We're starting to laugh at this now (well, I am), but The Girl and I have just had one hell of a twenty-four hours...

We had somehow managed to fit in getting me to church, having lunch with a friend of hers and then going to see my baby niece (aww, Flo), even though neither of us was feeling very good - migraines abound in this house at the moment - if one of us doesn't have one, the other will. Anyway, we had been at my sister's (in Reading - an hour-and-a-half's drive away) for a while and were thinking about heading home, when TG started going funny colours. She suggested that we got out of there quick as she was having signs of a bad tummy bug. We set off, and made it five minutes down the road - where, fortunately, there was a hotel - before there was puking in the car park of a very nice establishment. We persuaded them to give us a room - they weren't keen on the idea, for some reason - which was fortunate, as she needed to be near a toilet for the next sixteen hours.

On account of not getting much sleep (although I got a lot more than TG did), I woke up at quarter to nine this morning and realised I really wasn't going to make it into work for 9.30, especially since TG was still very unwell, and I wasn't feeling great. (But work is a whole other issue that I may ask for advice on sometime. It is not going all that well. Hmph.) So I called in sick - third time in two months. I then rang NHS Direct, who gave us the excellent advice of giving TG some Migraleve, the anti-nausea ingredient allowing her to drive us home before she was bedridden again. Neither of us is likely to be leaving bed again today, which is a bit of a problem as I told my PA not to come (on account of how we weren't at home) - the flat looks like a bomb hit it, I doubt we're going to get any dinner, and it's taking all my energy just to make sure we both have enough water. If I could be bothered to explain things to my flatmate I'm sure she'd help, but I seriously don't feel up to talking, TG even less so. Tomorrow I have a care review from my social worker (ha ha - at least he'll see what things look like around here when it all goes very wrong), followed by a visit from the community physiotherapist who is assessing me for crutches etc (because I really can't walk anywhere at the moment. At least I can give them a solid reason *why* now. Might help). I may be too tired for either. We shall see.

Some better things that have gone on recently:
- At my Disability Living Allowance tribunal I was awarded higher rate care, and my higher rate mobility was confirmed. This was something of a shock which I am still getting over, but I'm awfully pleased. The back-pay will go a long way towards helping me to afford to do a course next year. (I'm thinking of doing an MA - yes, another one - in either Equality and Diversity or Disability Studies. In Leeds, where they do these things. It's something I've wanted to do since about 1997 but never got round to. And it's not like I'm interrupting a stunning career at the moment, or anything.)
- I have a fabulous new wheelchair. She is called Luna (we went through about seven Harry Potter names before settling on that). I can't use her completely independently, but because she's very good (and was quite expensive), I can get a lot further in her than I thought I'd be able to in a manual. The terrible evil that is Access to Work bought her for me. I'm still trying to decide if that makes up for the ongoing, utterly appalling levels of stress that organization is putting me through. I'm not sure.

Does anyone on my f-list know of anyone who might want to help me out next week while my PA is on holiday? (I, being deathly afraid of care agencies after the last time, have not bothered to register with one. Hmm.) There are eight hours of work available over as many days, and it's quite straightforward stuff like helping me with shopping. £10 an hour (negotiable if I get desperate. Heh).

Right, I'll stop rambling now.

Of course, now that I'm off the bus and it's two hours later, I can think of many ways to respond to the woman who had a loud, very rude argument with me (mostly *at* me) because I asked her to move her baby's buggy so I could put my wheelchair in the wheelchair space (there's a reason they don't call it the buggy space - I can't think what that reason might be). This is about the third time this has happened to me this week, and I hardly ever go on buses in my chair (I wonder why not). I was particularly amused by her "Where would you like me to put it?" question. I should have asked her where she'd like me to put my wheelchair. (Silly me, of course, I can put it on the luggage shelf and go about my business.) I should also have told her that a) I'd been volunteering in a school where I'd been helping dyslexic seven-year-olds with their reading (although I'm sure her shopping trip in Hampstead was equally important), b) that this bus was my absolute only way home (as much as I'd like to take my chair on the tube, there's those pesky 117 stairs down for me to meet a squishy fate at the end of), and c) goodness me, do those notices say GIVE UP THIS AREA FOR A WHEELCHAIR USER? I think they just might. You see, some of us can read signs. It's a skill some nice volunteer teaching assistant would have taught you in school if someone like you hadn't kept her from getting on her bus.

I can't believe she actually argued me off the bus. And that the driver took no notice when I asked for his help. Fuckers. Still, we've complained to the bus company, and told that they will be taking the complaint very seriously and that a line manager will get back to us once they've worked out who the idiot driver was. So that's something.

*breathe*

In other news, I am getting very involved with my garden. I have transformed slightly altered it, with the help of my elderly garden-competition-winning neighbours (and occasional assistance from The Girl and The P.A.), so that it now looks a bit less like something that came straight off the set of Lost. Some of my plants may be dying, but as a complete beginner I feel that I would have failed to live up to expectations if I didn't kill a few flowers. Photos to follow when the sun comes out again. If it ever does.

There is an appeal up at the Great London Trek. We have made over £600 for the Fibromyalgia Association UK. This is fab. We want more money. Donate donate donate!

Thank you. :)

The campaign is beginning to go well. We have potential (small-scale) media interest. But with just over two weeks to go, we need to step things up a gear. Anyone who can tell anyone about the Trek and why Sharon is doing it (see the website for details), please do so! Mention it on posting boards, e-mail your friends, comment here to ask me for a sponsor form, get all your friends to sponsor us, or sponsor us yourself! If you don't want to use the website to donate, you can e-mail Sharon at gavroche2000@hotmail.com and she'll arrange for you to donate any amount that you choose.

Remember: FMA-UK is a tiny organization. They are a very small voice challenging the bizarre state of affairs in this country, where the medical profession here is being very slow to accept that this condition is real and causes severe impairment. They need support in this effort.

We are also campaigning for better access to London's streets and amenities, something that is starting to get us noticed a very little bit. More updates on that to follow...

Donate at the website now! Tell everyone you know! Thank you!

In today's exciting instalment of The Blog, I discuss jumping through hoops to get the support I need, from DLA to social services. It's fascinating. No, really...

It's not *quite* fully up-and-running yet, but since it should be this afternoon or early tomorrow, I'll let you guys know before I tell the rest of the world: http://www.greatlondontrek.com ... The Girl's sponsored walk gets off the ground. Go and see. :)

It's been made abundantly clear to me that there are people 'out there' who think I focus overly on the negative, or something similar, and who do not want to read my rants about pain, symptoms and disability.

In response to this, a public post to make something VERY clear.

If you 'friend' me, you accept my posts about MY life. This journal is for no one's benefit except my own. I will not censor, sanitize or play nice, nor will I pretend life is anything other than it is. Things have never been a bundle of laughs for me. I don't pretend that they are. If you don't like this, go the fuck away.

Furthermore, if your attitudes are not helpful for me - i.e. if you express sentiments that I believe compromise my right to equality, understanding or acceptance in society - then I can choose not to read your journal. Your choices do not have to be my choices.

Comments have been screened, so say what you want. Tell me to take you off my friends list, if you'd like. Or take me off yours. As for me, I will continue to be myself and to be as honest as I always was. My life has been turned upside down in the last few months, and is currently fairly close to unbearably difficult. Under the circumstances, I think I'm being insanely positive. But that's just my view. If you'd like to pretend that none of this is the case, I can continue chatting to you on MSN or over e-mail about rubbish - I just won't include you in my discussions about real life. Let me know if you'd like to be taken off my friends list.

All posts after this will be friends-only.

And the fight for equality goes on.


Blessed are the poor in spirit, for theirs is the kingdom of heaven. - Matthew 5:3

If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. - 1 Corinthians 12:26

He who walks with the wise grows wise, but a companion of fools suffers harm. - Proverbs 13:20

Why are you at my side?
How can I be any use to you now?
Give me a chance and I'll let you see how
Nothing has changed
Deep in my heart I'm concealing
Things that I'm longing to say
Scared to confess how I'm feeling
Frightened you'll slip away...
from 'Evita'

So now I don't know whether I should go out with my mum tonight. I told her I would, as she has no one else to go out with, but I wish I hadn't. I can't deal with it, and I have so much work to do. Hmm.

I want to watch the Buffy episodes that my friend brought over for me, but I feel like I need to work first and see them as a reward if I finish everything I've got to do (which I'm never going to). Where am I going to fit five hours' worth of epsiodes into this week? I desperately want to see them before I go back, as I can only watch them on my dad's computer because mine doesn't have enough memory to load the software. Hmmm...

I'm having a 'why am I putting myself through this?' day. There is no way I can do enough work to teach decent lessons in the first part of this term. I don't know what I'm doing. Why am I not training for a nice quiet job where I don't feel this stressed every day???

I'm going to read Antony and Cleo in the bath and try to relax.

New 'article' up at Phrenetic. I was bored and wanted to lighten up about it. Plus, I'm seeing the positive side of things. Yay me. :-D

More articles to follow - I'm thinking about disclosure of disability and social anxiety disorder. Just need to get my thoughts in order and into html.

I like the angels in the Christmas story. I think it's fantastic that a massive gang of heavenly beings was there to proclaim the birth of Christ. In honour of which:

Angels from the realms of glory,
Wing your flight o’er all the earth;
Ye who sang creation’s story
Now proclaim Messiah’s birth.

Come and worship, come and worship
Worship Christ, the newborn King.

Sages, leave your contemplations,
Brighter visions beam afar;
Seek the great Desire of nations;
Ye have seen His natal star.

Come and worship, come and worship
Worship Christ, the newborn King.

Ended up going to church on my own last night. I'm so glad I did. It was so contemplative and peaceful; lots of things became clear to me, particularly when we sang that carol. God's in charge. Peace on earth; goodwill toward men... It's not so much a promise as a command.

Have a brilliant Christmas, everyone. Special love and prayers to people who are finding Christmas difficult this year. I'm off to eat.

My dad is so funny. He tried to make me watch 'White Christmas' and I refused and came out here to play until something better is on. We're going to church at 11.15, only a) he's almost completely lost his voice (it's going to be a quiet Christmas) and b) he keeps forgetting - he just asked me if I'd mind if he changed into his robe. He's a strange man. I reminded him, and suggested that he might not be quite up to joining me, but he's insisting on coming along. That's dedication, and from a non-Christian and everything. :-)

We went to see my grandmother this afternoon. She lives in a care home, but she's fairly sprightly - she just has long-term mental health problems that mean she can't look after herself. She was on form tonight. She was in the middle of saying something when she moved seamlessly into instructing us not to look at "that man" who was walking along the corridor outside the room we were in. Apparently we weren't to attract his attention because he's deathly boring and she didn't want him to start talking to us. Brilliant. She's so prejudiced, though. I suppose it's an age thing. "I admire Elton John as a musician, but I don't like his type." "His type?" "Homosexuals. Though admittedly they're not all bad. Your grandfather and I once stayed in a hotel which was run by two of those, and one had impeccable manners." Hee! Then she quoted Leviticus, upon which my sister and I started quoting other parts of Leviticus which ban leather shoes and wearing cotton next to the skin. Plus the bit where we're commanded to go outside the camp and dig a hole if we want to ablute. My sister and I particularly like that one. It made her change the subject, at least. :-D

Oh, I do talk a lot of crap. Sorry. I'll end by quoting someone with actual writing talent, then I'll go away. Happy Christmas to anyone who celebrates today.

"December 24th, Nine PM
Eastern Standard Time
From here on in
I shoot without a script
See if anything comes of it
Instead of my old shit..."

"Revolution, justice, screaming for solutions,
Forcing changes, risk, and danger
Making noise and making pleas..."

"The riot continues
The Christmas tree goes up in flames
The snow dances..."

-Rent

What has been going on with my LJ entries? Every time I edit, it posts it as another entry. (Or possibly I've been pressing the back button instead of 'edit entry'.) Hmm.

Today is write-up-lesson-evaluations day. My computer lost most of my lesson evaluations from after half term, so I'm trying to remember what I taught back in October. Hee.

I'm not sure, but I think I'm going to have to take a break from the Buffy board where I post. It's nothing against the board, which I adore and which feels like home, but I've felt insulted there one too many times (by people who probably mean nothing nasty at all) and it's more than I can deal with when I'm busy struggling through work and family issues. As for the Lord of the Rings thing - I don't know about many things, but I know about literature. I was really insulted by the suggestion that I don't. The fact that I can't read the damn book doesn't make me illiterate. I know that reaction was all about my insecurity, but... I don't know. Maybe I'll just post there a bit less, for the time being. I'd miss doing a Christmas Day post. I *think* this'll be my third Christmas as a Bronzer. Weird. :-)

In other news, I wrapped my presents last night and had the horrible revelation that I'd only bought one book for my friend whom I find a bit difficult. I don't want her to think that I wasn't thinking about her. It's a book that I really think she'll enjoy. It just looks small and unimaginative compared to the two interesting-looking boxes she gave me. I'm crap at buying presents - books and CDs, that's all I can ever think of to give people. Oh well.

Oh great... this is cheerful. Again. Why do I always get the depressing answers to quizzes? Why?!? *cough*


Which Sesame Street Muppet's Dark Secret Are You?
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This is slightly better. Not a surprise.


The Ultimate *Which Harry Potter Character are You?* Quiz
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Sending a Christmas Eve {{hug}} and prayer to kibarika and lawgeekgurl, as I think they need it the most today - and because they're special people. Love to you both.

It's the middle of the morning and I'm sitting on the sofa in my PJs doing course reading. I'm not going anywhere til this afternoon, anyway. On the telly I have an exciting choice between a 'documentary' about Blue and an S-Club concert. *yawn* All helps me to work.

I had freaky dreams again. Can't ever remember them except for just after I wake up - I should keep a notebook by the bed and write them down, or something.

Right, work then wrapping paper shopping... I'll probably get dressed prior to that.

Life lines and suicide crimes - he found me in a state...
I've been cruisin', a good invention
But in some ways I don't think it gets any easier
- Tori

I'm drinking green tea. It's wonderful.

I spent £20 on food at the supermarket today, yet I don't actually seem to have any - except for a bit of salad and pasta. That's just odd. I think I'd better get my dad to feed me for the next few days.

So, I went to the church panto rehearsal and the 'carols by candlelight' service. I have quite a big part in the panto - I wasn't expecting that. I'm a belligerent tree. (It's a long story.) I don't think I'll be very funny, but never mind. The carol service was OK, if a bit boring... My 'home church' doesn't do traditional very well. I missed the contemplative atmosphere of my Baptist church in London. Ah well. It was great to see some friends. I feel guilty for not having done any work today, by I'll try and do some before I go to bed. I'm working on using my evening hours effectively for the next two weeks, since I don't have to get up early - I work best late at night. Plus I need to be used to staying up til midnight by Tuesday, as midnight communion on Christmas Eve usually sees me falling asleep at the altar, which is no good at all.

Jack Dee's on a television drama playing a non-comic character. This is confusing for me.

I think my laptop's dying. It's been doing some very odd things including losing files, crashing at regular intervals and presenting me with strange error messages. It's ancient and basic, but I was hoping it would last me the rest of the university year. I'm not sure now. Am hoping I can get some Disabled Students' Allowance towards a new one. If I can't, I wonder what I'll do - I can't work without a computer. It's not exactly a luxury. Hmm.

Dad took my sister and me out for breakfast. That was really nice :) I'm shortly off to practice being a tree in the church panto rehearsal. Need to fit in some work today, too...

My sister and I have concluded that we're ignoring Christmas this year. Not in a cynical way - we'll try to be cheerful on the day to make our parents happy, and I do enjoy giving presents and going to church at Christmas. (Just as long as I can get past the commercialism and the other things I find more difficult.) But since we're not particularly excited about the time of year itself, at the moment anyway, then we're trying not to get worked up about it. Which is fine by me. I might look for alternative ways to celebrate, to spend time with God... if I'm not too snowed under with work to do anything else at all.

I might be going to see 'Rent' quite soon!! Now that's exciting.

"How do you leave the past behind
When it keeps finding ways to get to your heart?
It reaches way down deep and tears you inside out
Till you're torn apart"
- Rent

That's not even sarcasm - I'm pleased to be home. It's so nice to be in a flat with a sofa and a telly, instead of in one room with no light. Granted, I'll be sick of trees and desperate to get back to London in about three days... but, you know. They'll be nice days. :)

I brought SO many books with me - I don't know when I'm planning to attempt to read them all. Getting them all on and off the train was a bit of a nightmare. So much to do... People who think teachers have it easy because they have long holidays know nothing about how much work we actually have to do. Having spent the last three months working from 9 in the morning til 11 at night, I'll now be spending my Christmas holiday working all day, every day (except Christmas day, which I demand to have off because everyone else does). Hmm... It is worth it. It's just frustrating sometimes, that's all.

I must go and buy some food. There's nothing in the cupboards except for a pint of UHT milk and a tube of tomato puree. But my sister is cooking dinner for me! So that'll be nice.

Oh good - this is cheerful...


Which Lord of the Rings Character are you?
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http://rinkworks.com/bookaminute/
This site is the funniest thing I've seen in ages. I wish they had the books I'm doing with my classes - my students would love them.

Home tomorrow! That'll be nice. I'm just going back to the empty flat, but it'll be light and airy and I have a telly and a sofa and the internet and can make proper tea and my own meals. Yup. Good stuff.

OW I just shut a flap of skin into my walkman as I was turning the tape over. Ick.

That's about it for today... I'm really, really tired. Didn't get up til eleven, which is unheard of for me as it leaves me feeling sick and headachy all day. I don't think I'll do much except pack for the rest of the day. I need rest really badly. Have a good weekend, all.

"A private rite of passage, you gave it up to every boy's sweet dream with their paper cuts
You said 'He's got a Healing Machine - it glows in the dark, glows in the dark'
You say 'There's not a lot of me left anymore - just leave it alone
But if you're by, and you have the time, tell the Northern Lights to keep shining
Lately it seems like they're drowning'..."
- Tori Amos

I saw it! I saw Lord of the Rings: The Two Towers! People can talk about it again now. ;) It was amazing, but I'm too tired to write much.

I need to come off my antidepressants. I sort of self-medicate in that area - I have my doctor's permission to come off them if they're sending me hypomanic, since the balance between the antidepressants and the mood stabilisers is really delicate (I'm on a *tiny* amount to prop the mood stabilisers up). I might go and see the doctor first, just to be on the safe side. But I definitely haven't been feeling right for the past few weeks: it takes a while for me to notice. When I was talking to my lecturer at lunch today, it hit me that I wasn't sounding at all stable. I don't want to go through-the-roof manic. And I have been on them for far too long this time round - I'm supposed to do a maximum of six months at a time on SSRIs, and I must have been on them for over a year now. One doctor quickly forgets what the previous doctor's instructions were, and so it goes on...

It makes me wonder. What would my life be like if I wasn't so tuned in to the effects of my illness and the balance of my medication? If I had to wait six months for a psychiatrist's appointment every time I wanted something changed, as many people in my position have to, then I'd go crazy a lot more than I do. I'm lucky, really. (Or I just try not to think too much to avoid considering all the things that could go wrong with my mind, anytime.)

Wow. I'm so glad I went to see The Two Towers. I might go again; there was a lot in it to think about. I'm waiting to see the last one before I read the books, though.

Oh dear. I need to be better at keeping up with my friends page. When I realise that there are more than 100 entries to catch up on, I tend to give up. Grr.

My lecturer took me out to lunch today. Very sweet of him, only I wish I was strong enough to tell people that there are some days when going out for lunch is the closest thing I can imagine to hell. But I'm not, so I don't. To make things worse, he whined at me because all I wanted was a sandwich and insisted on my having salad and dessert too. Not a good thing. Still... it was very nice of him. And I got to tell him my entire life story, which left him looking half-amused and half-concerned. *And* he took me out for a drink. He's done interesting things that he told me about, and he asked me a lot of questions about my disability rights campaigning and whether I thought I'd have difficulty getting a job because of my mental health problems. Nice to see a teacher training lecturer recognising the institutional prejudices of the teaching profession. Shame he's not the one I'll be applying to.

Oh, and I got to explain to him the reasons why I didn't think the Equal Opportunities workshop was worth anything though I said it a bit more tactfully than that and suggested that we look at inclusive learning in the future. He's aware of the concept and apparently there are lectures and workshops about it in the final term. At least that's something. He's also going to e-mail my college to ask if I can have a desk... There's a bit of a problem in the college where I work - they have too many staff and not enough resources, they don't have much time for their employees' needs, and they treat their trainees like slave labour. Not really a place where you feel safe to declare a disability and ask for reasonable adjustments - even if all you need is a desk in a quiet office. But my lecturer's going to ask for me, so that's nice. I don't hold out much hope, but you never know.

In other news - could everyone who's seen Lord of the Rings: The Two Towers please stop going on and on about it? It's booked up for ages here and I can't see it. And I really, really want to. So stop it. Thank you. :-P

Very bored. Should be working and can't be bothered. Typical. Going to go home on Saturday instead of Sunday, as there's a church panto rehearsal on Sunday afternoon. I'm the Tree. I have a long, deep monologue. Don't ask.

I heard Julie Fernandez from 'The Office' (cult British comedy show) on Radio 4 this morning. (lisy_babe, you know her, don't you?) She was brilliant. Everything she said about disabled people in the media - or, to be precise, the appalling lack of disabled people in the media - was excellent. I hope she changed a few people's attitudes, if only a little bit.

Did I mention that I got a really good end-of-term report yesterday? Grade 1s (highest grade possible, on a 1-5 scale) in everything, including classroom teaching. I don't actually believe my mentor, who graded me, and wonder if he's just being nice - he hasn't seen a lot of my teaching. But it's good to have a decent result after a hard term. I'm hoping I can get a grade 1 in my assignment too - that would be really rewarding after all the work I put in. We'll see.

I'm taking a sort-of-day-off today. I've been reading bits of Antony and Cleo, but I'm also sittting randomly in cafes and running around London to visit coursemates to pick up notes and deliver presents, etc. Going to a 'Speak' meeting today, too. They're always good.

"Can't you spare a dime or two?
Here but for the grace of God go you -
You'll be merry, I'll be merry,
Though merry ain't in my vocabulary
No sleighbells, no Santa Claus
No yule log, no tinsel
No holly, no hearth
No 'Rudolph the red nosed reindeer',
Rudolph the red nosed reindeer,
No room at the Holiday Inn - oh no
And it's beginning to snow..." - Rent

I read my poems in church. They went down well. My prayer (which was for people who aren't celebrating Christmas, whether because of poverty or illness or depression or bereavement or loneliness) convinced a member of the congregation to put £10 into the communion collection for local people in need - at least, that's what he told me! So I must have done OK. It was funny though... I was half way through my second poem and I suddenly thought "These are the most depressing pieces of literature I could have chosen, and they're about Christmas." I gleefully told this to the minister, in an 'I was right all along about Christmas being depressing and horrible' way, who did a good job of convincing me that actually, they were poems that ended fairly cheerfully and that Christmas is a good thing. And I know it is. But it sort of made me laugh, standing there in front of the congregation and suddenly realising how thoroughly depressing I sounded. Bit typical, really. ;)

Saw the lovely angelrachel yesterday afternoon, too, which was great. We had lots of tea (or I did), spent ages in bookshops and comic shops, wandered around London in the cold, had some more tea, and chatted about all sorts. That was great. lisy_babe, add angelrachel to your friends list. You two would get along well - a fact that occurred to me as I was chatting to her in a cafe yesterday. Just trust me on this one. :)

And today I went into work for what I thought was going to be one short meeting, and ended up staying all day to sort out next term's teaching with the teacher whose classes I'm taking over. It was good to get that out of the way, at least. Now I just have to make schemes of work, plan lessons and read the flipping books. So I'm finished for Christmas! Properly finished! Finally. I may have to sleep all day tomorrow. It's been a long term.

"Christmas Bells are ringing
Christmas Bells are ringing
Christmas Bells are ringing -
Somewhere else - not here..."

"No room at the Holiday Inn - oh no!
And it's beginning to snow..."

-Rent