storage space. I also wasn't in any shape to do dishes, but that was okay, because I didn't contribute any! I didn't eat anything out of a non-disposable container for at least two weeks.
I'm really not keen on the part where I end up on a steady drip of energy drinks and pre-workout stacks to stay conscious. Whenever I am too hot or too tired, my blood pressure tanks hard. (Common for EDS. Blood pressure is controlled by squeezing or relaxing the walls of blood vessels to change the diameter, and hence the pressure, of the fluid going through them. Too stretchy = not enough tension = lazy blood.) Lack of circulation is basically instant anemia. When nothing gets enough oxygen, you get tired, spacy, uncoordinated, and feel generally shitty. As a bonus, if it gets bad enough, you might pass out. I've only done that once when not being stabbed by an uncoordinated phlebotomy student, but it was in the middle of a Green Line B-train, and I'd really like to avoid doing that again.
Under normal circumstances, caffeine and hydration is enough to deal with it, with the occasional bump of Bronkaid if it triggers an asthma attack. Three weeks at full-time? Well, I found out that most flavors of Celsius energy drinks are pretty good; some kinds of bang! are drinkable; Monster and Rockstar are appalling; and Red Bull looks and tastes like you made soda with off-brand Triaminic cough syrup. Aleve works in place of aspirin in an ECA stack, and yes you can absolutely get real ephedrine in the US if you're willing to sign for reasonable quantities at the pharmacy counter -- what do you think is in that Bronkaid? You can also get epinephrine and propylhexedrine inhalers, if you ask nicely and don't look too much like a tweaker. Bronkaid is 25mg ephedrine sulfate per tablet, and that stuff is supposed to last 4-6 hours but I kept having issues with bonking hard when it wore off after about 90 minutes. The main effect of ephedrine is to increase the release and activity of noradrenaline, so I guess I was running low? The solution, at least for me, is NALT, n-acetyl L-tyrosine. Tyrosine and its precursor phenylalanine are in any food you'd think of as having protein in it -- meat, eggs, cheese, soy, legumes, etc. -- and it's the main thing your body makes catecholamines out of, so without it there's just no noradrenaline to encourage. I eat all of those foods, so I don't know what the hell problem I'm having now, but more raw tyrosine fixes it.
This time around I managed to get myself close enough to tachycardia that an alert dog belonging to another student with EDS tried her hardest to get me on the floor lying down. Owner was unconcerned, as was I; I had needed my rescue inhaler, and I knew that was going to happen. I was already sitting down in a chair, drinking electrolyte water, and looked fine, and there's really nothing else to be done at that point until the effect of the epinephrine wears off. There's just no explaining that to a golden retriever, no matter how good a dog she is.
I'm happy to say all the drug fuckery works, and also fuck me I never want to do this again. Stimulants are just borrowing functionality from future you, and eventually the bill comes due.
I will of course have to do this again. We all do. If you read the above tale of convenience food and drug shenanigans with dawning horror, then welcome to my world. Every disabled person you know does this, or something like it. Especially the ones with invisible disabilities. You did this yesterday, why can't you do this today? Because I did it yesterday, you numpty. Because the world demands more of me than I'm realistically capable of, and I have to resort to unrealistic strategies to keep up.
So there's your EDS Awareness posts. Please be aware that unless you are looking straight at me, I am probably at home, in bed, because life is about a billion times harder for me than it needs to be.
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