If you are looking for specifically for stuff on living with ME/CFIDS/CFS, you will find some amongst the entries here.

(Very) occasionally my bloggings are not suitable for people under 18 or anyone likely to be upset by what is often referred to as 'adult' content, so consider yourself warned. Mostly I just swear a lot.

Comments are welcome and thanks for popping by. :-)

~~~~

This was not intended to be a site specifically about living with illness, but it's about my life and unfortunately, living with illness is a significant part of that. These days I don't harp on about it as much as I used to because I assume you probably already now about the restrictions I live with every day. But just so's you know: I rarely leave the house. I cannot move round much physically and at the moment I pretty much live in an armchair. I make occasional forays out and about but not without consequences. My cognitive capacity is limited. Yes, I can be very articulate, but most of my energy goes into what you see in these pages. It's not like I'm off working a job, reading books, making things or even pottering around the house when I'm not here. Mostly I am restricted to sitting quietly and completing small, undemanding tasks between periods of rest. And that _is_ as boring as it sounds.


If illness freaks you out it's probably going to eclipse your awareness of my sparkling wit and charisma and you probably buggered off after the first ten words of this post. Yep. Of if you've stuck around, you're probably googling 'boobies' and trying not to think too hard about the vicissitudes of life and really, I can't blame you. I've got a boobies search open in another window even as I type, really.

Because sometimes I can't be bothered looking down.

Evil Mad Scientist Laboratories are turning me to the dark side. They are the ones that do DIY Cylon Eyes.

The Well Trained Mind. I'm not about to get into it (I have enough on my brain already), but the conversation was fascinating so I'm putting it here so I don't lose the reference.

Regina Holliday and her mural re-the American health care problem and her husband's death. It's a good looking piece of work, I'm hoping she (or someone) will produce a print of the actual mural.

Alexander Calder, kinetic sculpture. Wire sculptures. ArtGuy suggested I look at his stuff. Like this wire stuff especially.

At the moment, some very good things and some very bad things.

Certainly no doubt that I'm alive though.

~~~~

Mrsbrown was chatting about comfort yesterday. how we have rules and dieas about what's comfortable. And being an engineer she knows them: between 22 and 24 degrees, that sort of thing
But also how our idea of holiday is to go to places where we aren't comfortable - to the snow, to the tropics, that sort of thing.

Because inertia is not necessarily relaxing.

Selye wrote that an unstressed organism is a dead one, and divided stress into distress and eustress, the latter being positive stress. I've often thought we'd do well if we took this concept into regular usage.

I am not the only client my home-care worker has who doesn't want workers coming in when they have colds or influenza (or anything likely to be contagious). When you have chronic medical problems and you're sick to start with, and maybe you're on a truckload of things that effect your immune system, it's a reasonable request.

My home-care worker is recovering from a cold. A few days ago, when the cold was in full swing, she was supposed to visit a client who has also said she doesn't want contagious people coming in.

When she told her boss that she was unwell with a cold, her boss advised her to tell the client in question that she had hayfever. I believe she did not, and took time off instead.

~~~

I don't remember the outcome, but I also know she had trouble getting time off to get the Swine 'flu vaccine. Health care people like her are considered one of the most important groups to get vaccinated.

I am in a bind here. This sucks beyond belief but I do not want to get this woman in trouble. If I speak up, she'll be in for it. And *she* isn't the one behaving badly.

While I entirely appreciate that a court case is the best way of determining culpability, if you ever think I whine too much about quality of care for disabled people, consider the following.

An excerpt From The Age, November 3, 2009:

Four Charged Over Betts Killing

(I'm not including the details, they are distressing and not relevant to my gripe. Suffice to say it's a murder trial and this woman has been charged with being an accessory to murder.)

Godfrey in contrast was red-eyed and cried as she applied for bail, which was rejected.

Dressed in black and with a ponytail, she said she was not a flight risk and was due to start a new job today as a disability carer. She said she was filled with fear over what had happened. ''I did not say anything as I was too scared,'' she said.

The point being, that if you ever need a job where the employers won't care where you've been and don't care where you're going, you can get work with disabled people. Going into the homes of people who often live alone, are isolated and dependent on *you*.

And if I may be cynical for a moment, it has the added advantage that working with disabled people tends to get you brownie points if you do need to provide proof of good character/good prospects of rehabilitation at any point.

I know there's much more to the story than this, there may well be extenuating circumstances, but the care industry really needs an overhaul. A good employer will surely look for more than a criminal records check, which only provides information on convictions, before employing someone for this sort of work. I find it hard to believe that a reasonably conducted job interview would not have uncovered some anomalies in this woman's presentation of herself. If not her impending court case, a work record and CV that would have reflected what appears to have been a very erratic lifestyle.

Yep, overhaul needed.

Must


stop


drinking



coffee!

I'm now using LJ for linkage. Beats losing everything when the hard drive eventually crashes, no?

Kenya Remix!

And the original: here.

I could watch these for hours, it's quite frightening really.

Aaargh!

There are things that must be done!

Nevermind the frying brain!

Do!

Do!

Do!

Aaaaaaargh!


~~~~


*ahem*

Don't mind me. I'm doing fine, really.

From Saturday.

First I got arty, then I got crafty (felted slippers for the lovely hometime), and between those two points we went out for a drive.

( The Promised LJ-Cut )

As scarily avid readers may recall, I bought a beginner's hobby electronics kit a while back to see if it was fun. I'll be honest, it didn't really catch my imagination. (Of course, this doesn't mean it never will, just that it hasn't yet.)

The first project is all I've done thus far. It's a continuity indicator, which is a little thingy for testing whether the various components you've got lying about the place actually work properly. If they do, a little light lights up.

No doubt it's a handy thing to have if you play with electronics a lot, but I think as a newcomer my enthusiasm would have been better encouraged with a DIYCylon Jack O'Lantern, although I admit this might not be a beginner's project. (Especially since I'd want to improvise and make a Cylon Santa, since we don't do Hallowe'en round here. (In fact, we don't really do Christmas in a big way here either - but that's more of a sulky rebellion than anything, so a Cylon Santa at the door would be quite a la mode chez nous.)

But having said that, I was truly delighted today when tenbears wandered in to ask where it was, then wandered out again to where he was playing with sacred_chao, and sacred_chao used my continuity indicator to check the components of the car stereo!

Go me, and my useful hobby electronics kit!

In which I am amazed. This is Sacred_Chao pulling out the car stereo for the fiddling. My thingy is that blue thing next to it.

That little red thing is an LED. It has actually lit up, which shows that the thingy that this thingy was testing does actually work. Gosh.

Maybe I will continue, clearly I have a gift.

Jam jars from the back of the fridge. Soon they'll hit puberty.

I've now chucked them out.

When you lose loved ones, there are some things you should throw out before you've even had a chance to think. Otherwise it just gets too damn hard. Trust me on this.

Start with the homemade jam.

More pathos, anybody?

~~~

Tomorrow, with a bit of luck, it's boobies! I promise an lj-cut and no nipples.

Hilary Johnston's take on XMRV. She certainly makes clear the effect of the political stuff on human suffering pretty clear.

(Thanks braunie)

Like most of us, as far as XMRV goes, at this point I am 'watching with interest'.

These are from the weekend, but I got all distracted by the brothel and the facelips thing.

It's all the planning. Someone described one of my previous domestic interiors as looking like something from a magazine. While I could take this as a great compliment to my compositional skills, I now feel vaguely fraudulent and feel I should 'fess up.

( Yet more! )

Alas I dropped the ball for a couple of days this week, but here are today's piccies.

Local magpie. S/he sings to me regularly, especially at this time of year. I don't feed it often, but it does understand the concept and comes straight down when I whistle and put something on the front gate post.

( Two more )

Brothel Signage. While I can see that there's a slight bend in the middle and two slight bumps on the right, they do not convince me. Consider the length (they aren't pursed at all), the subtlety of the 'facial' bits, the lack of the implication of kissing that one usually expects with a lips based logo. Tilt your head and look at them sideways. These are definitely lips but not, as it were, FACElips. The fact that they're vertical with the brothel name down the middle really doesn't help.

So:

Poll #1472745 Facelips or not?
Open to: All, detailed results viewable to: All, participants: 26

Are these facelips or not facelips?

Facelips. Good word?

For yesterday and today.

Another view from the couch.

A close up view from the couch!

No photo today!

However, I'd just like to publicly thank 17catherines for recently advising me to marinade strawberries in a mix of equal parts sugar to red wine vinegar (or was it white...? I used red, anyway).

This was the perfect recipe for a gel who does not cook but does need to eat more fruit, because it's not really cooking at all. It's just sloshing things into a bowl and coming back an hour or so later to drain out the marinade and add ice cream, and it's not really fruit at all because it tastes nice.

Apparently it's even better with mascarpone cheese and those lattice biscuits. Hmm.

Remembering To Look. Mum gave this to me many, many years ago. She'd bought it in Hungary and it's been sitting on my chest of drawers, as a runner, for years. The good thing about doing A Photo A Day(ish) is that it's making me pay attention. As I was heading off to bed last night I stared at this beautiful pattern and realised I'd not properly appreciated either the pattern, the gift, or the history of the piece for a very long time.

Remembering To Look 2.

And in other news, the other day I was bemoaning someone who had failed to send me payment for some yarn I'd sent her (not as a formal sale through a sale site, just as a goodwill gesture to a fellow knitter - so it was my feelings that were hurt, not my wallet). I'm happy to say the money turned up today, so it seems she was just a tad disorganised.

My faith in humanity is not only restored but - since she *also* sent me five dollars more than we agreed on - somewhat improved. Improved enough that I decided to up the ante by donating it (plus five more dollars) to The Hamlin Fistula Relief and Aid Fund.

Today I freecycled my old non-working sewing machine. Every time I freecycle something I'm stunned at just how hassle free it turns out to be. You say what it is, someone puts their hand up, you leave it on the porch and it goes away.

I also planted seeds. There will be more seed planting this week if my body holds out. No drama if it doesn't - this is about my little 'cut and come again' garden for salad greens and such, which is trundling along quite nicely and can also be allowed to go fallow when it's all too much.

~~~

Yesterday we discovered a new cheapish Chinese place that looks promising, although I've now established I don't like the Westlake duck. Too sweet for my tastes, and don't even get me started on the pineapple. But they have an enticing list of things I've never tried before, so we will be going back.

~~~

This Wednesday I'm getting my carer to take some books and clothes to the Brotherhood, having established that their nearest drop-off point is actually really close by.

Other than that, I have only one proper appointment outside the house this week, what bliss! This actually makes socialising later in the week seem feasible.

~~~

The week before last I mailed some yarn to a person who contacted me through Ravelry. She agreed to pay postage and a token amount on top of that, but hasn't done so yet. She has not responded to a reminder email. She is in the phone book, but I figure people who are prepared to be so mean are probably quite used to being arseholes in real life as well, and she knows where I live as well. A lesson learnt.

~~~

I wish I lived closer to friends.

I also wish I could read more.

I want some more food from that Chines place for tea....

Pot.

Lilac. And at this point, I really wish I knew how to do more than 'point and shoot'. The actual colour of this is a magenta, almost burgundy, but as yet I don't know enough about my camera to get it to cooperate.