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jeshyr: Blessed are the broken. Harry Potter. (Default)
Help needed! I've been working on a project around self-care for the severely sick folk like me. Most self-care says stuff like "Take a walk, go see a movie, go to a restaurant, take a swim" or similar stuff - none of which I can do as a bedridden person... so I've been making cards with things I *can* do.

I'd love to start a Facebook page to put up what I've been working on but the project needs a name. Originally in my head I've been saying "Spoonie Self-Care" but I'd like to stay away from the "spoon" idea because not everybody who's chronically its identifies with the spoon theory idea. There's a fairly limited set of options, given that it has to be fairly short and fairly self-evident what it means. I don't want to, for example, call them 'Penguin Cards' because nobody can tell what that means unless they already know.

Current favourite idea is "Low-energy self care", partially because Trump thinks that "low energy" is an insult so it must be good. Any better ideas?
jeshyr: Blessed are the broken. Harry Potter. (Default)
Hanging out for the day I can ask the internets whether 6-way individually switched power boards with 5m cords (and preferably, wide-spacing of plugs) exist, rather than slogging through fifty gazillion google searches ...

On the other hand if you want a 6 way individually switched powerboard or a 6 way powerboard with a 5m lead and wide spacing of plugs I know exactly where they are! I just haven't figured out how to convince those two to have babies ...
jeshyr: Blessed are the broken. Harry Potter. (Default)
Part of what's hard about getting this sick for the second time is that every time I go through getting new assistive technology or using a new way of doing things, it's something I've done before. It feels like having to deal with two sets of emotions - the set that's happening now but also in a way the set that I went through in the early 2000's when this happened.

Read more... )
jeshyr: Blessed are the broken. Harry Potter. (Default)
I'm having a crappy day so I thought I'd share songs for crappy days with you. Unless specified, these are links to YouTube videos so you can enjoy them yourself. They're songs I listen to when I'm feeling particularly hopeless, so they're probably a weird collection but they make me feel better...

Amy's Song, by Cold February (link to my dropbox because I don't think there's a copy of this anywhere on the net and it's not available for purchase anywhere that I can find either)
Always Be Brave, by Steve Schalchlin (link to archive.org)
Brave, by Josh Groban
Brave, by Sara Bareilles
The Coolest Girl, by Darren Criss
The Doctor and I, by John Barrowman
Enough, by The Mrs
Firework, by John Barrowman (because I prefer low pitched voices)
The Greatest Discovery, by Elton John with the MSO
It Gets Better, Broadway Sings for the Trevor Project
Not Alone, by Darren Criss
Proud, by Heather Small
You Are Loved (Don't Give Up), by Josh Groban
Your Song, by Elton John
Beautiful Child, Pauley Perette[*]

Finally, this one is not on this playlist because it sounds wrong, but Got Your Back, by Matt the Electrician is also superawesome and I wish there was a cover that fit in better musically.

I'm going to curl up in bed with a hot pack and a cold pack and 6 pillows and two ankle splints and some codeine now. Send good thoughts!

- Ricky

I'm fine, really, it's just a bad day. No panicking, OK?

[*] This also has Kirsten Vangness in the backing vocals, which makes the bit of my brain that screams "fanfic crossover!!!" very happy. Their characters Garcia and Abby would get on famously.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Dear Dreamers,

Just getting my records in order for doctor visit tomorrow and it turns out I have had fifteen worse-than-average days in a row[*] ... no wonder I am feeling down!! In other ways of looking at the same data, it's halfway through February and I've only had 14 days that *weren't* worse-than-average since Christmas Day.

Read more... )
jeshyr: Blessed are the broken. Harry Potter. (Default)
Thank you very much to everybody for glorious 40th birthday messages and emails and phone calls and such!

Must admit that the prize for best message totally goes to my brother Ptolemy and sis-in-law Cassandra​, who sent a series of photos of my brand new nephew Archer holding penguin-shaped messages for me! I haven't even been well enough to meet Archer yet, so that was super extra special :)

Unfortunately my health has been pretty crappy since Christmas so I've been mostly resting and resting and watching crappy TV and resting and looking at silly cat pictures and resting some more ... BORING! We have reinstated some dropped medications though so hopefully that will help me pick up. Unpredictability is hard to deal with. Sorry for all the people whose events I've had to cancel at the last minute.

Health aside, things are going well. Urdu study preceeds apace (165 words at last count) and I have been making the most of time spent staring out the window by participating in the Bathing Birds​ summer survey. In the bits of time where I've felt better, Aama​ and I have been decluttering our little flat and rearranging the living room so everything looks roomy and neat which is nice when I spend all day here.

Life is good.

The photo below is a bowl of yummy chocolate custard with whipped cream and almonds on top. Anne​ brought it over to have with a very enjoyable birthday dinner last night. Thank you Annie!!

jeshyr: Blessed are the broken. Harry Potter. (Default)
Four year old-ish kid holding Mum's hand, visibly shy but wanting to ask me something. We're waiting for the pedestrian lights to cross so I said "hi". She's looking with big eyes at my large reclining power wheelchair, as most kids do.

Eventually she plucks up the courage to speak up, "Is that your iPhone?" pointing to the iPhone that sits on the mount so it's right near my hand and clearly visible, "It's RIGHT THERE for you!"

We had a lovely conversation about how I could watch movies on the bus and everything.

Kids are so awesome!



Jan. 22nd, 2015 11:13 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
I have been learning Urdu since about the middle of November.

I have more-or-less learned the 40-ish letters of the alphabet and the letter name, written shape, and sound of each letter (so each of those cards has 3 "sides"). According to my flashcard-ish thing (Anki) I also have about 150 other "things" which are mostly words but some are sentence structure flashcards too, and each of those cards has a back and a front. So say 100-150 words. You can say a surprising amount with 150 words!

Interesting framing-related thing I noticed this week:

When I think about Urdu learning in terms of "I must memorise these words/grammar structures/spellings" and focus on the outcomes, it's quite stressful. On days when my brain is uncooperative and I have forgotten everything it's even more stressful.

When I think about it as "I must expose my brain to these words/grammar structures/spellings so I can learn" and focus only on the effort, it's not at all stressful and becomes highly enjoyable. Even on days when I have forgotten everything it's not too bad, the thing that's "my job" is only the effort (and I can control that) - trusting that the outcome will follow if I put the effort in consistently[*].

It makes me wonder how much the inevitable outcome focus in schools screws up learners in those environments, especially when their outcomes are not what they wanted. I was lucky when I was in academic settings that my brain worked so well I almost never felt that sort of stress.

Also, of course, I have the HUGE advantage of living with a fluent speaker and having a second fluent speaker with my every day, so I can ask them things as they pop up. Given the number of things I've asked, I'm wondering how anybody manages without!

[*] I am separately learning about adult language learning, to make sure I am doing the most efficient exposing-type-thingies that we know of at the moment, but that doesn't even count as "effort" for my brain because I adore popular science and there are a ton of good evidence-based books about adult language learning.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Bag not found - have assumed it's a lost cause and won't be :(

On the plus side, found an $8 replacement at the op shop which will do for now. Maybe I can adapt it to suit better...

Replaced some lost stuff - there goes the "rainy day" fund for this year.

This morning I have sorted through and filed all the crap in my physical "in" tray. Paid all the outstanding bills I could. Noted everything down in my accounting thingy. Made some phone calls. Discovered some important paperwork that was due a month ago (oops...) in said tray. My productivity is epic!

Another epic thing has been my toilet this past week. It got itself thoroughly blocked with what turned out to be zillions of tiny matted tree roots and the entire bathroom got covered in backed-up raw sewerage which was really unpleasant. So far we're at 4 plumbing visits and counting ... there's only a tiny leak left though, it's 99.99% fixed. One of those rare times I am grateful I don't own this house so the plumbing bills are not my problem!
jeshyr: Blessed are the broken. Harry Potter. (Default)
Lost bag searched for but not found. Reported to police lost&found and spoke to a bunch of shopkeepers but I'm thinking if it hasn't turned up it's not very likely to now ...

Also realised that all the Christmas cards i'd drawn were in there, as well as my fancy $100 bluetooth earset DAMMIT.

Oops ...

Dec. 5th, 2014 10:51 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
I lost my bag! WOE!

My awesome loved-to-bits custom-made-just-for-me messenger bag which is juuuuust the right size to hold my immense amount of crap AND fit on my wheelchair footplate under my shins where I need something to rest them on. The bag I carry everywhere and which contained, amongst other things, the oversized pencilcase thingy with all the meds I usually carry around with me.

On the plus side, it DEFINITELY has my name, address, and phone number in it if anybody bothers to look at the paperwork and it did not have my wallet in it at the time. Pretty much all it had was a bunch of crochet, miscellaneous paperwork and my meds (none of which are fun to abuse) - nothing worth stealing except the bag itself. So hopefully somebody will hand it in somewhere.

On the negative side I've had somebody look (almost) everywhere it may have been and phoned the cops and nobody's seen it yet ...

Oh and it was almost certainly lost on my local shopping strip so if I can find some energy tomorrow I'll trip down there and word up all the shopkeepers in the area. Most of them know me - there aren't too many loud women in reclining wheelchairs around who chat to everybody - so that will help at least.

Plesae come home, oh much loved bag ... I miss you!


The bag fell off my wheelchair on the way to the bike shop where the nice bike guys installed the new tyres on my manual chair wheels. So at least that got done? And I was able to grab the new Urdu book from the library while the tyre guys where doing their thing. So the day wasn't a total loss ... but ARGH.

jeshyr: Blessed are the broken. Harry Potter. (Default)
As those who see me RL will know, I regularly record a ton of TV shows I later delete unwatched.

Recordings are sometimes one-off picks from the TV guide but more commonly they're series that I know I like or keyword recordings set off by the presence of a particular keyword or actor name in the description, so I don't always know what's being recorded. I delete things after watching, but otherwise deletions mostly happen when my hard drive is close to filling up and I go through and delete a bunch of stuff that's sat around unwatched for a long time.

One of the slightly humorous consequences of this approach is I often have recorded shows which I either didn't know were being recorded or have completely forgotten about. There was one there tonight called "Predators In Your Backyard". That's all I knew about it - it was recorded six weeks ago from a keyword I think so I don't recall anything about it except the title.

It's been sitting there for a while as the second oldest unwatched thing... I had assumed it was going to be about bugs and beetles and the whole teeny tiny ecosystem we have there in our backyards. David Attenborough type science of the very small.

I just turned it on ... it's about wolves in Yellowstone national park.

My brain feels slightly broken ...

jeshyr: Blessed are the broken. Harry Potter. (Default)
Doing pretty good.

Things have settled down into "flatmate away" mode and I feel more secure and everything is running more smoothly. It's harder to cope without the additional support - I get less energy to do things I want to do and more of it goes into necessary stuff - but I can cope.

medical updates - cautious optimism )

I've been christmas-decorating the house slowly, and getting people to do tons of odd jobs and other bits and pieces that have been on my "to do" list. Having the house the way I want it is an especially big deal when I spend all of my time here!

That's all I can think of for now ... Love you all!
jeshyr: Blessed are the broken. Harry Potter. (Default)
Thank you all for the acetone suggestions - mostly I just didn't have the spoons to go get any but also I know from experience that enough would peel off soon enough, which it mostly has. Also having had (much) experience with superglue, I was quick enough to make sure that although three of my fingers were mostly covered in glue they weren't stuck to each other or to anything else which helped!

The superglue I've used for a long time has been nifty blue bottles which have a tiny plastic-bag-like bladder inside - google tells me it's Selley's Supa Glue Control Bottle. It's like magic - unlike every other superglue I've ever owned the top does not easily glue itself shut and it works for months. And if the glue won't come out, you squeeze harder and then it works ...

Last time I ran out though, I could not get any and resorted to one of those nasty tiny tubes. It seems that I had accidentally programmed myself with "if glue does not flow, squeeze harder".

That's my story and I'm sticking to it. Also, the Selley's is back on the shopping list :)

For the crafty types, I have uploaded some new photos to flickr of recent projects.

jeshyr: Blessed are the broken. Harry Potter. (Default)
Today's quiz is especially for crafters ...

When re-assembling the tiny model Christmas Tree prior to the festive season you discover that the star on the top has been snapped off during its storage. You decide to superglue the wood back into place - it's only a small bit - and fetch the superglue.

Upon squeezing the superglue tube, nothing comes out. Do you:

A. Sensibly stop and investigate what's going on, superglue is nothing to mess around with.

B. Give up the project altogether, you obviously aren't meant to have a star on the tree.

C. Stupidly squeeze the tube harder until the tiny plug of dried superglue that was at the tip shoots out and there is a terrifying geyser of superglue all over the tree, the star, your fingers, and the lap desk.

I'll be over here in the corner continuing to pick superglue off my now-somewhat-raw fingers.



Luckily, laughing at myself is a life skill I have long mastered. I am more amused than anything... and it's a good excuse to get a new tree.
jeshyr: Blessed are the broken. Harry Potter. (Default)
So, it's really bloody hot here in Melbourne today - it's 34C now which is also the predicted top temperature. It's the first icky hot day of the summer, pretty much.

The good nows is that I have located the tiny remote control for the machine. It was on the bench behind the soda water machine, of course!

The bad news is that the remote control isn't working. I'm not sure if it's broken or if the batteries are just flat. Batteries have been put back in the recharger though, so we'll know soon ...

Feel like a wrung out dishrag. I really hate hot days.

I hope everybody who's hot today is coping.
jeshyr: Blessed are the broken. Harry Potter. (Default)
TL;DR version: About the same.

This is incredibly boring, but being able to look back is useful.

Full status report here... )



Oct. 18th, 2014 09:19 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Status report ... mostly health stuff )

Can't think of anything else just now. Despite all the above health crap I am basically happy and doing OK emotionally.

jeshyr: Blessed are the broken. Harry Potter. (Default)

I'm sharing this petition again because it's important and also because today I was privileged to see the person who started the petition. She doesn't have her own internet connection because she's in transitional housing and can't afford it, so she can't promote this herself - a catch-22 of disadvantage.

Please sign the petition and please also share it with other Aussies. Our most disadvantaged friends need the voices of the rest of us to speak up for them when they are unable:

Victorian State Governmnt: Stop The Closure Of St Kilda Centre Against Sexual Assault

Please sign and also share the petition - you're welcome to share this post's URL, I'll set it to publicly viewable.

Thank you.
jeshyr: Blessed are the broken. Harry Potter. (Default)
I can talk just fine. I babble an absolute ton when I have the energy to do it!

But when I get tired it gets harder and harder … it’s not that I can’t talk, it’s that instead of pulling words off the tip of the tounge I have to trek over to the nearest mental fishing hole, set up my mental fishing rod and bait the mental hook and sit there until I metaphorically 'catch' the word I want, then mentally trek back to the conversation I’m trying to have and THEN I can say it. The amount of energy it takes to "fetch" a word goes up as my total amount of available energy goes down, so the net effect is that I get quieter and quieter and quieter as my energy goes down.

I just wanted to share this because I wrote the above paragraph in email and it's one of those things I occasionally try to describe to people and - usually - fail utterly and I really like this description. So saving for posterity :)



jeshyr: Blessed are the broken. Harry Potter. (Default)
Ricky Buchanan


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