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
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 :)



Sep. 21st, 2014 11:38 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
What if you could predict the future perfectly, but nobody around you could ever know about it because part of what you could see would happen was that you would never tell anybody.



I think my head just exploded.



Sep. 20th, 2014 06:58 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Bodies suck.

I have spent most of the last 3-4 days doing pretty much zero, by which I mean less than my usual almost-zero amount.

I was so sick on Thursday that I checked to see whether the pharmacy had accidentally omitted my prednisone from the medication pack but no, it's just my body being ... like my body is.

This is not a thing I like :(.


Sep. 16th, 2014 02:26 am
jeshyr: Blessed are the broken. Harry Potter. (Default)
Universe hating on me ... Stubbed my toe about four hours ago, did enough damage that the blankets touching it is hurting. Finally have in and got up to tape it up so I can sleep ....

... Yup. Stubbed the other foot on the same obstacle.

I put the stool away this time though!

Sorry for radio silence so long - been spending all my energy on

Sent from my iPhone
jeshyr: Blessed are the broken. Harry Potter. (Default)
Migraines suck.

Just in case you wondered...
jeshyr: Blessed are the broken. Harry Potter. (Default)
Just watched way of the peaceful warrior and spent the entire movie thinking that Ashton Holmes was a young Jesse Eisenberg.

Yay faceblindness! LOL...

Even looking at them side-by-side I can't pick the difference.

jeshyr: Blessed are the broken. Harry Potter. (Default)
Where does the year go? Nine months since my last very-misnamed yearly-ish status reports so here’s another one ... mostly because my most awesome myotherapist asked today whether I was tracking functioning and I said "Yes" and then thought "When did I last do that?" So here's one for Elaine :)

TL;DR version: Health sucks a bit more than it sucked before.

Full status report here... )



Mar. 23rd, 2014 02:50 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Two doctors in the past fortnight have said to me there's nothing else they can do to help me. They were nice about it, but just out of ideas.

Last week almost an entire tree was unnecessarily and uselessly cut from right beside my bedroom (back) window because the roofing contractors thought I wouldn’t care if they completely changed the view from outside my window for no reason and without even asking or notifying me. Now I can't lie in my bed and stare through the dappled shade because there's no dappled shade left and the sky is very bright so I can't lie on my bed and rest without curtains closed or eye mask on.

Today there’s a neighbour from upstairs very very carefully cutting away every teeny bit of the bottlebrush (that I’ve grown) that extends even 1cm over the edge of the concrete driveway on the side where his car is. This is not plant that’s in any rational danger of actually touching his car and it’s soft leafy bottlebrush tips so it wouldn’t hurt anything even if it did touch his car... the tips are over half a metre away from his car, mostly. I asked him to toss the cut bits back in the garden if he didn't want them, which he did do at least. I know he has mental health issues of some kind (he's a hoarder) and I don't want to make him feel bad, and also I don't want to make the neighbours upset when I have to live here with them, so I shut up after that.

I basically feel like the universe is jumping up and down on me and screaming "YOU HAVE NO CONTROL" and laughing in a very unfriendly fashion.

I hate feeling like I can't change anything no matter how hard I try. And I hate that I know it's mostly a psychological thing and I have in the past found contentment despite external stuff being crappy ... so my emotions end up feeling like just one MORE thing I can't control which is a bit positive-feedback-loop-ish :(

Universe, give me a break OK?
jeshyr: Blessed are the broken. Harry Potter. (Default)
Lyrics - especially misheard lyrics - are such fascinating psycholinguistic phenomena ...

Lying in bed today listening to my copy of Miss Saigon. I don't know how many times I've heard it but I wore out my cassette version of the original cast recording with my second favourite Filipino on it [*]. Halfway through there's a lyric in the song Why God Why that I had always heard as 'I don't believe in even' and today my brain suddenly resolved it to 'I don't believe anything'. Wow!!

I have been working this month on a free MOOC course on songwriting a lot of which is about settings lyrics, and the word 'anything' in that like is badly mis-set - it comes out with the emphasis on the middle syllable 'anYthing' which is really really not how it's ever pronounced in English. I wonder if thinking about that so much is what made my head suddenly resolve it?

Brains are fascinating...


[*] Lea Salonga. Like all fans of Dreamwidth, Afuna is my favourite!!

Sent from my iPhone


Mar. 17th, 2014 10:52 am
jeshyr: Blessed are the broken. Harry Potter. (Default)
These are two photos of the view outside my bedroom window. The older photo shows light green box elder in the background, but most of the foreground is the dark green leaf of … I don’t even know what the tree was. In the newer photo, there’s just the light green and a completely bare stump. You can’t tell from the pics, but the dark green was right up against the window and the light green is 4-6 feet away.

The workmen who cut down the tree immediately outside my bedroom window without even bothering to tell me that it was going to be done were utterly shocked when I burst into tears. How on earth can anybody imagine that I would not care or want to know about what happens within a foot of my own bedroom window?

I know full well it’s body corporate land and I have no control and (virtually) no ability to make them stop, even if I had known in advance, but the fact that they were shocked that I might *want* to have some knowledge or control really baffles me …

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

So, I went back to the exercise-prescribing doc yesterday and showed her my graph of disappointing results showing that I'd done exactly what she'd asked and it hadn't worked. I took my flatmate along, despite her only having flown back to Australia less than 12 hours before she was happy to come and be moral support and hold my hand while I panicked because having to tell a doctor their pet theory doesn't work on you can be scary and dangerous.

To my IMMENSE relief, the doctor looked at the graph and asked me only a few questions and basically agreed that it wasn't working. I told her my plan, which was basically to drop the exercise down to a level where it wasn't impairing my quality of life (I'm guessing 1/3 to 1/2 of the existing level) but continue to try to do some of it, and she agreed that it seemed like the way to go and that there was pretty much no point in me seeing her again.

So yeah. That was both a huge relief and anti-climactic ... and also sort of disappointing, because no matter how much I know intellectually it's unrealistic and unlikely I always have a teeny sliver of hope that a medical person will have another new thing to try and it'll help.



Mar. 14th, 2014 01:20 am
jeshyr: Blessed are the broken. Harry Potter. (Default)
There's this dream ... Ever since I got sick I've dreamed it - twenty years of this same bloody dream. I dream that I'm with a group of friends but I can't keep up with them. They walk faster than I can, pulling away progressively, and I try as hard as I can to keep up ... But I can't speed up and I can't call out.

The details vary - sometimes it's high school friends, sometimes folk from university. Sometimes I can't open my mouth to speak, sometimes I can call out but there's no sound. It's like I'm struggling to move through treacle, or tar - I can, with utmost effort, move a little but I am left further and further behind. Having some ability to go forward though gives me the illusion that if I just tried hard enough I could somehow catch up.

Most times nobody looks back, sometimes someone looks back but they don't see me. They never seem to notice my absence - they never look for me or wait for me or come back for me.

Always I am left struggling, alone and unseen and unmissed.

I really hate that dream.


I *am* fine.

Well ok, I am maudlin tonight but probably because I'm so physically and emotionally exhausted right now - that's pretty standard for me. I'll feel better in the morning after a hopefully decent nights sleep. There's nothing wrong or anything so don't panic ok?
jeshyr: Blessed are the broken. Harry Potter. (Default)
Dearest Friends,

Remember that "standing up and sitting up a bunch of times a day" lark I started back in September? The one that fifty zillion of my friends told me was stupid?

… it didn’t work.

tl;dr )
jeshyr: Blessed are the broken. Harry Potter. (Default)
My restless legs (RLS) has been getting bad lately, enough to stop me sleeping which is unusual for me.

Found out today that one probable cause is antihistamines of the exact type that I *need* to take for mast cell crap.. I've been taking more of them because getting the prednisolone dose down under 5mg means that my immune system is going crazy.

Talk about catch-22:
Option 1: Take prednisolone long-term. Long-term side effects of pred include cataracts, osteoporosis, and weight gain.
Option 2: Be incredibly itchy all over all the time. Take buckets of antihistamines. Have restless legs so badly I can’t sleep.

That’s a fucking unfair set of options, life.

There is a *possible* option 3 which is that the RSL is actually been triggered off by an iron deficiency, but given that I haven’t been losing any blood (no periods, no other bleeding) and I eat lots of red meat that seems unlikely. I’ll get it tested ASAP though because it’s definitely the best possibility at this point!

Bleah. ;(
jeshyr: Blessed are the broken. Harry Potter. (Default)
Argh everything ITCHES.

I forgot what it was like ...

Hate this.
jeshyr: I'm disabled, not dead! (Disabled not dead!)
[Some of these words are borrowed, with permission, but these views are all my own]

Aussies, have you heard of the BSWAT? There will probably be press coverage about it over the next week so here’s a quick primer on what it is and why it’s important:

BWAT is a test to determine the wages of a person with a disability working in supported employment - this is what used to be called a "sheltered workshop."

This is how it works:
Take the basic wage for the simplest job you can imagine. Anyone able-bodied going into that job would be paid, for this example, $10 an hour. Then we factor in "productivity" - so if a worker without a disability made ten items an hour, and the worker with a disability made three, they would then be paid $3 an hour. You can argue about whether it’s fair to pay somebody $3 an hour or whether the government should subsidise the other $7 so they are paid the same, but at least it’s logical that if you do 30% of the work you get 30% of the money.

The BSWAT goes a step further. It asks the disabled person questions like "what meetings does your boss attend?", or "what would you do if there was water on the floor?" If you can’t give the "right" answers to these questions, your wage is reduced even more - some people end up receiving only $1.70 per hour! It makes no sense to me to require people with intellectual disabilities to answer questions like "what meetings does your boss attend?" and to change their wages depending on whether they can tell you the answers.

Mr Nojin and Mr Prior took this system to court, and the Federal Court agreed, that yes, the BSWAT tool is discriminatory … BUT it is still in use. 10,000 disabled people in Australia still go to work every day and get paid these wages, calculated using this discriminatory tool.

If this bothers you, please pay attention to the news on Monday 20 January 2014!

If you know someone who is affected by the BSWAT, and who is worried or confused, please direct them to email or or contact the AED on (03) 9639 4333 or at

Feel free to re-share these words.
jeshyr: Blessed are the broken. Harry Potter. (Default)
[Trigger warning: Discussion of rape and public shaming of children in this status. Please be safe.]

Cut for safety ... )

OK. Feel better now. Thank you for listening to me :)
jeshyr: Space ship Serenity (Firefly)
I was feeling grumpy and I couldn't sleep last night so eventually I gave up trying so hard and turned on the radio to ABC 774 like I usually do for a bit of overnight company. Most of the time that's decent talk radio overnight, but on Saturday nights, 774 has Saturday Night Country - country music - which I hate, so I flicked over to Radio National, my second choice listening ...

... but on Saturday Nights RN has some World Music show which I also hate, the music is not to my taste and I wanted to hear people anyway ...

... so grumpily I switched over to ABC News Radio. I don't like News Radio much - I'm not a news person at all - but it's programmed into my radio thingy. I think the last time I listened to it for more than 10 seconds was probably 6 months ago or more. So this was REALLY random …

News Radio after midnight is just streaming the BBC world service, which is OK. When I flicked over they were discussing something about how China was going to land a rover on the moon today, that's interesting enough. Without any fanfare they crossed to a correspondent somewhere - I wasn't paying much attention, really ...

... except then I was paying ALL my attention because I realised their correspondent narrating the moon landing live!

There was only about 5 minutes of it and I'm not sure where the guy was, physically, to be doing it. Everybody seemed quite taken by surprise, apparently it happened quite a bit earlier than predicted because they used an unexpected landing site.

Last time an unmanned lander soft-landed on the moon, I was one year old. I've talked to my Dad occasionally about what it was like to watch Apollo 11 land on the moon, and felt envious that nothing similar had happened in my lifetime. Now I feel immensely lucky that, quite by chance, I got to hear this one... an unmanned lander in 2013 isn't nearly the same as a manned mission in 1969 of course, but it was still pretty amazing to hear!

Love to you all,
jeshyr: I'm disabled, not dead! (Disabled not dead!)
Australian Federal Coalition Government[*], you suck.

Yesterday they renamed the NDIS disability support "launch sites" as "trial sites". They swear there’s no associated change in function, which is true this week at least, but it doesn’t sound positive for the future. A "trial" is something you decide has been passed or failed - I don’t believe for a second that the promise-breaking Coalition isn’t going to try to trim back the NDIS, if not gut it altogether. Language matters, and why would you bother changing something like that unless you had some other plan - in isolation it's not even worth changing.

Why would I disbelieve the Coalition when they promise stuff? Here’s a good reason: As somebody who’s largely bedridden/housebound, the forthcoming National Broadband Network with high-speed internet would have been awesome for me. Unfortunately the Coalition have reneged on their election promises that it would even happen in my current location. Even during the election they were saying they would deliver less than what Labour were promising, but they’ve even gone back on that much-reduced promise and cancelled roll-out of fibre in HFC areas.

"HFC" is the cables that deliver cable television and similar. Like many folks in the nominal HFC area I can’t actually access cable TV because my particular unit isn’t hooked up[**], though I understand that the unit in my block closest to the road probably is. Even after my unit is (in theory) fully hooked up, HFC apparently acts like a weird sort of internet party line where it only works decently if most of your neighbours aren’t also using it… I have heard many sob stories about hideous HFC services. Here’s another HFC sob story (written a year ago so ignore the bits about what it says will happen with the NBN).

Coalition, you suck so much I am all out of words for it …

No love,

[*] The Coalition government in Australia is a mostly our conservative party, but the conservative's official name is the Liberal Party, which is sufficiently confusing that I hate writing it because I know bunches of you are not in Australia and aren't used to mentally translating "Liberal means Conservative" in your heads.
[**] Cable TV is not commonly used in Australia. I have never used it and don’t know anybody who has it available either. Much different to the USA situation.
jeshyr: Blessed are the broken. Harry Potter. (Default)
It’s fascinating how strongly our brains want to put people into categories and label them even when we know logically how crappy and unhelpful and inappropriate those labels/categories can be… I have some friends now who are disabled in ways that I don’t recognise, and the urge to ask them what their disability is called keeps popping up and surprising me. Consciously it makes no difference to me and I want it not to matter and I try *very* hard not to box people in with their labels … but there’s still that little bit of my brain that demands to know.

Odd psychological dichotomy.

RIP Anekin

Nov. 20th, 2013 06:11 pm
jeshyr: Sleeping cat draped over cushions (Ani)
Anekin cat looking majestic and regal, earlier today.

We had to put dearest Anekin cat to sleep today.

He was the king of the whole world and he was an awesome friend to seedy and then to me for many years.

… and as much as it can never be "time" or "okay" or anything like that, it was time and it will be OK. The vets were 1000% awesome and supportive and helpful too, for which I am massively grateful. Thank you St Kilda Veterinary Clinic.

I already miss him tons. We’re having fish for dinner tonight in his honour.

I just wanted you all to know.

jeshyr: Sleeping cat draped over cushions (Ani asleep)
Life has been weirdly dramaful today

First stupid messing around because the shopping lady was sick and then the replacement wanted to change the time twice .. but eventually the shopping got done.

Then the wheelchair servicing guy came and sorted my wheels out - joystick now firmly attached and shuddering is eliminated. He said I’ll need new castors next servicing, but nothing today luckily.

And then I took Mr Anekin cat to the vet … he had been throwing up so on Saturday an awesome friend took him to the vet for me … he mostly stopped throwing up but still won’t eat, which makes it day five of not eating and he was all lethargic and unhappy with life and his coat is ungroomed even, so I took him back today.

The vet was very cute! He thinks Ani has a bunch of something in his gut blocking him up, probably a fur ball since he’s not known for eating random things. Plus he’s a bit dehydrated, probably from the nausea. He offered to keep him overnight but I really can’t afford it so the vet gave him a bunch of laxatives and gave me some to bring home and I have to take him back if he’s not eating in 24 hours or so. Cats end up at risk for kidney damage or something if they don’t eat, so hopefully he’ll pass whatever it is soonest.

Just got home from the vet and collapsed on my bed and the phone rang… I hadn’t grabbed it on my way to bed so I ignored it but it rang again right after, plus my mobile rang too, so I answered the closest one… it was the police saying they’d found my wallet! The other phone kept ringing, when I finally answered that it was Dad checking that the police had got onto me - he’s listed as my emergency contact so they’d phoned him first and he’d given them my number. Apparently it even has my $20 still in it, so that’s a relief! They were so quick at finding it that I hadn’t even noticed I’d lost it yet which was fairly impressive … I must have dropped it on the way back from the vet, which goes directly past the police station. Anyway I can pick it up any time so I’m feeling like a dodged a bullet there!!

So today was way too eventful!! 

I slept a bit after that, then this evening I gave Anekin his last anti-arthritis injection (Cartrophen) and more of the liquid laxative from today’s vet visit. I’ve got him set up in the bathroom because with that much laxative inside him I’m a bit afraid for the carpets!! Unsurprisingly, he’s in an awfully bad mood but if he hasn’t drunk anything when I go to bed I’m going to stick a bunch of the electrolyte solution in a 5ml syringe and dribble it into him too, dehydration ain’t fun folks. I do hope his insides decide to start working because if he doesn’t pass this obstruction by tomorrow we’ll have nasty decisions to make … that really scares me. I don’t want to spend my life savings on him but it would be inaccurate to say I can’t afford treatment - I could afford it, it’s just that those savings are for my one-day-some-day-hopefully house and that’s really important to me too. Also, he’s thirteen and he has a wicked nasty case of old age arthritis, he’s an old man cat … but he’s my buddy and my friend and I’ll feel like a nasty evil undeserving person if I don’t feel like I’ve done everything. Ugh.

Send good thoughts?

Love you all,

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

I really hate spring.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Also the man on the other side is here for a swollen scrotum and is partially deaf so the doctors have been explaining things over and over at increasing volume to him. Life is never dull!!


Nov. 4th, 2013 02:36 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Getting a saline infusion today so I'm sitting in the medical day unit and the weirdest thing ... I think the two women on my left are those semi-mythical creatures called Normal. They have spent an hour discussing various celebrities and their marriages and their lives, and how Today Tonight (local dodgy current affairs beat-up show) is doing a segment about a woman who deals drugs out of her government housing and isn't it shameful that she's allowed to do that.

Luckily I have headphones to block it out but it's almost like anthropology ...

jeshyr: Blessed are the broken. Harry Potter. (Default)
Doing crafts takes time but it isn't something I find difficult.

Writing Etsy listings though, that's scary and hard for me ... I do NOT understand why. It's not just that people will see my stuff - dropping crafts off at the Little Sparrow Shop to sell doesn't scare me. Uploading pics to Flickr doesn't scare me... Just these bloody listings!

Anyway there's a new one up today and I'll be doing more this week and next week until I'm caught up...



Nov. 2nd, 2013 01:38 am
jeshyr: Blessed are the broken. Harry Potter. (Default)
Oh god I can't sleep and everything itches and I'm too tired to do anything and too wired to do nothing and my abdomen hurts and I AM GRUNPY ... Oh fuck it all but PMS sucks fetid donkey balls. Ugh.


Oct. 31st, 2013 04:15 pm
jeshyr: Blessed are the broken. Harry Potter. (Default)
Short post is brief because I have a UTI and I'm exhausted and drained and flat.

Antibiotics suck, but green antibiotics at least make me smile because they're a nice colour.

Yoghurt + Ural ... my insides are probably weird.

Exercises continue to be hard hard hard and suck up all my energy. I just got up to doing 7 sets per day but I'm NO WAY going to make 7 today with a UTI so I dunno. Ha;rd hard hard.

CPAP trial last week was awesome - no migraines, slept better, woke up with a bit more energy ... and then had to give the machine back as it was only a 1 week trial. FRUSTRATING!!

Initial appointment to see sleep specialist post-trial was 5 December but managed to get them to move it forward to 21 November so that's something ... still 3 weeks away though. Somehow harder to cope with feeling like crap knowing there's something that would improve how I feel but I need to jump through their hoops to access the subsidised device so it's worth it in the end.

Sick and tired of feeling sick and tired :/

Actually I'm mostly reasonably cheery - think infection is getting me down.



Oct. 19th, 2013 01:39 am
jeshyr: Blessed are the broken. Harry Potter. (Default)
Sweet peas are what spring tastes like to me.
jeshyr: Blessed are the broken. Harry Potter. (Default)
Hello Hivemind!

Tody's challenge - list the top twenty(-ish) movies you think contain the most standard "assumed viewing" and cultural knowledge for somebody living in Australia today. The ones that people assume you saw, living up in a Western/English speaking country, and make jokes about and the ones which TV shows obliquely refer to without being clear what they're referring to.

Why? For viewing suggestions of movies I can watch with my lovely flatmate, known to some of you. She has pretty much no knowledge of the English-speaking movie "canon" and I keep realising more and more how limiting that is for somebody living here! Also, movies are fun and watching things with friends is fun and we can get them free from the local library because they're old, so they suit our budget. Also, my flatmate and I are not massively keen on horror or stuff with a bunch of sex or gore, so we're steering a bit towards "family-ish" movies. Which isn't to say we won't add adult rated stuff to the viewing list, just that it'd have to be even more culturally relevant to make the grade :).

Obviously, this is an INCREDIBLY subjective type of list and will vary wildly depending on almost everything, including what country you live in, your tastes, and when you were born... but the more folks share their ideas, the more I can see what comes up in everybody's lists.

We have already watched these:
- The Wizard of Oz
- The Princess Bride

Ones that I've thought of already, in absolutely no particular order, include:
- Back to the Future
- Gone With The Wind?
- ET
- Ghostbusters
- Home Alone?
- Neverending Story
- Labyrinth?

- 2001: A Space Odyssey
- Star Wars 4, 5, 6
- Star Trek - which one(s)?

- Muppet Movie

- Fight Club
- The Matrix (probably just the first one?)

What sayeth you?
jeshyr: Blessed are the broken. Harry Potter. (Default)
I am doing my absolute best with these new exercises but OMG is it hard. Asma is helping with encouragement and cheering for me, but I'm feeling very fed up with it!! I have to push myself to the limit every single day to manage the prescribed 10 repetitions, and it doesn't leave any energy for fun or going out or other projects :(
jeshyr: Blessed are the broken. Harry Potter. (Default)
I do wonder what weird quirk of biology means that any time I have a mast cell attack or a migraine at night, invariably I am olso inflicted with insomnia that night.

Also, it is very annoying that migraines come with free restless legs and myoclonic jerking.

Have had codeine, paracetemol (tylenol), and phenergan. Still flushed, in pain, jerky, and insomniac.

jeshyr: Blessed are the broken. Harry Potter. (Default)
I went to see a new cardiologist, courtesy of my Haematologist who pulled strings to get me in. I like her.

She prescribed new exercises - 1 minute standing still and then 5 minutes sitting with feet on floor (and if I can manage, without leaning back against anything) for every hour or so I am awake. Initial goal is 10 times per day, since I am awake very approximately 10 hours out of every 24.

[Edit: We later knocked this goal all the way down to 5 times per day, since it was impossible for me to keep up.]

It is TREMENDOUSLY hard! Which makes me crazy frustrated because WTF it sounds so teeny tiny when you describe it.

This stuff is based on NASA research about the effects of gravity deprivation such as one gets from being bedridden for a ton. There is research and a book called "Sitting Kills, Moving Heals" which is a very inappropriate name for my level of ability where sitting is the "moving" part. The research still applies though, and the author is an ex-NASA scientist so she knows of which she speaks.

The exercises are hard. They don't hurt but they do wear me out thoroughly to the point where I even had to cancel a dentist appointment and a doctor visit. New Cardio asked me to focus on them for 8 weeks pretty much to the exclusion of all else,w which is really really hard but do-able since it IS a new thing and I had pretty much thought I'd run out of actual New Things in treatment at this point. So I've put everything on hold for 8 weeks and we'll see how it goes. She said that even in the best case there wouldn't be expected to be even a sliver of improvement before 6-8 weeks, so I am trying to be patient.

So if I don't write, I'm busy doing that OK? Has anybody else had similar?

jeshyr: Blessed are the broken. Harry Potter. (Default)
OMG tomorrow's Aussie election cannot come soon enough. I am so much over it it's not funny!! Do not want to hear about anything political for the next year at least... UGH.

I may spend the next 48 hours in bed with funny cat gifs and refuse to come out, or I may trot down to the local primary school to help a friend hand out GetUp "this is what the candidates said they stand for" cards which I do think is a good thing.

In either case, this week I deserve a medal for not giving up in horror and refusing to do anything, I think.

Since my saline IVs ended I'm back being much more fatigued and much more orthostatically intolerant. On the saline IVs, even though I was travelling to the Alfred 3x per week, I could sit up more in my recliner or wheelchair, stand up more and walk around the house more easily, shower independently without needing help getting dry or needing a nap to recover, and I wasn't sleeping so much during the day. I also had fewer migraines while I was getting the IVs, but I can't think why that might happen so I suspect it was more coincidental than anything... By each Friday I was pretty exhausted from the travelling, it wasn't really sustainable to travel that much, but it's been awful to go back to nothing!!

My doctor wrote up an order that I could pretty much choose when I want to go and get more IVs, up to three times a week. I'll definitely get one when I'm going into the Alfred anyway for an appointment, and I think perhaps once a week in weeks where I don't have any appointments. I'll see how I go.