Monday, May 15, 2017

This pain

The pain of EDS. There really is no way to describe this kind of pain. Plus, not only do painkillers not work very well anymore, they can't be processed properly, by the most severely and internally affected. They tend to just upset innards ie' gastric organs ..causing nausea and a feeling of poisoning which is not worth that partial painful relief. This is what's come to be over here. Yes, yes.. I use medical marijuana; CBD oil, and indica tincture. I can't tolerate large amounts but smaller amounts take the edge of without offence.
People have no idea. If I wasn't more determined to live some kind of a life, I'd just lock myself away and be a total recluse with my comforts. This pain and this kind of illness is enough to make someone go mad. Turn into a reclusive, eccentric, decrepit, isolating frou frou surrounded by a sea of stuffed animals and, if not allergic, therepeutic pets. It's painful to talk. It's painful to do. and yet I still try to do. To be what I can. Because I want to. Part of me likes this and needs this, but there is so much desire beyond limits - I can stubbornly disassociate until I get to an 8.5/10 and then, I am done. Blinds up. Dark, desolate castle. Locked in a room in the tower, amid a nasty draft and warm blankets piled around in vain. Missing out, and just unable. Consumptive and trembling, candles lit, tattered canopy lain. The degree of this agony has no ability to be aptly verbally expressed.
I cannot connect the way I want to. I cannot do things the way I want to. It is lonely and devastating. So I feel like I have to find something that'll be helpful and purposeful to people instead, to make up for it, to be of purpose in this life, as well as steal joy for myself as a daily reprieve from the vicious physical pain and tragic limits. No it's not just autism. I don't know if it ever was. But it is an intense double whammy with being a neurodivergent, though socially motivated, person with inevitable limits. Those lines are very very blurred for me now, which is which..and were they always, though I didn't realize it.
I don't even know what's the truth anymore.. about it... though I do know that I am naturally divergent, and it's what caused me to be so prone to the torturous ailments which I have to live with now, and have always lived with to some extend. But I made the mistake of slapping bandaids on cuts as tight as I could, and leaving them to fester. I pay for this now. That's another entry.
But no, I am not saying autism itself "is a disease" but, we sure as hell do take the brunt of these kinds of afflictions. There are reasons for that, for another entry too. I don't know how to even articulate this pain, but all I can say is, I suffer in silence a lot more than I have ever displayed. I don't like to appear too vulnerable, and I used to put up shields of false pride. This has backfired on me badly in the past, and I ended up far more hurt than I was hurting initially. I still perpetually reach for relief, but this time, in ways that do not hurt me further. Those are often agonizingly and infuriatingly hard to touch, and even harder to grasp and hold. For so many reasons. That, too, is another entry.
This pain. I feel like such a jaded woman. It appears like I could have things going for me, and I once did before I got worse. I grieve the fact that I let resentful, insecure abusive people lash out on me. I let them make me feel bad about myself, and it took away from the precious extra energies which I once had more of, even just a few years ago. I wore my heart on my sleeve as I let them rip off my wings and leave the wounds gaping un-bandaged, infection setting in.
Hard work, determination and faith brought me back to life at least, and literally, because in the past three years I have almost died a few times, falling into flare ups so bad that I really didn't know if I'd make it through. Frustratingly, I have little concrete proof of exactly how that happened, because it's EDS of course, and wrenchingly, that is currently how EDS is. We need research so desperately.

I know it's happened to others, some of whom don't make it. I hope to soon be able to identify this as real and share it, so that it can be put to a stop and prevented. Because I stand in the truth of what I know and what those closest to me know, and have witnessed. What happened to me, and what I did, is not easy to explain, because I lot of it was intuitive, and weighing my intuition with patterns of logic, post investigation of others with this horrifying but mysterious illness' experiences. What they had done, what information they had, since some live in areas where there is at least more information than I have in the area I live, as my medical system is way behind in it's knowledge or rare/complex disease. Thank god for the internet - but this is definitely another entry.
Now, I appear like I could maybe go places. Though things privately wax and wane more than I share, and I could one day be gone - though I live every day balancing on the hope that I will live on. I share to live, to interact, in ways I can that is, but hopefully with that, I can make some kind of purposeful impact. I'm still working on that and I intend to spin this spindle, and making it positive and dynamic in spite of it's potential to be a sad tragedy. That is not how I want to present myself or be remembered. 
I'm not nearly out of the woods, nor will I ever be completely, and the clock is ticking. I swim against river rapids, with this unfortunate body of mine melting from the inside out via fragile collagen. This collagen is targeted, as a form of a mysterious but horrifying cellular, mitochondrial mayhem, which I was prone to, which I struggled throughout my life a little, though only a little.

But I didn't like it, I didn't want to accept it, so I tried to fight it. Then, it lapsed into a aversive chain reaction of misfirings, through a series of negative energy exposures, much of which I made the mistake of letting in. The intended damage was done, and now, they're like strings of lights burning out one by one, each smoking and sparking nerve endings, shutting off and making things weaker, as tissues invisibly micro tear on micro tear, and scar, and micro tear. I melt. I burn out. I die as I fight to live.
Whoever thought that the soft skin I was born with would be the biggest "curse" in the "suit" of a "blessing" ever know to humankind. 

You are igneous and I am shale - maybe even soapstone - under the heat of the world, which is rising. The doll is cracked to pieces on the shelf of a vacant post house fire basement, but her face remains intact. She looks superficially pretty there, but she is alone, and she is crying blood from the inside. Still determined to be here. Still determined to somehow, in one way or another, make it all worth it in the end.
This pain. There are no good words.
 - Rosie G
www.bionicrose.org 


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