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. :-)

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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.

Friggin' bloody cow noises and pooh socks.

No internet today. It has mysteriously started up again sometime in the last couple of hours but it's a bit late now, I need my sleep and I'm being a good noodle and determined to get it.

Friggin' stupid thing. Never liked it anyway.

Nnnngggggg..

If I'm not back soon, avenge my death, will you?

Ta

xx

I appear to have proper internet again!

(You didn't even notice I was gone, did you? Well *I* noticed, and mighty peeved about it I was too.)

Anyways, I'm off to bed now but expect more of me soon.

On a day in which I'm more or less at this level I could, theoretically, walk to a tram stop, get on a tram, travel for a bit. Cross road, get on return tram, come home and lie down.

I'm not going to do it in the middle of an influenza epidemic, but soon.

My last tram ride anywhere was a bit of a bust. Not entirely a bust on account of Kind Strangers (TM) helping me to a seat, but that in itself should tell you something about how things were. That was about a year ago I think.

~~~

I've just showered, dressed and checked letterbox so now I'm floppy. Laundry and walk on hold for now.

Both yesterday and today, have found myself sitting here thinking "um okay, what do I do now?"

A good sign, but let's not read too much into it. Yesterday I was thinking that for hours, but was in fact unable to concentrate and focus and was overloaded and unable to screen out sounds and sights and all the rest. Eventually I got settled enough to think sensibly for a minute (thanks largely to 10B coming home and us having a debrief about how we both are), whereupon I decided to take some diazepam, after which I was able to focus (it's all a bit weird but it works). It enabled me to stop flapping round: instead I tidied some stuff off my chest of drawers, then 10B and I went to the supermarket and the library and all was right with the world.

Admittedly, once we got home from the supermarket, 10B did need to ask if I could please stop trying to clean the fridge and sit down for a bit because he could see what was coming if I did not. So I did stop, and that was okay.

Today I have found myself wondering what to do but I don't feel hyped and overloaded - this is a good sign. I feel both clear headed and physically okay. I have decided to do things that one does when one isn't too sick to do them, like hey, shower and get dressed! Then I'm going to put some clothes in the washing machine! And if I'm still feeling physically okay I'm going to walk to the post office and back.

And it being Thursday, I've reduced my prednisolone dose. I am now down to 15mgs.

My arms are killing me.

There will be no more knitting until they aren't. And no more consumption of codeine so I can keep going in spite of pain. (Yeah good one Splozza. You know that trick never works).

And then I'm going to have to be a truckload more careful about it. Pace myself and take regular breaks and stop _before_ things start hurting.

You'd really think that I'd already do this, wouldn't you?

Mumph.

Anyway. I'll be fine in a day or three and I think I've learnt my lesson. And stating it here, and mentioning how stupid I've been about it, is hopefully going to encourage me not to keep being stupid.

A brief but worthwhile article about cognitive dysfunction and how it effects people with ME/CFS.

Most useful for friends and relatives. If you have ME/CFS it's probably a bit too complicated and/or old news, so you're excused.

Includes a nice illustration of the type of strategies we end up employing to manage better with our particular version of cognitive dysfunction.


It's all in a nutshell and won't take long, so if you're interested in understanding ME/CFS, please have a read.

Thanks to rickybuchanan for digging it out for me.

I have started a new beanie. It's in two colours (some stranding, some intarsia). I have limited experience of stranded colour knitting and zero of intarsia so it should be fun. Possibly the wrong kind of fun, but fun all the same.

And I now consider myself to have 'started' even before I can point at something and say 'here it is in progress', because doing 10 rows and ripping back because it isn't right yet is still progress.

Earlier this week I also tentatively restarted work on the lace shawl of doooom and put the first ever fitted item of clothing I've ever worked on back into the hamper for a while, still unfinished, where it can calm down and think about what it's done. There's another knitting project I've been quietly working on but you'll know about it if and when I feel like it has succeeded.

Point is, there's movement in woolly terms at least. I was going to say 'creative' but it's all about learning techniques and following patterns. No matter how much I like what I'm doing, the level of creativity comes down to how many decisions I make within the confines of the technique/pattern I'm following. And I'm not making many decisions yet, I'm following instructions and seeing what happens.

Well that's one way of looking at it anyway. Other time I figure it's down to the fact that I am putting it together, and that's intrinsically creative.

I am loving the way I learn when I knit. The way I move from going on faith, when I do something because the author knows what they're doing but I make endless mistakes, to the point where the penny drops - usually because I've done something wrong five times in a row - and I finally understand properly how something works and what the instructions mean.

This is the point where I find I know where I am in a pattern by looking at the work rather than by constant reference to the written instructions and where I start to change things to suit my own prerences. Where I can see what I'm doing and even if it's still someone else's creativity that I'm bringing into reality, I'm really enjoying doing so and thanking them for it.

A sense of comprehension is hard to come by these days, you have no idea how good it feels when it hits. Clarity, it's beautiful.

~~~

Yeah I should probably go to bed.

~~~

P.S.: I'm back to add more good things to the Good Things Basket.

Here's some just about today:

Today I read a chapter of a book. And took notes, because it's that sort of book. I also took some photos of the yard, admired a honking great pot that 10B bought home for me (we <3 rubbish removal, we <3 it sooo much), and spoke to Ricky on the phone.

So, memo to self: there may be some nasty shit out there, but today was a nice day.

Every so often I wander into LJ without logging in first. I can see why people get crapped off with the ads.

I'm feeling a bit meh.

I think I'm burnt out from the illness thing. (No, really?) Burnt out from the business of having, always, to explain deficits that I'd rather not admit to having. Deficits that make me feel ashamed.

And the fact that I have to explain them, show them - that's weird. I'd far rather be able to move along in life without mentioning them. But they're so hard for anyone else to see, that if I don't describe them I can't move at all because they cripple me. I need for people to understand them.

But then, I've reached the point now where it's been so long that maybe it doesn't matter if people think I'm just some weirdo hermit, someone with Personality Disorder Not Otherwise Specified. (aka: Not Quite Right). Trouble is, that only works when you're able to function within whatever the limits are at the time - the moment you need more support you're screwed.

Today I knitted a ram horn.


*blinks*

I'm assuming Kim Jong-Il is on his last legs or dead drunk or something.

And determined to go out with a bang.

A Jonestown the size of a nation. Except that he'll be paying out on other countries first.

Is there any idea as to who his deputies are? Who does take over when he goes? Slightly less crazy and biding their time...? Or has he been too successful in weeding out the non-sheep?

I just had a sherbet fountain. You know, the cardboard tube full of sherbet with a piece of liquorice sticking out. You use the liquorice as a straw to suck out the contents.

Has anyone ever had one of these that works the way it's supposed to?

All my life: the recurrent, wearying disappointment of sherbet that never fountains.






Alas!

On Tuesday I will drop down from 30 to 25 mgs of prednisolone. The mood swings are getting a bit intense, so I'm certainly looking forward to this.

Today, for the first time since we moved in here over a decade ago, I cleaned a window. Might do another one sometime.

And today I was doing a bit of thinking about my bathtub and goldfish and water plants in general. This is something I've been meaning to give proper thought to for a while. But what I thought was a contained little project has, needless to say, turned into a multi-headed hydra.

I have plans, people! Plans!

Soduku too hard.

Books are over there.

I am over here, under cat.

Telekinesis would be really handy right now.

~~~

Actually, I suspect it would always be handy. Unless I had some specific reason to want someone do something for me, because then they'd probably just say "oh shut up and use your telekinisis, you fucking control freak" or something like that, and I'd be forced to make their head explode.

I'm having one of those 'interested in everything' spells. I really should go to bed, so tomorrow I can be interested in yum cha.

If I *did* do the snail farming thing, I could have the letter "S" as my logo and I'd do my snail deliveries in a little sports car with an S on the side so everyone would see me zooooom past in my car and they would say

"Hey! Look at that S car go!"





It's an oldie but a goodie.

And for all of that, I'm actually feeling kidn of cranky. The last few days I've felt blah, but happy enough because I was still enjoying the good spell that had preceded it.

I was definitely feeling like I *ought* to have been better by today but I still feel like arse, so now I'm feeling hard done by again.

Buggrit.

I might just go back to daydreaming about a backyard full of yummy protein sources.

I think I may have alarmed 10B. We'd once again been pondering the possibility of keeping chooks, something which is really up to him since he's the one that would be doing all the work (don't ask me how my goldfish are going, I really don't know).

It inspired me to do some idle surfing on the topic of quails because they are tiny and bloody delicious. Big Alison had already gagged at the idea - she reckons they're smelly and messy and not much use for anything else - and the interweb permaculture types seem to say the same thing. Good eating, but not much else. And they fly. (A number of people prefer guinea-pigs, which I find fascinating because I haven't seen many recipes around. Still a bit too left-field I guess). So then I wandered off to look at other backyard critters. I pondered aquaponics for a bit, then remembered that I haven't counted my goldfish for a couple of days and moved on to snails.

Of course, by now I'm not just thinking in terms of my own stomach (especially since I've not yet managed to make the leap to snail-as-food), but doing that thing you do where you imagine yourself a wealthy woman, selling boutique snails to gourmet chefs throughout the town and occasionally being cheerfully eccentric yet also charismatic on lifestyle and cooking shows. (Actually, that stage had started a lot earlier but someone in an old thread about quails had seriously quashed any idea that there was money to be made in backyard breeding for the gourmet market and I still have issues with the guinea pigs.).

But when he got home and I told him my idea he gave me A Look and said no and went to have a cigarette. Well. He said he won't stop *me* from doing it...but he's not going to help out either.

I can't find the link now but I'm sure I saw something about a franchise system. They set you up with all the info and stud snails you need, and buy the snails that you farm.

Okay. I guess it won't ever happen. And I'm guessing it's a market that could get rather easily flooded. Kind of like the ostrich bubble we had a few years ago. And the llama bubble, and the alpaca one too. And I do remember hearing that alpaca speculation was so out of hand and alpacas worth (temporarily) so much money that people were having to keep them indoors overnight lest they be stolen. In this respect snails would be less hassle, but I think I would become phobic very quickly if I had to actually sleep with them.

~~~

I had another day out on Sunday, which was jolly and fun. Had an unexpected dinner guest last night too, and interesting conversation.

Not surprisingly, yesterday I felt quite done for and today I'm muzzy headed as well as physically pretty stiff and slow.

But all things considered, I'm rather quite pleased.

My goals for today are back to the basics: I need to pill the cat and wash out my CPAP gear. Mum-In-Law is popping in later so at some point I'll be putting the kettle on and making us a cuppa. Anything more than this is a bonus and only gets done in between lie downs.

There may also be ponderous and wandering LJ entries that do not entirely make sense, with bonus mispelt homonyms.

Life is good.

Well I'm converted. We just went to the local farmer's market. I've been ragging it since I first read about it in the local paper, what with there not being any farms within an hour and a half's drive of this place, but that was mostly just sour grapes because it's only on until 1PM and I haven't been well enough to get there.

BAck in the late 70's the "craft" market movement started on the urban/rural fringe and my family loved it. It was basically the same thing with more emphasis on craft. But not so much of the lame hand-painted clothes pegs, more of the serious cottage industry craft. Also plants and plenty of small food producers selling allegedly organic vegies through to cakes and olive oil and goat's cheese. And the markets we went to, down on the Peninsula, are still going strong and very much part of the local landscape.

So the markets are spreading again, now rebranded, although I have noticed it is mostly about food now. I assume there's a group/business that basically scouts around for cheap land hire and notifies it's members/shareholders and away they go. Low overheads, very sensible.

And by the looks of things, the 70's dream of the cottage industry really does work for a lot of people - they've found their niche through these outlets.

Suburbs like ours aren't set up for smallholders. We have the big supermarkets which end up sucking us all in whether we want them to or not, and smaller places that just can't compete. Just last night I was buying manky vegies from the ones who claim to be 'The Fresh Food People' and who should be done for false advertising and who have everything wrapped in plastic just in case you were feeling good about not using plastic bags, and who *really don't* have much of anything I actually want. Choice is minimal.

I doubt we've ever had dedicated market space in this area. But unfortunately, this also means our local farmer's market is not a bargain and never will be. This isn't Preston - everything here is all very boutique. You want bargains, you go to the supermarket where it won't be a bargain, but it won't blow the budget either. But you won't get to choose between bargain cheeses.

So it turns out our local farmer's market has a nice collection of stuff you won't get in the supermarket, including some specialty butchers which I'm hoping 10B will peruse next time.

I still wish we had a decent real market but yay for a bit more choice in what we buy.

And I bought rose and cardamom lassi. :-) Let's face it, I like this stuff and I don't care (and don't need) to be buying at rock bottom prices.

~~~

We also stopped by at the local garden club's street stall. A nice collection of deranged, (mostly) older women, maybe two about my age, so I got a membership leaflet. I coudln't help noticing they all seemed to laugh easily. Meeting older women like that always makes me regret I never joined a (nearby suburb's) Womens' Pipe and Drumming Band when I was healthy. It was advertised locally for years, and I suspect it would have brimming over with cheerful old nutjobs with bagpipes and no respect for council by-laws about noise.

Role models are important throughout life, I feel.

Yes, I bought a few plants. And a chocolate cake, since they happenned to have one.

~~~

I do seem to have done a lot of walking and going out these last few days don't I? Best put the tiara on and take it easy for the rest of today. I hope to go out tomorrow to sprawl in the living room of sjkasabi and MLM and feel hard done by and bitter because a bunch of people are off having a harvest festival/cooking day today, and in spite of my pleading I bet the good stuff will have all been consumed because our so-called friends are greedy pigs.

Still, the change of living room might be nice. And 10B will be in armour, with his trusty rattan sword, so maybe he can hit people for me.