Flares (I Don’t Mean Pants)


I should not be typing. The rules are actually really simple, which is why they are hard to follow. The rule is: if something hurts, don’t do that. Stop. Do something else.

My problem is that there isn’t anything I want to do that doesn’t use my hands. Can’t type? Let’s sew. No? Let’s draw. No? Let’s play a computer game. No? Let’s read a book (involves holding a book or device, so….no). I already read the script for House of Blue Leaves, smarty-pants, so no, I don’t have anything that is just some pages xeroxed and stapled together to read. I read it twice.

This rebelliousness stems from the fact that the day before yesterday my joints started to hurt, a lot, for no reason that I could fathom. The new shrink says that trying to figure out why is counter-productive–it feeds the ego that then keeps the cycle going instead of simply saying, “My left wrist hurts really badly” and leaving it at that.

So, my left wrist hurts really badly, and I decided to wear a splint on it today because after I ran through the usual mental games of, “Should call the doctor” and “Should get an image of it!” and “What if tendonitis/-osis/-opathy? Alarm!” and landed where I need to land which is, “Nothing to be done. No treatment. Splinting. Ice. Heat. Suck it up, Buttercup” which helps ONLY in that it saves me money so: Splint. The splint, for reasons unknown* (other Whys, as it were) seems violently uncomfortable today, but I am goddamn well wearing it anyway because it’s The Only Thing.

It’s human nature (and yes, the rumors of my humanity hold a degree of truth) to try to figure out Why so that we can then ferret out the crucial question of “How to stop/avoid/prevent?” In my case, this becomes a somewhat stupid dog chasing its tail and randomly catching it only to give it a solid chomp and start the game all over again. The Why is that I have a rare genetic condition resulting in defective collagen that means all connective tissues are flawed and it causes joint pain progressively, sporadically, often for reasons no one can explain.

That is just like, the most unsatisfying Why in the world. It’s the kind of Why to which I want to say, “Fuck that, dude, that’s stupid.” (I say “dude” rather a lot. It’s a character flaw and I’m sorry but that’s just how it is). Unsolvable Whys are like falling just short of an orgasm–after all this work, the thing you were trying to get falters and dies in (or on) your hands. Perfect. But it remains that the answer is still the answer and its self-worth is not dependent on whether or not I like it.

The seductiveness of the Why is that if you work on it enough there is a slim chance you will find a solution hiding behind it, so you start to focus all your energy on untangling something that only a few doctors in the entire country even know about and even fewer will see patients for. IF you get into see them, they will say that there is NO TREATMENT. There is no solution. No magic combination of diet, drugs, activity or lack thereof, or mental fortitude that will change the fact that I have EDS. Each of those things can sometimes help, but just because something helped once doesn’t mean it will help again.

Things have flared up, and there is no triggering event that I can think of. The last flare I realized that part of the issue was a pair of boots that I would pull off rather than unlacing. I was clearly tearing up my ankle each time I did that, so I replaced the laces with elastic and after a few weeks it got better. Or, maybe those things weren’t ever remotely related, there’s no way to tell. I’m not wearing any boots now, it’s warm weather, so nothing is pulling on anything.

Even that much figuring is to plunge right on down the rabbit hole trying to figure it out. I can’t. I can only a) not do things that hurt (maybe later) and b) immobilize the offended joint. It’s my own problem that I find that completely unsatisfying.




*OR STUPID PUT IT ON WRONG. There’s that possible Why.


About Guenevere

I am an artist, a stitcher and a costume designer expressing myself through design, costuming, sewing, drawing and teaching. I also have Ehler's Danlos Syndrome, Type 1, and suffer daily chronic pain, degenerative changes to my joints, IBS, POTS and likely MCAS. Life is one big picnic.

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