Wednesday, May 30, 2007


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

Monday, May 28, 2007

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.

Friday, May 18, 2007

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.

Thursday, May 17, 2007

A very short post

This made me very, very, very happy.

Wednesday, May 09, 2007

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.

Tuesday, May 08, 2007

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.

Friday, May 04, 2007


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.

Tuesday, May 01, 2007

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

Blogging Against Disablism Day, May 1st 2007

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.