urocyon: Grey fox crossing a stream (Default)
I became aware of a situation late last night on Twitter, but didn't have enough Sanity Watchers Points left to try to write about it then.

The post referred to: Anna Raccoon's The Orwellian Present – Never Mind the Future.

I have found the Mental Health Act (England and Wales) disturbing enough, with no real requirement that people be dangers to themselves or others to be locked up. Those requirements are easily enough manipulated where they do apply. Based on personal experience elsewhere, I know how easy it can be if you are perceived in certain ways for it to be considered (under draft provisions) "necessary for the health or safety of the patient or the protection of other persons that medical treatment be provided to him". (From the previously linked grounds for compulsion page.) I am not sure what has become of drafts since then, and it's not really important here: let it suffice to say that all the draft provisions I've seen (along with the 1983 version they're meant to supplant) make it appallingly easy to twist criteria to lock up pretty much anybody, with very little accountability. And nobody's going to make a fuss if the way the person's behavior is presented and interpreted comes across as weird enough.

That's appalling enough. Being able to do a total end-run around what few protections apply to people who fall under the Mental Health Act, while claiming you're not really holding them involuntarily--as apparently happened here? I don't have the words.

I can't find much more information about Stephen Neary's situation and would like to, but--again, based on my own experience and things I have witnessed--I find what is described hideously plausible. Reading about it left me shivering and having flashbacks (which I am well aware would make me far less plausible to a lot of people, to the point that I hesitated to mention it).

More on Deprivation of Liberty "safeguards" referred to in Anna Raccoon's post. Again, I have very little trouble believing that this could be twisted to create "arbitrary decisions that deprive vulnerable people of their liberty", For Their Own Good. That's a nasty mix of disablism and institutionalized arsiness for you. (See also the Stanford Prison Experiment.)

My own reaction was rather different from what near-inevitably came up in one discussion I did find (from someone who was at least trying to maintain an open mind):
There is a massive campaign with this petition on facebook and elsewhere on the net and I have not joined any bandwagons I've seen about it because as you say this is one emotive side to a story. I too thought it highly unlikely a 'tap' on the shoulder would instigate any incident reports, and them being unable to name a Vicar was more to do with confidentiality and safety rather than being unable to recall a name or that he didn't exist.

I had no trouble believing that once certain types of stigma kicked in, everything the (not very small-looking and "low-functioning") man did was viewed through a certain suspicious lens, and the Zakhqurey Price-style punitive "you are defying me, you inferior disordered so-and-so" factor kicked in as well--a tap on the shoulder would have been very likely to get written up as assault. And very few other staff members or people higher up in the system would object, since he is autistic/mentally ill/what have you after all, and it's probably for his own good.

Insisting that this kind of thing couldn't possibly happen absolutely reeks of privilege. I have seen people written up for less in institutional settings. The same goes for predictable agitated behavior in someone who is being held against their will in unfamiliar settings--autism is not required, but it sure does help! To me, it's just a bit surprising that they didn't have Mr. Neary arrested, as per the zero tolerance BS pointed out near the end of a previous post. (I am skipping quoting that, for length.)

Actually, what I have read about Mr. Neary's case (and I bet he doesn't get called that a lot!) strikes me as an excellent example of how differently criteria can be applied depending on how a person is seen in the first place. Sometimes that means that a tap on the shoulder (or making faces at someone) is assault, sometimes it means that trying to tackle someone down or otherwise restrain them isn't. Sometimes it means that the police get called just because someone is suspiciously sitting in front of a library or beaten and Tasered by them for sitting on a curb.

And, given the amount of abuse and disregard for basic human rights that people with certain disabilities run into every single day, insisting that the only sane and sensible thing to do is to wait for information that's less "one-sided" reeks even more of privilege. Very few people want to hear about the shit that does go on, and it's rarely considered "one-sided" when the people and institutions mistreating them are the only ones allowed to speak.

So, yeah, I would like to know more about Stephen Neary's situation, but I have very little trouble believing that something like Anna Raccoon describes could happen. And I went ahead and signed a petition, as little good as I suspect it will do--because there's really not much else I can do about it. I hope that some of you reading this will do the same, and possibly come up with some better ideas.
urocyon: Grey fox crossing a stream (Default)
Some further evidence that this is, indeed, a viral problem I'm dealing with: my blood sugar has gone absolutely wild, without other factors changing remarkably. At this point, I think at least half the crappiness is down to hyperglycemia. I'm really not in good shape with that ATM, and suspect that I'd be feeling much better much more quickly (and hold up to the viral component better) if my blood sugar were back under some kind of control. It's had me scared, and even more worried about getting the house ready to move within a couple of months' time.

I've been stressing more about honestly not being able to get an appointment at the GP's (between medical PTSD and non-voice accessibility problems), which has probably not helped my health. (Especially since I'm suspecting I stressed my way into being vulnerable to icky viruses in the first place.) It's a very uncomfortable situation, which I haven't been able to see many ways out of. Being sick and drained of energy leaves me way less able to deal with just about everything else, in a "Help! I Seem to be Getting More Autistic!" kind of way. Stressing over it only makes things that much harder to deal with.

But, I am not feeling so trapped now, since I thought to look more into other options. Sitagliptin (Januvia), a DPP-4 inhibitor, is the only medication which has helped me so far, without any noticeable side effects. Apparently, it's down to poorly-understood insulin resistance subtypes whether a person will respond well to metformin or a DPP-4 inhibitor; a vanishingly small number of people are helped by both. At least, according to the doctor in the US who gave me the Januvia in the first place--and that makes sense.

So, I am tempted to try berberine, which is also a DPP-4 inhibitor (along with some other actions). There has been some promising research, and it seems worth a try after I track down a suitable supplement.

With any luck, that will at least help me get into enough better shape that I am capable of dealing with the GP, without so many worries about getting steamrolled, dismissed, and possibly even sectioned because I am obviously not in good physical shape, I'm behaving more "weirdly", and my verbal communication skills (especially in realtime) have mostly gone down the drain.

This GP has already shown a pattern of dismissing what I have to say, and it's hard to vote with your feet under the NHS. Small consolation: he's never said one word about my BMI, nor said anything to indicate he assumes I'm a couch potato--and even commented that, as fit as I looked already, diet and exercise probably wouldn't cut it. Lack of blamy comments is refreshing, even if some of his other behavior isn't. This is also the guy who didn't want to hear about persistent serious GI effects and symptoms of B12/thiamine deficiency from the metformin.

It irks me to have to do endruns and pay for stuff in the hopes that it will work--especially when I can theoretically get free prescriptions under the NHS--but accessibility is accessibility. And this is not a situation where "I guess you'll just have to do it" (complete with angry/exasperated tone) is of any help whatsoever.
urocyon: Grey fox crossing a stream (Default)
This was just one of the links I was going to point out, but I had more to say about this one than expected. ;)

Via the disability news section at BBC Ouch!:
New drug eases symptoms of autism

A better writeup: Seaside Therapeutics Reports Positive Data from Phase 2 Study of STX209 in ASD

Argh, just argh. I had somehow managed to miss the attempts at using arbaclofen "to rebalance the brain chemistry of those with autism." (Quotes from the first link.) How exactly using a muscle relaxant for "reductions in agitation and tantrums" is supposed to differ from the use of "anti-depressants and anti-psychotics for particular symptoms", I have no idea. Other than that the researchers want us to believe that it's somehow different.

Here's more on Arbaclofen. It is basically jiggered-with, R-isomer-only baclofen. Apparently, the uses for which it was developed were pretty much the same as baclofen: as a muscle relaxant and for certain GI problems. The side effects are apparently pretty much the same as for baclofen, including "Drowsiness -- in up to 63 percent of people" (pretty much what I'd expect from a muscle relaxant). This is being touted to treat agitation. Hmm...

From what appears to be the same trial a different trial connected to SeaSide Therapeutics, LLC (???)*--presented at International Meeting for Autism Research earlier this year, we find out that what they were really trying it out on was Fragile X syndrome--according to the beforementioned paper, "the most common known genetic cause of autism, and about 25% of males with FXS meet full criteria for autism", they say--i.e., some people with Fragile X show some behavior similar to some autistic behavior. In this trial, "Of 63 subjects randomized, 55 were male", and they were specifically trying to treat irritability. Apparently, "[i]t is hypothesized that other etiologies of autism may also be characterized by “synapsopathies” (disorders of synaptic function)." So it's all somehow totally the same and safe to generalize.

Why? (Emphasis mine.)
The rationale for studying arbaclofen (the active entantiomer of racemic baclofen) in FXS and autism is multifold. First, racemic baclofen anecdotally improves behavior in both FXS and autism. Second, racemic baclofen ameliorates abnormal phenotypes in several animal models of FXS, including audiogenic seizures and hyperactivity in the FXS mouse. Third, transcranial magnetic stimulation studies show that racemic baclofen modulates cortical plasticity in healthy control subjects. Lastly, in both human and animal studies, arbaclofen appears better tolerated and more efficacious than racemic baclofen.

Erm, OK.

What particularly caught my eye in that paper?
The interim safety review determined that adverse events were predominantly attributed to pre-existing conditions or viral infections, and none were unanticipated, given the known side effects of baclofen. One subject experienced a serious adverse event, increased irritability, when tapering off study medication (subsequently unblinded and determined to be arbaclofen). Other subjects showed similar deterioration when blinded study medication was titrated downward. On the independent monitor's recommendation, enrollment was then extended to age 6.

One of the well-known problems with baclofen? Nasty withdrawal. They were giving both adults and kids as young as 6 a slightly tinkered-with version of something known to cause physical dependency, then acting surprised when subjects showed "deterioration" going off it. See Acute Intrathecal Baclofen Withdrawal: A Brief Review of Treatment Options: "numerous complications which may require neurocritical care expertise such as respiratory failure, refractory seizures, delirium, and blood pressure lability...Critical care practitioners should be prepared to treat this potentially devastating and often refractory complication of ITB therapy." (also a problem with oral administration). More on withdrawal at Wikipedia.

I have muscle spasticity, and was given benzodiazepines instead of baclofen for it because of the lower (!) risk of physical dependency. I can't find rates for baclofen, since most of the search results apply to the use of baclofen to minimize withdrawal from other substances (alcohol, cocaine, etc.).

Idly looking for previous uses of baclofen for ASDs, I found one from the same conference: Effect of Intrathecal Baclofen On Severe Tactile Defensiveness and Symptoms of Autism Spectrum Disorder, in which a teenager with an ASD got a traumatic brain injury, and the sequelae of that injury were conflated with his ASD. Another with SeaSide Therapeutics, LLC involved: Patent application title: Methods of treating mental retardation, down's syndrome, fragile X syndrome and autism, using--surprise!--baclofen. Gosh, they're getting even less selective here. And they're claiming to treat all this with baclofen "without significant side effects"!

Unfortunately, I have to wonder how many poorly-coping parents will try to get their kids on baclofen, based on reading the reporting in the Daily Fail. Or, about as good, from even less substantive coverage on parentdish.co.uk, New autism drug 'opens doors to treating the disorder', or TheMedGuru's New autism drug offers hope: "However, the small number of people tested in the trail and findings not compared against a placebo drug, come across as negatives. Also, the assessment of the children was purely subjective." Or...

It is probably a good idea for me to link to an older disclaimer post, Psychiatry, freedom, and noninterference. Also a rather good piece (not mine) on How to Recognize Pseudoscience.


* I'm a little confused, but I am trying to read and write through some serious brain fog tonight. The more recently reported one sounds like at least a very similar trial with an expanded subject pool. But, they seem to be looking at the same measures, and the way people with FXS and ASDs keep getting conflated, it's really hard to tell. Confirmed by looking at Seaside Therapeutics' site ("creating new drug treatments to correct or improve the course of
Fragile X Syndrome, autism and other disorders of brain development"), they are different. I can only assume that the conflation was not enough to get eventual approval to flog arbaclofen at people with ASDs instead of FXS.


Jul. 6th, 2010 05:19 pm
urocyon: Grey fox crossing a stream (Default)
I'm having a serious disability frustration day today.

The neighbor who called the council on us over our previously-messy patio has, indeed, been gone. Yay! But, over the weekend we got new upstairs neighbors. I'm relieved that they do seem to be pleasant enough, but now I get to readjust to the noise overhead. I'm very aware that it's not them, it's me. It's mostly just normal walking-around sounds--with a running toddler--but they keep startling me. It doesn't help that even having people walking around over my head is only something that's been happening the past five years or so; guess I'm additionally spoiled by detached houses.

I didn't sleep well this morning, even with the usual earplugs, so am groggy and more prone to overload and pain amplification today. It's hard to concentrate on doing much. And I keep jerking and tensing muscles (the SSRI-triggered bruxism has gone wild), so the myofascial situation is not at all happy. Sometimes I get really, really tired of the combo of sensory issues and hypervigilance. With any luck, I'll adjust to the sounds within a few days.

Also, with any luck, I'll get past the "if I can hear them, they can hear me" hangup, and stop trying so hard to keep my verbal tics under wraps or at least quieter. That is very stressful, in itself, especially when you're at home where this is usually not a concern. I still seem to have a lot of internalized shame going over the Tourette-type stuff, and at some level still don't want people to think I'm weirder than they might already. It doesn't help that we did have a horrible neighbor up there before who honestly started trying to bully me with her stereo whenever [personal profile] vatine wasn't home, for whatever reason, so I really don't want to do anything to "set off" the new folks. (Ridiculous/victim-blaming/futile as it is.)

The really frustrating bit, though? After they talked to me off their balcony/deck a few times, I have been avoiding going into that part of the house. And I have been enjoying spending time on the patio in the sun, enjoying the plants and the pond, to decompress lately.

The thing is, I want to be a good neighbor and not come across as rude, and I really didn't mind, say, lending them the socket set to take the packing bolts off their new washing machine. But that kind of interaction with people I don't know is hard for me on a good day. Which this has not been, so far, for those purposes. The auditory processing goes haywire when I'm tired and overloaded, which makes for extra joy. And avoidance. My brain still has to work overtime to make sense out of Estuary English, too.

It also just hit me a few minutes ago that my nerves are probably even more shot because I have been avoiding going back there to smoke. (Yes, I am well aware that it's lousy for my health in a lot of ways.) Nicotine withdrawal is probably not improving my general sense of wellbeing.

Sometimes I get really frustrated, especially when things I was always made to feel ashamed of get in the way of doing what I want/need to do. It is a relief, in a way, knowing now that I really can't help it and this is not a matter of Not Trying Hard Enough to be socialize on other people's terms. OTOH, it's not entirely comfortable being reminded that these are real problems, and trying harder won't help me look more "functional". Talk about shame: Damn, that is really just the way I'm made! ;) And that even if I don't kick myself so much over just not having the gift of gab, other people are still prone to putting some funky interpretations on it.

I am also frustrated because sometimes I just don't have enough spoons available to try to come up with workarounds for things that I can usually work around. So, I'm trying just to distract myself with music, and roll with things instead of catastrophizing.

I was going to write something along somewhat similar lines, inspired by a couple of posts I ran across: The Class Dynamics of DIY Clothing at Red Vinyl Shoes, and craft pr0n and how it’s killing America at Underbellie. But, the spoons won't stretch right now. Maybe I'll get to it later. At any rate, the problem is not just classism, but also ableism. And internalized ableism, in my case. I keep feeling like crap and getting frustrated because I can't do nearly as much art/craft/DIY stuff as I would like to and keep feeling like I ought to do. (Though coming more from a DIY-from-necessity background.)
urocyon: Grey fox crossing a stream (Default)
[personal profile] greenknight pointed out two interesting posts earlier, and I thought I'd pass them both along. One, How to keep someone with you forever, from [livejournal.com profile] issendai, talks about the characteristics of sick systems in both personal relationships and organizations. I couldn't help but be reminded of a couple of pieces casting the federal government (BIA in particular) in the role of abusive partner. Controlling and abusive tactics look pretty similar across the board. :-|

The second is [personal profile] rachelmanija's response to Robin Hobb/Megan Lindholm's recent article on mental illness and the "artistic temperament", This Is Your Brain On Drugs....

The hell of it is, both made some reasonable points.

Some personal experience )

The most important thing, IMO? Recognizing that the person is running into problems, and working with them to try to figure out what will help them cope better, in a non-judgmental manner. (This may well include medication(s), BTW.) There is no magical fix, and it really doesn't help to frame the situation in terms of fixing someone else. If what you are doing is not improving the situation, it's time to reconsider how (and why) you are "helping"--and try a different approach to working with the person until you find something that does work.

The biggest overall problem, AFAICT? Universalism, to the exclusion of pragmatic approaches to helping people lead better lives (where "better" is whatever makes that particular person happier and healthier). As I described it elsewhere:
The source of the difference--neurodiversity or culture--doesn't even matter, from a universalist standpoint:
Here’s what I mean: if I have a universalist orientation, that fact alone can make me insensitive to cultural difference. If I’m universalist, I will tend to believe there’s one set of principles to live by — everywhere in the world. That is a stance that undermines what intercultural sensitivity is all about.

This shows up all over the world when universalists are present. Think of imperialism and colonialism: it’s no accident that the main perpetrators have been nations with largely universalist orientations.

Universalists can be slow to see a need for intercultural consulting, coaching and training. What value could these services possibly add, if things are the same the world over? Or, in a weaker version: if everyone in the world wants the same things?

If everyone is assumed to be perceiving things in the same way, reacting to them in the same manner, expressing the resulting (same) emotions in the same way, while motivated by the same considerations in any given situation--any deviation from the expected pattern may well be interpreted as a sign of poor mental health. This has happened to me, and to family and friends.

Especially in the US these days, the response to a perception of mental illness is frequently to medicate the person, without really trying to find out what is going on. Nor what coping skills and/or support might help them live the kinds of lives they want. Situational distress is sometimes assumed to be a lifelong, biologically-based mental illness, though the symptoms may go away when the person's stressful circumstances change and/or they learn some better ways of coping with what's going on in their lives. (Of course, people who really do fit criteria for mental illnesses also benefit greatly from this!) A medicalized, universalist approach to human diversity seems to be what Robin Hobb/Megan Lindholm is protesting--and taking it way too far in another display of insulting universalism.

Everyone is different. Every situation is different. It's important to bear this in mind. The "oh, that's just how s/he is" approach, while very useful up to a point, can be taken to the point of the absurd (as in common usage of the "artistic temperament" idea). When has it gone too far? When you are more interested in cramming someone else into the "artistic temperament" (or similar) model than in paying attention to what very difficulties the real human being in front of you may be experiencing. If you can't do things like make sure your bills are paid on time, that's a problem, right there--and it can be worked around and/or some kind of support put in place.*** It's just the flip side of the "you can't do X and Y because you're mentally ill" coin. Binary, universalist thinking trumps actually helping the person, in either case. It's dishonest and disrespectful, besides just not being useful.

Which brings me right back around to the themes of balance and pragmatism, honesty and respect, and pretty much all the rest of the stuff I talked about in Happiness, Part 4: Seeing beauty. What has helped me the most is working on figuring out what I really want and how my brain works, doing away with a lot of the universalist "shoulds"--and working with that to find strategies that help me do what I want/need to do.

Obligatory notes ;) )
urocyon: Grey fox crossing a stream (Default)
Ingvar and I met up at the station on his way in from work, and we went to pick up the new glasses.

There had been some bizarre problem with his sunglasses, something about the level of extra-thin lenses he'd picked not working with the frame size. He actually stopped in yesterday to find out what was going on with them, and had to pick new frames for the sunglasses, because even the not-quite-so-high-index tinted ones wouldn't work in the initial frames. Still, he was under the impression that the regular glasses had arrived. As it turns out, they also had to switch his regular lenses for the not-quite-so-high-index ones, and they weren't there yet either. Too bad they didn't catch the conflict before sending the order off to be made up. At least that's £30 per lens refund due, IIRC.

Both of my pairs were there. After trying them on, I'm really not looking forward to putting them on in the morning as the optician suggested. I've been wearing glasses for 25+ years now, and this is the worst prescription change so far. It had been about three and a half years, and I wish I could find the old prescription to compare. (Naturally, Ingvar's old one is handily tacked on the kitchen bulletin board, and mine has been devoured by the Diopter Gnome.) In past, I've expected to have a headache, dizziness, nausea, and lurch around like a drunken sailor who hasn't gotten his land legs back, for about a week. That I was expecting, with the astigmatism changes in particular.

With these, wearing them for a couple of minutes made me feel like someone had jammed a rusty nail into my left eye socket, and a couple more into the cheekbone. (I just double checked that the sunglasses were the same, and it happened again!) Very unhappy muscles there. I am also having the problems with worse-than-nothing blurriness through the lens which changed a lot more (the left) as mentioned here; that person described the sensation well: "The right lens is perfect, but when I look through both lenses, it feels like some one just punched me square in the face." In a particularly nauseating way.

The left eye also feels like it's getting pulled toward my nose.

Extra fun with strabismus and eye strain )

My wonky vestibular system and some other visual processing weirdness are no doubt also involved, and I seem pretty sensitive to input changes.

At any rate, I was hoping they would check to make sure the lens was, indeed, the proper prescription before we left, but I have trouble dealing with things like that. It's frustrating. They saw I was having problems, and apparently did not find the reaction unusual with the prescription/eyeball-shape change. (Yay, shapeshifting eyeballs! :/) The suggestion? I should put them on in again in the morning when I haven't been wearing the old glasses all day, and wear them as much as possible to adjust. And come back in a week or so if it hasn't improved.

With any luck, it won't feel as awful when there is not already a day's worth of muscle strain and fatigue on the left side.

Has anyone else had this kind of thing happen with a new prescription, with myopia and/or astigmatism changes--and the right prescription? ;) If so, how long did it take your eyes and brain to adjust?

Gosh. Exotropia and fear mongering. )

Edit: I tried to play around with an interesting-looking blur simulator, based on entering a prescription. That didn't work so well with mine, which gave "beyond simulation range". Odd. Apparently it "[s]imulates prescriptions from +5 to -5 for the spherical error and +5 to -5 for astigmatism."
urocyon: Grey fox crossing a stream (Default)
I am sitting here with my head slathered in goop made of egg, mayonnaise, and olive oil for an hour. Topped off with a plastic produce baggie held in place by a rubber band (who needs processing caps? ;) ) and a towel. Some kind of distraction is welcome. *g*

Lately, I've been a lot happier with my hair, since I've been trying to work with it. It's rarely tangling much, and I've been finding maybe one fairy knot a week--rather than multiple a day, when I realized what I was doing was just not working. At all.

The best thing I ever did for it? Only using a wide-toothed wooden comb to untangle it before washing, instead of combing and brushing it multiple times a day to make it look less "stringy". *headdesk*

What I'm doing to it now has been a huge improvement over the purposely drying stuff I thought it needed before#, but it's still too harsh. My crown, especially, is getting a bit crispity and flyaway, and flattening out. Not nearly as unpleasant as before, but it's still time for some deep conditioning/protein treatment and a change in routine.

It's time to cave in and buy some products, other than baking soda, vinegar, and coconut oil. :) I ordered some Darcy's Botanicals Natural Coils Curling Jelly last night, hoping it will double as leave-in conditioner and lightweight gel for curl definition. Running across the excellent site, Live Curly, Live Free was a good bonus. Heck, I hadn't even thought of the perils of the "wet cut, with no regard for how the hair lies dry, then try to whip it into shape with products and heat" hair styling approach--which is the only one I've ever gotten!

Between the info there and this amazing before and after thread at naturallycurly.com, some version of the Curly Girl method seems well worth trying. Just the second photo set on that thread was enough. :/ Yeah, my hair used to look like the before picture pretty much all the time.## Eeek.

In a while, I'm planning a trip to the local Sally's. Initially, I was thinking of getting some flat clips and no-snag mini elastics, since I want to try some flat twists at the front of my head to keep the hair out of my face without having to slap on headbands or clip it back. (I finally figured that just because you don't usually see that done with hair the texture of mine, that doesn't mean it's not worth a try. With elastics, since there's no chance in hell the twists will hold themselves.) Now I also want to look for some non-scary conditioner, hopefully unlikely to break my head out, to try conditioner-only washing.

I did consider the idea before, but it scared me initially, just starting out of the "must strip my hair within an inch of its life" mentality. Only washing it with something other than water once a week or so--and oiling it!--has worked out great. Since it's still kinda dry, the CO is not looking like a bad option at all now. And I've had long enough with the minimal intervention, basically benign neglect approach, not to mind adding some slightly more complicated care back in. That's still a lot less than I was doing to it when it was longer before. :-|

BTW, the "hair reflecting mental state/abilities" metaphor also seems to apply here. Treating myself decently and trying to figure out what my strengths are--rather than trying to force my mind to do what other people tell me it should--has also led to much better results. (Not to mention getting away from the "better living through socially acceptable/mandated chemistry" approach to the point that I had no reasonable baseline, in both cases.) And metaphorically combing out some of the snakes has let me treat both my mind and my hair (and probably other people!) more kindly. Imagine that.

That's probably enough hair care geekery for the moment. It's just about time to get the goop rinsed out, anyway. Yay!

# Much in the way of conditioning made it "stringy" and "dirty-looking"--i.e., with the beginnings of some curl definition!

## So, ironically, one time I tried a spiral perm to try to make it "behave". Then kept using permanent dyes on top of that. Within a year, it started breaking off and eventually matted to the scalp--with daily sulphate washing and light conditioning thrown in the mix. I'm still impressed at how tough my hair is, to be super-fine. *facepalm*
urocyon: Grey fox crossing a stream (Default)
I can't quite figure out how the tags are broken. This looks OK on full page view, displaying the cuts, but things are weirdly italicized otherwise. Trying to fix. Fixed. Apparently, DW objects to sticking a cut tag in the middle of a block of formatted text.

[personal profile] vatine is off gaming today, so I'm taking it easy and have mostly been camping in front of the keyboard. The poor dog claims he is being sorely neglected, but he does whenever at least one of us isn't petting him.

Update: It turns out that he's also afraid of heavy rain--not just thunder--so I'm going in there to sit with him after posting this!

Out of slightly morbid curiosity, I went and did the PsychCentral Sanity Score quiz [personal profile] phoneutria_fera mentioned yesterday. It requires a login, which irked me, but I went ahead and set up a throwaway account.

The results, pasted?

Your Sanity Score

Score Breakdown )

Interesting, in a fairly typical psych assessment kind of way. For anyone who doesn't know, I spent a lot of time in the psych system over things which were neither psychiatric nor psychological. I am autistic with a lot of interesting neurological stuff going on, and ended up deemed bipolar with a clunky mess of other things tacked on to cover all the stuff the mood disorder didn't.

Bear in mind that, whether they should be or no now that they're accepted as neurological, ASDs (and Tourette's) are lumped into the DSM. You wouldn't know it from this assessment. Things may have changed in practice these days, though an awful lot of kids with ASDs are apparently getting pediatric bipolar labels.

The questions weren't quite as bizarre as a lot of the ones on the MMPI--which surely gives a lot of false positives for "Hypochondriasis"--but some of them came close. Just a small sample of ambiguous ones which caught my eye:

Question quibbles )

I couldn't help but get the yes-or-no "Have you stopped beating your wife?" feeling a lot, with a lot of the phrasing.

Yeah, a good mental health professional will be able to sort out what might be contributing to a lot of these things. Some are excellent. Unfortunately, a lot are not so good, and many of those are inclined to view things through certain filters which presume a narrow range of mental illnesses above other explanations for the problems their clients are experiencing. That can work OK for some people's situations, but not so much for others. Some of the filters which pathologize people's behavior and communication--eliminating other possible explanations--are unlikely to help anyone.

Going back to the results, the breakdown was interesting--especially in light of the (inappropriate) diagnoses I picked up before. I can't say much about the anxiety and especially the PTSD, other than that a lot of what has been interpreted and treated as anxiety and phobia is actually coming from purely neurological sensory weirdness. The same with rarely going out of the house; management is very different, depending on whether this is due to real sensory overload (plus some built-up anxiety from that, and other people's distress over it), or whether it's based on some horrible trauma in your past (as was assumed). Apples and oranges.

I do have Complex PTSD, and 15+ years of largely getting treated like crap in the psych system did not help with that. On the depression front, the score seems to be so low not because I am not experiencing symptoms these days, but because I am used to dealing with it by now and it doesn't freak me out; the way I look at this has also changed, as reflected in some of the question quibbles. I've learned to do more emotional regulation, not having even known it was possible growing up. Also, some of the relevant questions do not seem to take into account that a person might have experienced chronic depression for long enough that there is not a sharp contrast between "now" and "before".

Some products of neurological things (executive function, inertia, etc.) were taken as symptoms of depression, and figuring out what's what to some extent has also helped; these things also require different strategies, depending on what's behind the difficulty. Are you having trouble getting in the shower because you're depressed, or does it have more in common with How to make a phone call, in 70 easy steps? Maybe it's a combination of the two (my, do I know that one), or something else entirely.

Video: Original Song about Executive Dysfunction "I Grinded the Coffee" by P. Lungstuffing. No spoons for a transcript right now, unfortunately.

The "Physical Issues" score does not reflect anywhere near the actual quantity (or quality) of physical problems I am having now. This is probably down to both question bias and similarly increased mindfulness helping me deal with it. On a related note, I had to get a chuckle out of the "Drugs: 0", the way a lot of people want to act about chronic pain treatment.

"Dissociation", "Borderline Traits" (ah, that old dumping ground!), and "Obsessions/Compulsions"? A combination of neurological stuff and PTSD. I was diagnosed with mild OCD because of tics which fit Tourette's criteria. One therapist suggested that I just didn't want to "improve" when I started ticcing even more under the scrutiny. Seriously.

The test was interesting to mess with, and I think it nicely illustrates a number of systemic problems. I didn't need this to tell me how sane I am now, and not surprisingly, think this assessment deeply underestimated my coping abilities in some ways while just not taking other areas into account at all. Can I clean my house? Rarely, for multiple reasons. And so on.

(Maybe I should throw in a link to my Psychiatry, freedom, and noninterference post here, for clarification. I am all for truly informed choice, and the last thing I'd want to do is tell people to buck up. Urgh.)
urocyon: Grey fox crossing a stream (Default)
This started out as a comment on [personal profile] feliscorvus's recent Communication Annoyances, but it turned out that I had rather a lot to say on the subject. *wry smile*

This has turned out way longer than expected, but I couldn't figure out a good place to place a cut. So, I will go ahead and stick the rest behind one.

Communication, and mutual misunderstandings )
urocyon: Grey fox crossing a stream (Default)
Woohoo! I should now have working debit and credit cards again, after activating them.

How I went for months with no cards )

In a while, I'm planning to head off to break in the new card at Sainsbury's. Beforehand, though, I'm sorely tempted to make sure it's really activated at an ATM, to avoid potential embarrassment and phone calls to the bank at the checkout!

I also lost my Virginia driver's license in the wallet, so will have to apply from scratch once we hit California, which is really inconvenient in itself. (And expensive, since I'll have to get a driving school vehicle for the road test, with the DMV's weird insurance documentation requirements.) Virginia won't let you request a replacement online without the customer number on the license (helpful!), and I am so not going to fly back home just to go to the DMV. Next time I get my paws on a license, I'm keeping a photocopy in a safe place, with the passport one.

That should be fun for a while, especially since [personal profile] vatine has never really needed to get a license. Getting a British one requires a lot more hassle than just walking into a DMV branch (especially if you're a foreigner with chronic health problems!). Neither one of us wanted to mail our passports off to Swansea, and they require a remarkable amount of hoop-jumping if you have just about any kind of health problem (which includes "any mental ill-health condition (including depression)"#).* So we've both made do without.

At least his future workplace runs employee shuttles, so he should be able to get to work without too much trouble until I get things sorted out.

* Unfortunately, the weird phrasing seems to reflect some attitudes.
urocyon: (water)
After spotting an icon reworking of the design over on [livejournal.com profile] asperger, I want this t-shirt:

"This is a cat. Not a defective dog. It's very happy being a cat."

The sentiment applies well to neurology, but hardly stops there. I've been putting in a good bit of work, trying to evict some of the Defective Dog rubbish from my head. (The absolute surface level of a slightly different brand of it is touched upon here.) It's more generally applicable than this one I've already got, which mostly leaves people scratching their heads here. *g*#

On a similar note, I don't think I've pushed Bev's Autistic Awareness videos here so far, but I hope she turns out some more before long.

# Granted, that one--and this, which I don't have--do take on a different level of meaning when a lot of your family just let nosy outsiders assume they were Irish. Because they could. Those messages work better back home, in context. ;)


Mar. 4th, 2009 04:29 pm
urocyon: (water)
We hadn't been planning on getting a dog, but I ran across a 10-year-old Staffie who needs a new home, and am sorely tempted to try to give him one.

This isn't just because I'm a chump when it comes to animals, though I'll freely admit that I can be. There aren't nearly as many people wanting to adopt older animals. Trying to find other arrangements for 15-year-old B.B. made me even more aware of this. It also isn't just because I love dogs, and miss B.B.--who made me realize just how much I like Staffies.

Spending time with B.B. again helped me realize just how much she was helping me day to day. I was aware that there are helper dogs for auties, but had taken for granted all the ways in which B.B. taught herself to help, beyond the basic emotional support. This was probably also a good bit of the reason my Nana made sure I always had at least one dog with me as a kid, without even thinking about disability! That wasn't just for snake protection. Having spent most of my life in mutually beneficial relationships with dogs, I'm really missing not having that.

Dogs and support )

Most of this help just falls under the category of "being a good dog friend," and reciprocity. I was mainly interested in the companionship and emotional support, but have gained a better appreciation for the practical side of things. Living with B.B., I just took that for granted. I don't expect a new dog to do all the same things, but with a little encouragement and training, s/he could provide a lot of support which the cats cannot. Not too surprisingly, it's easier for me to request and accept help from an animal, without feeling ickily vulnerable, as just part of the relationship.

My main concern here is, indeed, the cats. ([livejournal.com profile] vatine is a bit of a concern, too; even though he liked spending time with B.B., he's just not used to being around dogs.) This dog is supposed to be good with cats--again, can't expect him to love cats like B.B.--but I'm not sure how the kitties would react. I was not as concerned about B.B., when we were still hoping she'd travel OK at her age, since she puts out such a strong "ooh, I adore cats" vibe that she doesn't scare most of them. I would take great care with the introduction, of course, and sure do hope that's enough. At least none of these cats has had reason to develop a serious fear of dogs, unlike a couple of rescue kitties who have lived with me in past.** I've considered trying to find a small dog, preferably as a puppy, which they might find less intimidating. (But, that might remind Feist of a fox, and bring out aggression!) Max is an adult, but Staffies aren't very big, and he's old enough to have calmed down.

Decisions, decisions! I couldn't resist sending Max's human a message--before consulting anyone else :/--and should try to get back to her today.
* Pretty good description of the fun of a supermarket, even for an adult
** One was terrified of a tiny 8-week-old rescue B.B., to the point of leaving. He would periodically check back in, to see if she was still there! He and his littermates had spent at least a couple of days abandoned in a neighborhood with roaming dogs, at less than six weeks old. :/
urocyon: Grey fox crossing a stream (Default)
Looking through Vol. 1 of Travell & Simons' Myofascial Pain and Dysfunction--which I haven't bought, expensive as the set is--after it turned up on Google Books when I was trying to find a reference on short arms and ill-fitting furniture, I ran across some other interesting info.

Yep, it's probably a good thing I went back on the B complex, plus the B vitamins in Magnesium-OK. I was not remembering that, besides the swinging thyroid weirdness (which I've been getting again, from prolonged stress), the repeatedly uncontrolled diabetes will interfere with absorption and conversion of a number of things. Including B vitamins for which I'm showing signs of insufficiency, or outright deficiency in a couple of cases. The disturbing oculomotor weirdness (not to mention increased brain fog and fatigue) I've been running into lately may well be coming from being low on thiamine, for example. The ear infection has proven much harder to deal with because I was already getting dizzy from my eyes not wanting to focus properly, and probaby more directly from vitamin depletion.

I was also not bearing in mind that the ethnic liver chemistry may well be changing requirements for a lot of things--besides the lingering celiac absorption issues--as a large part of the "wild natural individual variation" thing. "Enough" determined statistically--mostly from samples of rather different ethnic background--may well not be enough of some things for me at the best of times. Judging by the traditionally high intake of a number of foods full of nutrients I seem to be running low on--like leafy green veggies, beans, fish, and nuts--back home, this would not surprise me at all.

Yeah, I'd recognized the feeling of being low on B12 again, but was blaming a lot of the rest on spending months* really running myself into the ground, with neglect and overt under/malnutrition. That likely had a lot to do with it, though in a more complicated way than I had thought. No wonder I've been craving liver, which is chock full of several nutrients I seem to be low on right now. (I think I will go ahead and buy some later, and [livejournal.com profile] vatine doesn't have to eat any.) Trying to get more of a number of things from food sources has not been enough, and no wonder! I may just need to set up a pill box to help me remember the supplements--which I may well just have to keep taking regularly, judging by this experience.

The good news is, assuming I get sufficient vitamin intake to work around the absorption/conversion oddness, apparently most of the symptoms should be much better within 4-6 weeks. I was starting to get scared by some of this stuff**, and it's reassuring to find a probable explanation which is easier to do something about than the nebulous "stress".

Another helpful thing is just finding out that I've got a "good" reason to be feeling pretty damned disabled right now. ATM, I'm too dizzy and clumsy to risk a jaunt through the shower--what with all the actual falling down lately--but am getting ready to slather on more deodorant and head out grocery shopping anyway. Trying to apply the same standards to myself that I would to a stranger on the street is a bare minimal goal, but it doesn't always work! I thought I had come to terms with having a pretty variable apparent functioning level by now, but it seems not completely. Ah, the fun of less obvious (not just close to "invisible") disabilities, and the mess of internalized BS which gets bundled with them.

At least this has provided a wake up call, making it abundantly clear that I really should slow down and take better care of myself. That is what I'm going to have to do for a while, and the omnipresent other considerations can go hang. Shame I'm going through another spell in which this kind of thing is needed for me to admit to myself that I really am dealing with disabilities--but, all things considered, it's a good thing I did get a jolt! Continuing to run myself into the ground, mainly to show myself that I can, is just plain stupid.

* I say "months", but this has been going on for the better part of a year now. No wonder it's catching up.
** And even more hesitant to bring some of it up to the GP, having been on the wrong end of iffy conclusions being jumped to if your problem is not a common one, way too many times by now. Watching how that kept happening with my mom did not make me any keener on reporting things like oculomotor problems, and likely being given Haldol for my troubles by the well intentioned. Especially since I'm looking more autistic these days, in part from dealing with the health issues.

Edit: This is also likely to get one's symptoms taken less seriously. Largely between "looking more autistic" and associated bad experiences, I have not hobbled screeching and whining in search of pain relief. And I manage to look more functional, and get more done, than probably 95% of other people with similar pain and other symptom levels; therefore, the pain could not possibly be that bad. Not being neurotypical--and not responding in an expected manner to high levels of pain--definitely helped my mom get into the situation she did. It's scary.
urocyon: Grey fox crossing a stream (Default)
I haven't been around much lately, and my first impulse is to apologize for it. But, it finally dawned on me a couple of weeks ago that this is not an example of Not Trying Hard Enough, but of overload levels affecting my language skills (and other stuff). Trying to translate thoughts into words (part of my verbosity comes from this, throwing enough words at concepts so that maybe some of them will stick), then type them out, gets harder when there are a lot of other things sapping energy. So much for the persistent idea that I don't have significant communication issues. I can't help but be reminded of Bev's incisive I Am Joe's Functioning Label. Ouch.

It took having to try very hard to avoid going into the ever-popular John Fit (family subtype of the rather violent meltdown episode, which is apparently something to behold, especially with the distinctive unlearned "twirling in midair" movement pattern) for the first time in 10+ years, before I figured out what kind of persistent overload levels I'm dealing with right now. At least I know that it's avoidable now, and what's happening in the first place. (When I tried desperately to suppress them before I knew what was causing them, I just got some self-destructive substitutes going, which were treated as a separate problem.) I'm fighting feeling bad about not going out much, which cuts out a lot of troublesome stimuli, now that I am aware (a) what's going on, and (b) that it's very temporary. I'm spending a lot more time resembling Amanda's How to make a phone call, in 70 easy steps, and kicking myself over it less.

At least it finally occurred to me to ask for some help getting some of the factors under control. I have started taking paroxetine again (forgot all about it once I got back here), since some serotonin tinkering could only help right now; having depression creep up on me now that I can let myself relax more hasn't helped. I tend to forget, or at least not take fully into account, some ongoing pain and health issues--especially when other things are distracting me from dealing with them--when they're still there in the background, adding to overload. Getting my blood sugar managed again will no doubt help a lot (especially since I still keep forgetting to eat), and I did recognize that I was staying so overloaded that calling the doctor's and making it there on my own was just not likely to happen, until and unless some of the other things were taken care of. I saw that this was not yet another example of Not Trying Hard Enough (kind of trained to be a broken record, eh?), and asked Ingvar for help with the impasse. Yep, that's still hard to do sometimes, though I have had even more evidence that pushing yourself until you cannot do so anymore is just not reasonable, from watching my Mom.

No, I'm not complaining nor feeling particularly sorry for myself, just explaining what's been going on. It's amazing what some knowledge, coping skills, and perspective can do for one's perceptions of a situation.

I'm mostly trying not to beat myself up or push myself too hard to do things that will be more overloading, just because I still tell myself that I "should". Applying compassion to one's own life isn't necessary easy, with sufficient training to the contrary, but I think I'm learning. This also makes it easier/vaguely possible to see other options, and have more energy left to pursue them. For example, I have had to admit that getting the pet care business up and running is best delayed until I can actually talk on the phone and go out on a predictable basis (duh). Instead of badgering myself about it, I've started making jewelry again in the meantime. I have also started learning Cherokee, since I feel capable of doing that right now.# Keeping things picked up out of the floor and learning a language require very different abilities. I can at least see that kicking myself over not being so good with applying the cleaning skillset ATM is not going to help me get anything accomplished, rather the reverse. I've still got skills I can put to good use.

Speaking of not beating myself up, I have found a good antidote to getting down on my physique: the Warriors of AniKituhwa dance group. I'd been impressed by still shots of some of them in some museum stuff Sid's sister thought we might be interested in, and brough back from a trip there this past fall--and by "impressed", I partially mean "falling over laughing in recognition". They've also done some rather funny tourism ads for Cherokee, NC. One of the more impressive things was recognizing that these guys are actually more striking because of the way they're built. Maybe what I really need is some red ochre and bloodroot. I'd been trying to keep Alexander McCall Smith's "traditionally built lady" point in mind (with all the associated humor), but these guys kinda smacked me in the face with it. :)
# This is largely because it's very accessible as these things go, to the point that the Nation in OK is offering free online courses. It seems slightly more relevant since, by traditional reckoning, my lineage turns out to be dual Tutelo/Cherokee (lineage adopted around the time of Removal), which explained a lot of minor differences which have passed down. (Along with the fact that the common portrait of Sequoyah looks disconcertingly like my Papaw in a turban.) No, that does not make me feel somehow deeply Cherokee, but increases interest levels. Less relevant, but I just found out last night that my paternal-line Tacketts (NC-->KY) had probably been harder to pin down because they started out Tahquettes. *smacks forehead*
urocyon: Grey fox crossing a stream (Default)
I guess I'm even more prone to brooding than usual, since the cats and the morning light coming in the window have conspired to give me less than six hours' sleep the past four or five nights. You'd think I'd be used to the sharper increase of light here, with latitude, by now, but apparently not. Even when my body is exhausted, my brain needs a couple of hours at minimum to settle down after everyone else has gone to bed (not really negotiable, with my wiring and without the occasional antianxiety med I can't get now); combined with waking up early, I've been lurching around punch drunk the past few days. So please excuse whatever sense I'm not making.

Longish rant about my frustrating mother playing diagnostician...again )

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