Yarn!

Yarn!
Originally uploaded by girl_of_bats

Yesterday was a nice day. Steve and I went to the Victoria Coffee House on Warwick Street for tea/coffee and scones, which was as lovely as it always is. Proper loose-leaf tea in a pot, proper coffee in a cafetiere, proper fresh warm irregularly-shaped scones with butter and clotted cream and jam... mmm. Also, wireless internets. We arrived just as the lunchtime busy-ness was easing off, which was nice.

A nice, slow afternoon involved playing some Kingdom Of Loathing, in which we're all eagerly anticipating the event of NS13. I would say we're preparing for it, except it's difficult to know how to prepare - a lot of goalposts are being shifted. I play with two characters, one who ascends regularly and tries out different character classes, and one who just gets really really powerful in one class - she's been going for a year but has only just ascended for the first time. I really enjoy exploring the game, and for NS13 I'm putting aside my current gameplay style and trying to get both my characters up to a respectable level so that (hopefully) I will be able to explore all the new content with relative ease.

I apologise that the above paragraph meant nothing to non-KOL-ers.

Anyway, yesterday evening was knitting group in Leamington. It was a nice evening and at first I hoped Steve and I could go on the bike, but then it occurred to me that although I'd be okay on the way there, getting back after sitting and knitting for a couple of hours would be beyond my capabilities. It was a shame because I think Steve has been kind of itching to get on the bike for several days now. Still, he's gone out on it today for a big-long-ride which will probably make him a happy bunny.

I have a really nice time at the knitting group. Everyone's so friendly and welcoming. Carie helped me pick out some colours for the pockets on my knitting needle case, which was really good of her because I think left to my own devices I would have given up and just ordered the exact colours suggested on the example photo on the pattern, even though I don't much like them (too much pink, not to mention a hurts-the-eyes green). Carie is really good at colours and likes choosing yarn study insulation. I've never been overwhelmed by my creative abilities, half the reason I chose knitting was because the instructions are right there, written down by someone else. But to be able to mull it over with the help of a friend was really enjoyable.

Click the picture to see the photo of the yarns we chose on my flickr stream, with notes.

Today I'm pretty shattered, after not just yesterday evening but also a rather energetic night during which I beat Steve up three times. I was dreaming about being chased and, unusually for me, being caught and having to fight off the vampire/grizzly bear/marshmallow blob/killer ants/etc. I've told him to just shove me back. He says he did. Oh well. I'll probably get used to the idea that I don't have the whole bed to myself just as soon as he takes me back home and I have a whole bed to myself again.

edited 14:20 to add tags

Good Things Come...

At Steve's at the moment. I woke up this morning at about 7:30am in quite a bit of pain, and also rather hungry. I spent half an hour stretching, rolled myself off the bed and wobbled out of the bedroom to the bathroom.

Mistake. It's suddenly got very cold. Our bedroom was warm enough - two warm people sleeping in it all night with the doors and windows closed will do that - but as soon as I opened the bedroom door, the chill hit me and my already sore, inadequately stretched muscles just slammed tense. My plans of morning-routine-ness dissolved, I went to the loo (*waves at people doing dodgy google searches*) and then back into bed as fast as I could.

In bed, and gently stretching to not much avail, I considered the options. I must take painkillers. To take painkillers, I must eat something. To eat something, I must go downstairs (this is the big benefit of the flat). To go downstairs, I will have to deal with the cold again, so I must put some clothes on. To put some clothes on, I need a certain amount of movement, of flexibility. I carried on stretching as best I could for about an hour, by which point things were as good as they were getting. Time to get dressed.

I got dressed carefully, which goes like this: Socks first, done sitting on the floor, and an outsize thick cotton t-shirt (easier than anything tight or anything with buttons), arms first, in front of me rather than in the air, and then gently over my head. Then sit on the edge of the bed, and dangle my pants from one hand while using the other hand to pull my leg up and hook my foot into the appropriate leg-hole. Repeat for the other side. Still sitting, attempt the same manoeuver for my jeans. Fail miserably. Fall off bed. Wrench already-sore back. Yelp. Steve wakes. Reassure Steve, and clamber back onto the bed, pause to get head together, and try again. Succeed. Half-roll along the edge of the bed to a standing position, supporting myself with hands on the bed. Stand properly, pull up pants and jeans. Deep breath. Check for mobile phone (in case of emergency) and painkillers and I'm good to go.

Dressed, the next task was to get down the stairs. There was no way I could safely walk it, so sliding down on my bum it was. Each stair I bumped down jarred my back and I had to stop three times before I reached the bottom. My walking stick and slippers were there waiting and I levered myself up without too much trouble, and on into the kitchen.

The first thing I did was flick on the heating. Then I got myself a glass of Innocent smoothie, my favourite strawberry and banana one. A glassfull contains 19 grapes, 10 strawberries, half a banana, and a squeeze of orange and lemon juice. That's got to be a couple of the five-a-day, and it tastes nice too. Highly recommended. To combat the health, I spread a slice of bread with Nutella, which I also recommend, and sat down to eat. Mostly this went well, until I dropped a piece of chocolate-smeared bread onto my jeans. Sticky side down, obviously. Still, it's easier to put jeans in the wash than to clean a carpet, so no harm done.

Thus fed, I swallowed the painkillers and wondered what came next - this was as far as my planning had got. I couldn't curl up on the sofa because of the chocolate spread on my jeans. I looked at the kettle, but although I really wanted a cuppa, I didn't like my chances for not pouring boiling water all over myself. My books and laptop and so on were all upstairs, so climbing it would have to be. Ouch. That is all. By the time I was halfway up, all ideas of laptops and books were gone from my head. I got to the top and lay on the carpet for a while, waiting for the throbbing to stop. Then I pushed off the jeans and crawled back into bed.

Steve is a wonderful, wonderful man. He was half-asleep still, but he wrapped me up in warmness and put lovely hot hands on the worst bits of pain, my neck and my back. The first stage of the painkillers began to take effect and I honestly felt that I was just going to evaporate away like a cloud of steam from a kettle (I still had that cuppa on my mind). All the cold and hard and struggle started to be slowly but surely replaced by warmth and soft and relaxy goodness. The pain was still extremely present, but it just didn't matter quite so much. Being "looked after" like that doesn't make me any less ill, but it makes it much easier for me to manage.

Of course, it couldn't last, it never does. After a while I simply HAD to start moving and stretching again. I don't want to wake him up, so I've come through here. But, I'm all happy in a haze of codiene and cuddles.

I reserve the right to come back and edit this post when I'm not quite so out of my tree.

Internet Addiction?

On May 9th I mentioned a number of half-written posts I had and asked which ones I should make into full posts. The answer seemed to be "all of them, why not?" so here's the first. I'm not entirely happy with it, but it's the most complete one of the lot, and I'm not having a great time for concentration at the moment so bah, it'll do.


While aimlessly reading through the BBC Magazine Monitor's "100 things we didn't know last year", I came across this article.

Apparently more than one in eight adults in the (US) study were internet addicts. Signs of addiction include:
- Finding it hard to stay away from the Internet for several days at a time
- Often staying online longer than intended
- Having seen a need "at some point" to cut down on Internet use
- Attempting to conceal Internet use
- Using the Internet to escape problems or "relieve negative mood"
- Relationships suffering from excessive Internet use

Lists like this cover most forms of addiction. Just read the list above substituting "alcohol" or "heroin" or "gambling" or "bingeing on chocolate" for "Internet".

For the record, I freely admit to finding it hard to stay away from the internet for more than a day or two, and I come online to "relieve negative mood" - it's something I enjoy doing, in the same way as I enjoy a nice bath, or a cuppa with a friend. I'm "online" most of the time, most days, but while the computer and msn and so on are "online" I'm quite probably curled up on the sofa snoozing, or filling out a form, or tidying up around the flat. I do my computer-stuff in many short bursts rather than one long stint. I've never tried to conceal my usage, and I'm pretty certain my relationships haven't suffered - quite the opposite! I'm hazy on the idea of "non-essential use". If I order groceries online because it's easier for me than going to a shop, is that essential or not? If Steve plays an online game for half an hour to relax after a crappy day at work, is his relaxation essential? Is reading the news essential? Is contact with long-distance relatives essential?

Even if we get an idea of what is essential use and what is non-essential, but reasonable use, we then still end up on the same old cycle of trying to figure out at which point the use is defined as an addiction. Where's the line that makes it a problem, or possibly even a pathology?

It may partly depend on what the activity is. I know many people who like to read books. They wouldn't want to spend several days without reading a book. They become immersed in a book at bedtime and then realise it's 4am and they've been reading much longer than intended. They have realised they have more books than shelf-space and decided to get rid of a few. They read books to "escape from reality" or because it relaxes them, or cheers them up. But no one would dream of telling them they are addicts, or that they have a problem, or that they must empty their houses of books and from now on they can only read road signs. You just don't do that with Reading Books. Is it reasonable to do it with Using the Internet? Writing diaries is another one. If Samuel Pepys was alive today and writing his memoirs in daily blog form, would he be castigated as an internet addict with "compulsive behaviour issues" as these researchers put it?

It also depends to what extent the activity is taken. For instance, it is normal, even desirable behaviour to keep one's home clean. I also know people who like to take pride in keeping their houses neat and clean. Rather than "oh no, housework, it's got to be done but I wish I didn't have to do it," they actually quite enjoy tidying a room, putting things in the proper places, polishing the surfaces, fluffing the cushions and looking at the results with a sense of deep satisfaction. Then there are those who feel distinctly uncomfortable in an untidy room - people who come to your house for a cup of tea and can't help themselves from lining up your remote controls in order of size on the coffee table, or even say "I'll just rinse my cup out," and then start washing up your breakfast things from that morning. And then there are those who compulsively and constantly deep-clean everything. A friend of mine got burns on her legs at someone's house because she hadn't been warned to wipe the bleach off the toilet seat before sitting down - the householder in question reapplied the bleach several times a day. Few people would argue a statement that this last example shows signs of a problem. But at which point along the spectrum does the "problem" status apply?

I think perhaps the line between a hobby or interest, and an addiction, is when it has a real impact on other people. I'm having trouble imagining someone shoplifting their food and mugging people so that they can pay their line rental or get another couple of gig of bandwidth... but I can, for instance, imagine a child with a full nappy and an empty bottle sticking their fingers in sockets while their parent is at the other end of the house having "just one more f5", so maybe internet addiction isn't such an outlandish concept.

Hopefully someone will prod me before I get too sucked in.

A very short post

This made me very, very, very happy.

What to write?

First, a knitting update. I haven't stopped, I've just not been doing anything I felt was worth blogging about. I'm working on a needle case (yeah, a knitted knitting needle case, slightly recursive) and although the pockets are all different and use all sorts of different stitches and techniques I haven't played with yet, all I've been doing for the last couple of weeks is the BIG outer panel, which is going to be something like 27inches square. I've done 25inches of it, I'm on my fourth hank of wool. But I have this horrifying feeling that I've misconstrued an instruction right way back by the start, like, four or five rows in, and that "work four more rows even" may have meant knit row, purl row, knit row, purl row, rather than knit row, knit row, knit row, knit row. I don't know. I remember asking the peoples at the knitting group what it meant but I can't remember exactly what whoever helped me said and I know that, especially when I'm tired, I have a tremendous capacity to get things wrong.

Not that it overly matters. All it means is that one of the foldovers will be a bit... ridged. The main part is perfect - all knits, purls, slips, increases and decreases present and correct. Plus, it's a bloody big piece of fabric that I can totally hold up in my hands and say "I made this".

Anyway, tomorrow I'll go see mum and she'll have a look at it for me.

Steve should be coming to see me at the weekend, although we don't yet know which day, or when, or how long for. It is probably very bad that, although most of my excitement is "yay! I'm going to see Steve and have ALL the hugs!" there is a bit of me that is really quite looking forwards to getting my hands on the yarn he picked up for me from Web of Wool.

Knitting-voodoo-based gibbering ends.

So, I have a lot of half-written non-knitting posts as notepad files on my lappie desktop, but I don't know what ones to finish and post. Mostly they're ones that I started while in the maximum grip of my painkillers - there's something about codiene that, for some unknown reason, makes me chatter. Total verbal diahorrea. Anyway, here's some bits, and if any of you think I should expand on any of them, tell me.

1. Internet Addiction. I started writing this one at New Year. There was an article I had read about internet addiction and in this post, I look at their "signs of addiction", think about how they apply to me, and also consider where the line should be drawn between a hobby and an addiction, and how that line varies depending on what exactly the activity is.

2. The Baby Thing. About how the change in my health and personal circumstances has led to a different perspective on my lifelong desire to have a family, and things I'm having to consider which wouldn't have occurred to me before - some of the potential problems, and some of the potential solutions. Disabled or otherwise, I still intend to raise a child.

3. When Naps Go Bad. For anyone who thinks they envy me for being able to lie around all day snoozing. A warts-and-all picture of what quite often happens to me when all I have done is sleep for an hour or so.

4. Where Did My Day Go? About trying to trim down your activity levels to the bare essentials, how to define "essential", and how it compares to a more typical lifestyle of someone who is not yet disabled.

The weather seems to have given me a bit of a knock so I haven't been about too much. I've been spending far more time than is healthy lying down, wide awake, feverish and full of painkillers, with my mind wandering.

The chain of thought started with Terry Pratchett's Hogfather, which was dramatised on SkyOne last Christmas and which I recently bought on DVD. From there we went to the Coca-Cola Christmas adverts.

I also started thinking about the type of adverts that take a well-known song, and then put their own lyrics on it, like this Weetabix advert.

The next stage was how in school, up until I was about 13, we had to sing hymns in assembly each day, as well as any amount of carol concerts. Lots of songs we sang had "alternative" lyrics. "While sheperds washed their socks by night", and "we three kings of orient are trying to light a rubber cigar", "good king Wenceslas looked out, on the Feast of Stephen, a snowball hit him on the snout and made it all uneven" and hundreds of others I'm sure you can remember.

And from THERE, final leap, I fell into a sort of half-sleep full of people in a church. A priest at the front burbling a sermon, congregation variously dozing, or fidgeting, or looking disapprovingly at those who were dozing or fidgeting. The bit where the priest says something and the congregation answer in a zombie monotone.
"May the Lord be with you"
"A n d a l s o w i t h y o u"
"Let us lift up our hearts"
"w e l i f t t h e m u p t o t h e L o r d"
(Catholic primary school, this crud is etched on my brain)
The organ plays a chord, people cough and shuffle to their feet. Upon which they launch into This Bloody Frosties Advert. Complete with jumping up and down.

My mind scares me sometimes.


Oh, and as this post has far too many YouTube links in it already, I may as well stick in another one. Ladies and gentlemen, I give you... Nintendo Opera.

Dagnabit

Two days!! Two blasted days of doing only the bare minimum - convenience food, minimal washing-up efforts, damn near militarised regular breaks and naps, resistance of an overwhelming compulsion to go shopping and the hell with the consequences...

Why? Well, Pip, the Littlun, and myself are all plan-free today, no doctor's appointments or playgroup or family commitments or anything. So earlier in the week, we thought, let's have a day out again, like last summer's trip to Banham Zoo.

Places we're considering include Pettitts Animal Adventure Park, or Fritton Lake, or perhaps Colchester Zoo. Of course, a day out like that requires us all to be well-rested. I have to be prepared to spend several hours solid "up and doing things", but it's poor Pip who really gets it in the shorts - pushing me in the wheelchair while carrying Littlun in the backback/chasing after Littlun on foot, plus all the driving while Littlun and I are likely to be zonked out asleep on the drive back, and possibly the drive there too.

I phoned Pip late yesterday afternoon and we agreed that the most likely plan was Pettitts. But I've just got up, bright and early, and it is GREY out there.

It's only 8am, so I'm hoping that the BBC weather is right and it's going to be mostly sunny with just a bit of (white) cloud, but seriously, Mary's Window Weather Report does not look promising.

On the bright side (well, the drizzly side), we do have Adventure Island nearby, and it's not school holidays so we should be alright there.

Oh, and I had the weirdest dreams last night... I was running around all different types of places (the flat, a stately home, a shop, a restaurant, all indoors though) painting "I am" statements on the wall with my Big Pot Of Paint and an enormous brush. You know, "I am happy" or "I am brunette" or "I am Steve's girlfriend", that sort of thing.

Update 8pm
We ended up with the master plan of going to the East Point Pavillion which houses a Tourist Information Centre, a small restaurant, and a big indoor play area. Pip took the Littlun into the play area while I collected up an assortment of leaflets for family days out - basically everything for the area that wasn't a stately home, museum, or other obviously non-two-year-old-friendly venue.

I couldn't really participate a great deal, unfortunately. The Pavillion has three floors. The ground floor contains the Tourist Information, the restaurant, the kitchens, and the loos, as well as the baby soft-play area and a couple of ball-pools where the big slides finish. Then the entirety of the first AND second floors are more of the main playground. Pip got a good workout - Littlun is at that awkward size where he's definitely too big for the baby area, but too small to manage some of the larger obstacles, and too adventurous to stay within eyesight of the adult seating, but too young for Pip to be able to just leave him to it completely while we sit on the ground floor with a cuppa. Still, the place was practically empty, and the three of us had a wonderful fight in the ball-pool. After about an hour Littlun was quite worn out, so we went and got some Unlucky Fried Chicken for lunch and then back to their house for a nap.

Not quite the day out we had hoped for, but a good day nevertheless. And now I'm shattered.

New Doctor - a follow up

A while ago I mentioned my concerns about how I am renewing my Disability Living Allowance (DLA) and they want a report from my GP, but my GP is on maternity leave, so the GP's report will be filled in by a locum.

Unhappily, it seems that my fears were not completely unfounded.

Today was the day that Dr M (the locum) had asked me to come in for a double appointment so that she could fill in her part of the form. I went into her office, exchanged greetings, asked how she was, and sat down, just like always. She scrolled through my notes on the computer for a brief moment - perhaps five seconds by the clock - and then scrawled across the first box, the one asking what my illness is... "Anxiety and depression".

Sure, I sometimes get a bit anxious. I sometimes get a bit depressed. But not clinically so. I was given a low dose of antidepressant in the early stages of my illness. I did feel, and tell my GP I was feeling, both anxious and depressed about the new limitations on my way of life. She told me she was prescribing the antidepressant to cushion the blow of losing my job/hobbies/lifestyle, and because "sometimes it helps with ME. It doesn't hurt to try." In time I came to terms with things, and I've now come off the antidepressants, best part of a year ago, perfectly successfully - an opinion my real GP, Dr W, shares. If she felt I required treatment for anxiety or depression, she would refer me for it and I would attend it. I have absolute confidence in Dr W to do stuff like that.

I try not to swear on this blog, but with all that in mind, where the shuddering FUCK does this new girl get off, casually writing an inaccurate, or at best, incomplete diagnosis across a form that has a big impact on my life?

Dr M then cheerfully moved on to the next part of the form, that asks about any specialists I see. Asking me, but looking at the computer notes, she saw that I went to the specialist ME/CFS clinic at one of the local hospitals, and that there is a report from Dr Terry Mitchell, an expert in the field. Only when she saw that Dr Mitchell himself had seen me, assessed me, and confirmed in writing and in so many words that I *do* have ME/CFS and *don't* have depression, did she go back and add "CFS" to the box on the form asking for my diagnoses. However, it's in small writing, tucked underneath the large central "anxiety and depression", which hasn't been crossed out.

From then on, the consultation felt like some kind of horrible parody. She spoke too quickly, confused the hell out of me, and I couldn't get my words in the right order or quick enough to stop her. She was looking at the form muttering "washing, feeding, [unintelligible], getting dressed, no, you don't have any problems with those..." and I only just managed to say in time "yes I do!" - she looked like she was going to cross through the box. A little later, she stated "I can't imagine you have any trouble being aware of danger," and I told her to tell that to the friends who keep having to pull me back from the road because I'm concentrating so hard on walking that I forget to pay attention to traffic. It was all going too fast, I didn't get a chance to describe any of my symptoms properly or adequately explain any of the problems I have.

I'm fairly sure my mobility is part of that form. It was Dr W who first suggested to me that I should get a wheelchair and a mobility scooter - Dr M, however, doesn't even know I have them or the difference they make to my life, and she certainly didn't ask me anything about what walking is like for me.

I'm fairly sure that equipment I use is part of that form. Dr W has spent time discussing with me all sorts of tips and equipment for remembering medication and managing stuff, but Dr M has assumed I'm automagically fine with it all.

I'm fairly sure that my care needs are part of that form. Dr W knows the extent of care and support I get from my family and friends, because she's my family GP. Dr M was filling out the form murmuring things like "you're pretty much independent then, yes..."

Dr W lets me bloody well finish a sentence. Dr M starts writing my answers in before I've opened my mouth.

After just under ten minutes of this gobsmacking whirlwind of misapprehensions (oh, looks like we didn't need a double appointment after all), Dr M squiggled her signature on the form and clipped it back together. God knows what she's written on it. It should get faxed to the DWP late today or some time tomorrow (so I'll call them in a week or so to make sure it's definitely been recieved, as they're notorious for "losing" documents). Then she made it entirely, bluntly clear that the consultation was over, and even seemed impatient with me struggling to stand - although I may have imagined that, as I was feeling pretty overwhelmed by then.

As I waited outside the surgery for a taxi home, the headmuddle resolved itself first into worry (oh no, her report will be completely different to what I've said on my forms because I didn't explain myself properly) and then into anger (godammit, her report will be completely different from the actual truth because she wouldn't listen to me or read the notes properly).

By the time I got home, I'd got the anger into annoyedness (gah, her report will be significantly different to what Dr W would have written) and worked out a plan. I've called the DWP, explained the situation, and asked what we could do. The call-taker asked if I wanted to request that they ignore the report, but I said no (because I understand that she's attaching Dr Mitchell's report from the CFS clinic, and that IS worth a read to anyone assessing me). But she put a note on my file, and read it back to me to confirm it, to the effect that I have "raised concerns" about my GP's report being from a locum, rather than the GP who manages my illness, and that I do not feel the locum is fully informed or understanding of my condition.

I'm knackered, so sorry that this wasn't my best ever post. I'm also a bit concerned that if my application is turned down on the basis of Dr M's assumptions, I don't know how I'll manage to see through an appeal. I really could have done without this. I don't think I'm the illest person on earth and I have no desire to play the system, but I would like the doctor I see to listen to me, and I want to receive the benefits I am reasonably entitled to.

Blogging Against Disablism Day

Today is Blogging Against Disablism Day. I wanted to write something for it, unfortunately I just haven't been able to. Even when my mind's been clear, I've been seriously lacking in ideas.

But, if you go and have a look, there are posts coming in about all sorts of disability issues.

I also really, really recommend that if you only click one link today it is this one, a post from last year by Lady Bracknell's Editor. It's not very long but explains something very important.

Walking Stick?

There's a restaurant here that I like to go to. It's quiet, they do lovely food, have generally good service, aren't stupidly expensive, and manage to be family-friendly while not being a kiddie restaurant. The layout is of lots of different "rooms", up and down various flights of stairs, but they've made the effort with accessibility - the main entrance and bar (and the toilets) are ground-floor and totally accessible, and a combination of Stannah stairlifts and ramps/level access fire escapes mean that while a wheelchair user can't access every table in the place, they can use most of them. Usually they ask if I can manage the stairs and make an effort to seat us at a table with as few stairs to contend with as possible. Yesterday, Pip had a few hours without the Littlun, so we decided to go there for a spot of lunch.

Mary and Pip enter the restaurant, and approach the reception desk.

PIP: Good afternoon, could we have a table for two, please?

The waitress stands in silence for a few seconds, staring at Mary and Pip in utter shock or possibly disbelief, before turning and running off up the stairs.

PIP: Was it something I said?
MARY: Maybe "table for two" has become a slang term for something unspeakable.
PIP: (peeking up the stairs) I hope she's okay.

Enter the waitress, slowly making her way down the stairs with much trepidation. She stares at Mary and Pip in silence.

PIP: Is everything alright?

The waitress continues to stand silently. Mary and Pip start looking about for another staff member, to alert them that their colleague may be unwell.

WAITRESS: (slowly, pointing) Walking stick!
(pause)
MARY: (baffled) Yes, yes it is.
WAITRESS: (pointing) Out there. Fire door.
MARY: Excuse me?
WAITRESS: Stairs!
PIP: You want us to go in the fire door out there?
The waitress nods and without waiting for a response, runs off up the stairs. Mary and Pip exchange a glance, shrug, and make their way back outside, round to the fire door, which is open, and into the restaurant, where the waitress is beaming proudly by a table with two menus on it.

Strangely - or perhaps not - once we were seated, the waitress had a full and complete grasp of conversational English, albeit with a lifelong Suffolk accent.

Knitting and the Unholy Experiment

making a stitch, one
Originally uploaded by girl_of_bats.

The last few days have been mostly taken up with knitting activity. This has had two main facets - the Group, and the Unholy Experiment.

The Unholy Experiment was Steve's idea (go on, you can all act surprised now). We were having a Lazy Monday, with no plans to go out or to do anything particularly energetic, partly so I could be ready for Active Tuesday (which turned out a lot more active than I'd imagined). He was fidgeting with small screwdrivers while printing off some study notes, and I was curled up knitting.

Him: Would it be possible to knit on screwdrivers?
Me: I don't see why not.
Him: How geeky would that be, knitting on screwdrivers! X, Y and Z would be so jealous!
Me: (taking screwdrivers) It would be tricky, but definitely possible... hmmm... go grab the orange yarn.

Click on the picture to go to my flickr stream and see more process photographs.

I am pleased to confirm that yes, knitting with screwdrivers is perfectly possible.

We used one Phillips-head and one flat-head, but it would be easier with two Phillips-head screwdrivers. The main problem we encountered was that the screwdrivers are not of a uniform diameter - there's the thin black bit which is just shy of 3mm (US size 3), then the smooth silver bit is 4.5mm (US size 7) and the ridged silver bit, as well as being ridged (gaa) is 5mm (US size 8). We could have overcome this by using larger screwdrivers with handles, but I feel that the weight of the handles would have made knitting even trickier and dropping/fumbling one of them and thus losing stitches even more of a possibility. The second difficulty was avoiding tearing the yarn with the sharp bits. The third problem was that while knitting needles are made to slide comfortably against each other, these scrape. It's not as pleasant a knitting sensation as normal needles offer.

They're going to come and take me away soon, so moving swiftly on, Active Tuesday.

Someone on flickr had recommended Web Of Wool as being "the best knitting shop in Leamington" so I decided I had to try and find it and that Tuesday would be a good day to do this.

53 Regent Grove, Holly Walk. I didn't know Regent Grove but Holly Walk is where Social Services and the Jobcentre and all that sort of thing are. I decided Regent Grove must be some sort of house-name (it's that sort of area). I figured a wool shop would be easy enough to spot, and set off.

Alas, Regent Grove is NOT a house, but a street which then morphs into Holly Walk. Alas also, Web Of Wool not only looks very much like a residential house from outside, but is next to a florist, which is bright and colourful and very "there" in the way that florists are, and it's near a corner. Because of the arrangement of dropped kerbs and crossings, I didn't go all the way along that strip of pavement - I looked along registering "hotel, florist, couple of regular houses" and then started scanning the pavement for my next crossing point.

After two and a half laps of Holly Walk I decided the hell with it and wandered into one of the businesses to see if their receptionist could offer a clue. She directed me to what appeared to be a tailor's shop, and thankfully they were able to tell me that Web of Wool was "next to the florist's over there".

About half an hour of poddling about on the scooter, I wasn't disappointed. Web Of Wool turned out to be as nice and relaxing and friendly a shop as you could wish for. The lovely Anna helped me look for a pattern that might be good, helped me pick some yarn for the project I chose to do, and also told me about their knitting group, which is on Tuesday evenings.

So after a rest at home, Steve drove me back into town and I attended my first ever knitting group. It was great! Since leaving work, I've become really unused to sitting in a room with several other people. But everyone was really welcoming, and while I couldn't participate much in discussions, it was nice listening to other people chat rather than reading it off a screen. The knitters were helpful when I ran into trouble with reading my pattern (it still looks like a cat jumped on the keyboard to me) or wanted to check something. It took a lot out of me, which was a foregone conclusion. But I took away several email addresses, and I feel that I'll be welcome to join them again next time I'm in Leamington, and hopefully I'll be able to make a couple of friends over here. Not next week though, as tomorrow I'm going back home.

Steve came to collect me and we went to get something to eat at a nice, quiet place. To be honest, we could have gone to the Ritz or McDonalds and I wouldn't have noticed the difference, I was so shattered. But definitely happy.

New Doctor

Firstly, after the bout of knitting woes, things started going better again. I now have a blue swatch of ribbing and am part-way through a blue swatch of seed stitch (aka moss stitch). I think this is my favourite so far to look at and feel, but it does seem to take a bit longer to get to the end of the row.

Secondly, I've had a letter from the Disability Living Allowance people, explaining that they have received my claim renewal, and want to write to my GP for more information. That's pretty normal and nothing to worry about. After all, it'd be a bit pointless if they didn't check with at least one medically qualified person.

When I first applied, just under two years ago, I was quite pleased to hear that they would contact my GP. Dr W has known me and my family since I was a kiddie. She saw my childhood illnesses, my mum's long-term health problems, my marriage and subsequent divorce, my teenage smear-test scare. She's the person who diagnosed me with The Lurgy. She knows me well enough to know I'm not the sort of person who would be trying it on. She knows the sort of lifestyle I had before I got ill, and how it compares to the activity levels I have now. I could not think of a non-family person better placed to give the DWP useful, in-depth and accurate information about my health.

She is also, currently, on maternity leave.

I have seen Dr M, the locum who is covering for her, twice. Both times were follow-ups regarding an ear infection I had a while back. She was very nice, efficient, and gave the impression that she knew what she was talking about. Unfortunately my ear infection had sweet buggerall to do with my Long Term Lurgy, unless you count that I've had as many, if not more, visible "oozy" acute infections (yum) in the last couple of years since I got ill, than I had in the fifteen years before.

So, when I saw her about the ear thing, I mentioned that I was working on a DLA renewal and that they might want Dr W's input, which may fall to her. She smiled and said this had already happened with one of Dr W's patients - what she would like to do is make a long appointment with me once they contact her, and we can go through her part of the form then.

No problem, right?

Uh...

My diagnosis label is "ME/CFS". In non-medical terms that means "we don't know". There are three main schools of thought. One is that people with ME/CFS have a psychiatric problem - that the reason we experience the physical symptoms is because of some past uncovered trauma, or low self-esteem, or stress issues. Sort of like a panic attack, only instead of the physical manifestation of our mental issues being shivering and trouble breathing and pounding pulse, we get the pain and whatnot, and instead of it being for a few minutes at a time, it's more or less constant. Another viewpoint is that people with ME/CFS have a biological problem that medical science doesn't have a conclusive test or cure for yet. Medical research from the biological viewpoint is ongoing but underfunded - after all, ME isn't a spectacular illness with a high death rate. The other widely held opinion is that people with ME/CFS are making it all up, for fun/attention/time off work. Thankfully this is more rife among the general public than the medical profession.

I do not know which of these theories Dr M subscribes to.

Dr W can confidently feel certain I'm not malingering, because she has known me for many years. How to convince Dr M, who I've known for all of fifteen minutes, that I'm not a workshy scumbag?

Similarly, I know that if Dr W thought my problems were psychiatric, she would have immediately referred me for whatever flavour of psychiatric help she deemed most appropriate. As such, on my original DLA forms, the minor mental health trouble I had were listed as a secondary effect of my illness - in other words, that I got bouts of depression and mood swings because I lost my job/was unable to go out like I used to/got frustrated by my physical limitations/was in a large amount of pain. But what if, this time, Dr M puts it all in as "mental health"? Will they consider my illness to have changed, and would I get into trouble for that?

Or even if Dr M accepts that I'm not making it up and am psychiatrically sound, how do I properly describe the effects my illness has on me without sounding like a whinger? When I'm meeting people, particularly if I don't know them well, I try to be positive and upbeat, try to make a good impression. I'm full of painkillers and if the illness comes up I say things like "the hourly pay sucks but the parking's great" or "meh, it's only a bit of pain, it's not actually going to kill me". What the DLA people need to know about are the bits I don't like people to see - about the pain that is so bad it reduces me to tears, the dizziness that makes me vomit, the lack of dexterity that makes me drop my plate of dinner all over myself and the floor. See, you can hear those violins already. So how do I give a clear picture without giving a bad impression?

Look Ma, No Stitches

It's not been a great 24 hours for the knitting efforts.

I've mostly being working on the basic garter stitch scarf Mk II which is coming along slowly but surely.

However, yesterday I got my new knitting book - Stitch 'n Bitch by Debbie Stoller - so I picked up my test piece to have a bit of an experimenty.

As the knitters in the audience will be aware, a piece that is just stocking stitch tends to curl in on itself, so I had the bright idea of doing a few rows of normal basic garter stitch before embarking on anything else. I could probably do garter stitch in my sleep by now.

This confidence may be the reason why the needles leapt from my hands, pulling several stitches off themselves, which promptly undid, due to me tightening my grip on the yarn as the needles dropped. I tried to kind of slide them back on but it just wasn't happening.

A few choice curses later, while I ripped the swatch apart, and I figured, hey, it was only a test piece, no biggie. So I cast on again to start trying to do what I was planning to do - some ribbing. Cast on, did some rows, rested, did some rows, showed it to Steve, who agreed it was coming out right. Marvellous. I thought about getting up to grab the camera and take a picture, but decided that instead I'd go to bed and then in the morning, try to make a square of it and then cast off.

Two rows into the morning, I'd somehow acquired an extra stitch (probably from not putting the wool to the front/to the back correctly) and was getting in one hell of a snarl-up where the yarn was unravelling and I think I must have shoved the needle through the yarn rather than through the stitch. I tried to undo it but with limited success, and just as I thought I'd got it, out plopped the right-hand needle again, taking the yarn with it.

This was the point at which I threw the needles.

I just don't get it. It's wrapping string around a stick, for pity's sake, how hard can it be? Also - how come I never stuffed up like this while doing the first scarf, the first casting on, the first zillion rows of garter stitch?

Anyway, I've cast on again, with the now rather battered blue wool, and I've done about eight rows of ribbing. Again. If it cocks up this time I'm going to cut the yarn and try again with a non-wibbly length. Or get stabby with the knitting needles, either's good.

Lovely Day (and Twitter)

Another church
Originally uploaded by girl_of_bats.

As I'm at Steve's at the moment, and the weather is getting warmer, we've wiped down and charged up the scooter and today I took it out.

I had planned to simply trundle off to Asda, and get some milk and whatnot for the weekend. It's a nice enough little trundle and has the added bonus of being productive.

However, Steve convinced me that it would be a better idea for me to go into town, maybe go to the park, have an ice cream, that kind of thing. I didn't take much convincing - it's just been far too gorgeous a day to waste.

So off I trundled into town. After a bit, Steve got on the motorbike and came to meet me for lunch at the Victoria Coffee House, and then we went for a walk in the park, Jephson Gardens. It's easy to control the scooter with one hand, so we were able to hold hands like any other couple - because it's nice, rather than for support. I think a few people wondered why he was holding a motorbike helmet though.

Regrettably I had to turn down Steve's offer of taking me out for dinner tonight, but nevertheless, he went and got some takeaway and we've had a wonderfully relaxing evening in. Ahhh.

In other news, I've started playing with Twitter. I'm not entirely sure how to find people on it, I think you need to exchange email addresses first so that one of you can send the other an invite? but really I am a long way from certain about that. If you use Twitter and you want to be added to my friends, post a comment containing your email address. I'll then invite you, but won't publish your comment, so your email address won't be shown to the world from here.

(edited to add tags)

Haute Cuisine

This evening for dinner Steve and I cooked pork chops, mash, and bacon. The idea is that I'm the one who knows how to cook stuff, but he's the one who's able to safely get stuff out of the oven, or turn off the gas and sort things out if I start fitting or if I collapse, that kind of thing. So it's a team effort, but he tends to regard it as me cooking.

So anyway, this meal. There are a number of cooking things I regularly cheat with to save time, energy or washing up - instant gravy, pre-peeled/chopped veg, that sort of thing - and this meal was no exception. The mash was Smash, and the bacon was pre-diced. He mixed the Smash, I fried the bacon, we mixed the two together, huzzah.

The pork chops, however, I did from scratch the way my mum used to, with a certain amount of various seasonings, an eggy-breadcrumby coating, pan-fried and then baked for a while covered over with foil. Obviously mine are never as good as my mum's, but then nothing is as good as your own mother's home cooking. They're perfectly passable though and might well fool the casual observer.

We sat down to eat, and as he often does, Steve started enthusing about the meal. "Mmmm, this is fantastic. Thankyou darling, this is gorgeous. We must never feed my dad this, he wouldn't want to leave," and so on. Of course, I asked what it was in particular he liked, for future reference... of course, he was on about the bacon-y Smash.

Still Here

My levels of energy, pain and ability to concentrate have been all over the place the last few days and I don't know if I'm coming or going half the time. However, I am happy to announce that the knitting continues to go well. Having finished the scarf for Dominocat, I started looking for another project. A look for basic knitting patterns or learner's patterns online revealed that I could (a) make another 6ft of garter-stitch scarf or (b) attempt to decipher a "pattern" which looked like someone had randomly squashed their hand onto their keyboard, and after decipheration, involved such voodoo concepts as "cabling" and "ribbing" which I have no concept of.

This led to a bit of "oh my god, I'll never be able to do this..." but that was over pretty quickly as with the help of the lovely Jiva, I determined my plan of action thusly:
(a) get a book about learning to knit, and follow its handy instructions bit by bit until on top of basic stitches.
and
(b) cast on another scarf with some wool I already had, to give me something to work on and that I would be able to pick up and know I could do it easily, even when frustrated at the learning-bits going difficult-ly.

(forgive my vocabulary today. It's all there somewhere.)

So, I'm working on it, I have nailed garter stitch aka knit stitch, and also purling, and also stocking stitch where you knit stitch a row and then purl stitch a row. Next in my handy book is increasing and decreasing the number of stitches on a row, which should be entertaining. And then that's it for the book.

God knows what happens next.

Activity, cost, and Spoon Theory

One of the trickiest things to keep on top of is calculating the costs of each activity I do, prioritising the activity, and figuring out if I can do it or not.

The beginning and end of the spectrum is easy. There is "rest", which is lying down or sitting very comfortably, in a warm, safe and quiet place, with my eyes shut and no distractions. It may or may not involve actually falling asleep, but the important aspect is making the time as uneventful as possible for both my brain and my body. Rest helps me slowly gain some energy.

At the other end is "impossible activity". A few years ago it was perfectly feasible for me to rollerblade along the seafront with an ice-cream in one hand and be chatting on my mobile phone in the other. These days, I simply do not have the capacity to do that, which is something I've come to terms with. It was fun, but hardly a life skill.

The bits between "rest" and "impossible" are tricky though, and they vary for every person with ME/CFS and similar illnesses. For everything I do, I have to think about how much it will cost me, and whether that will prevent me from doing something else that may be more important or more enjoyable.

Let's take reading as an example. I've enjoyed reading from a very early age and it used to be one of my top things to do to relax. Now I can't read any whole book at one sitting any more, fair enough, but there's more to it than that. These days, reading isn't just reading.
Low-cost: Reading a book from my personal collection which I have read many, many times before.
Medium-cost: Reading a book I have not read before, but by an author I am familiar with and whose style of writing flows well for me.
High-cost: Reading a book by an author who is new to me.
Near-impossible: Reading a non-fiction book which requires the reader to keep up with concepts that may be new to them. For instance, I've had The Science Of Discworld for about a year and I am still less than halfway through it.

The same sort of thing applies to everything I do during a day, fun or not, essential or not, productive or not. It applies to getting up and having a bath and getting dressed and washing my dishes and buying a pint of milk, and it also applies to knitting, using the computer, shopping (yes, even online), watching a TV programme, cooking, seeing friends, chatting on the phone or playing a game.

Some people have the idea that anyone who is off work long-term must be sitting around all day doing the sort of thing they would love to do if only they weren't at work. It's not the case. Not only would I need to be having a good day to attempt half the "day off" things I used to, but as soon as we've factored in stuff like housework, forms for several different benefits, and family commitments, it's an almighty mess.

The best explanation I have ever encountered for this is Spoon Theory. I really recomend you click that link, but if you don't want to, here's the summary:

People with illnesses like mine start each day with a limited number of energy credits, represented by a handful of spoons. Some days it's a good day and you have more spoons than usual (although still not as many as a healthy person might) and some days it's a bad day and you've only got half the spoons you're used to having. Doing things costs you spoons. Resting may make you a spoon or two if you're lucky, but it's not guaranteed. If you spend all your spoons by lunchtime then that's just tough if there's something else you want or need to do later in the day.

Physically do this. Get your handful of spoons (or pens, or knitting needles, or whatever - just one handful though!) and go through your day. Waking up and forcing yourself out of bed? Spoon. Having a bath? Spoon. Washing your hair as well? Another spoon. Getting dressed? Spoon.

Of course, this is what happens to healthy people when they get a bad cold or something. They drag themselves into work wearing an unironed shirt and brushed but not styled hair, get frustrated because they can see that they are performing at a level of less than 100% and are making mistakes, go home, and collapse into bed with a cup of lemsip and some takeaway food. And that's okay, because for a week while you have a cold, you can let things slide - the washing up doesn't HAVE to all be done every day, you can catch up on the laundry when you feel a bit better, your friends will understand that you've had to cancel on a planned get-together, you'll absorb the £5 charge for late payment of a bill in order to not have to worry about getting to the bank this week.

Chronic illness is different. You can't simply skip the vacuuming for three years. Your friends will stop inviting and including you if you never join in, and as a human being you need some social contact. The clean clothes in your wardrobe will all be used up after a few weeks. If you don't get yourself into town, go to the bank and pay your bills, you go past Final Demands and bank charges and into the realms of baliffs at the door. You have to stay on top of everything that needs doing.

So you have to get on, and calculate every activity every day. You have to balance and you have to decide if the fact you have no fresh clothes to wear is more or less important than the fact your cups and dishes have almost invented the wheel. You have to decide whether to read a few pages of a new, interesting book, or to read a familiar book and thus be able to chat to someone on the phone for 15 minutes. You have to be able to tell your friends that you don't have the time or energy to see them, because you've got to use all of that day's spoons on eating three basic meals and filling in a couple more pages on a poxy horrible benefits form.

I can deal with the pain, and I can deal with injuring myself when I fall over, and I can deal with the poor sleep and nausea and fits and all these physical things. But I have real trouble keeping positive while dealing with the constant comparing and choosing and juggling and never being able to forget for even a day about being ill.

And THEN some bugger tells you that you'd feel ever so much better if you just went jogging for an hour each morning... I think that's another post though.

Comic Relief

I never thought Tony Blair would make me smile, but...



Also, if you like blogs, you'll probably enjoy this book, with all profits going to Comic Relief.

Halfway there

halfway there
Originally uploaded by girl_of_bats.

As you can see in the picture, the scarf is coming along nicely - I am now about 10 or 15 rows into the second ball of wool.

Thanks to everyone who gave me advice about changing over from the end of the 1st ball of wool to the beginning of the 2nd. The knot is nowhere near as distressingly huge as I feared, and the advice to just knit a couple of rows with the 2nd ball before securing the knot was good - it's pretty inobtrusive. I do, however, need to find out what the best thing is to do with those end-y-bits, as a scarf "pattern" this simple doesn't really have a Wrong Side where I can hide them. Should I snip them off, or sew them into the edges, or across the width of the scarf, or what?

I'm also open to suggestions about what I should try to knit next...

(edited 6th April to add tags.)

In which I am an Unethical Cowbag

I've just lied my arse off about the nature of my disability to a couple of salespeople and I feel really very guilty about having done it, so I thought I'd confess to The Internet (iGod isn't as satisfying as it once was).

I was coming up for my next dose of painkillers when there was a tap at the flat door. So I hauled myself up to answer it. Two people, a man and a woman, in suits, were standing there. We got as far as "Hi, you're Mary, yes? I'm Mark and this is..." before my legs gave way and I slid halfway down the wall. And it's impressive that I lasted that long.

There's then a short piece of confusion. The man asked me if I should be sitting down and I agreed and then somehow we were all in my flat. I remember inviting them to sit down because that's what you do when people are in your flat, and then everyone standing in confusion because there were three of us and only one seat available (the others being taken up with my laptop, and the cutlery tray from the kitchen drawer that broke a couple of weeks back - really must get that fixed). They told me to sit down, which I happily did, and as my head got back on track the man knelt on the floor by the sofa and asked if I was okay.

Then they introduced themselves again and that is when I realised they were salespeople. My first thought was "how come there are salespeople inside my flat?" followed by "oh bums. Salespeople aren't going to leave until they've got my signature on something. I can't stand up, so I can't shoo them out, and I don't have the oomph right now to be terribly over-assertive..."

As they opened their spiel I couldn't think of anything apart from how to get them to Go Away. I don't care if I could save up to 10% a month on my electricity bills. A direct debit goes out every month to cover my electricity, and if I'm paying a couple of quid more than I absolutely need to, well, that's the price I pay for not having to muck about and try to understand deals and shift suppliers and adjust payments and so on, and the state my brain is in that's a price worth paying for things to carry on smoothly. I was trying to work out how to explain this to them when it hit me that this might, after all, be a way out.

"Can I cut you off for a moment?" I said. "As you can see, I'm in a bit of a state. I have long-term cognitive difficulties so I'm not going to be able to take in half of what you say." So far so true. Then the lies spilled forth. "I can't sign anything, but if you can leave me, like, a leaflet or something, then I can discuss it next time I see my advocate and take it from there." That's tosh. I don't have an advocate, unless you count my mum. I'm perfectly capable of signing things and I don't have any alternate signatorys on my bank account or anything like that. And even if I did, I very much doubt I would waste an advocate's time trying to change electricity suppliers.

It worked. The young man told me they didn't have any leaflets, but if I could show him my last electricity bill, he could write on it exactly what the difference would be so that I could show "my advocate". As it happened, my latest electricity bill was lying on the table, so I gave it to him and he wrote down his phone number (a regular mobile phone number, which I found odd) and the price comparisons between my current supplier and their company. They said I should tell my advocate that with my current supplier I was getting the worst deal possible and that it was really quite important to sort it out. After a bit more of this, to make sure the message had sunk in, they left, thank god, and I locked the flat door behind them.

I really hate playing the disability card and I'm really bothered about having lied. I phoned Steve, but he was more upset about me having let them into the flat in the first place, which is understandable, but it's not like they'd come to rape, mug and murder me. What bugs me most is that not only did I use my disability as an excuse, but I also painted myself as being less capable than I actually am. I think I had a good reason, and it's not something I intend to make a habit of, but I feel very unhappy to have done it at all.