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11:53am
August 2, 2015
Baby Hemlocks growing from a mossy nurse log. (:
11:53am
August 2, 2015
Nurse trees are so lovely. One tree died and then gave the opportunity for other trees to thrive on it. There are at least four different trees growing out of this old stump.
11:50am
August 2, 2015
Please help.
I’m a mentally ill, disabled person living on my own. Right now I’m applying for SSI, and it will be months before I get my evaluation. In the meantime, I can’t afford my basic living expenses without help.
If you can, please donate to desertlily777@hotmail.com on Paypal. This is my friend’s Paypal, so please leave a note saying that this is ‘for Skeleton.’*
Signal boosts would be greatly appreciated, too. Thank you.
*It was formerly ‘for lichgem’ before I changed my URL.
11:46am
August 2, 2015
Being in pain is a lot of work
I hate that no one really talks about how exhausting it is to be in pain.
Why is this never really discussed? I would think it’s obvious. Your body exerts a lot of energy to be in pain; muscles tense and cramp (seriously, flex your arm as hard as you can, now hold it like that for an entire day without ever relaxing it even once, you think that’s not going to make you tired?), nerves spend all day sending signals that make it feel like all your joints are full of static electricity, constantly measuring your breathing and movement to try not to make the pain worse takes effort and concentration (which is not a zero-calorie affair, your brain burns more calories to actively concentrate on things), those involuntary twitches whenever the pain spikes aren’t cost-free either and a lot of little movements add up, trying to hold a specific posture so that the pain isn’t quite as bad is a lot of work, and on and on and on.
Now imagine that being every single day of your life and try to tell me I can’t be tired because “all pain does is hurt.”
Being in pain really, really is completely exhausting.
One thing I tell people who don’t get it: I have trigeminal neuralgia. I know people who use wheelchairs because of trigeminal neuralgia. Trigeminal neuralgia is facial pain that does not affect your legs directly. But it can hurt so bad that some people can’t walk straight or balance and they fall over and need a cane or crutches or a walker or a wheelchair.
When my TN pain was at its worst, I felt like I was running laps all day long. Like by the end of the day I would be so exhausted that my body felt like I’d had the crap beat out of it and then I’d taken up really intensive jogging or something. And remember, this is facial pain that exists in just one nerve in your face. But it affects your whole body. And yes, it’s absolutely exhausting in a way that very little else can be. I know my adrenal insufficiency probably makes the exhaustion of pain even worse than usual, but even without AI pain is plenty exhausting.
And you’re right, nobody talks about it.
Just like they don’t talk about the really weird-ass dissociative effects you get when your pain climbs to around 8 on the pain scale. Such that you can be lying there unable to move and moaning and then asking “Why is my body acting like it’s in unbearable pain when I can’t feel anything at all anymore?”
And they don’t talk about the way really severe pain fluctuates, like you go in and out of that dissociative state, it doesn’t stay the same all the time, and it’s very confusing to be in the middle of.
11:40am
August 2, 2015
So I’m on a double dose of steroids, and it’s really hot…
…which means yesterday I went up to the convenience store and bought a crapload of ice cream. It makes it a little harder to burp my g-tube (because anything that goes into my stomach has to come out the tube, otherwise it sits in my stomach until it goes into my lungs), but so hot and so hungry (steroids create a bottomless pit effect even when your stomach isn’t draining properly and even if you’re getting all the nutrition you actually need through a feeding tube going straight to your intestines) that I couldn’t make myself care about that.
All I had in the house to eat was soup, and hot soup is not something that is remotely appealing in this weather. (I can pretty much only eat liquids. Solids stick in the tube. Even ice cream with nuts is out, because chewed-up nuts make burping the g-tube agonizingly slow and sometimes impossible. I once tried New York Super Fudge Chunk, and that was an amazingly mistaken mistake. It took two straight hours to get everything out again, and I got heat exhaustion in the meantime.)
Anyway when I went out to buy four large cartons of ice cream, I expected a reaction. I’m fat. Evidence of being fat and about to pig out, in public, tends to provoke people to staring and judging and laughing.
But it’s so hot out these days.
That I got lots of reactions.
And nearly all of them were sheer envy. :-)
Like, lots of thumbs up, smiling, “Oh my god I wish I was eating ALL of that right now”, that kind of thing.
I did not get a single negative reaction.
And that was really cool.
I never realize how much I have to armor myself against negative reactions until I get positive reactions and see how different it feels from normal.
11:29am
August 2, 2015
➸ The Myth of "Official": autism and self-diagnosis skeptics
I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity. If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have. The fact that they didn’t respect my official diagnosis, says everything. They only say this crap to manipulate people.
I also got accused of stupidly self-diagnosing for going in to see a doctor and saying “I think X may be going on”. Which was ultimately wrong, but he (and several after him) concurred that X probably was the problem.
That would usually be considered a totally fine and normal course of action if you were talking about something more value neutral, like high blood pressure or a broken arm.
But, when it’s something stigmatized which somebody else doesn’t want to hear? That can also be “self-diagnosis”, and it’s your own fault if you get abusive treatment and/or things just don’t work out well.
Funny how that works, with the moving goalposts.
I’ve noticed that too.
Also misdiagnosis gets seen differently depending on the diagnosis.
Like I’ve been called a liar for saying I was diagnosed with autism at the age of fourteen.
Why? Because my diagnosis was changed to schizophrenia (at least in the eyes of some of my doctors, not others) when I was fifteen, and when I was sixteen or seventeen I wrote something publicly about being diagnosed with schizophrenia and “wanting to work with autistic children” (read: I had an autistic friend and people told me this must mean I “should work with autistic children” and I was pretty echolalic still when I wrote that and yeah), and therefore I couldn’t possibly have been diagnosed with autism before that point, because if I had, I would have just said I was autistic.
And somehow, like, I wasn’t supposed to be confused. I wasn’t supposed to believe what doctors told me when they said I had been psychotic since infancy and schizophrenic since adolescence. Even though they not only told me that, but told me I would never get better until I began acting schizophrenic (if I didn’t say I heard voices I was told I was in denial, just as an example), and I was living 24/7 in an environment where these people had total control of my life. I was supposed to somehow know that you can’t be psychotic from infancy. I was supposed to somehow know that these people who had control over my life were reading everything they said about me and my family, almost verbatim, straight out of a book from the seventies by Frances Tustin about autism and childhood psychosis (most of the “childhood psychosis” she was talking about would now be considered autism, including regressive autism). And that these doctors themselves were throwbacks with an antiquated view of both autism and psychosis, antiquated even for the time period this was taking place in. I was supposed to know all this as I was going through it as a very confused autistic teenager with a lot of emotional problems due to long-term abuse of a number of kinds from a number of sources.
The fact that I believed my doctors at the time and said exactly about myself what my doctors told me to say about myself is now thrown back in my face as evidence that I’m a liar and that I must really never have been diagnosed with autism at all, or only diagnosed in adulthood.
Read that again.
I said everything my doctors told me to say.
I believed everything my doctors told me to believe.
I did everything my doctors told me to do.
To a fucking fault.
And the fact that I did that.
Gets thrown back in my face.
As evidence that I need to listen to doctors more and that I probably “self-diagnosed” (i.e. “didn’t listen to doctors”).
Also note the assumption that you can’t ever be misdiagnosed after a correct diagnosis.
[This gets seriously long after this point. Be warned.]