Warning: this will be a rant. It will contain negative things, even though good things happen and work out in my life too, because that's what I need to clackity-clack right out of my head and lightly boiling veins right now.


I just spent the day in the company of a woman who reminded me at least once an hour of the many mistakes that I made yesterday while operating under crazy stress, tons of pain and flaring, and 3 hours of sleep in 2 days. And she just couldn't let it rest and how upset it made her and all that jazz. I got REALLY sick of hearing my faults reiterated, especially when I'm already stressed and overwhelmed to the max and barely operating in "human" mode through the stress, crazy severe depression, and fun fun symptoms. So of course I overdid it carrying my own stuff and such, because I was already "below" her and I couldn't let her feel anymore, well, entitled because I really couldn't bear it.

She's not a bad or evil person. We had some good times, laughed a lot through the convos. But no matter how much I explained my intentions within the mistakes that I didn't know I was making and apologized with full owning of my own responsibility, she just could. not. stop. bringing it up. For instance, when I explained that I was late to pick her up this morning with Grampa (yes, and never texted ahead to tell her), I explained that it was because I was throwing up when Grampa got there and had to kinda stop first, and also I have only been out of the house lately at 2 a.m. so I forgot to factor in work/school morning traffic. Her reply was to ask why I didn't text her while I was vomiting? Yeah. Sigh. But, hey, we did have some fun here and there, cause she's a decent person and funny, so it wasn't a misery every second, but I felt very trapped and under a microscope. I know she's in a stressed condition herself, so I'm seriously hoping that all of…that… is just another misunderstanding brought on by stress and the awkwardness of not really knowing one another. The ways that we interpret things seem to be at complete odds to each other. It was just… I dunno. It was just a lot of conversation that made me feel like a shitbag for being, well, me. Like everything that is just intrinsically me and me living life is a pet peeve of hers to some degree or another.

I am overly sensitive right now, I know, but I really don't want to spend time with her in the future under my own volition. I don't want her in my home because it's my sanctuary, the one place where I can fuck up but cuddle my kitties and know that I'm still a person that other people like, or to just fall apart and slowly put myself back together bit by bit. If that gets tainted because she misunderstands something I say and starts giving me shit or gets mad or something, I feel like I'll be losing something important. However, her husband is the one that I have been building a friendship with, not her, though I'm not even sure how or if I'll be able to handle him for a while, and he and Corey have already bonded as nerd bros, playing Magic and talking about DnD campaigns and running Diablo dungeons together, etc, and I absolutely do not want to ruin a budding friendship of Corey's. Too many of his friends have moved away, and our social circle has become practically nonexistent. It is the tatters of the tatters of the original, and it is sad because he works such odd hours that he can't just go out and go to… something… and he doesn't like sports, and other stuff. He prefers his friends be close to his level of intelligence, so that cuts out a huge portion of the population right there, lol. Anyway, yes, the guys are building a friendship, and the guy and I are building a friendship, but I don't know how much I am expected to like or interact with the wife in the future of said friendship. However, they have a style of communication that seems to be similar to what Corey and I have, so they share anecdotes of the conversations they had throughout the day, including texts and such, so it's not like I can even tell him any of this without having the whole thing blow up in my face like it did this time and who knows what the hell will happen then. Only the next time I'd be expecting the explosion, so I might be able to duck. I'm tired just thinking about it. I couldn't wait to get home. So much for the claim of hating drama, cause this shit has been pretty dramatic in some ways.

I'll give you a tip for life and interacting with people: if somebody fucks up, even if it seems like a major deal to you, accept their goddamn apology like a decent human being. If they are sincere, that is. And I was. And… yeah. Never heard an acceptance of that apology, assurance that we were cool… just an endless recounting of her offended sensibilities. I went back and read my texts and hers and I can see her side of things now that I know what to look for, but I can also see that I didn't mean any of what she interpreted, so… it was basically a horrible day, because she was my ride to LA and back for the pain doc appointment. That went okay, not an abysmal tragedy like last month where I was running from pharmacy to pharmacy to find one that had the stock to fill my prescriptions because the DEA/wholesalers are mucking up the system thanks to the "war on drugs" that's ruining my ability to have a semblance of a functioning life.

//break for rant regarding current difficulties with "the system"//

I am very lucky I didn't end up in the hospital this month, being forced to quit a serious and strong dosage of a formidable type of pain medication cold turkey, as I couldn't find a pharmacy that had the ability (or willingness, *ahem*) to fill even part of my script. Do you know how freaking dangerous that is? And with the Intractable Pain that could already severely damage body systems when let run unchecked as "the system" is forcing me to let it remain unchecked? What happened last month could literally have killed me, or turned me into a total cripple. It's terrifying, having cold impersonal forces playing with your life and livelihood and having such a limited ability to impact the outcome or the process itself. Fucking terrifying. Especially when you're talking not only livelihood, as in the ability to dress yourself and shovel food and liquid into your mouth and deal with the digested products, or even the ability to sleep in a normal manner, but when you are talking about your literal life. And mine is not even 3 decades old. If something terrible happens to me now, I will have to deal with that for, well, the rest of it, and I really, really have enough to deal with already.

//end rant//

Today's experience remanded me that I've been feeling very strongly lately like people just don't understand what kind of pain I'm in or that it's bad enough to make me really sick, like, all the time, and it's really easy to brush off exactly how hard every little thing is for me.  That could probably be because I am smiling and laughing and chatting with the person, walking around as much as I can handle at the time, etc, because I hate being a burden and being beholden to people, and I really want to keep as much independence and dignity as I can. But life is hard for me and getting harder by the month, so let me rectify that bit of ignorance with a brief explanation that may lend itself to a better understanding. It's difficult to truly comprehend unless you have experienced it, though a good effort might get you close, intellectually.

So. Imagine that you've gotten into an accident of some kind, perhaps a vehicle on vehicle crash or being hit by a truck while you were moving in front of it as a walking pedestrian or a bicyclist or maybe on a motorcycle. You get hit by this other vehicle and you are slammed around all over the place cause you flip over at least once and make sure that all sides of you are evenly "tenderized", hehe, before you come to a crushing halt due to reacquainting yourself with the Lady Gravity, who is a cruel mistress when shunned even briefly. Immediately, you begin to feel the effects of this reaquaintaince, especially if your imagined accident included you being actively run over by the vehicle that hit you, which would be a nice and accurate touch. As you groggily try to sit up, you notice and begin to catalogue the various pains and injuries you've just acquired, though not through any fault of your own. It was totally out of the blue and not your fault, but you're sprawled on the ground regardless, so you try to be productive and figure out what still works while you wait for the ambulance.

Skip forward to, oh, say, the hospital. You have realized the extent of your injuries, and the full understanding of what life is going to be like until you heal up is beginning to wash over you in confused, concussed waves. You can't quite think straight, and you're getting words a little mixed up, dropping some completely, and using Spoonerisms for the first time. Your head aches with every throb of your pulse, any noise or vibration that comes from your pipes, every slight toss of the head. In fact, even scratching your eyebrow leaves you wincing and exhausted, but you've just noticed something else: everything hurts. It isn't a collection of various pains that kind of wait in the background until attention is turned to them to speak up, no no. Nothing so shy and considerate. These are all large, strident pains made of many different flavors and modes of operation. The pulled and strained and bruised muscles are a fierce, tight ache that clenches in on itself  the longer it continues, underscored by a constant, full body throbbing ache. You feel like a giant bruise, and when you move the injured muscles they seem to complain with the stiffness already settling into the joints and tendons, sending sharp, unpleasant stabs of pain through the abused tissues.

You find that all of your bones are broken. All of the major bones that hold you up and keep stuff in are cracked like so many sturdy twigs. No bones sticking out anywhere, but definitely all at least cracked enough to compromise their integrity. Not only are your muscles constantly complaining at you, but now your skeleton cannot and will not hold you up as it was intended to do as its integrity has been compromised. Your muscles have to kick in overtime and extra strength to make up the lack, but that only causes them to tire faster and begin to cramp and rebel that much sooner, and they were already bruised and throbbing and not happy before the added work. Since all of your major bones are broken, you will now have to rethink every single aspect of your daily routine. Your hands and fingers hurt too much and are too weak to support your pen to sign your name, or grasp your toothbrush, and there is no way that you can shower with any regularity or without some kind of assistance. Using the remote to navigate through Netflix is okay for one or two clicks, but just holding the remote in the air can only be done for a couple of seconds, if you can manage it.

Your legs just don't hold you up so well right now, what's more they hurt like crazy all the time, from the inside of the bone itself all the way out to the skin, and you need help getting up, getting down into chairs, standing if there is no wheelchair/walker nearby, getting in and out of vehicles, getting into and out of bed, putting on pants (because legs and hands are broken, so of limited use), and putting on shoes is so far beyond you that it's not even funny. You can't wear a bra of any kind because of your poor tortured ribs, and in fact you can't wear most or any of the clothes that are typical of your wardrobe because they bind in places too much and cause untold agony with their rough fabrics and their awkward fasteners and cutting into tender skin and the sheer volume of energy it would take to don and doff those duds.

You also can't sit or lie in certain positions or for very long, and you have pillows everywhere to cushion your delicate, pained self. There's not much to do because you're limited to lying or reclining, because when you get up from the prone position everything goes black briefly and a very loud rushing, roaring sounds fills your ears and drowns out everything else for the next minute and a half, at least, though it gradually fades. You could watch a movie, or maybe read a book, but good luck paying much attention to it, the way you feel and the nausea that's sloshing around in your mostly empty belly. You can't stand up to cook, either, so it's whatever you can throw together in the time that you're upright-- if you haven't passed out on the floor or something by then--before you somehow drag your poor carcass back to whatever piece of furniture you've claimed as your kingdom and throne. (Shoot, it could be the actual "throne", whatever works for you.) You're not really hungry, though you probably should eat so you can take your meds on time in a bit, but your pain levels are rising rapidly and you can feel them going through the figurative roof. You use the bit of pain management that you've been taught and it seems to work okay for a microt or three, but then the pain distracts you again before you make much headway. You really, really, really need another dose, but it's not time yet and you don't want to be accused of being a druggie, or addicted, or run out early and be flagged as addicted and not be able to access the medication you need in the future, so you wait. You wait till the proper time and write it down where you're keeping track so you don't mess up the schedule that will make your meds last until the next fill.

Now, though, the pain is raging and it is way too intense to be stopped by that silly medication, so you suffer in this horrible cycle of "I have to wait, but I'd like to take another pill NOW" and "While I was waiting my pain went up 3 scale points, and I need to go to the emergency room now because I can't handle this here at home", but the ER doesn't want to see you either, so you… cope? Somehow. Urgent Care, perhaps? While you are weighing your options through your frustrated, angry tears you realize that you're pouring sweat while shivering lightly, and you realize that you have yet another fever for no real reason. Shaking your head very, very carefully and very minimally, you turn and crawl home (figuratively) to lick your wounds in the privacy of the walls you call home.


All that I wrote about the experience of doing life after the injuries is "a day in the life" of a young woman with very, very severe Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome, among several other goodies. Well, I can use my hands better than I wrote about for now, so I can brush my own hair, put my clothes on most of the time, brush my teeth, use a pen, type (obviously), but shoes are still very difficult for me. It hurts too much. Muscles, bones, joints, skin… all of it.

So there, people without severe pain diseases. THIS is what I'm experiencing when you come over to watch a movie, when you are giving me a ride to the doctor or the store, when I'm surfing Facebook and participating in a Poke War, when I volunteer to help you do anything… always. It feels like this *always* for me, and that's just my "new normal". I hate it, and I miss being more independent, and I feel like I'm about to lose my freaking mind sometimes when I'm flaring for whatever reason and my personal pain scale has to stretch to accommodate new numbers, or when yet another medical bill appears in the mailbox. I hate the fact that it never, ever goes away or lowers to an ignorable level. It's always there, always distracting me, always chewing at my brain and body, but it does carry with it a measure of pride, feeling like a Spartan among commoners for the commitment it takes to still be civil to people when you feel so shitty, to still TRY when every day is the same, a variation on a theme, and you pretty much know how it'll turn out but you fuckin' try anyway because you can't quit. It's kind of not an option when you're trying to life.

So with that in mind, I'll just try to be civil to the lady who hurt me so badly today, and see what comes of it. I'm too tired from trying to life to do anything else. I have been operating at max capacity for stress and obligations for weeks now. Priorities. And she just… isn't one. I'm not sure about the husband right now, either. They are a team, and I don't want to break the set if I don't have to, in terms of friendship. Does that make any sense? It's going to have to, because I'm going to bed now, cause UGH. What a long day. I feel better after vomiting my angry words into cyberspace, though. Blogging has always been such a good processing tool for me.

If you want to learn more about Intractable Pain, here's a good, brief little primer, and here is a quote from it:
"Based on our clinical observations, within the chronic pain population, a subgroup has an intractable pain syndrome or disease. All have incurable, extremely painful conditions, as evidenced by failure of various interventions to control their pain, including surgery, nerve blocks, physical rehabilitation, and weak opioids. Patients describe their pain as constant, debilitating, and potent enough to interfere with sleep and sexual function. Many report suicidal thoughts for the sole purpose of stopping the pain, incessant crying spells, fatigue, depression, social isolation, restriction of mobility, and numerous bed- or couch-bound days."