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.
So the Russians are oppressing the people once again!

I can't abandon Livejournal now.

But I will use this space in the meantime. Maybe the Russian bloggers could come here too?
is b0rked.

Today's revelation: banana and bacon pizza. Oh yes.

Also, on the way home I had I think only the second or third taxi driver I've had in the last...ten years...listening to 3PBS.

Which is sad because PBS is awesome.

He didn't believe it was around when I was a teenager though.

If anyone's interested, I'm selling a taxi cheap. Also spare human body parts to the highest bidder. Pick up only-harvest on collection. Fresh!

~~~
It's always a shock when you run up against someone with no conscience.
Email from substitute case manager today:

Hi [Splodge],

How are you going?

I didn't reply when ***** told me about your email as I knew she was looking after it.

I prefer phone call before emails. Please know that I am not always able to check my emails and I would hate to have something important waiting for my return. Please know that we have **** of course and a worker on phone duty when the case manager or me as a locum is away.

I hope you are well,

[Case manager]


Reply:

Hi [Case Manager].

No worries re-***.

Whether or not it's feasible for me to use the telephone depends on my capacity at any given time, chronic illness has effected my ability to be really flexible in how I communicate with other people. Indeed, without this method of communication I would be up the creek without a paddle. But I will bear your preferences in mind.

Regards

[Splodge].
Does anyone know anything about this mob? I'm guessing this is one of those well known scams I keep failing to read about.

WEB.INFOMANIAK.C 7 CAROUGE
120.00 EUR
INCL OVERSEAS TXN FEE 4.76 AUD

That's $A163.26

Nothing else looks weird. One other transaction on that day was on my card.

It was incurred on July 13, processed on July 15, on 10B's card. He only ever uses that card for the local supermarkets, one recurring payment and rarely on the internet, and it appear to be an internet payment.

I'm putting in a disputed transaction form, and I guess that card was going to go anyway(I'm the primary account holder and it's a shared acount), but we're still shuffling stuff and working stuff out, so it's not exactly good timing.

And we'd rather like to know how it happened!
I don't know why, but when sending a parcel internationally I feel compelled to write the address with a black texta in extra large letters. It's something to do with the image in my mind of my little parcel traversing the world, tramp steamer after tramp steamer, needing to look important enough never to be lost or left behind when exotic people in foreign lands unload the ship, pick up my little parcel and think about which ship it should go on next.

~~~

It seems I also feel compelled to speak extra loudly and clearly when calling internationally (somewhat redundant since the reception is *perfectly fine* these days), and to mention I'm all the way away in Melbourne, Australia (um, who cares?). And it seems I *still* have a hard time not gushing and getting excited about how it's winter here and nearly bedtime, wow we're talking from the opposite sides of the world OMG, et cetera.

~~~

In other news, I have a busy couple of days ahead but today wasn't a bad day, so I'm not too worried.

Also, as the prednisolone dose drops, so does my face. No really - the puffiness is easing a bit so I'm deflating a bit and I'm not sure that a deflating neck/face is any better than a puffy one. It's like the difference between a cheerful birthday balloon and the same balloon a week later. Dearie me.
So not me, alas.

I am the sort of person who always looks rumpled.

It's a shame, I'd totally rather be like Lady Penelope or maybe Audrey Hepburn, but rumpled is my fate.

Fortunately TigerCat always looks like she needs ironing so at least we match.
Quick link about possum yarn:

Merino possum

At this point, you should probably know that the possum is a introduced pest in New Zealand, and causes terrible environmental damage. Which is why they have a possum fur and yarn industry and we don't have one here. Over here, possums are protected, and if anything, are on the back foot due to the predations of domestic pets and the constant expanding of suburbia. It's all about context.
I could be the most healthiest person int he world right now, but there's still no way I'd be going anywhere in this weather.

It's fucking freezing out there!

And wet.

Heaters are working overtime, curtains closed and drafts stoppered whenever I locate them.

~~

I've got to say that possum yarn kicks bottom. It really does. I'm wearing a beanie of possum yarn (knitted by moi) and a kind-of-poncho-capey thing that Mum-In-Law bought back from New Zealand and is possum+merino which I'm never going to take it off again. Nosiree, not ever.

(It's very cosy, is what I'm saying. I recommend it.)
Go me and my magic thinking powers. I just sat the extremly noisy pump for the fishtank just outside the almost closed window. Improvement, definitely.

The real lightbulb moment for this CFS brain was realising I did not have to do this with the window that is currently nailed shut (thus requiring that window to be unnailed and fitted with a lock). No really. I had to realise that. D'uh.

And last night I set up the switch box for the DVD and TB drive. And rerouted stuff so sound goes through the stereo, which turns out was really easy to work out. I just have to wait until my brain says 'oh, okay, that's easy!'.

~~~

So from time to time, I talk about getting rid of Mum's desk. I don't have to anymore.

It's gone to the auction house, replaced by a set of Ikea shelves which I hate to say it, are a damn sight more useful. Or will be once things are put in them. My brain is still readjusting and a lot of spoons are going on getting used to this and working out where things should go. Which means I'm sitting here a lot and staring at stuff. Occasionally I am calling on 10B to push stuff here and there. Often I am reminding myself that I don't need to do everything in a day.

It's all part of the process of streamlining and decluttering so I can get more stuff done in the long run.

~~~~

At the moment I keep seeing insulting, horrible words about people on 'welfare' (we used to call it "social security"). Ouch.Did I just get kicked in the head again? Why yes, I think I did. Must be budget time.
I was going to open this by using a week as the time frame.

But it's only five days.

In the last five days I have had three (3) health care professionals demonstrate complete and utter ignorance of Chronic Fatigue Syndrome. Particularly regarding severity. Two of these are people I have had quite a bit to do with. Fortunately in both these cases I was able to provide a spot of professional development that was appropriate to the situation.

For free of course. Too bad no one will pay me for it.

(Please don't pipe up and helpfully suggest I *could* get paid and maybe it's something I could do. If I could have, I would have. If I ever can, maybe I will. I'm not stupid or lacking in initiative and motivation to do useful stuff...all available spoons are in use.)

You might be able to guess, by the stuff in parentheses that one of these encounters was of the 'could you maybe work part-time...?' and then when being reminded of severity getting a 'so what do you do all day then?' response.

Answers, btw:
1. No, I cannot work part time (and don't you fucking think that I would already be doing that if I could? What kind of person do you think I am? Do you think I'm a HOUSEWIFE? Do you think 10B and I are some sort of weird throwbacks to a mostly imagined past in which wifey stays home dusting the trinkets and making dinner for her man because it's his job to earn the bread and her job to dust....?).

2. I spend most of my time looking at the walls because I am too ill(zonked, foggy, fluey, confused, physically exhausted) to do anything specific. Then I try and do something, usually a small task by most peoples' standards, then I rest some more until I can do something else.

If I'm less task focussed, I tend to aimlessly fiddle and wander and sit (rinse and repeat). So in order to get the most out of life, I have become a very organised, task focussed person.

So, for example, 20 minutes reading light fiction will be preceded by half an hour sitting in the reading chair with a cup of tea, staring at the room because my brain can't get out of neutral, possibly with an interlude while I walk to the kitchen and back, having totally forgotten what I went there for. Then I read. It's nice. I might even read for a while. But I cannot read all day. No really, I can't. It will take me all day to digest what I've just read anyway. So as the brain slows down again, I stare at something else for a bit. So 20 minutes reading can take maybe 100 minutes of actual time.

I really do spend a lot of time just staring at stuff. I know this is hard for you to comprehend, I only comprehend it because it actually happens to me. And even then, only because it happens all the time. I don't really believe it can possibly be like this, but it is.

/rant
Mother's Day is definitely one of those days that leaves me feeling like a bit of a freak when I see what goes on for other people.

Mum did not like Mother's Day and did not encourage it. I think she thought of it as a stupid commercially driven holiday and possibly a bit patronising.

And I am not a mum.

I don't know what Mum-In-Law thinks about it, and I never will because she's not one for giving opinions on anything like this.

*twiddles thumbs*

Did I mention I watched part one of 'Moby Dick' tonight?
Oh bugger.

I should know better than to read up on anything, even classics which theoretically are still good reads even after you know how they end. It would have been more fun if I didn't know what was coming.

*slaps forehead*

Still, turns out I wasn't the first one to notice a metaphor or two.

I may yet read the book, and I'll definitely watch the second part. Actually, I'll definitely read the book because this is a heavily truncated version and apparently the book is full of loads of stuff about life on whaling boats, which all of a sudden I find fascinating.


They all seem like such nice people...
Yes, you fool, he is just here for the females, not out looking for you. And now he's going off his own way.

Life isn't out to get you, you just got in the way.

But your boat is kind of irritating and will be smashed if you keep trying to poke me with it.
What are we hunting?

Well, technically a whale, but more of a metaphor.

It certainly looks like one.

What? A whale?

Yes, that too.
This is your captain speaking. Now we are far enough away from shore I feel it is reasonable to tell you that I am batshit insane. You came for one kind of journey but guess what? I am on another one and I am the Captain.

Holy fucksocks.

"We hunt to live, not live to hunt."

"Vengence on a dumb animal...? Sounds blasphemous to me."

but he pulls them all in anyway. It's a bit hard to argue against a cult.

~~~

It's rather awesome how this comes from a man who initially presents as kind of reasonable albeit having a bit of a hangup about that leg business, but is really on a mission to prove dominance over nature. He doesn't see God in nature anymore. Or maybe he does, but he's out to get the bastard. He's a very troubled Ahab.
CAPILLARY ACTION!
CAPILLARY ACTION!
CAPILLARY ACTION!


Many thanks to [livejournal.com profile] feonixrift.



(And also to my beloved [livejournal.com profile] tenbears who wishes me to point out, clearly and loudly, that he had, in fact, said "capillary action" prior to my last LJ post but I had forgotten. And this is true. I never claimed otherwise. But it was some time before and I'd forgotten again.)
Want to see Tutankhamen Exhibition and Eugene von Guerard. Von Guerard was unfashionable when I was at school, for not being of the Heidelberg School/true-blue Aussie. I have more to say on this matter sometime. And Tutankhamen - why the hell not?

Want to be able to see properly again. Whenever I go out that I realise how bad my vision is. Each eye seems to have a different type of problem. Add to that my slow processing speed and easy fatigueability and you have one very confused and useless Splozza. And that's just at the supermarket, in the tinned fish aisle. Possibly tinned fish, anyway. It was definitely the supermarket.

Last time I looked anyway.

Want to not doze off...I think it's working.
A local councillor, who runs a garden centre, has successfully convinced his fellow councillors to close the local free much service.

Why yes, it was recently relocated to a site near a school - by the council that just closed it. And after it was deemed to be safe anyway.

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