Thumbs Up: Life Hack for Medicine Bottle Caps

Here’s a handy life hack or all my spoonie, arthritic and / or dyspraxic friends out there who struggle to open the %$#@! medication bottles dispensed with push-down-and-turn child-safety caps (even when you don’t have small people around).

This hack works with those bottles that have a sort of sliding inside cap.
You know, the one you tried removing, only to discover that the outside cap now no longer fits on the bottle. Cut To Scene: pliers and mangled inside cap, feeble chair-arm thumping, weeping, sore hands, and tiny pills escaping everywhere.

The beauty of this approach is its simplicity. All you need are a tack and a pusher. The tack might be some thumbtacks / drawing pins; I found upholstery tacks worked better on my medicine bottles. For the pusher, either a strong thumb or spoon suffices.

Push the tack into the [outside] top of the cap, halfway between the center and the edge. That’s it.

NOTE: make sure the point of the tack is long enough to pierce well into the inside cap.

Because my thumbtacks weren’t long enough we used the upholstery tacks, which just peeked through the inside. I decided this wouldn’t be too much of a safety hazard for myself. Otherwise one could plug over the pokey bit with say, a bit of the red wax from a Gouda cheese, or Sugru™.

2017-07-23_Bottlecap-tack-hack

Two medication bottles in front of a weekly pill-minder. The left bottle is open, with the upside-down lid showing a tack point barely poking through. The right bottle is closed, showing a tack inserted halfway between the center and edge.

This bottle-tack-hack originates from the Instructable “How to Make Evil Childproof Caps Easy to Open” by SFHandyman. His article explains how to simplify other types of caps, such as the squeeze-and-turn, line-up-arrows et cetera.

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Companionably Autistic

It’s a different thing being around other autistics.

Well, doubtless I’ve been around other autistics before. But when we did not know we were, there was all that stress from passing (“pretending to be normal”), so generally weren’t aware of what our sensory and other needs actually were, much less how to comfortably, genuinely, be ourselves.

Now it’s different.

(1) A little morning talk over my cuppa tea. Then he says, “Well, that’s enough social interaction for a while.”
He returns to his computer work, and I chuckle as I go out the door.

IT’S LOVELY when constant conversation or chit-chat aren’t expected.

(2) Yesterday I took a day trip to London to meet a friend from the States.
We met at the train station, where (being faceblind) I texted him my location and held a page with his name so he could find me.

After he bought his sausage roll, I suggested eating on the less-crowded, quieter mezzanine level. Together again after a long absence, we sat talking about how much less stressful it was not being in the States: him not worrying about being shot at, and myself not being awoken by gunfire. Alas, we were unsuccessful at not talking about Trump and disability and healthcare and racial and social care and environmental and- and- and- US politics Bllaarrgg. (The actual convo didn’t have many paragraphs, or rather, not spoken aloud. But I flapped a little in frustration.)

Time to move on; we brushed off the inevitable puff-pastry crumbs. I geeked over riding trains and how different cities smelled, and he reminisced about subway announcements. We started to get on the first subway car but it was too claustro’, so we caught the next. En route to the British Museum, Waterstones bookstore sucked us in; he found books he was looking for. I checked out the wee toys, feeling more 5 than 55, more child than grandmother, as I checked out the shinies and tiny things and science toys.

We ambled to the Museum, pausing as needed for him to catch his breath or for my slow knees to ascend stairs. No need to apologise; no need to hurry.

Then finally at the Museum! Get maps and —
Have a cuppa tea and figure out what to see. This was not a Must See Everything tour; we both understood having to mete out our tolerances. Made a list. He suggested started and the fifth floor and working our way down — Excellent!

Oh boy. One lift out of service, and it took a bit of searching to find the other. And … the fifth floor Japan exhibit closed. Moving along … Third floor was fascinating. We took photos. SO crowded, so many languages going on, so many Auditory Processing Disorder blips for us to chat much.

By the time we got to the room with the Egyptian mummmies, it was a crush of noisy school children in addition to all the tourists. One couldn’t walk in a straight line, and hardly much take photos.

It was overstimulating. Too much noise and too much crowds and he needed a breather. Too many smell-shapes and flavoured colours and moving sounds and I needed to sit. We glanced at each other in instant agreement; he pointed towards an adjoining room and we wended our ways out. Sat and rested by the rune stones.

At the end I lost my pal in the vast space of the museum entrance and crowded plaza, so once again, I texted him my location and held a page with his name so he could find me. It being mid-afternoon, we did the sensible thing and regained our stamina with chips and ale in the pub across from the museum. Apparently 15:30 is a good time in a pub; there weren’t many there and we could hear each other speak. Recharging time: I rocked and he doodled.

That in turn meant that we were hungry for our evening meal at Café in the Crypt at St Martin-in-the-Fields during early evening. The food was hot and fresh, and we choose a table that felt secure near a pillar, instead of exposed from people surrounding our backs.

Back on the street after dinner, he announced, “I’m running low on spoons.” We stopped to rest at Trafalgar Square. Then my train was due in an hour, so parted we ways at the Northern Line.

IT’S LOVELY not having to justify eating at a particular table, or wanting to photograph the visual texture of fractured safety glass, or why subway announcements are so endearing. Or that one is getting overwhelmed and needs to rest and stim, or is running out of spoons.

Nor did it take us twenty minutes to say Good-bye; that was enough social interaction for a while.

What to take from Comments

For the unfamiliar, Vi Hart makes fabulously fun-entertaining-educational Youtube videos about math & geometry, doodling, food and music. (No, you needn’t have aced calculus to understand them; my 7-year old grandson thinks they’re awesome.)

Once in a while she takes a tangent, such as this episode, Vi Hart’s Guide to Comments, where she explores ideas about why people make different kinds of negative comments, possible reasons for reacting to them, and how best to respond.

I thought one analysis was particularly insightful:

Type #2 DIRECT SHALLOW INSULT
Commenters like these are thoughtless and bored, and obviously don’t have very high self-esteem. They’ve been taught to be normal, so if anything’s different about you, well that’s not allowed in the rulebook they know.

But in the anonymous internet context, I don’t think the usual explanation of them trying to put you down to make themselves feel bigger quite cuts it. They probably don’t see you as a real, live person, and would never make the comment to your face, so it’s not about putting you down.

In fact, their comments aren’t aimed at you at all.

They comment to pretend that they are not just wasting time on the internet, but being active participants, discerning in their tastes. Their commenting justifies their watching, and just like voting in American Idol or tweeting your local news, their opinion further invests themselves into their identity as a judge, observer, consumer. They have been taught to be vocally judgemental by the people for whom judging means watching, and watching means money. Plus, other commenters might reply, refuting their insult, which proves their comment matters.

As with other types of comments, she then proposes ideas for why we react, and what to do about the comment: that is, just let your eyes glide past them and move on.

The whole video is superb! (Also, she has fun playing with wax on her fingers.)

Auto-generated CC has some glitches, as usual.

More universal than you might think

All those years of spending hours thinking up that brilliant retort to their insults … and instead of that stunned silence of acknowledgement you had anticipated — you just got more bullying.

Again.

*~#~*

Don’t play their game.

Short eye contact, a nonverbal response of incredulity, and then ignore them.

I meant to get around to this earlier…

Displacement behaviour: when suddenly you feel the need to shift a negative emotion or stressor to doing something else. Right now, that means sorting tax papers instead of finishing a class handout or sending out a query letter. (During Finals Week, my displacement behaviour was cleaning the bathrooms. My apartment was REALLY CLEAN after Finals Week.)

One rationalisation I have at the moment is that I am correcting for last year’s “planning fallacy” — organising and tracking down information and figuring out the electronic filing of my federal and state taxes took me longer than I had anticipated. (Folks with ADHD are terrible about planning fallacies, because of the weird fluidity of perceived time.)

Ooh, I just found some neat links on new research into the causes and coping strategies for procrastination … *

STOP!  

That’s just a rationalisation. Set aside those tax papers for this weekend, and get back to the correspondence. Damn. And, *sigh*.

Meanwhile, here are some of my mottos that you may like:

Fidget quietly.

Pile by file**.

Perseverate positively.

Obsess functionally.

_____________

* Go to the Wikipedia page on Procrastination; they’re at the bottom. Sorry; I can’t be an accomplice to all of us wasting too much time…

** Which of course, later turns into File by Pile. But if your piles are already rough-sorted, then they don’t need much more than sifting out unnecessary junk (credit card offers and candy wrappers and expired sticky-notes), and maybe some date-sorting.

I prefer the OHIO method for when I get the mail: Only Handle It Once. From the moment it goes from the mailbox to my hand, I don’t dare set it down until I have binned the junk, set the catalogs and magazines in the appropriate reading zone (e.g. the bathroom), and push-pinned the bills to my bulletin board with the due dates highlighted. Otherwise, if I put the stuff down, it gets lost and forgotten in the dèbris of my desk!

That’s Not Helpful!

Here’s a riddle:  how is a broken foot like being pregnant? 

(No, it has nothing to do with wait times.)

Mid-October I entirely missed the last two steps of the stairs to the basement floor and BLAM! Didn’t even experience the slip and fall. Hurt so much I didn’t even cuss, and only OW’d so folks would know I’d been hurt. My ankle really hurt, so I limped to my bedroom and pulled on an ankle elastic (which I keep in my purse because being hypermobile means easily spraining things). Hobbled around the rest of the day, giving it the usual Rest-Ice-Compression-Elevation between doing stuff. That was a Friday.

The next day it was really swollen, with a purple bruise covering the entire upper surface, but it wasn’t horribly painful like a migraine. I called out from stocking work at the grocery, rested more, and tied on a foot brace. My son-in-law said it might be broken (it’s good to have a medic in the house).

Guess what? Broken bones are not always screamingly painful. Whoda thunk?

Sunday I went to the walk-in clinic, and yeup, two of my metatarsals were broken, in a displacement fracture, no less. (Meaning, the bones weren’t even lined up, but were slightly ajar.) They put on a splint. The next day I went to an orthopedist, and after due examination of the clinic’s radiographs, the doc sent me to get a boot-type cast, and make follow-up appointments. On my end, I remembered to get a ‘script for a temporary Disabled Parking permit. Whee.

That was the easy part. But OMG the annoying part is not the broken foot itself.

The annoying part is dealing with the public,
those discourteous, “well-intended”, damnably useless interactions!

Because you see, when you have a physically-apparent injury, one’s body suddenly becomes part of the public’s purview; they are free to make enquiries, “do help to you”, “charmingly” engage in the social distancing of pity, and give malcommendations.

(Hopefully I won’t use up my month’s share of sarcasm quote marks, but one must hazards risk.)

It’s intrusive. Being visibly disabled [sometimes] means losing status to where anyone can ask most anything of you.I don’t mind answering questions from family, coworkers, and friends about the event and my recuperative status. But seriously, why should every random stranger feel privileged to details? Were the issue nephrological, nobody would want to know what was wrong with my bladder, or why I had to make so many bathroom trips, about the thrills of contrast dye, or what my urologist recommended. Yet like when bearing a belly bump, it’s open season. WTF?

It’s unaccommodating disaccommodating. I had not even left the orthopedists office when I was first treated to un-wanted, un-needed, un-help. I had used crutches before (decades ago when I stepped into a rabbit hole, and you can imagine all the er, lame jokes that transpired), and it took but a couple of days to re-acquire my expertise. When I’m using crutches and opening a push-door, the dance goes as follows: swing my body around to back into the door and push against the bar with my buttocks, then after creating the useful gap, balance on the strong foot to turn again, and swing the crutch on my working side around to prop open the door with the rubber foot. Well, the doctors had removed the splint and were sending me down the hall to get the boot. So with my fractured foot all bare, I approached the door to the waiting room and had gotten as far as butting open the door when —

— some idjit hanging around the waiting room decided to be “helpful” and without saying anything, bounded over and suddenly yanked the door open! Mind you, I was balanced on one foot and leaning backwards against the door, so guess what?! Well, I may be clumsy (it comes with the large territory of hypermobility) but thankfully I also have lightning-fast reflexes, and was able to crash to the floor safely. (Dancers and gymnasts know whereof I speak.) That’s not helpful!

And then we have the other unwanted bits of the social model of disability.

It’s … infantilising. Such as when I’m doing something totally mundane, just minding my own beeswax and swinging through a store to get to the restrooms, when some complete stranger feels the need to comment upon my mobility,

“You’re really good at that!”

Except it doesn’t sound at all like admiration at my ability to execute stunning pivots around pyramids of produce, but rather like praising a school child who had colored between the lines on a Kindergarten worksheet.

It’s patronising. When I took advantage of the store’s motorcart to shop for groceries and am cruising at a whopping three miles per hour in a straight line down the middle of the bread-and-jam aisle, and receive a smarmy,

“Wow, look at you go!”

And of course, it’s pitying. 

“Oh, you poor thing!”

There is the assumption of Injury As Tragedy; they have to know when it’s going to be better. Well, what if it’s never going to get “better”? What if it’s permanent, or chronic and intermittent?  It’s the sort of pity where people can’t see past the “broken” part and are uncomfortable; they’re full of Schadenfreude, relieved that the Bad Thing didn’t happen to them. Sometimes the coin of pity they pass along is a kind of magical thinking, token payment to Fate to avert similar disaster.

That’s not helpful.

And let us not forget the malcommendations, a subject of such amazing WhatTheFuckery that it deserved its own post. To wit:

You can tell that you’re running into the lousy end of helpers when the need for social recognition outweighs and over-rules the negative feedback from the recipients. You can tell when they lose the “take it or leave it” perspective and insist that what you need is what they have to offer. Protesting the inappropriateness of their pet form of aid is often useless; you get condescending responses about how they are “specially” qualified, and how you are being unappreciative, and cannot know what is best for you simply because you are of the recipient class.

Such dread Helpers and Fixers want not just the ego-boost and recognition; they want status, and will even sometimes create their own imaginary status markers as proof of why others should recognise their special knowledge and munificent public service. At worst they are narcissistic, at best, merely clueless.

One of the oddest things I have run into with such types is not just the insistence that their pet solution is what is needed, but that any solution they have heard of should be helpful and tried. The advice is coming from them and they want what’s best for you, therefor it’s automatically good advice. I have at times been left so amazed that someone could suggest doing something so far off base with my needs, so profoundly inappropriate, that I was all but sputtering. It wasn’t just an off-target bit of advice, an unhelpful recommendation. It was, I decided later, a malcommendation, a bad recommendation (usually inadvertent) but still bad advice nonetheless.

To take that abstract description to a real-life example, I offer this:

I was at one of my jobs, and a coworker said she would do thus-and-such for me. “Oh, no-no, that’s okay; I’m fine,” I politely dismissed, because I had already sussed out how I was going to perform my duties with my own modifications. But no, she was insistent; after all, she was (at her other job) a medical assistant of some sort,

“No no — I know all about that,” she asserted, her smugness wafting over in a perfumed cloud.

::CRINGE::

Look, as a medical assistant or what-have-you, you don’t know “all about that”; it’s obvious that the doctors know LOTS more.

Secondly, you’re presuming that you know what is best to do TO me, or to do FOR me. Apparently you’ve not realised that I don’t want to be a passive recipient of your “expertise”.

Seriously, when doctors-medics-aides-ancillary-healthcare-professionals know things I don’t know, that’s great! That’s why I’m here visiting your officies. But please, presume some self-awareness of my actual needs, and competency on my part. Work WITH me.

Otherwise, that’s not helpful.

What she said was, “Aquacise”

Random thought:

When my rheumatologist said to get more exercise,

I’m not sure she really meant

that I should be hauling meself up & down stairs

over and over because of my ADHD forgetfulness.

Nicely Non-verbal

One of the things I like about garden center work is being able to help people select plants for their different needs, and discuss how to care for them.  There are few things more pleasant than being able to share information about one of your special interests with other enthused people.

But the other day there was a storm heading in, and customers at the garden center were few and far between.  Until it was time to put things away for the night, there wasn’t a whole lot of sales work to do.  So the other clerk and I contentedly tended the plants.

Free from the heavy cognitive demands of dealing with fractious students, or of trying to make chit-chat while running a cash register, I peacefully filled in the gaps on the benches with fresh stock, and groomed the plants by removing the old flowers and leaves.

My coworker was in another area watering the the endless flats of geraniums.  When I came by to empty my debris bucket, she commented that it was a nice break from the intensity of her other job as an interpreter.  “I like being able to just ‘veg out’ with the plants,” she sighed happily.

After a few seconds’ delay to shift back into conversational gear, I replied, “Yes!  It is nice to be non-verbal for a while.”  And then I went back to silently puttering around with plants.

Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

Holding a cat

Random thought:

Holding a baby is good camouflage

for rocking while standing or sitting.

Cats are less useful.

Family Traditions

My daughter and son had a long conversation the other day.  They knew what they were talking about, within this twin-like patois built upon years of shared jokes.  It made sense to them, for all that anyone else would have found the banter of movie and TV quotes to be strings of non-sequitors.

“You know, the baby won’t learn how to talk if this is all it hears,” I jested, referring to my future grandchild. “The school will call and say, ‘We think your child is autistic; he just speaks in scripts’!”

I was mostly joking of course; conversing in “scripts” hasn’t prevented either of my kids from being able to speak.   Like in many families, sometimes the scripts imply whole paragraphs of dialog familiar to members.  They can serve as conversational shorthand or crutches to encode the meaningful transmission of information when someone is in a hurry, feeling ill, or just making a joke.

Like all the other forms of communication shorthand we use at home, it’s just one of those traditions that creates part of the family culture. (And what better way to hide things from mum than a secret kid argot?)

Sheep Fear Me

It’s time to get up and get dressed for work.  I know it is.  But I don’t want to get out of bed.  Not that I’m particularly warm under the covers (my daughter did warn me this was the coldest room in the house, despite central heating).  But even wearing thermal-knit pyjamas and lamb’s wool slippers and huddling under two quilts and a heavy wool blanket, I’m still cold.  Finally I drag myself out of bed, promising a good thaw in a hot bath.

I swear my very presence in the tub drops the water temperature; it’s all too quickly tepid and I must dry off and dress:

  • Wool socks
  • Wool skirt when not wearing slacks
  • Wool sweater (jumper) or vest (waistcoat) over a shirt or turtleneck
  • Wool blazer over the wool sweater
  • Wool greatcoat and scarf and Thinsulate-lined suede gloves

Duly bundled in all those layers I lurch out to the garage into my car, where I turn on the heated seat.  I don’t know which Volkswagon engineer came up with the idea of building a heating pad into car seat upholstery, but it’s brill.

At work I remove the long coat and scarf, and (until it’s time to start doing documentation) swap my outdoors gloves for a pair of mechanic’s gloves.  Although they help keep my hands warm, I really need to order some arthritis gloves without the fingertips so I can handle papers.

This week it’s been exceptionally cold, and the men at school were wearing warmer long-sleeve shirts.  But I’ve been piling on multiple layers for months.  There’s so much wool in my wardrobe you’d think I was a wolf trying to infiltrate a herd of sheep.  (We would eat lamb too, were it not priced as dear as sirloin.)

Despite all this, my nails turn a dull purple, and sometimes the rest of my digits don’t have much color at all.  My pinkies go numb, and I despair of getting some skin cracks to heal.  Even during warm weather, just a few minutes of using the electric string-trimmer to clip the edges of the lawn makes my hands numb.

I’m not anemic.  Rather, my rheumatologist says it’s Raynaud’s. Swell.  I’m doing all the right things for helping maintain my core temperature, and she’s given me some medication to try (because you know, I don’t have enough pills to swallow).

Well, it’s time to zap my rice-sock in the microwave to warm me up enough to get to sleep.  And I know that if it gets really cold tonight, one of the cats will crawl under the blankets with me.

But any sheep nearby had best beware:  my daughter is learning how to knit!

Comfort-able

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

Depiling

That is, de-pile-ing*.

* Not to be confused with depilling, which is trimming off those annoying “pills” that form on knitted garments. Presumably those wee balls of fuzz form due to the blasted orneryness of the universe, especially with regards to the cosmos’ dreaded knack for providing supplemental stress to anyone with OCD tendencies.

Depiling means to systematically remove piles of clutter.  On my desk, that means not just the usual bills, statements and paperwork, but also:

  • documents to be scanned,
  • Copy Center requisition forms,
  • old appointment cards and unnecessary receipts unloaded from my pockets and other ephemera,
  • 35mm slides to be scanned,
  • an empty postage-stamp strip,
  • wire twist-ties,
  • caps to ball-point pens I don’t even use,
  • hort industry infomercials masquerading as press releases or “educational materials”,
  • spare tins of lip balm and cuticle salve,
  • important receipts to file,
  • a really cool concave rock to use as a water dish when I refresh Rosie’s habitat,
  • the booklet on Inservice courses for Job #2 that I cannot attend because of Job #1,
  • beads that are still surfacing from when the curtain tie-back snapped last month, Read the rest of this entry »

“Made of Win”

Stupid Human Trick # 6,517: spraining my right ankle while walking on flat pavement into my rheumatologists’s office. Actually, my ankle rolled over sideways and I tried to step onto the dorsal (upper) side of my foot. The good news is that I got it iced immediately. I sat there on the bench seat by the doctor’s desk, one foot on the ground, and the other leg folded sideways with my foot on the bench by my hip. “You really are hypermobile, aren’t you?” she asked.

“Yeah,” I sighed, “hence the sprained ankle and shoulder subluxations and tennis elbow…”

She gave me an extra prescription pad sheet with a list of things to do, including one that said to use a cane. Since I was just about to go on a trip, that sounded like a good precaution. While getting some medication, I bought a new elastic bandage, an ankle wrap, and a cane.

Not just any cane, one with a built-in small compass (cheap, but it works), an equally cheap magnifying site (but I did use it to read a sign I couldn’t decipher otherwise), a wrist strap (an excellent feature, so I don’t leave it somewhere), and best of all, it folds up! This is truly “made of win”, as the kids would say.

The eldest was so impressed that I have been instructed to buy another should they be restocked. I also packed my weight-lifting gloves, as they allow for a better grip on luggage, and even give me a little sun protection: Read the rest of this entry »

Budget Issues

There are a lot of difficult things with getting used to a condition that causes regular pain or chronic fatigue. Part of it is just getting used to the idea that there is no quick fix, that this is the New Normal in our lives.

Part of it is realising that medication and treatments will alleviate some of the pain, but that they don’t always eliminate it. Even if we’re not feeling horribly crappy, that doesn’t mean we can just blaze through the day like we used to. The reductions in overall capacity from tiring and/or painful conditions create additional problems that are not always easy to anticipate.

There are the social issues, of not wanting to sound whiney, but also of needing to advocate for ourselves, and either forgo doing some things or request accommodations for others. Meanwhile, everyone else is still working on the idea that relieving pain means making-it-go-away, and that “if you’re not in pain, then you can do everything just like normal”.

There are weighing issues of prioritising things. When we don’t fully adjust to this new normal, it can be partly denial, and partly not realising just how much the condition permeates things in life. It’s one thing to say, “I’m hurting, I’m not going to do this right now,” or “Doing that causes me too much wear and tear so I’m going to do this instead.”

But it’s quite another to realise that we can’t keep putting things off until “I have more energy” or “I have more time” or “When I’m feeling better in the afternoon”. In reality even though there are better times of day or just better days, and even though we find alternative means, what we find is that we still can’t do all those things.

We can do them, but we can only do some of them. When we’re having a good afternoon or a better day, we then find that we have a backlog of Things To Do. In truth, there was no way we could really could do all of them previously in our lives, which is why everyone has those long To do Lists in the first place!

There are budgeting issues of allotting energy. In the new normal, we not only can do less because we have fewer good time periods, but also because we have to pace ourselves. If we push ourselves too hard, then we crash and feel worse than we would have otherwise, and will just get even behinder. (And both the crashing and the getting behinder result in being grumpier, making us and everyone around us miserable.)

What makes pain such a bastard is not just the direct issue of hurting — a lot and frequently, or variably and all the time — but also the secondary issues of pain causes stress and stress aggravates pain and the dreadful feedback loops.

Chronic stress-pain loops can result in not having much appetite (so not eating regularly or nutritious foods), being more sensitive to the ordinary incidental pains in life as well as the chronic issues, getting more easily stuck in anxious, obsessive or depressive states, having depressed immune responses, and of course, it can create the whole horrible pain-bad sleep feedback loop. There’s nothing like chronic pain to make one realise just how inter-related psyche and soma really are.

Chronic issues mean not having much in the way of energy reserves. It can be really easy to fall into a bad habit of “cheating” the budgeting or pacing by relying upon crisis energy. Lots of people (especially those with AD/HD) rely upon the “salvation by deadline” to get them energised to do or complete a task. But this kind of crisis energy is really hard on the body because it relies upon the adrenaline from the sense of crisis. Once that adrenaline rush is past, we crash. It’s a way of pushing ourselves that is counter-productive in the long run.

People who are able to integrate the new normal successfully throughout their lives are those who do best with chronic issues. The novelty fades and the issue is simply another part of their life. Acceptance is not the same thing as giving up. We can accept that we have problems without abandoning efforts to find new ways of improving things.

Prioritising and budgeting energy are important components of the adjustment, just are various therapeutic approaches and regular stress management. Energy prioritising and budgeting are especially important because they are less about what we cannot do, and are more about enabling ourselves to do things that are important.

Whatever “important” gets re-defined as.

“But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”
~Lois McMaster Bujold

Transitions, ACK!

Read up on descriptions of students with autism, Asperger’s, or Non-Verbal Learning Disorder, and you find the familiar piece about how such people “have rigid routines” or “cannot deal with changes in routine”. Some of those descriptions are um, much more rigidly defined than others. I have real problems with descriptions that use a lot of always or never, as real humans just aren’t that binary. In such cases, the author is being more literal-minded than the group they are describing!

In contrast, statements worded as, “Dislikes changes in routine” or “Has difficulty with unexpected changes in routine” would be much more accurate, especially with regards to the unexpected changes — you can brace for, and plan ahead for expected changes in routines.

Therefore, consistency in routine is suggested as a good instructional, parenting, and employment tool. It’s also recommended for students with AD/HD as a support measure.

But you know what? Everyone is attached to their routines. We like to get through our morning preparation without a lot of glitches. “OMG, we’re out of coffee!” We expect holiday celebrations to go a certain way, and when two people become a couple they find out how many rituals were specific to their own families of origin, and then the couple has to decide how they are going to select and combine both of their rituals.

People in general don’t like having to adjust their day around massive changes in their schedule, and are more than a little vexed at unexpected and unavoidable challenges thrown in. Airline travel went from something exciting to a dreaded ordeal as airport security became tighter and tighter, and the airlines restricted what kinds of and how many comfort objects people could bring with them on the plane. No, “comfort objects” aren’t just teddy bears or worry-beads; a wide variety of mundane objects like your favorite bed pillow, brand of soda and portable music player are also comfort objects.

So why are some people so much more attached to their routines, and then undone when faced with changes?

There are a several reasons, related to situational decoding, compensating, and attention-switching. Read the rest of this entry »

Time to go

“How long can it take to walk out the door?”

Other people ask us this. They are incredulous as we struggle to get to places on time, much less with all the materials we needed to have.

We also ask ourselves this when we are getting ready or planning. Surely, we think to ourselves, merely walking out the door and getting into the car takes almost no time at all.

As if!

And that’s why we struggle to get to places on time.

It takes us far longer to “get our shit together,” to remember everything we need, and then get into the car, and unload all the baggage, settle down, and get ready to drive. The least speed-bump in the getting-ready process (like a mislaid car key) throws everything into chaos, which stresses us beyond dealing with that little event, often resulting in getting so distracted from our tediously-created coping methods so that we forget something we usually can remember, or almost-forget and have to go back in (maybe more than once) to fetch something nearly forgotten.

Take a deep breath.

Let it out slowly.

Yeah. Just thinking about these situations reminds us of all those crazy days, weeks and months and years of them. We remember all the scolding, the embarrassment of being late, of missing appointments, of getting to places without something important or even the most necessary thing that may have been the reason for us going there in the first place.

Just being stressed about trying to leave on time makes things worse; the clumsiness increases. Even after finally getting ready one morning (in N-recursive steps, as usual), Read the rest of this entry »

Maslow Cleans House

This How-To post is dedicated to a pal of mine who was commenting about how hard it is to get the apartment (flat) tidied and cleaned up. I was trying to describe how I used Maslow’s Hierarchy of Needs, natural supports, and the Premack Principle together as means for organising this most mundane set of chores.

In this case, we don’t mean that housekeeping is “hard” in the sense of physically mopping a floor, but hard in the sense of figuring out where to start, how to keep the momentum going, getting the job finished, and even figuring out what to do with stuff. The so-called “executive functions” of planning, execution, self-monitoring et cetera are not limited to office work — they are just as necessary in the realm of what used to be referred to (somewhat tongue-in-cheek) as “domestic engineering”.

Amazingly, tidying and cleaning a small apartment is more difficult than doing the same in a full-size house. Granted, the larger house has more rooms, which in turn means more square area to be vacuumed or mopped, and may mean twice as many toilets and tubs to scrub. But the problem with the tiny domicile is that the average 21st-century post-industrial resident has a certain amount of Stuff for daily living, and that amount of stuff does not shrink proportionately just because the domicile does. (I love the German word for “stuff”, Kram, because cramming my Kram into odd places is what I spend a lot of tidying time doing.) Worse, small residences usually lack great amounts of storage space. Unless you are spartan in your personal possessions by dint of poverty or strong design aesthetic*, you have more stuff than the meager cabinets and closets will hold.

Of course we have to pick up first to clear the surfaces so we can clean them. But we could spend all day trying in vain to get things picked up, especially if we have AD/HD and are easily distracted. Picking up is way too recursive — you pick up one thing to put away, take it to where it belongs, find something at the end point or en route to the end point, pick it up, maybe put away the first thing, try to put away the second thing, maybe manage to do so without being distracted by the third thing, or get interrupted by a phone call or a cooking timer or remember something else or…

Heavens, at that rate you would need to get your shoes re-soled before you got the place picked up! And in all that, you’re making a half-assed attempt at trying to clean things as well, because you got thirsty and found something moldy or spilled in the fridge and —

ARGH!

To make any headway in my own domestic engineering, I finally had to set up a hierarchy, somewhat similar to Maslow’s hierarchy of needs. The needs are dual, based upon the needs of the residents for living there, and also upon the housekeeper for being able to get things done effectively. My own order of operations is set up as much as possible for natural supports to be created. Read the rest of this entry »

Just Can’t Do

Wheelchair Dancer had a recent post where she was musing aloud about why a neighbor might keep refusing various opportunities “because she is a quad”. WCD and those commenting raised a variety of interesting possibilities to answer that question. It’s both a thoughtful and thought-provoking post, and reminded me of similar issues that I have encountered over the years. (What I am describing may or may not be the same kind of situation as what Wheelchair Dancer’s neighbor is dealing with.)

Granted, we all have limitations. Some of have have more limitations, and some of us have different limitations than most people. And yet, we have all encountered those people who get “stuck” on their limitations, well beyond the whole (initial) phase of learning to accept and cope with whatever the causes and effects are from those disabilities. They keep talking about what they CAN’T DO, not just as a practical reference to “no, that won’t work for me,” but as refutation to suggestions for a number of ordinary or alternative activities.

Trying to earnestly offer suggestions to such entrenched Can’t-Do frequently falls flat in a conversational game of “Yes-But”, leaving one feeling frustrated and eventually rather disinclined to continue offering suggestions.

Once in a while I run into this kind of thing with a tutee or student. Read the rest of this entry »

Weights and Balances

Today I joined hubby for a short visit to the health club. I’d not been in a large number of months, but decided that this would be a good opportunity to scope things out with regards to what they had. I need to get back into the habit of getting some regular exercise. I figured that scoping things out ahead of time and figuring out what I needed, and when I was going to go, would be a good way of easing back into the habit. Why wait until New Year’s Day to make a resolution?

There are a number of good reasons for me to get some exercise, but an equally weighty number of reasons why it’s been increasingly difficult to do so. Read the rest of this entry »

DISABILITY BLOG CARNIVAL: A Few of Our Favorite Things

 

Description: a photo of part of my desktop, a faux-oak surface with several items lined up along the back edge, (left to right) a clear green plastic desk lamp; a piece of mirror glass on the desk holding the quartet of a green-swirled globe of art glass from Scotland, a faceted crystal, and a small green beaded keepsake tin, and a purple glass tray with green beach glass from the North sea and pieces of granite from Loch Ness; a green glass bottle; several clear green plastic desk accessories including a stapler, tape dispenser, page holder, a tool caddy with green scissors and pens and suchlike, and in front of these is an electric mug-warmer with an old mug bearing the inscription, “SAVE THE EARTH (IT’S THE ONLY PLANET WITH CHOCOLATE)”. The photo has the post title added in the blank area near the top that reads, “A FEW OF OUR FAVORITE THINGS”.

As you may have guessed, shiny or clear green objects are some of my favorite things. This photo doesn’t even show the prismatic green tissue box, photo frame, green fidget-widgits, or Rosie’s habitat with the green lid. Having these things on my desk to use and admire makes me happy. (And that is the mug-warmer I mentioned in my own post on favorite things.)

We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin! Read the rest of this entry »

Favorite Things

The weather for the past few days has been absolutely dreich, with fog, snow, freezing drizzle, more fog and sleet. Three of us have had migraines this week, possibly related to such. There’s nothing worse than waking up to a migraine with the blinding blue snow-glare piercing one right through the eyes to the brain, or the sleet-magnified echo-chamber effect of having a Boeing jetliner come grinding down the street and then going by again and then OMG going by a third time (jeez, it’s the bloody snow plow scraping off the ice), and let’s not forget crickets that suddenly mature to start chirping (STFU!), and lamp timers that develop annoying rattles (my apologies to recent house guests).

Even worse, the weather’s bad enough to make driving dangerous, but not bad enough to cancel school — teh suckage!

Meanwhile, today I’m snugged down at home, and have just made up some lentil soup (a vegetarian Indian recipe) in the crockery-cooker, so recipe at end of post (apologies to folks down-under who are contemplating summer fare).

But there are the very good parts, including family in town for an early Christmas, and being also blessed with necessities like warm homes, full larders and effective medications. We also have a number of little things that not only delight us in small ways, but even make life just so much more pleasant, and reduce our stress loads. As usual, “you don’t appreciate something until you’ve lost it” so we often don’t realise just how much these mean to us, and how supportive they are, until we’re away from home. Here are some of my faves, which fall into two categories: technology that enables me to do things, and creature comforts.

  • The internet. It’s hard to imagine life without this font of information, fun and community. Howdy to you all out there!
  • My MacBook. Years ago I got my first personal computer with word processing, and haven’t looked back. I store my music on it, create PowerPoints to show pictures and illustrate methods in my gardening classes, keep track of my calendar, use it to download and modify and print pictures, play games, and of course, write and store all sorts of documents.
  • To take all those fun pix I have my digital SLR. No more 35 mm film to load and get developed or slides to scan! I can shoot over 600 photos before downloading, which means plenty of shots to get just the Right One, and I can play around with interesting angles.
  • My New Beetle beeps to let me know I’m low on fuel, and furthermore, will beep again the next time I start up the engine to remind me that now I really need to fill the gas/petrol tank. It also has heated seats which sounded like a ridiculous frill until the first winter, and then I realised that I could get myself warmed up by the end of the first kilometer of driving, rather than by the time I’d reached my destination.
  • My microwave that gives me a reminder beep a minute later, when I’ve forgotten something in there after the finish beep. This is fabulous for the AD/HD brain! Sometimes it takes that second reminder beep to penetrate past the hyperfocus to alert my consciousness.
  • And since I have that extra small microwave from when I had a second home in my campus apartment, I now keep it in my bedroom where it’s invaluable for also warming up my Rice Sock. The rice sock is simply a tube sock filled with 1 lb (1/2 kg) of dry rice, and knotted shut. I warm it up for a minute or two in the microwave, and then drape it where-ever I’m cold, stiff or sore. Unlike an electric heating pad, it eventually cools down, so there’s no risk of burns, and it conforms to my body much more nicely. It’s even nice in the summer, when I keep it in the freezer to cool down by draping it over my neck or forehead. Any time of year it’s great for draping across my eyes to shut out the light. Everyone needs a rice sock!
  • Shearling slippers for the chronically cold feet; thankfully these things “wear like iron” (last a long, long time) as I wear them around the house for all but the barefoot months of the year.
  • My mug warmer, a small electric hot plate that keeps my coffee or tea Just Right for however so long.
  • Old, soft 100% cotton pillowcases, ironed blissfully smooth (bonus if the bed linens were dried on a clothes line and smell like sunshine). Cotton also feels cooler in the summer time.

“A few of my favourite things” is the theme for the next Disability Blog Carnival, being held right here on the 13th. You can submit one of your blog posts by using this page, or posting a link in the comments section here (if you can, please send in links by Today-Monday or Tuesday). More links to Disability Blog Carnivals can be found where Penny L. Richards has posted them on this page of the Disability Studies, Temple U blog. They’re great reading!

Here’s that soup recipe, for some chow to go with all that reading:

MYSORE RASAM

2 tablespoons melted butter
3/4 teaspoon black mustard seeds
1 cup yellow lentils (toovar dal)
1 teaspoon turmeric
15 ounce/ 400 g. tin tomato sauce
1 tablespoon ground coriander
1 teaspoon ground cumin
1/4 teaspoon ground red chillies
1 teaspoon salt

Sauté the mustard seeds in the butter. Add to the lentils and spices, plus 4 cups water and simmer for 35 minutes, until the lentils are tender. (Or cook in crockery-cooker for several hours.) Mash or puree the lentils, and simmer 15 minutes more. Soup may be strained for a consommé.

The Fine Art of Fidgeting

Most people think of children with Attention Deficit HYPERACTIVITY Disorder as being kids who bounce off the walls, sometimes literally so. Several years ago, there was some debate as to whether or not our kid had ADHD. All of the disorganised, inattentive, losing-things, forgetting-things details were there, as well as the bedroom floor that was invisible from clutter. Certainly the kid couldn’t sit through dinner without hopping up from the chair several times. But in school the kid behaved somewhat differently (as children often do), and remained appropriately seated. Because the kid is also rather reticent, there wasn’t the frequent class interruptions that one gets with the talkative sort of ADHD student.

The kid is now 16, and not surprisingly, has matured as well as gotten older. Years of developing support systems at home have paid off in some areas; Read the rest of this entry »

Stolen Moments

This old poem of mine is posted for Whitterer and all the other mums and dads out there.

STOLEN MOMENTS

The last bowl of cereal —
the children will want some too,
if they see you eating it.

The latest edition
of the science magazine
while going potty.

The “Travel” section
of the newspaper
at the dentist’s waiting.

Counting the seedlings
under the basement lights
while shuffling laundry.

Watching finches feeding
outside the window
washing the dishes.

Writing a letter
to the distant friend
before everyone else awakes.

Sorting color blocks
with the youngest
while the eldest is at Kindergarten.

Discussing the eldest’s latest theory
of dinosaur extinction
while the youngest naps.

Hugging hubby
before the baby loses a pacifier*
and the eldest needs teeth brushed.

… enscribing this poem
between a nap
and making lunch.

* pacifier = binky, dummy

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