Your Friendly Neighbourhood Grammar Nazi

Car Crash

2011-11-12T21:03:00.002Z

Sooo, I'm terrified of driving.

Always have been. This possibly stemmed from having a crazy mother who drove a shitty little mini that was prone to breaking down in the middle of the road pretty much every day. Or it may have stemmed from the fact that I actually understand statistics*, and realise that a) most people are stupid, b) most people drive, c) most car accidents are caused by stupid people, and d) the chance of you being in a car accident at some point is pretty ridiculously high. Or it may have been some combination of the two.

I've never considered it a phobia as it wasn't an irrational fear. As I've just explained, cars are fucking terrifying and that's a perfectly rational, logical thing. What's less logical is me trying to train myself out of this fear and trying to make myself trust people's driving skills. I'm thinking that was a bad idea.

See, last night we were driving along a country road in the dark and the rain. This is partly because the dual-carriageway we would normally take was closed and the satnav refused to recalculate in any way other than continually trying to get us back onto that dual-carriageway by forcing us down country roads every time we got turned away from the turning we wanted to take by traffic cones and shit; partly because we'd driven all the way down from Manchester and were only 3 miles away from Rambo's Dad's place (our destination) and weren't gonna be stopped by a little bit of rain and/or dark when we were that close. Nor would we be stopped by the road being closed.

What we would be stopped by, apparently, was a tree.

I can't really tell you much about the situation leading up to this tree collision as, being utterly terrified of this whole driving thing, let alone this extra-terrifying driving-in-the-wet-and-dark thing, I had my eyes firmly shut and had resolved to do keep them that way until we got there.

Then I heard a 'shit' from Rambo, opened my eyes, saw a tree, thought 'Oh shit we're ACTUALLY going to hit that' (as opposed to all the other times I opened my eyes during this drive to see something or other that we were in no way going to hit and thinking 'oh shit we're going to hit that' before promptly closing my eyes again and telling myself to trust Rambo), heard a bang, felt some pain, and kind of sat there taking stock of my various joints to make sure they were all in place whilst Rambo shouted at me to 'Get out of the fucking car!' - surprisingly, all joints remained firmly within their various sockets at this point.

After being yelled at twice by Rambo and once by the person whose house this tree was in front of to get out of/away from the car, I figured 'screw it' and got out and away from the car despite my aching leg and lack of shoes (because shoes are evil torture devices and having had to endure them all the way TO the car I will immediately take them off until we reach our destination), managed to hobble over to the garden steps of the woman-whose-house-this-tree-was-in-front-of (aka; the-woman-we-woke-up or even the-woman-who-called-the-ambulance-and-police), and sat there in a state of terrified shock and pain until Rambo fetched me the wheelchair out of the boot so I could sit in a state of terrified shock and pain on something that wasn't wet and muddy. Then woman-we-woke-up-who-called-the-polica-and-ambulance's neighbours came out with an umbrella for me and some tea for Rambo (I think they offered me a mug but I was busy being in lots of shock and pain and mayyy have snapped at them to stop asking me questions - if so I apologise for that, lovely people who offered tea and whose umbrella I accidentally stole).

Eventually, round about the time when I was getting rather sick of shock and pain and was moving on to boredom, the police and an ambulance got there. Lovely paramedic asked me a bunch of questions - some of them repeatedly, because he refused to believe that I hadn't hit my head at all and needed to keep checking. Then wheeled me into the ambulance, helped me transfer onto the bed/stretcher/thing/(what is that called?) in there, got annoyed with me for having no conditions that he had actually heard of or knew how to spell, made me laugh, got told off for making me laugh as my stomach hurt (note - I had my laptop on my lap in the car as earlier I'd been using totally-not-scary-because-it's-not-moving traffic to write (totally blame NaNo curse for this) and airbag jammed it into my stomach quite badly), offered opiates, got more annoyed with my awkwardness when I explained they didn't work on me, then gave me laughing gas** and proceeded to spend the rest of the journey making me giggle without being told off, and telling me over and over again to take more despite the fact that the reason I kept stopping was to answer the questions he kept asking me.

Theeeeen we got to the hospital, and lovely paramedics had to go away and take my nice laughing gas with them. Hospital staff refused to give me anymore, and instead offered me paracetamol and some bullshit weak opiate that I was long past bothering to try on even my normal pain. Without the laughing gas my pain rose to an 8 and then steadily up to a 9, at which point I started crying uncontrollably because that's what I do at a 9. Then they made me lie around waiting for hours. I'm not sure why. An hour or so later a nurse tried to take my blood, failed, got another nurse to try it who also failed (they both tried on both arms so that's 4 unnecessary holes in me). The second nurse came to the conclusion that stopping me from shivering with cold (remember how I'd walked on bare feet through the wet a couple hours ago and then sat in the rain for ages before the ambulance got there? Yeah, nobody thought to get me a blanket or anything (except Rambo, but as he got me that in the rain it was then soaking wet and got thrown on the floor of the ambulance)) might be a good idea. Then they left me alone under warm blankets for another hour or so. The warm blankets don't stay warm that long and I was freezing again after only ten minutes, but nobody came back for another hour.

Anyway, hour later and finally got to see a doctor, who asked me where it hurt and then, completely ignoring me crying hysterically and pleading with him not to, proceeded to press down extremely hard over pretty much everywhere I was bruised. I may or may not have screamed. I'm not sure. Everything goes a bit blurry when the pain hits a 10 and I'm not precisely aware of anything but the pain. I do know that he spiked my previously-considered-to-be-at-a-9 pain even higher after he'd stopped. I had to re-evaluate my scale a bit to be able to call this a 9 as I sobbed uncontrollably (different to crying uncontrollably - that's a normal reaction to a 9 for me but usually involves no sobbing whatsoever as if I'm at a 9 then sobbing will do nothing but make it worse...which it did, but I still couldn't stop). Then presumably due to possible-screams (still not sure on that - will have to ask Rambo), a nurse brought me some morphine, despite it very clearly saying on the notes the doctor had been handed by paramedics that opiates DO NOT WORK on me. I had the morphine, doctor did an ultrasound on my stomach while I sobbed a lot and couldn't speak, then told me I could leave once the morphine kicked in.

...

Yeah, once that thing that doesn't work on me works I can leave.

...

So anyway, an hour later Rambo finally manages to get a hold of someone to ask them what the fuck they think they're doing, and doctor comes back and basically tells me to gtfo***. Nurse apologises that she can't give anything else to help with the pain. Rambo tries to explain that I cannot physically get up because the pain in my abdomen means I can't bend, and the subluxed ankle and swollen shin mean I can't walk, and I have no shoes on, and I don't have my wheelchair there. Doctor says we can take a wheelchair out to the taxi ramp outside, and once again basially tells me to gtfo.

...

By this point the back pain of being in a hospital bed coupled with the pain of being poked and prodded and subluxated by various doctors and nurses has me pissed off, filled with adrenaline, and most importantly ready to get the fuck out of there so I manage to transfer into a hospital wheelchair despite the dizzying-nearly-black-out-ness of the pain level 10 that creates, and then do the same again at the taxi***, and the same again when we get to Rambo's Dad's.

Long story short: I'm stuck in bed at Rambo's Dad's (where I have no air machine because he wouldn't approve). I can't sleep, because lying anywhere but on my back bumps my pain up to a 10, and trying to sleep on my back causes my brain to think I'm falling for some reason and jolt me awake with a start which hurts like fuck. I can't eat because I can't sit up properly, and because my stomach hurts like fuck. I am managing to drink small amounts of watery squash but probably not enough to combat the dehydration from not being able to stop crying. I can't get out of bed unaided, and have nearly passed out 4 times already from attempting to go to the toilet. Every single part of me is screaming from being stuck in this position but trying to move out of it puts me back in that state of complete unawareness of anything but pain that is my 10.

I'm finding it rather hard to believe that they let me out of hospital, to be honest. Let alone insisted against both mine and Rambo's wishes.

(NOTE: Rambo's fine, by the way. In case anyone was wondering. Lucky fucker got off with a graze on his arm and nothing else. And has managed to both eat and sleep since then.)

*Don't start arguing with me about this. I don't have numbers to back this up and I can't be arsed to go looking. I'm in a lot of pain, you douche.

**It's pretty much exactly like sucking on my air machine, except it doesn't last longer than 10 seconds after they take it away from me, whereas air lasts me hours.

***No not in those words. I can't remember the exact words - everything is a pain-addled haze. I just remember the gist and no matter how politely it was put, the gist was 'get the fuck out'.

****Quick sidenote - Mr. Taxi Driver, I don't care how interesting the car crashes you want to talk about are, you do not talk about them in front of someone who has just come out of hospital from a car crash and is already absolutely terrified of the fact that she's in a car, and has politely explained this to you and asked you to fucking stop it already.

Disability Medical Reasons != Medical Reasons?

2011-04-11T00:30:00.006+01:00

PM From ***: hey hey question!!!!!! I just saw your newest pics earlier XD is that you in the wheelchair?
PM Sent To ***: "Yup."
PM From ***: Lol. I didnt know you use a wheelchair lol
PM Sent To ***: "Well, I do. :P"
PM From ***: Lol. How come?
PM Sent To ***: "Because they're totally awesome. All the cool kids do it. ;)"
PM Sent To ***: "*cough* I mean uhh, here, have a link: http://en.wikipedia.org/wiki/Ehlers-Danl os_syndrome"
PM Sent To ***: "(minus the space that TLR chat adds)"
PM From ***: Lol. All you had to say was that its medical reasons why =P
PM Sent To ***: "...Well, who the hell uses one for non-medical reasons? And what the hell ARE those reasons?"
PM From ***: Lol. I meant like disability medical reasons LOL. Ive used one cause I couldnt walk fast enough cause of my surgery LOL.
PM Sent To ***: "That's...still a medical reason."
PM From ***: XD haha. But i def didnt know lol. its cool actually lol

Uhhh...I really don't know how to feel about this conversation. At all.

EDIT: after an attempt at explaining:

PM From ***: Awwwws. Lol. Leasnt your not depressed over it (as far as I can tell) lol

Aaand another gem:

PM From ***: Hahahaha. if you like sports you shuld enter the special olympics XD

That last one would be a lot more forgiveable if I had ever once said to her that I liked sports, or even implied it. Or talked about them at all.

PM Sent To ***: "I've never liked sports. >.>"
PM From ***: LOL Okay then HAHA
PM From ***: Lol. Least your not depressed =P thats all that counts XD haha

...I give up.

Well, She Doesn't Usually, But Then She Doesn't Usually Get Poked In The Face Either

2011-04-08T19:02:00.001+01:00

Little kid: Is that your dog?
Me: Yes
Kid: Does it bite?
Me: No, she'll only playbite if you're wrestling with her.
Kid: *proceeds to poke Moxie in the face with a stick*
Moxie: *runs away scared*
Me: Please don't do that. She's only a baby and she's scared.
Kid: *chases, still trying to poke stick in her eyes*
Moxie: Grrrrr
Kid: *continues poking her in the face*
Me: Could you please stop that? She doesn't like it!
Kid: *pokes her in the face*
Moxie: *bites, but not hard*
Kid: YOU SAID SHE WOULDN'T BITE! *runs away crying*
Me: ...

I Think I Preferred The Sales Calls

2011-04-08T17:58:00.001+01:00

So, there's a knock on the door, and I'm home alone so I have to get up to answer it despite feeling very faint and not very steady on my feet (and still being in my pyjamas). I'm not best pleased about this but figure 'hey, it could be a parcel!' (I get all excited about them)

Guy at door: *speaking very quickly* Hello! I'm with the British Red Cross!
Me: *tries to get a word in edgeways to say that I have no money to give them* I'm sorry, I-
Guy: *still speaking quickly* Don't worry! We're not after your money! I just wanted to tell you about the vital work that we do around here! You're probably not aware of this but did you know that within a three-mile radius of your home there are roughly twenty sick or disabled people who need our help?!
Me: *finding it very difficult to stay standing* Actually, I-
Guy: We're on constant alert for these people in case they fall or faint or have strokes or accidents in their home!
Me: *worried I'm about to faint, finding it very difficult to concentrate on what he's saying* ...
Guy: *carries on ranting about disabled people to me* (lack of comprehension prevents me from telling you what he was saying here)
Me: *tries to get another word in edgeways* Excu-
Guy: *talks over me*
Me: ... *gives up and leans against wall to try and keep balance and consciousness*
Guy: *finally finishes rant* So, have you been out at work today or are you just having a leisurely day off?
Me: Actually, I don't work, as I'm disabled myself, and I *really* quite badly need to go sit down now. *stumbles back a few steps to collapse on the wheelchair behind me*
Guy: ...
Me: ... *too busy waiting for get my head to settle down and my blood pressure to normalise to talk*
Guy: Uhh, I'm very sorry. *walks off*

Sometimes Sales Calls Amuse Me

2011-04-07T16:32:00.001+01:00

Salesperson: Hi this is **** from 3 the phone company. Can I just ask if you're on pay as you go or contract?
Me: Neither. I don't have a mobile.
Salesperson: ... *looking through script*
Me: ...
Salesperson: Uhhh...Uhmmm... *panicking as this response isn't in there*
Me: ...
Salesperson: ...Does anyone else in your house have one?
Me: No! *lying*
Salesperson: Oh, well, thank you very much for your time! *hangs up*

I ran out of words

2011-04-05T23:10:00.003+01:00

...but it's okay, because Rambo understands me anyway.

Me: Sugar?
Rambo: What?
Me: Su...gar? *holds out mug*
Rambo: Okay, I'll go put the kettle on. *takes mug*
Me: Sugah!
Rambo: Do you need me to put some words in this?
Me: Sugar? *headtilt*
Rambo: You want words in your tea, or are you just low on blood sugar?
Me: Sugarrrrr.
Rambo: Well, you seem to be down to your last word, so I'll put some words in this.
Me: Sugah! *smiles*
Rambo: (to Moxie) Do you have any words for your Mommy?
Moxie: *shakes self*
Rambo: So that's a no, then?
Me: NO! SUGAH!
Rambo: *laughs, and goes off to make tea*

March 26

2011-03-26T17:00:00.010Z

I couldn't make it to the march today, but I've been cheering you all on and watching news and twitter feeds. I'm so proud of you all and so glad that I can still watch from my sofa. Here's a collection of the best pics from twitter today. <3

And a song to listen to while you look through:

Trojan horse in Oxford Circus
I was told there would be biscuits
There are no short cuts to anywhere worth going/Don't ruin my future/How do you sleep at night?
I wish my boyfriend was as dirty as your policies
Cutting is for emo kids
David: How on earth do you sleep at night?
Now you've pissed off Grandma
Listen to the people's rage
Let this be a sign!
Dear Con Dems, this relationship just isn't working for me
Can't cut this, Gideon
Coincidence? I think not
David & George, sitting in a tree, C-U-T-T-I-N-G
ConDems - putting the 'n' into 'cuts'
Lies lies lies
The Cunt
Marching on behalf of those that can't
Resist, Protest, Occupy (drink tea)
Torys are a pain in the arts
White male Northern middle-class post-graduate science students against the cuts!
It's a trap!
Close tax loopholes, not schools, pools + hospitools
Please look after this country, thank you
It's my birthday! If you are going to kettle me there had better be cake involved!
Stop cutting ker now
People actually hate you!
Cut yourself
Bury action group - No cuts to jobs or services
Even the Count knows this doesn't add up!
Why did Nick Clegg cross the road? Because he said he wouldn't.
Let them eat cake, Con Dem the poor
Liverpool remembers
Yucky government
Does anyone else miss Gordon?
[citation needed]
Our society is bigger than your society
Oi! Tories! Leave our cake alone!
Generation for change / There is a better way
Save our NHS a sign of Civilization
Same boat my arse
Governments can be toppled
Ow man, ya divin knaarr wat ya deein
My sign's shit. So are your policies
Fucked from the start

If anyone has any more - please share in the comments!

Argh!

2011-03-16T17:59:00.003Z

Some neighbourhood kids keep knocking on my door and running away. Every time they do it I hurt myself getting up and to the door and the puppy goes crazy barking. They've been doing it for weeks. I've asked around, and they're not doing it to anyone else but me, and I just don't fucking know why. What is so wrong with me that they feel the need to do this? I'm sure they don't realise how much they're physically hurting me, but even so it's not very nice and I just...I've never done anything to them. I don't think I've ever even met them. I don't know. I have a terrible memory. But I don't recall ever meeting/seeing/saying a word to these kids, so why are they singling me out for this?

I am actually crying over this. That is ridiculous. But I am in so much fucking pain from getting up to go to the door and calming the puppy down five times in the last hour and I have a horrible headache from all the fucking noise and I just can't take it anymore. Please make it stop.

...Why me?

Blech

2011-02-28T10:34:00.002Z

Missed a CAB appointment this morning as, after waiting 20 minutes for a bus that supposedly comes every 8, was refused access because there was a pushchair in the wheelchair space. Well, I could see a pushchair in the space but the driver's exact words were 'there's no room for you' followed by 'it's not my fault'. This is after letting 10 non-disabled people go in front of me, and before letting 5 people on at the next stop down the road, which is visible from the stop where I was.

I'm fairly certain that if there was room for those people, there was room for me. I'm also fairly certain that pushchairs can be moved/folded up, a lot easier than a wheelchair can. I'm also fairly certain that I'm meant to have priority over them because of this.

But no, I just get to miss appointments. Ironically, appointments to get DLA sorted out so I can get mobility, use that on motability and not have to deal with buses.

My Subconscious

2011-02-26T15:56:00.001Z

I be hatin' it again.

Don't think I mentioned this the first time it did it, but about a month or so ago I was asleep and dreaming, and in my dream we were at some nice restaurant/cafe that had live entertainment. There was a woman on stage - just her, her guitar and the microphone - and she was singing this song. I woke up only a few seconds into it with one line stuck in my head. Like, really stuck. I assumed it was a real song that was stuck in my head and promptly googled the only line I knew, to figure out what it was so I could listen to it and get it out of my head, to no avail. It didn't exist. I had a single line from a non-existent song stuck in my head and no way of getting it out.

So I wrote the damn thing. I have no knowledge of music whatsoever so it was damnably difficult and took days, during which time I was completely unable to write any actual prose as every time I tried my head was singing that one line over and over. Ugh. But I did it, and it got out of my head, and I thought that was that.

And then this morning I woke up with a whole chorus of a song stuck in my head. Didn't really recognise it, so sang it to Rambo to see if he knew it. He did not. Googled the lyrics I knew, no results. Now, if Google doesn't know what it is, and Navi* doesn't know what it is, it sure as hell doesn't exist. My subconscious is demanding I write songs again. A few days before the end of the month when I'm trying to write my screamprompt, and am behind writing blog posts, and have a lot of coding to do. No, fuck all of that, I have to write a song.

Fucking subconscious. Fucking dreams. Fucking song-writing. I did not sign up for this.

*There is a small part of Rambo's brain that is constantly listening out for music. It can find it in anything - the accidental melody in a yawn or cough or someone knocking on the door, or the real melody of very quiet music that nobody else can hear. Once it finds a melody, it promptly tries to get Rambo's attention by going 'Hey! Hey you! Listen! Look, you know this! Hey, pay attention! Hello!' until he listens, and sings along.

Blue Lips

2011-02-22T16:09:00.002Z

I've just been informed that my lips turn blue when my blood pressure drops. I wasn't aware of this. Apparently Rambo's noticed them turn blue before but didn't realise what was causing it until I was dizzy in the park just now and he forced me to sit down, then watched the colour come back into them as my bp normalised. He's actually quite pleased to have an outward indicator of how I'm doing - normally he has to rely on trying to work out if my brain fogginess and irritability means I'm low on spoons or just not awake yet/actually mad at him. :P

...What?

2011-02-20T12:44:00.001Z

I was just at the park with Moxie. She was running around playing, as puppies do, enjoying herself immensely, and I was sitting on the bench with a book. Now, this is primarily a dog park and is always full of dogs running around playing - so you don't go in this park and expect to not deal with any dogs coming to say hello, and therefore I always get annoyed when people complain about it.

Anyway, this woman enters the park with her (I'd guess about five year old) son. Walks past me up the path and Moxie runs over to say hello, as she does to everyone, as most dogs do in this park to everyone. Doesn't bark or growl or jump up or anything, just runs over to them, crouches down in playful puppy position, then runs off again back to me. Little kid gets scared and moves towards his mother for protection. Mother, rather than comforting her child and reassuring him that everything's alright and it's just a puppy and not going to hurt him, turns around and shouts at me, "If that things comes near me again I'm gonna boot it in the face, keep your fucking dog on a lead!"

I could only stare at her in shock. Then brought Moxie home as I was quite scared for her safety.

Bureacracy

2011-02-17T17:32:00.001Z

As I'm sure I've said before, I can't cope with the benefits system. This maze of red tape is beyond my cognitive abilities. I know, I know, I'm writing right now, surely that requires fairly good cognitive abilities? But you don't see how long it takes me to craft coherent sentences; you don't see how many breaks I have to take; you don't see me fumbling for words and leaving them blank to come back to them later; you don't see me staring into space, not lost in thought but just...lost, unable to fully form thoughts in my head, let alone translate them to the page; you don't see me breaking down and bursting into tears, overwhelmed and defeated. You don't see all the times I try, fail, and give up.

...You do see me rambling and getting pretty far off the point. I can't handle bureacracy. I can't do formal writing, I stumble over the words and then worry that it's not good enough or polite enough or what-have-you. This probably isn't helped by the times when I try to write formally and people look over my shoulder and tell me I'm doing it wrong. I can't talk properly face-to-face or over the telephone either, assuming I can get over my anxiety enough to try in the first place. I stumble, I forget things, I get things wrong, I rush my speech and forgo politeness in an effort to get it over with as soon as possible. I blank on the answers to the simplest of questions (just try asking me my name when I'm nervous). I have trouble distinguishing sounds, so if there's any background noise it runs together with what people are saying into one big mess of sound that makes no sense, so I can't work out what people are saying and then get embarrassed asking them to repeat themselves five times in a row. I'm not assertive in any way, shape or form; bureaucrats offer up nonsensical and contradictory words in a tone that suggests there's no arguing with them and that they are always right...and so I don't argue, and I take them at their word. And later when I regain my senses and my cognitive abilities I realise I've been played for a fool again.

I get overwhelmed by it all, and I give up. And I avoid it and forget about it and kind of just hope everything will sort itself out. That's pretty stupid and naive of me, but unfortunately not that uncommon. Chronically sick people and the mentally ill are just not equipped to deal with this system, and it's those people who most need to fight with it.

It's Called CHOOSE and BOOK - I Did Neither!

2011-02-10T17:13:00.004Z

You remember that Choose & Book letter that was in no way a choice? They said my selected clinic would call to arrange an appointment.

A few days ago I got a letter saying 'We apologise that there were no appointments available when you called to arrange one' - I did no such thing - 'we will be in touch to arrange one for you.' Pretty pissed at that, still don't actually want to go to this particular clinic. Would like an actual choice.

Then today, I got a letter confirming the appointment that I supposedly arranged with them, for next Friday.

Again, I arranged no appointment with them. I have not been in any kind of contact with them. I do not want to go to this clinic.

Loosely Speaking

2011-02-10T14:34:00.001Z

'Dear Fellow Zebra,

Thank you for your submission to Loosely Speaking. Your time and effort are valuable assets to the Ehlers-Danlos syndrome community and we hope this exercise has proven helpful for you.

One or more of your works has/have been selected for the Loosely Speaking Anthology. Congratulations!

Edits may have been made for form, content, clarity, and unity of the subject matter. Every effort has been made to preserve the voice and tone, and to preserve the creator's objective of preserving hope and determination overall.

Please consider submitting another piece with this in mind, to challenge yourself in your production and to make time for this. It's free, it's good for you, and it's good for all of us! We'll all keep an eye out for more submissions because we all value the community as a whole, and growing artistically can help us communicate with one another and beyond.

At this time no further action is required on your part, but you are deeply encouraged to produce another piece. There's plenty to tell, so let's tell it! Remember to keep your work centered on EDS, to keep the piece focused, and to stay in touch with your intended audience. Thank you for your time, effort and dedication.

Best wishes,
Sama Bellomo
Editor-In-Chief
Loosely Speaking: An Ehlers-Danlos Anthology'

Yay me. :D

For more information about it, go here.

CAB

2011-02-09T19:22:00.003Z

Okay, I realise I've not really posted anything for a while and I probably should. Here's what's been happening:

Friday afternoon I went to my cousin's house to see if she was okay and if she needed anything and if there was anything I could do and to just generally give her hugs and try to make her feel better. Spent a few hours talking about everything under the sun except my aunt as she wanted to be distracted as much as possible. Then in the evening her uncles and aunt showed up - her mother's brothers, which means more Irish than a stereotype could possibly be - and we went to the nearest pub and drank and laughed and reminisced about what a wonderful person my Auntie Mary was. My ribs were hurting from laughter by the end of the night and I could barely breathe. May sound insensitive but it's what Mary would've wanted. For instance, we're under strict instructions that nobody is allowed to wear black at the funeral - there will be bright colours, happy music, and much drinking and laughter.

Saturday I got two letters in the mail - one from the gas company telling me I owe them £250 in arrears. I thought gas bills were on a direct debit, but if they're not, this is the first I've heard of money owed. They've not been sending me monthly bills, just this 'you owe us money, we're gonna turn your gas off' letter. Fucking great.

The other letter was telling me I owe £750 council tax and they're taking me to court. Again, this is the first I've heard of it. I'm not meant to pay council tax anyway. My council tax benefit states that I have £0 council tax to pay. But my sister was living here at the time so she had to pay some of it. She's since moved out, informed people of it, taken her name off the council tax, but apparently none of this evidence is good enough for the housing & council tax benefit people and they refuse to believe she no longer lives here. So my housing benefit's been at the same low rate as when she was living here but I'm paying full rent. Making things so incredibly difficult. I'm not sure I can afford food for the rest of this month and that's not even taking the gas bill into account. Screw the council tax that I'm not even meant to be paying.

So we went to the CAB on Monday. We've been trying to make an appointment with them for months but we've trying to do it by phone and it's impossible to get through. Eventually said screw it and spent a tenner (that would've gotten SO much food - gonna have to scab food off my dad this month) that we really couldn't afford on bussing over there just so we could make an appointment to come back next Monday. Which is Valentine's day. Gonna spend all the spoons I have going to that appointment. Kind of sucks. I rarely get to have sex because it takes so many goddamned spoons, and I was kind of hoping that on Valentine's, of all days, I could have enough spare for it. Oh well.

Anyhow, CAB are gonna help me sort things out. Hopefully. Although I still think it's ridiculous that I had to go all the way down there and then wait for two hours (in the noisiest waiting room I have ever been in - so many levels of sound my head was constantly feeling like it was going to explode) to see someone for all of two minutes so that they could do an 'assessment' so they could give me an appointment.

Further Update

2011-02-04T06:37:00.002Z

She passed away a few hours ago. I was going to go see her in a couple hours. I didn't get to say goodbye.

Update on the Update

2011-02-01T01:56:00.002Z

Following on from this update:

It's progressed a lot further than we thought and the doctors say that treatment's no longer an option. She has a few weeks left at best, so I need to scrape some money and spoons together to go visit her soon.

Sometimes I Hate the NHS

2011-01-29T17:29:00.000Z

Don't get me wrong, I'm ecstatic that we have free healthcare. I've heard enough horror stories of other countries to be damned grateful for what we have. But having said that - it could be so much better. I mean, it may not be free in other countries but they also don't have to wait six months to see a specialist.

Anyhow. I eventually managed to get to an appointment with my GP for the first time since seeing Snowdon. Although it wasn't technically my GP, just the locum who was on duty. Turns out that although Snowdon talked with me about seeing physios at his hospital and we discussed occupational therapy and talked about how I should probably be referred to Dr Ho's new clinic at the Manchester Royal Infirmary as she was more of an EDS specialist...he'd not actually referred me to any of these places. I asked my GP if he could refer me and he just didn't seem sure about any of it. Sent me away with a 'scrip for Nortryptiline, as Snowdon suggested, and that was that.

Then this morning I got a Choose & Book letter through. Now, I'm sure we all know that Choose & Book doesn't actually mean Choose, but it usually means I at least get to see what's available before picking the only available appointment. Not so this time. This time I have a 'selected clinic' and these instructions:

'Your selected clinic has been notified of your need to book an appointment with them. They will contact you to agree an appropriate date and time for your appointment.'

Wonderful. Now I get to wait around for them to call. Which they'll probably do whilst I'm asleep as I can't anticipate when they'll call and can't force myself to stay awake all day everyday with my sleep schedule so fucked. Or quite possibly I'll be awake but too much of a bundle of nerves to answer the phone - most times when it rings I ignore it.

I like these things to be on my terms, dammit.

But that's not even what I'm mad about. What I'm mad about is the 'selected clinic'. It's for physiotherapy, but not the physios at Dr Ho's clinic, where I was meant to be referred, or the physios at Snowdon's clinic, who I was meant to be seeing 'in the meantime'. No, I get to go see physios at the mobile care unit.

I've been to this mobile care unit before. It's basically a bunch of portacabins. The 'wrist doctor' I saw there had no idea what he was doing, put me in a bunch of pain moving my wrists around (which subluxed, but he didn't know the word and laughed at me when I tried to explain), didn't listen to a word I said and had never heard of EDS. He sent me for utterly useless tests and bloodwork. I then spent three hours having three nurses - and finally that doctor again - poking me with needles trying to get some blood. I came home with holes in both arms and both hands, a lovely colourful array of bruises, and they managed to get no blood out of me.

Okay so I didn't see any of the physiotherapists there, but I'm not holding my breath that they'll actually know anything about EDS seeing as this is not in any way a rheumatologist or connective tissue disorder clinic. And sending bendies to physios who don't know about bendies is a bad bad BAD plan that has done so many of my bendy friends permanent damage.

Smugness:

2011-01-29T15:13:00.002Z

That feeling you get when you call your dog once and she comes over to you and sits patiently while you put her lead on, whilst the people who've been trying to get ahold of their dogs for 20 minutes stare at you in amazement and jealousy.

Exhaustion

2011-01-26T21:34:00.004Z

I've not had this level of exhaustion since my schooldays, where I dealt with insomnia every night and was then woken up after roughly three hours of sleep in order to get to school.

What would happen was me forcing myself to open my eyes, despite how heavy they were feeling, forcing myself to get up and switch the light on, then forcing myself to get dressed, all despite my utter exhaustion because I knew I had to go to school and I had no choice about it and if I stayed in bed any longer I would be late.

That all sounds fairly normal, until five minutes later when I realised I was actually still lying in bed and had either dreamt or hallucinated the whole thing. Then I would start the whole process all over.

Repeat until the mother came in to shout at me. Then I felt incredibly guilty and doubled my efforts. To no avail. Plus I'm feeling even more exhausted at this point because as far as I'm concerned I've already forced myself to get up and do things, going through each meticulous detail, about twenty times. And felt the exhaustion of each one.

Eventually this would end with the mother actually physically dragging me out of bed, forcing clothes on me and dragging me to the car. Usually after throwing heavy things at me (she never hit me with her actual hands). At that point I would be actually properly awake so my attempts at explaining to her what had happened got laughed at.

I'd then get in trouble at school for being late, then fall asleep later and get in trouble for that, usually to shouts from teachers of 'oh I'm sorry, am I boring you?!'

Anyhow, to cut a long story short, Rambo came home today to find me still in bed, was quite surprised (and annoyed) at this and when he woke me up to ask me what I was still doing in bed I just looked at him through bleary eyes then burst into tears and fell all over myself apologising.

I tried to explain, but I'm not sure he understood. I mean, it certainly sounds crazy and not-entirely-plausible. Oh well. I'm awake now at least.

Bitterness, Or Just Feeling Constantly Left Out?

2011-01-25T06:46:00.001Z

I hate being the bitter cynical bitchy person who ruins other people's conversations (the whole 'can't talk about that around <insert minority group/person here>) but you have no idea just how frequently things crop up in casual conversation that stops me from talking because I either just have no way of relating to what people are talking about or me attempting to would make other people uncomfortable. Or possibly result in me getting pissy at people, or me trying to not be pissy at them and them taking it as such anyway. So I stay quiet. And then people are all 'why are you so quiet?'

Okay so most of these people may not know about my problems, because I don't like constantly talking about them and having to explain about them. But everyone everywhere, both on the internet and in real life, inevitably winds up talking about things that I can't join in with and inadvertently insulting me. Not intentionally, but I feel bad when people are whining that they feel bad because they've spent all day sitting on their ass playing video games and only done half of their chores, when their list of chores that they've done is about four times what I can handle on a good day and I've done virtually nothing. Except sit on my ass half-assedly playing video games because I can't even play them properly.

Or when someone asks what they've got planned for the weekend and they reply by rattling off a huge (in my eyes) list of things, then round it up by saying 'not much actually, pretty slow weekend'

Or when they're talking about their jobs and how they moved from an office job into waitressing because it got them more exercise and they hated sitting on their asses all day.

Or when they're talking about uni and how hard it is. And then talking about how it's awesome and they just get drunk all the time. I think there might be some sort of correlation there.

Or when they're discussing exercise.

Or when they're discussing diets and 'healthy food'. (I'm meant to eat 10g of salt a day. I have problems with low blood pressure and low blood sugar. I basically need to eat junk.)

Or when they're discussing expensive things.

Or when they're whining about being 'poor' and therefore can't afford said expensive things. After buying said expensive things. 'I really shouldn't have but I just couldn't stop myself!'

Or when they're whining about how they can't write because they can't concentrate.

Or when they whine that they're in pain and I offer them painkillers and they're all 'it's not that bad, I'll just grin and bear it' (Hint: If it's not that bad, don't whine. If it's whine-worthy then it should be painkiller-worthy. Otherwise it comes off as you don't actually want to fix it, you just want sympathy.)

Or when they whine about 'insomnia', and I sympathise, and they say it only happens to them when they've had too much caffeine etc and start trying to tell me about good sleep hygiene to cure my insomnia. (Hint: That's not fucking insomnia. That's poor sleep hygiene. Big difference. Main difference being that good sleep hygiene will cure your bad sleep hygiene woes.)

(NB: These are all just examples from today. Many, many more happen on a daily basis. I don't usually write them down, I usually just sit there quietly waiting for it to get back to a topic I can actually talk about. But I am so bored right now.)

Evil Genius

2011-01-19T21:43:00.002Z

Couldn't sleep last night. Too much pain. Went downstairs to get a snack but couldn't manage to make it back up the stairs. Tried curling up on the sofa with a book but Moxie wouldn't leave me alone. Took cushions, blankets, snacks and book into the hall where I could shut the door and hide from the dog. Made nest of blankets/cushions, read book until I was so exhausted I was dropping off. Managed to get back up the stairs and collapsed in bed.

Rambo woke up in bed with me, as he had been when he went to sleep. Went to work, on the way discovering a nest of cushions and blankets in the hall, with the door open and the books etc put away on a table.

He spent all day thinking Moxie was an evil genius who built herself a nest to sleep in. I was loathe to disillusion him.

Comments

2011-01-17T23:29:00.005Z

I've had a (mostly*) overwhelming response to my OMBH post, but one of the comments I have to share with you all. It absolutely floored me. I just had no idea that there were places in the world where people who had no knowledge of disability (ie no disabled family or friends) could think this way about it:

Whenever I see our neighbour's wheelchair-bound daughter across the street being ferried somewhere in a taxi I know is paid for by mine (and others') taxes, it makes me proud to be living in a somewhat decently civilized country.

That's from someone in Finland. And I'm still floored by the fact that it floored me. Surely that should be a normal response? How the fuck did we manage to mess up our society so badly that that seems so abnormal to me?

*Surprisingly, only two trolls. One that didn't even read my post! Replied with 'tl;dr, what's your problem? You're ill? With what?' - I wasn't entirely sure how to respond to that.

One Month Before Heartbreak

2011-01-15T17:28:00.004Z

If you guys were wondering why I hadn't blogged about this yet - it's because you're wrong. I have done. Just not here.

I posted a ginormically long journal on dA about it, as I figured posting here would be nothing more than preaching to the choir.

Response has been pretty good so far. Y'see, none of the people over there had any idea about any of this, and are quite frankly appalled that this could be happening in civilised society. Many petition-signings going on! Yay!

Short Update

2011-01-12T03:45:00.002Z

My Aunt was diagnosed with breast cancer over a year ago. It was in early stages, responded to chemo and went into remission. Apparently she found another lump just before Christmas and it was confirmed that it had returned but she held off on telling anyone until after New Year's so she 'didn't ruin anyone's holiday'.

All I can think is how horrible her holiday must have been trying to deal with this all by herself. Suffering in silence sucks, big time, and I just wish she'd have told us when it happened so I could have given her a big spoonie cuddle and made sure her Christmas was extra-awesome.

I'm Going Crazy

2011-01-07T19:00:00.002Z

OWWWWWWWWW.

+Yaaaaaaaaaaawn.

^Pain and fatigue. That is all my life is.

I missed a doctor's appointment this morning because I just could not make myself be awake for it. I'd care more if I thought there was any chance my doctor would have gotten me some painkillers but all I can think is 'At least I didn't hurt myself walking down there.'

When I DID wake up the first thing I did was read news and blogs and catch up on current politics, as I do most days. Then, as I do most days, I cried and settled into a slump of depression and was unable to do anything for hours.

My mental health can't take knowing what the government's doing, but I can't bear to NOT know. I don't want it just sprung on me all at once later, but the constant barrage of assaults on equality and justice are slowly eroding my sanity.

Quests, Insomnia and Diary-Novels.

2011-01-04T03:31:00.004Z

Me and Rambo have a new system. I've been setting him quests to do housework, that turn in for shitloads of gold on warcraft.

My house isn't looking even slightly clean yet, but the laundry pile is slowly going down and I've not felt guilty for not doing things in days. In fact, I've spent the time he's been doing things making gold on WoW, and feeling like I'm actually doing something useful and productive as that gold will buy me more housework.

I'm also very nearly NOT acutely ill again, so things are looking up I guess. Yay.

Also, whilst lying in bed being all insomniac-y last night, I was thinking about my NaNo-novel and the horrible pacing problems I was having with it. May have a solution. The problem was I was trying to put an entire condensed lifespan into one novel, and the rush of years going by and then slowing down for a day or two for specific events was making the whole thing crazy and nonsensical. It sort of worked for the narrative voice, but the close third person when it slowed down just seemed like too much of a jumpy transition.

Possible solution: Diary.

Pros:

-The choppy nature of my pacing makes perfect sense with a diary. SO many people write in them for a few days then forget for a few months, or just make a habit of writing in them once a month. Easy simple solution for the passage of time.
-I get to be all comfort-zoney first person. Woo!
-I can go on for hours and hours about feelings without feeling like* I'm dragging the whole thing down and having to find a way to transition back to action. Big win for literary fiction!

Cons:

-No narrative voice. This sucks in early stages when main character is five years old and doesn't really understand what's going on. If she doesn't understand it I can't write it. I can just heavily imply.
-Again, for early stages, having to write from a child's perspective means figuring out what kind of a vocabulary and writing style a child would have at any given age. Then adjusting for extra intelligence and bookworminess.
-It's a fucking diary. How cliché and teenage-girly is that?

Pros and cons seem to be about even at this stage, but I honestly can't see another way around my pacing problem. Although I'm sure I've read books in the same vein that HAVE handled this problem. Well enough for me to not notice it was a problem, and therefore not remember how they handled it. I maybe need to dig up these books and re-read.

*Did it again. Not sorry.

Yay for being ill?

2011-01-01T20:56:00.002Z

I'm actually sort of happy that I'm ill because it means I'm barely eating anything, which means the food in the house will last far longer, which means I don't have to spend money on groceries for a while.

^The fact that I can say that and be completely serious about it worries me.

I've worried myself a few times like that, actually. For instance - in order to go out Christmas shopping or get to the post office or go to the Goddamn CAB so I can get my benefits sorted out, I have to get a bus down to the precinct. I'm reluctant to do this because the bus fare is roughly 6 meals worth of money and it just doesn't seem worth it.

When you count money by how much food you can get with it, that's worrying. When you lose your appetite and are happy about it because it saves you money, that's worrying.

I reiterate, guys, welfare is NOT a lifestyle choice. This is not any kind of 'life'. This is existing, and struggling to do that.

Puppy Getting HEAVY

2010-12-29T02:23:00.003Z

I just had a bit of a mental breakdown, and whilst I was sat there crying hysterically I realised that the monologue in my head* might actually make me feel a little better if I actually SAID it to someone, or typed it at least.

Anyway, here's what happened: (Not the answer to the whole 'oh shit what's wrong?' question, but the answer to the 'what little thing happened that made you start crying which then made you think of all the other shitty things which perpetuated the crying and turned you into a hysterical sobbing mess?' question. Which is a far better question. Why does no-one ever ask THAT question? I don't care if it's wordy; I like wordy.)

I got up to go to the loo. There was a puppy downstairs, but she's always intrigued by the noise of people moving upstairs, even if it's only down the hall, and there was an open packet of cookies on my bedside table. It wasn't within easy reach and puppy KNOWS not to EVER take things off of tables/desks/etc, but the cookies were too tempting. I should have known this because she stole one earlier when I got up to go to the loo***. I come back, see her with her head in the pack of cookies, shout at her (which hurts my throat), grab her (which dislocates a shoulder and subluxes a wrist), she squirms, I keep hold of her (subluxing the other wrist and an elbow) and throw her out of the room (not quite literally, but still getting the other elbow). Then close the door and collapse sobbing against it because both of my arms are just huge masses of PAIN and WRONGNESS and I have no idea how to go about setting them to rights when both of them are so completely dead and I'm so weak and ill and crashing and I'm already in so much pain and the stupid fucking thing about putting joints back in the right place is that you have to put yourself in MORE pain in order to FIX the pain and it's all just so ridiculous and overwhelming and I don't know how to deal with it and I HATE putting myself in pain and WHY exactly haven't people prescribed me any working painkillers yet? Then the hyperventilating hysterical sobbing hurts my throat and my ribs and I tell myself to suck it up and I fix all my joints because I know damn well that the longer I leave them the worse they'll hurt and the more likely they are to cause some sort of permanent damage so now matter HOW bad I hurt I can't just sit there crying like a baby; I have to be all grown up about it and fix it.

I fucking hate that. I want to be able to break down and CRY dammit. Except I don't, really. Want to cry, that is. Crying sucks. It's given me a headache and made my throat worse. What I want is to not feel so goddamn helpless that I feel the need to break down and cry like a baby. I HATE being so broken and I HATE being so fucking dependent on someone else to take care of me. And I was HOPING to be able to look after myself for the rest of the night until I'm able to fall asleep but I'm fairly certain my chances of that just went out the window and now I'll have to wait on someone else's fucking convenience in order to get drinks to soothe my goddamned throat.

I have no idea how I'm going to manage getting up next time I need the loo, by the way. All that sitting against the door seems to have killed my back, which doesn't help me with walking, and the crying made the lightheadedness worse, which also doesn't help with walking.

Fuuuuuck.

EDIT: Yup. Depressing moment there. First ever 'I need someone to help me go to the loo' moment. The shoulder that dislocated is none too happy about it, despite being fixed now, and I can't reach down with that arm, nor could I bend forwards without hurting my back and shoulder blade, so I couldn't actually pull my pants down myself. FML. Although, less FML than all the carer-less disabled people out there, who I'm feeling extra sorry for and depressed about at the minute. Because if it wasn't for Rambo...I don't even want to think about that. It's a horrifying and disgusting thought, to be honest. I'm going to go back to crying for a little while.

*I do that all the time. A constant attempt at explaining myself to other people from the rational part of my brain. Except it never gets said to said other people** and then I forget about it. And it's not explained and they don't understand and I don't feel any better for it.

**I'm sorry if I occasionally write confusing sentences like that. It's a poetic thing that creeps into my prose which I've always enjoyed because I have a thing for word-play, but other people like to shout at me about. Fuck off, I like it.

***My throat is on fire, so I've drunk about 10 cups of water today, and 4 or 5 cups of hot blackcurrant/lemon/throat-soothy-mediciny stuff. I have a weak bladder. I've been running back and forth from the loo all day, despite the nearly-fainting-ness that accompanies standing up when you a fever and POTS. I've not fainted. Yet****. Fingers crossed.

****Actually, now that I think about it, I don't think I've fainted once since we worked out what was making me faint. I still FEEL like I'm going to all the time, but I know what causes it now and I'm so much better at recognising the signs and forcing myself to collapse on the floor if I need to in order to stop me fainting. I mean, I end up on the floor either way but the first is by far the better option.

Christmas

2010-12-27T20:28:00.000Z

Yay Christmas:
I love Christmas. Seriously, I'm like a little kid. I get sooo freaking excited counting down the days and hours and minutes until Christmas, and on Christmas Eve I was curled up in bed in my new pyjamas (family tradition, new pyjamas on Christmas Eve) before midnight because midnight is when Santa comes and he wouldn't come if I was asleep. Then I woke up at eight in the morning all bouncy and excited and woke Rambo up shouting 'MERRY CHRISTMAAS' at him until he got up to open stockings with me. Then I had to literally drag him round to my dad's house whilst he was still half-asleep and insisting that Christmas doesn't start until noon (SO wrong). But my little baby cousins are visiting from Spain so everyone around there was also woken up early by excited children and everyone was happy and excited and shouting MERRY CHRISTMAS over and over while we started on the drinking and drugs super-early in the day and handed out presents.

I love my family. My Dad's side of it, anyhow. Other people are always telling me how much Christmas sucks because they have to get all the family together and there's lots of tension and arguments and stress about the whole thing. Screw all of that. We have the happiest Christmases ever. Christmas is MAGICAL in my family. I LOVE CHRISTMAS. I'm actually depressed that I have to wait a whole 'nother year until next Christmas. I want to do it all again NOW.

Except I can't, really. Christmas is a spoon-sucker. I do the whole thing fueled entirely by my child-like wonder and excitement of Christmas and shove everything else aside for the day so I can be happy, and then I crash pretty hard on boxing day and I've been in bed since early yesterday evening and don't plan on moving until tomorrow.

Oh well. So freaking worth it. :)

Awesome things I got:

My sister knitted me some purple armwarmers. Just the right size to hide my tubigrips. I LOVE them. I know it's only been two days, but I've not had a single 'what did you do to your wrist?'/'OMG what happened?' comment in those two days. Loving it.

80k got me a moonkin hatchling on WoW. She is so cutes. Extra-cutes with mommy boomkin and baby boomkin flapping her wings trying to fly. <3

Rambo tells me there are books in the mail. I'm counting that as an awesome thing even though they're not here yet because otherwise this list is depressingly short.

Depressing things I shoved to the side for the day but kept attempting to intrude on my Christmas-happiness anyhow:

Rambo's aunt was diagnosed with breast cancer a few weeks ago, it's spread to her bones and she's starting chemo on Thursday. He's pretty upset about it. I don't know her all that well but I'm suddenly feeling a spoonie-bond towards her that I'm not really sure I can act on as his family doesn't really understand my spoonieness and would just be offended that I would try and compare what I have with cancer. Which isn't what I want to do at all, I just...I can relate to her, is all. And I want to put some kind of spoonie-care-package together. I'm just really not sure how his family will take that. They're already pretty judgemental of me. But it's not about me, it's about making her feel better, so I should just suck it up. Right. I'll get right on that.

Friend of mine left her husband on Christmas Eve as he was gambling and drinking etc and she confronted him about it and he tried to blame it all on her. Said that caring for a disabled person made him do it. Fucker. She deserves so much better than that. But she can't care for herself and what a horrible time to be alone and I'm so mad at him and so upset that I can't help her, even though she's not that far away, because I can't care for MYSELF let alone anyone else and I couldn't possibly ask Rambo to do that for me. I just hope her Christmas wasn't as horribly depressing as I'm imagining.

Whining:

Dad's side of the family is awesome. My Dad himself is awesome. His choice in girlfriends not-so. She's one of those people who obviously doesn't like you and is quite judgemental of you, but won't ever say anything to your face. I hate that. I just get nasty looks from her constantly, and then my sister telling me later on what she's been saying about me behind my back. Ugh. She's also one of those people who thinks that looks and clothes and make-up are everything. And spends ridiculous amounts of money on those things, then whines when she can't afford bills. Anyway, the whining here is the fact that she's in charge of the Christmas shopping for her and my Dad, so he doesn't really get a say in it. So my presents from the both of them consisted of make-up (not even make-up that I might occasionally wear, like eyeliner or mascara, but lipstick which I absolutely abhorr), a PINK coat (seriously. Pink. Wtf?), a stack of pretty notebooks which are sort of an okay present in that she's put slightly more thought into it than the others and realised that I like to write, but is just depressing because I can't physically write with pen and paper, my wrists haven't been up to that for years, and insulting because she KNOWS that, but she thinks I'm faking. Oh, and some ten year old video games that I already have. Woo. She also got Rambo some xbox live points. He doesn't have xbox live.

I hate to whine about presents, because it's the thought that counts, not what you actually get, but she's so obviously not put any thought into them and it pisses me off because I put so much thought into hers and got her awesome things that she loves and has been playing with pretty much since she opened them. I also talked to other people about presents to make sure I wasn't duplicating anything, like those old games. Also pisses me off that for the last few months she (along with other people) have been shouting at me not to buy myself anything because Christmas is coming up and I should just put it on my wishlist so that it can be bought for me. I made a wishlist and the only thing that got bought off it was for my Dad because he saw one of the games on my list and went 'oh that looks cool'. Great. I wasn't expecting anything big or expensive or anything. I put tons of little cheap things on there that people could buy me and that I would have been really happy with. Things that I needed, like a new laptop mouse because mine broke. And they were all so fucking insistent that I couldn't buy myself a new one, so I waited a month without, with the touchpad driving me crazy, and now I have to go buy my own anyway.

WoW Idiots, part 2

2010-12-09T16:59:00.002Z

Exhibit B:

I'm not sure whether to call these guys idiots or not. They're fucktards, for sure, but it was some quite genius trolling. Or griefing, rather.

I joined a dungeon queue as dps, took a while to find a group, as usual, then got in with two other dps from random servers and a tank and healer from the same server, who obviously know each other.

Nothing unusual so far. Everyone says hello and picks up the quests at the start of the instance, then the tank pulls a hell of a lot of mobs and we start pwning the crap out of them. Awesome. We got a rhythm going; we don't stop for nothing. Pull pull pull pull pull pull. Getting the next group before the first's dead. A patrol walks into us, I start shooting it to get it off my healer and we beat the crap out of it as we have done everything else so far.

Here's where things start to go wrong. As soon as we're done killing that pack the healer and tank both immediately start screaming 'OMG FUCKING HUNTER' 'WHY U PULL NOOB HUNTER?' 'LOLOLOLOLOLOLOLOL'. Interesting. I 'o.O' at them and assume(hope) they're joking. The false sense of security they've lulled me into is enough for me to give them the benefit of the doubt.

Next pack. Another two-mob patrol. The kitty druid picks it up before the tank. The tank and healer start screaming 'OMG FUCKING NOOB DRUID' 'LOLOLOLOLOLOLOL' but don't actually help out at all. I help the druid out but with everyone else just standing around watching us we both die. Then they kill it. Whilst shouting 'ANOTHER ONE BITES THE DUST!'

Only a couple of packs before the boss. Tank pulls them both, then just stands there doing nothing whilst we dps. Aggro everywhere. Mage dead, druid dead, I feign death but my raptor dies. Tank and healer still shouting 'ANOTHER ONE BITES THE DUST!' and 'LOLOLOLOLOLOL' every time someone dies. Wonderful.

The two of them kill those packs by themselves as we run back.

Enter boss room. Tank pulls by body aggro and nothing else. Stands there and waits for us to dps and get aggro. We're not that stupid but I don't want to be here forever so I send the pet in and wait for him to get a bit of aggro before we start up. He's not a tanking pet but he does alright. I keep getting aggro and having to feign and the druid and mage both get themselves killed (to choruses of another one bites the dust, naturally). Raptor eventually dies when the boss enrages as he can't take the beats with just my heals anymore. Now when I feign it goes onto the tank, who still only has the tiniest margin of aggro. Just a couple of sword swings to make sure it stays off his healer. Tank takes the boss over to where I'm feigned so I start taking aoe damage. Fucker. I move off and start ressing my pet but the tank keeps following me. I manage to get the res off though, healing potion, get the pet back to tanking so the tank can't follow me around with the boss, bandage myself, and proceed to beat the crap out of the boss.

I kill him, woo. I should also probably mention that both tank and healer have been needing on every drop this run, and the awesome hunter loot the boss drops is no exception. Priest wins it. Fucker.

I leave the group, and immediately jump back in the dungeon queue to find the same tank and healer, with two random dps. I feel sorry for those poor dpsers but I'm not surprised when they don't listen to my warning. I leave the group as I can't deal with ANOTHER of those runs, and use my cooldown time to write this up.

UPDATE:

Ran into them AGAIN. Decided not to say anything in hopes that they wouldn't recognise me and we could all just play nice for this instance. First few packs go alright, as before. Then there's some aoe damage and the dpsers just bandage themselves for a while, but get sick of this pretty quickly as you can't really do all that much with bandaging, and the rogue decides to ask for a heal.

All hell breaks loose.

The chat is spammed with caps 'BLASPHEMY' 'FUCKING WORGEN' 'FUCK OFF NOOB' 'NO HEALS FOR U' etc etc, whilst the tank pulls the next pack and just stands there while the dps get beat up and not healed by the healer. Fortunately, us dps kick ass and didn't need their help. It just would have been nice.

Anyway, rather than just going 'wtf?!' at all this, the rogue decides to ask why he can't get a heal. Turns out, these guys are from an RP server and are RPing as racist dicks. Near as I can make out. Apparently they hate worgens.

That's some epic troll/griefing right there.

Rambo Sucks Sometimes

2010-12-04T13:46:00.001Z

I was trying to be organised on Thursday and get some things sorted out. There are a LOT of things that need sorting out and I have a craptastic memory, so I made a list and then showed it to Rambo saying 'We need to do these. Preferably today.'

He thought I said 'YOU need to do these' and was quite happy about that, saying it was no problem and he could do everything on the list today. I was a bit miffed - I'm not THAT demanding and it's a bit bitchy to give him a huge list and expect him to do it all. I didn't, but the fact that he's so unfazed thinking that I did that upsets me in a 'how could he think that of me?' kind of way. I explain that I said 'WE' need to do them and he goes 'oh okay' and we start discussing what I can and can't do on the list.

One of the points involves a phone. Specifically, calling the bank about getting a new bank card as Rambo lost ours (it's a joint account, but he lost his card, then repeatedly stole mine because he couldn't be bothered to get a new one, then lost mine). I, due to social anxiety and brain foggy cock-ups with conversation and asperger-like problems, really really hate phones. Really. I'm sure I've mentioned before that just the act of picking up the phone and trying to dial a number often sends me into panic attacks and tears. I can't deal with phones.

This always pisses Rambo off, because while he's quite understanding about my physical problems, he's not so good with the mental. His entire family is of the 'mental illness is a sign of weakness, anybody can overcome it just with willpower' way of thinking. He tells me at times, when I'm upset, that it's my fault for choosing to feel that way and nobody can force me to be upset, it's all down to me.

So when I try to get out of doing that particular chore on the list, he gets quite mad about it. Despite being quite happy five minutes ago to do EVERYTHING on the list, he now thinks it's incredibly unfair for me to not want to phone people. I offer to do other things instead but this just makes him madder as the things I'm offering to do instead will hurt me physically and he thinks I'm choosing to hurt myself. I try to explain that the phone will hurt me mentally so I'm not choosing to hurt myself over not hurting myself, just choosing the hurt I find easier to cope with. He's still mad about it, and starts telling me that surely I'd recover from the mental hurt easier.

Then we started arguing over other points, one of which was writing a letter to certain benefits people. I explained that I have a lot of difficulty with writing and asked if he could do that one, and he explodes in an angry rant about how writing is what I DO for God's sake. I can't get a word in edgeways for a while but when he eventually shuts up I tell him that that's all well and good and if he got me a printer I could write as many fucking letters as he likes, but until then I still can't physically put pen to paper. He concedes and tries to write the letter, but fails so miserably at having legible handwriting that I have to take over. And end up in tears from the pain.

Anyway. I do all my chores. I (half-)write the damn letter and walk the dog and put some laundry on and put clean dishes away and collapse and can't do much else because I'm completely out of spoons. Rambo washes some dishes and ignores the rest of his chores to play video games.

He didn't even wash the things I needed to make dinner. Siiiiigh.

Idiots

2010-12-03T03:13:00.001Z

The problem with playing WoW again is that it reminds just how full of idiots the world is. I mean, I know it's full of idiots, but WoW likes to shove that fact in my face. Some of them even manage to subtly hide the fact so that you give them second chances and the benefit of the doubt. Those ones are the worst.

Exhibit A:

Warrior joins our party as a tank. As soon as he joins, he says 'I'm not a tank by the way. We don't need a tank.' (grammar fixed by yours truly, of course). Now, to me, that statement could mean one of two things. One - he actually knows what he's talking about and is used to iron-manning instances. I approve of this scenario. It signals fun times. Or two - he's a fucking idiot.

My gut instinct says number two. Especially as this is a PuG and you don't just jump into iron-manning with people you don't know as there's bound to be idiots. Like this guy. Ahem.

First few trash mobs go okay. Then we jump down to the next part (Gnomeregan, by the way) as the warrior's all 'OMGZ I NOES A SHORTCUT' (grammar messed up by yours truly, to emphasise stupidity). Fair enough, we usually jump down here anyway. Except the warrior misses the giant cog thing you're meant to land on, and instead lands on a mob. Okay, it's just one mob. The rest of us jump down to deal with it. More patrol into us. Tank not being a tank, he ignores 'em. Other people ignore 'em too. They all gang up on the healer. That's me. Ow. Fine, I heal myself AND the warrior for a while figuring he can take these guys off me once the one he's fighting dies. No dice, because when that one dies he decides to pull the boss. I'm still fending off two mobs and trying to heal him as well. I'm failing quite badly. I don't have very many panic spells at my little level and the only one I have will make things worse in this room (fear) so I just try to heal us both until we all fall over and die.

Then the warrior screams 'OMGS Y NO HEALZ U NOOB'. I explain that I can't heal whilst being beat in the face, and a tank would have been quite helpful in that situation. He laughs at me.

I leave the party. Now I have a deserter debuff thanks to that idiot.

More exhibits will come as they happen. My memory sucks too badly to give you a good account of any of the other hundreds of millions that have happened already, unfortunately.

Rheumy

2010-12-01T12:48:00.004Z

Woke up bright and early at 8am* as I had an appointment with new Rheumy at 10 and there was no way in hell I was missing this one.

In keeping with the no way in hell I'm missing this one plan, we arranged hospital transport weeks in advance, as we had the last three times, but we'd also called up every single day for the past week just to make extra extra certain. They probably got quite annoyed with us, but missing appointments has been driving us crazy. Seriously batshit crazy.

Dressed and ready to go by half 8. Wheelchair bag packed with snacks and books and laptops etc in case we have to wait around for hours - we may not have done a Rheumy appointment before but I've had appointments with specialists in hospitals. I know damn well that I need to bring a book.

Start to get worried about transport again at 9. Call up. Again. They insist that the transport is on its way to us. Okay.

Getting bored of waiting. Go to check the mail, see if there's anything interesting. Doubt there will be. Oh wait, what's this? A note from the hospital's ambulance service. Remarkably similar to the Royal Mail 'you weren't in' card. With a ticked box saying I refused transport at 8:41am this morning.

I'm very confused by this. I certainly did not refuse any transport. I assume they mean I didn't answer the door. But in order to answer the door, they have to make some sort of noise to let me know they're here. I've been sat waiting and ready to go since half 8. In the living room. Mere feet from the door. It's half 8 in the morning, there's no noise going on that could possibly cover the sound of the door knocking. The doorbell's broken, but has a piece of paper taped over it to point this out to people.

Obviously, ringing doorbells through taped bits of paper and not knocking at all is the best way to go about things. I'm not that surprised; Royal Mail seem to think along the same lines**.

Fortunately, in the spirit of 'I AM NOT FUCKING MISSING THIS ONE' we are prepared for this eventuality and have money and the number of a taxi close at hand and ready to go. We can't exactly afford a taxi but fuck it, someone can miss out on a Christmas present for the sake of me not fucking missing this one.

Taxi gets us there with ten minutes to spare - despite the icy snow-covered roads that nobody in England is either prepared for or capable of dealing with***.

Finally at a hospital on time for an appointment with a Rheumatologist. Fucks yeah! Head to reception, check in, she starts going over things and asking me questions (GP's name, next of kin, ethnicity, religion, confirm my address etc etc) that were on the form I just handed her. The form that was sent with my appointment letter which stated very clearly in big bold letters that I absolutely MUST fill it in. Which I did, painstakingly (I don't think I've ever seen that word used quite so literally before). Little upset that I hurt my wrist so badly for no reason but oh well.

Wait around for an hour before my appointment. That's alright, we came prepared. I have a book and a bag of crisps and we have change to get hot chocolate with. Yay hot chocolate! Rambo gets a newspaper too, as he forgot to bring a book. He gets so engrossed in this paper that when my Rheumatologist comes and calls my name he doesn't hear it. I do. I wave at the doctor, and try to get Rambo's attention so that he can wheel me over, because we came in the wheelchair today to minimise my breakage and my wrists are too screwed up already this morning for me to even attempt pushing it myself. Eventually get his attention, but am very embarrassed by this point because he's waiting for me and I can't move to go to my own appointment! Oh dear.

Rheumatologist (totally needs a blog name, by the way. I'm thinking Snowdon. It is the tallest mountain in Wales. That has nothing to do with how he got the name. In case you were wondering.) tells me he doesn't really have any of my files or history, just a little note from my GP stating 'probably has Ehlers-Danlos'. Great. That's fine. I'm prepared for ANYTHING today. I'm like a fucking boy scout. I pull out my laptop, open up the symptom log I've been writing in for a while that just happens to have a list of my family medical history and all my medications and previous diagnoses. Snowdon is all 'wow this is super helpful' (except not as sarcastically as that comes across in writing) and sits there reading for a bit. And then asks me to email it him and gives me his address. I do it as soon as I get home, because there's no wifi at the hospital. But anyway, back to appointment. He reads all my symptoms and history and meds and goes 'It's pretty damn clear that you have hypermobility problems. And you seem to know that anyway.' and asks me to come into the other room for examinationess (so not the word he used. I forget what exact words were used.)

In the other room, he asks me to show off my hypermobility. I quickly run through the beighton scale, getting an 8/9 as always, and explaining that my sister can't do the 9th of touching the floor either. Apparently it's because she has short hamstrings. I'm fairly certain that's the reason I can't either as it hurts my hamstrings like hell to try. He then asks me to show off my other hypermobile joints. I look at him confusedly. He rephrases and tells me to show off bendy party tricks. Aha. Now I know what to do. I do the weird twisty finger things. I stand with one foot facing forward and one facing backwards. He asks about shoulders and ankles. I've never done party tricks with these. I just start twisting in random ways, arms up behind my back to bend my shoulders, wondering whether this is actually past normal range or not. He laughs and tells me I'm most definitely hypermobile in all my joints and I can stop it now. Then he pokes at my fibro tender points a bit. Fucking OW, dude. Seriously. Tender points are TENDER.

Then we go back and sit down and we talk about my diagnosis and treatment etc and he starts trying to tell me that there's a thin line between Joint Hypermobility Syndrome and Ehlers Danlos Syndrome and no genetic test for either but he thinks I fall on the Joint Hypermobility side rather than the EDS side. I try to explain that specialists have been arguing that these two are one and the same for years and it was actually officially decided earlier this year at the HMSA conference that they are in the fact the same diagnosis. He ignores me and carries on faffing over which one, then contradicts himself by saying that it doesn't really matter anyway as treatment is pretty much the same for both. THEN tells me that just in case it is Ehlers-Danlos (ORLY?!) we need to check for vascular symptoms. Books me an echocardiogram. And some blood tests, just as a 'background check'. I dunno what that means. All it brings to mind is background anti-virus scans. I am not a computer. I do not need background checks. But whatever. My GP and I go through this twice a year just to check I've not gone and developed Hypothyroidism while she wasn't looking anyway. I'm not afraid of blood tests. Just slightly annoyed by them because, being an EDSer (with an actual diagnosis now!), it's damnably hard to take blood from me.

Bad side-track. He was booking me for tests and discussing diagnosis. Right. He also talked about secondary diagnoses and started explaining that they were all caused by the EDS and the pain, even the mental problems, and I'm just staring at him blankly because...DUH. That's what secondary fucking MEANS. But let's carry on with the pretending I know nothing, because all doctors like to think that, and it's just easier to not rock the boat. I kind of want to chase a POTS diagnosis so that I can get some pills to attempt to control it, but as soon as I mention my Postural Hypotension diagnosis**** he again starts telling me that this is just something that naturally occurs in patients who have muscle and joint problems and therefore aren't very active. All very well, I say, but I've had these problems since I was a little kid and was much more active at the time. Plus, you know, there are medications I can take that will help this! He ignores me.

We start talking about pain management. I ask about a pain clinic. He explains that there are two kinds - the kind that throw drugs at the problem, and the kind that try to help you manage your pain. There aren't very many of the latter, so he doesn't want to refer me to one. He doesn't like the idea of throwing drugs at me. Neither do I, really, as drugs don't seem to help. But I don't particularly like writing off the whole idea of pain clinics just like that. Plus, maybe there ARE some drugs that will help me. I know a lot of bendies with painkillers that actually work, they just had to try five million different kinds before they found those. I can do that! I don't mind! But the only drug he will discuss is Amitryptiline, which I've tried and it a) didn't help at all and b) had terrible fucking side effects. He insists that the side effects will wear off eventually and I should try it. I tried it for a month. I cannot stand those side effects. And even if they do wear off eventually, what the fuck is the point when their MAIN effect doesn't work? Whatever. I explain that my sister had the same problems as me on Amitryptiline but was moved onto Nortryptiline and seems to be finding that one a lot better. He says 'ok, we'll try you on that' but doesn't actually write me a 'scrip for it.

Then he tells me I'll get appointment details for an echocardiogram through the mail. As well as the results of the blood test, and sends me on my way. Okay. Fair enough. I'm not sure I can take any more pandering to doctors today anyway.

Go see the nurse instead to get blood taken. I warn her I'm going to be very awkward to take blood from and she's going to need to use a small needle. She laughs and thinks I'm exaggerating. Haha. No. Takes her fifteen minutes to find a vein with us joking about my lack of them the whole while. She does get the blood first time though when she eventually finds it. Good on her. Last time I tried to get blood taken at a hospital it took four hours of three nurses and one doctor poking blindly into both my arms and both my hands before they eventually gave up and sent me back to my GP. Who got it first try. Now I have two nurses I trust to take my blood. :)

Anyway, she does manage to take FOUR VIALS of blood. Which takes a long time, because even if you manage to find a vein my body just starts laughing at you when you try to take more than two vials. The blood's literally spluttering out of my vein with its laughter. I'm sorry if that image was gruesome. But that's what it looked like.

Then we go home. And I'm broken all over by now from all the poking and prodding and showing off and the low blood sugar/pressure. And I need food and I can't make food because I'm not so good with the standing up and Rambo has to go back to work. And I try to write but my wrists are too broken. And it's now seven hours after I got home and I'm just about finishing. In a rambling rush that makes no sense because I just want to be DONE so I can hit post and go rest. You probably recognise this from the few other long posts I've done - they peter out into nonsense and blah blah blahs by the end.

Oh, and then just now the postman delivered a big huge box from Waterstones and even though they're meant to be Christmas presents I can't help grinning with glee at the huge pile of books next to me. It's amazing how much better a pile of books makes me feel. Especially as I'm not really allowed to read them. That's just odd.

*I say bright and early, but it wasn't really. That is a very sort of chirpy happy phrase that implies I was awake awake. I was not. There was much stumbling, fumbling, bumbling and confusion.

**Much hatred to Royal Mail over that fiasco. Had a parcel sent via next day delivery on the Monday. Waited in all day Tuesday for it. A few feet from the door, taped-over doorbell, no noise. No card, no nothing. Waited in all day Wednesday for it. A few feet from the door, taped-over doorbell, no noise. 'You were out' card. NO I BLOODY WELL WAS NOT OUT. Arrange a redelivery for the Friday. Wait around all day on Friday. A few feet from the door, taped-over doorbell, no noise. No nothing, no card. Wait around all day Monday. A few feet from the door, taped-over doorbell, no noise. 'You were out' card. Dated for SUNDAY with a 'please collect' written in the notes section. Try to call someone about it. All the 'customer service' lines have robotic menus and nothing else. Menus basically allow for you to arrange a redelivery and nothing else. Eventually send Rambo down to post office to collect. Nearest post office being a bus ride and £4 away. I had 3 other Royal Mail deliveries during this time and no problem with any of them. Why did they hate on that one parcel so much? :|

***Seriously. We have about a third of a foot of snow at the minute. That is NOTHING. Any other country would be laughing at us if they realised just how little snow it takes to make the entirety of England BREAK DOWN. The British do not understand snow!

****Yes, I actually have that diagnosis already. Just fairly certain that in itself is a symptoms of the POTS but the doctor who diagnosed me with it didn't check for that. Or tell me anything about it. Or offer me any pills or management options. Just said 'This is what you have. You are going to faint when your body temperature's slightly above normal and you have the audacity to try and stand upright. Deal with it, bitch'. Except not in those words, obviously.

INVINCIBLE

2010-11-25T20:43:00.003Z

So I was watching the latest House and (OMG SPOILER!!*) his patient's daughter is all crying and telling her dad 'You can't die! You're my daddy!' and Rambo gets very confused and starts telling me that that logic makes no sense whatsoever.

I quite loudly and vehemently told him that it made perfect sense because DADDIES ARE INVINCIBLE and my Daddy can't die because he's my daddy.

Rambo decided that daughters are weird. I explained that it's not just daughters; Moxie knows he is invincible because he is her daddy. He didn't seem convinced.

Hrmmm.

*EDIT: I say spoiler even though it's perfectly common knowledge that House's patients are pretty much in constant state of 'terminally ill' and anyone who's ever watched an episode of House would know that - and anyone who hadn't wouldn't care - because occasionally people from TLR read this blog and there's been super-lots of drama lately about the 'no spoilers' rule.

Hint: It's common knowledge for anyone who's ever watched ANY episode that House's patients are in fear of dying. It's not common knowledge whether they actually die or not in any given episode. You don't sit there at the start of the episode and go 'oh I've seen this one! She dies!' do you? Well, maybe you do. If so, you're a bastard.

Along these lines - it's common knowledge that Harry Potter is a wizard. It's not common knowledge what happens at the end of the last book, no matter how long it's been out for. WHY CAN YOU NOT UNDERSTAND THIS!? COMMON SENSE. (and courtesy)

STFU

2010-11-21T22:18:00.002Z

You know what really sucks? Having someone from your past constantly brought up in conversation. With everyone. Complete strangers keep trying to talk to me (or in front of me) about some bitch I went to school with who made my life miserable.

Yeah, she's famous now. I don't care. She was a stuck up bitch BEFORE she got famous and it did NOT help matters. Kindly shut the fuck up about her.

Ganged Up On

2010-11-14T17:14:00.003Z

You know how The Music Man is a horribly bad influence on Rambo when it comes to video games? Well, about a week ago, he was back to stay for a bit (he's pretty much moved out to student housing in Crewe now but still back and forth for a few days every couple weeks and paying a bit of rent) and he's playing WoW on his laptop in the front room and talking to Rambo about it and I'm pretty much blocking it all out because I really couldn't care any less about WoW at this point - it's been a year and a half since I last played, it fucked my wrists right up when I did, I ebayed my warrior with all of her bazillions of pets and mounts and achievements that I'd spent years gathering, and I'm pretty sure that my account's banned from being connected to ebaying (I transferred the warrior onto a brand new account to ebay it) - but TMM somehow convinces Rambo to play again.

So there the both of them are, running instances and discussing all the changes that have occurred in the last year and a half since me and Rambo played and all the changes that will be happening come Cataclysm. And I'm doing my best to ignore them. And they're discussing all of these cool new pets and forcing me to look at the pretty models. And telling me how all of the tanks on their server suck these days and wasn't it awesome when I was tanking for them and they had the best tank on the server? And they're short on healers too, and I made a kickass healer.

And I'm ignoring them. And they're talking about my tree, who I do still have, unlike the tank, and I'm ignoring them, and they're spending hours playing WoW and I'm feeling lonely and left out. And I'm ignoring them. And they're telling me how my huntard can have 20 pets in the stable and 5 active now, rather than the 3 in stable 1 active she had last time I played. And I'm ignoring them. And they're telling me about all the new pets I can get in Cataclysm. And I'm ignoring them.

And then Blizzard sends me an email this morning offering me 7 free days of gametime if I come back before Cataclysm. And I figure they wouldn't have sent this email if my account really was banned. And I remember my password.

...

I'm up to 13 pets at the minute. I need to save a few slots for Cataclysm.

*sigh*

And I realised that auto-attacking on a BM huntard is actually easier on my wrists than writing. And this does not bode well for NaNo.

Day 13

2010-11-13T17:29:00.002Z

Okay, it's the 13th and I'm sort of vaguely starting to catch up. Wrote more than the normal daily of 1667 yesterday but not enough to meet my personalised catch-up daily goal of 2045 *sigh*

Anyhow, have some more stats:

Day: 13
Wordcount: 11045
Word wars won: 2
Ideas for new stories that will have to wait until December: 5
Cups of writing-juice (tea) consumed: 13
Days spent entirely in bed: 4
Days spent entirely in pyjamas: 8
Ready-meals eaten: 3
TV breaks (1 episode each): 17
Interesting new ways to procrastinate found: 10*
Random questions answered at the reference desk: 16
Declarations of 'Oh shit my wrists are totally fucked, I can't type anymore!': 28
Times shouted at puppy who so desperately wants to play: 3 (I AM ASHAMED!)
Times lied to get out of real life commitments: 1
Times tricked by NaNo forums into writing more: 4
Appearances of TSoD: 0
Appearances of Mr. Ian Woon and his alter-egos: 0
Unintelligible screams: 4
Dreams about NaNo: 1
Tears of pain: 5
Tears of failure: 3
Tears of depression brought on by MC: 1
Tears of unrelated-to-NaNo depression: 4
Days too sick/out of spoons to write a word: 6
Delirious ramblings: 4

*If you're interested, those are: These stats, NaNo forums, reading random people's synopses, helping code the NaNoBot on dA chat, Christmas shopping, givesmehope.com, fmylife.com, creating writing-music playlists, etiquettehell.com, hyperboleandahalf.blogspot.com

Unintelligible Screaming

2010-11-11T00:49:00.001Z

I've not really gone into much detail about The Mother on this blog as, well, thinking about it all invariably makes me cry. All I'm going to say is that she was verbally, emotionally, neglectively (is that even a word?) and even occasionally physically abusive. And neither me nor Sister have spoken to her in a good few years. No more details. Just yet, anyhow.

Aaaaanyway. In trying to find out things about our EDS, my sister decided to email her asking for our medical records and asking about our childhood milestones. Being polite, but formal, and in no way friendly or inviting her to suddenly start bombarding us with attempts at communication. She copied me in on the email, of course, and The Mother just hits reply to all. She always has done.

She sends us quite a few emails of inane, confusing, trying to get us to play into psychological games, mess with our heads kind of nonsense. Amongst all of that crap there was a very long email consisting of chilhood milestones and anecdotes. She touched on a few points that might be interesting so Sister replied and asked her some more about them. Her response, for some reason, broke down my defences of avoiding her games and made me cry. I should have just deleted the damn thing as soon as it appeared in my inbox, as Rambo told me to.

"You seem overly concerned about normal behaviour in childhood. Well statistics show that normal children have unhealthy diets and sedentary lifestyles. They are obese and don't like to run because their slack muscles aren't used to it. Your childhood was normal, if there had been a serious genetic problem someone would have noticed, you passed all your development checks. You have been an adult for a long time now. It's time that you faced up to certain facts and took responsibility for the choices you have made.

Perhaps you need some form of professional help to uncover the source of all this negative energy which is poisoning your life. There are plenty of self help books and support groups you could join.

You can't change your past. Shoulda, Woulda, Coulda little girl. You have to play the hand life dealt you. No take backs ok? All you can do is change how you feel about things. That may take some time, quiet reflection and support. When you are ready to learn the right teacher will appear."

And this was followed up with various links and nonsense about 'Moon Meditation' and 'the Power of Emotions'.

I just...I mean...we've both been displaying symptoms of this since birth, that should have been picked up on. I mean, they really, really should have. I would be horrified at a mother seeing the kind of things in her children that she did and not thinking anything of it. But then, I'm horrified at a lot of the things she did.

But anyway, the thing that made me cry (I think. I dunno, I cry at a lot of things) was that I just have an honest-to-God Phobia about people thinking I'm a fraud, now. Because of all of that nonsense. It sets me off on panic attacks that...well, to be honest, seem to be quite like autistic meltdowns in nature. I lose my ability to communicate, I burst into tears, my cognitive functions go slightly screwy in that odd way I have of layers of sound becoming overwhelming and I close my eyes and cover my ears to cut off as much sensory input as possible. If I'm alone or otherwise think I can get away with it - I scream my fucking head off.

I'm just...I'm mad at her. For not even understanding what she's doing to me. What she's done to me. She still sees herself as the angelic victim in all of this and can't understand how the things that she did were wrong.

I'm not going to tell you what things, but believe me, they were wrong. If any kind of social worker knew about them, we'd've been out of there in a heartbeat. God I wish I'd known about social workers when I was younger, or that this kind of shit was NOT normal.

I just needed to vent. Sorry guys.

NaNo-CLOWN

2010-11-10T14:07:00.000Z

Sooo. Just about recovered from Thursday's NaNo-meet by Saturday. But we can't be having that, so I promptly came down with the worst headache I have ever had in my entire life around midday. I went back to bed by 4pm because I couldn't stand it anymore and sleep is usually the best way to cure headaches. Usually. I slept for an hour, woke up still with the blinding not-being-able-to-move-without-feeling-like-my-head-has-literally-exploded headache. Slept for an hour. Woke up with headache and rather disorientated. Slept for an hour. Woke up disoriented, headache, throat starting to hurt.

It goes on like this for a while, symptoms gradually getting worse until 10am the next morning. I managed to sleep a grand total of 16 hours (I'm assuming 2 hours total for all the little being-awake parts added up). I wake up confused and disoriented, have a coughing fit which sets off such an explosion of headacheyness that I get all lightheaded and woozy, adding to the confusion. Also sets my throat on fire.

Anyhow. Point is, I have a nasty sinus infection. I'm on some antibiotics for it now but it's nowhere near better yet and the confused-disoriented-lightheaded-woozy state is getting a bit silly. Case in point - in my delirious lightheaded state last night I suddenly started seeing a golden aura around Rambo. I suddenly understood all those weirdos who see auras; they're all just woozy and dealing with slight double vision! I was so amused by this that I looked up what the golden part meant and discovered that Rambo is under divine protection! But surely that can't mean God, as God doesn't exist. And surely I protect him from a lot of annoying people, so therefore I must be DIVINE.

Yeah, I really don't want to continue NaNovel whilst I'm like this. It's meant to be depressing LitFic. I don't want clowns* suddenly appearing in it.

*Why clowns? BECAUSE I JUST REALISED THAT THIS QUILT COVER IS COVERED IN CLOWN FACES. Cleverly hidden, well-disguised clown faces, BUT CLOWN FACES NONETHELESS.

First NaNo-meet

2010-11-06T01:37:00.002Z

Went to my first NaNo-meet last night. Was fairly awesome. I'm not very good at this whole sociable nonsense and I was kind of dreading it whilst being excited about it but it wasn't that bad. I didn't manage to get any writing done because I was terrified of people looking at my screen and of course as soon as people realised this they started quite obviously staring and refused to look away. So they got a nice view of my desktop for a while. Which didn't help matters as I have it set to a NaNo calendar with some rather awesome writing and book-loving quotes on it so they were quite interested in reading it and refused to look away. Anyhow, I learned something yesterday - apparently it's socially acceptable to look at someone's screen but not to touch their laptop. I wouldn't do either, but I honestly don't mind people touching my laptop (though not the keys, without asking at least) but seriously freak out when people look at my screen. Apparently I'm a freak. Oh well.

Met a few cool people and made a few new friends. Was about the ratio of actual writers to retarded teenage roleplayers who think they can write that I was expecting though, unfortunately. But everytime the retarded kids tried to say something I just looked at (uhhmmm, just realised I don't have a blog name for her, but lets call her Green Python) and we both laughed and they got confused and wandered off. I was pleased by this. As was GP (Ooooh, bad name choice). This is her 8th time doing NaNoWriMo and apparently the last seven years the NaNo-meets have consisted entirely of idiots and she didn't bother with them after the first week.

I also met this primary school teacher (who I am going to call Trans-Dimensional Snail for reasons you will never understand). Teachers are awesome. I love teachers. Especially primary school teachers who carry stickers around with them for their classes. My laptop gained a new sticker. It is a tiger. The tigers are the best and only his favourite children get tigers *grins*. I have to write an extra thousand words over the normal word count goal to get a ladybird sticker next time though. I want the ladybird.

Anyhow, the meet was meant to be from 6pm to 8pm so at 8pm all the teenagers wandered off home, but that just meant all the interesting people stayed behind and I couldn't bring myself to leave them as I very rarely get to be sociable, especially with people who actually have similar interests to me rather than just obligatory sociableness with family*. I completely lost track of time as I was enjoying myself so much, and I wasn't the only one, and by 11pm or so people were getting phone calls from angry wives or just noticing that they have 13 missed calls and 5 messages that they hadn't heard because it was so noisy**. Oops. Most of them went home. Was just me, Green Python, Not-a-Knobhead and Fucking-DBA left. Bar decided to stop serving drinks around that time as well, but the four of us were still enjoying ourselves so much that we didn't want to go home so we decided to find somewhere else. I tell them I'll go if it's not too far and from that comment of course the whole spoonie-explanation-conversation ensues and we limp off to Burger King to get something to eat, with everybody walking ever so slowly for my sake and Green Python making jokes about the little old lady that she has to look after. They're all older than me!

Blah blah blah. Late-night Burger King is awesome. Realising that the night service bus only runs on Friday and Saturday nights rather than Thursday nights kind of sucks. Found myself stranded at the bus stop at gone midnight*** with six other people who also didn't realise that there wasn't a night service bus on Thursdays. Fortunately three of them were going to Salford so we all jumped into a taxi together and it only ended up costing a few quid to get home. They did make me (try to) run to get the taxi though and although I tried to explain that I really was going my absolute fastest and I couldn't move any quicker (not mentioning that my absolute fastest is ridiculously painful for me and trying to hold back tears whilst doing it) I got shouted at a bit. *sigh*

Point of all this rambling nonsense - meet-up was awesome but I'm overdrawn from the spoon bank and in ridiculous pain still and haven't managed to write a word since. Until this blog post. Which totally doesn't count. But is destroying my wrist nonetheless and I really need to fucking stop it.

*Although, socialising with writers is...uhh...odd, to say the least. We're all very interesting people who have a lot to say when we're talking about things we're interested in, but we're also all normally pretty unsociable. So when the conversation's flowing it's great but when the silence descends no-one knows how to break it and nobody cares for small talk. We were yo-yo-ing between the best conversations ever, friendly insults and in-jokes, to awkward silence. All night long. Was rather odd.

**For some reason we were meeting in Kro Bar, which is ridiculously expensive, really busy and noisy, has no plug sockets or free wifi, and really really really uncomfortable seats that I'm still paying for over 24 hours later. Green Python's going to organise us a write-in where she works from now on, so we can meet in a quiet place with tables and chairs and wifi and plug sockets and a kettle!

***Rambo was expecting me home about half eight or so, as I said it was meant to be going on until eight. He knew I was going without the wheelchair, and lugging my (pretty much lightest you can buy but still too heavy for me) laptop all the way there, and attempting to focus and be sociable, and would therefore be completely out of spoons by the time I got home, if not sooner. So, around half eight, he took the wheelchair and the puppy over to the bus stop and waited for me to come home. For an hour. Before giving up and going home and being upset that he hadn't been able to do nice things for me. And then dragging pillows and quilts downstairs, making up a hot water bottle and putting it under the quilt to keep it nice and warm for me. Remarkably, it was still warm and toasty when I eventually got home at one in the morning.

Day 2

2010-11-03T01:12:00.002Z

Or day 3, possibly. Technically. End of day 2, anyhow. Still 23 hours of day 3 stretched ahead of me. Have some random NaNo-stats:

Day: 2
Word count: 5421
Word wars won: 1
Ideas for new stories that will have to wait until December: 4
Cups of writing-juice (tea) consumed: 6
Days spent entirely in pyjamas, in bed: 1
Ready-meals eaten: 2
TV breaks (1 episode each): 5
Interesting new ways to procrastinate found: 2
Random questions answered at the reference desk: 6
Declarations of 'OMG my wrists are dying I can't type anymore!': 12
Times shouted at puppy who so desperately wants to play: 2
Unintelligible screams: 4
Tears of pain: 0
Tears of failure: 0
Tears of depression brought on by MC: 1
Tears of unrelated-to-NaNo depression: 1

NaNoWriMo

2010-11-01T15:41:00.003Z

This should cover it for the next 30 days:

I may post actual blogs too. I doubt it though. Already subluxed my wrist from all the typing.

I Hate Myself

2010-10-24T01:05:00.003+01:00

Seriously. Mucho self-loathing. Shall I enlighten you as to why?

...

Moxie kept shouting about various things. Rambo asked her why she felt the entire world needed to know about the injustices of her not being allowed a cup of tea. I made a joke that she should be on twitter, so she could inform the world of everything she wants to shout about. Rambo agreed with me, and convinced me to make her one.

...

Seriously. Moxie has a twitter.

MoxieThePuppy

Please kill me now.

Bleh

2010-10-19T16:08:00.002+01:00

I don't understand how the fuck I'm ever meant to get benefits sorted out when the very idea of wading through bureaucracy makes me burst into tears and they insist on doing everything over the phone. I cannot talk whilst I'm crying. It doesn't fucking work.

I'm so pissed off with myself right now because I've been trying to make phone calls for weeks now and every time I fucking try I end up crying before anyone even picks up the phone and then hang up as quickly as I fucking can.

I am actually, physically, SCARED of phone calls. That makes no fucking sense.

I am pathetic and I hate myself.

I NEED to get these sorted, my shortfall on rent is about £265/month at the minute and there's no way I can afford to pay other bills. I'm stretching it just buying food, and I've only been eating 1 or 2 meals a day for a long time now...

Trying to cope with low blood sugar and ridiculous tiredness and dizziness that causes probably isn't helping matters.

WTF

2010-10-13T11:44:00.005+01:00

Moxie's not quite house-trained yet. This is partly due to me not always being able to jump up and take her to the newspaper/outside when she needs me to and partly due to Rambo just watching her when she wees on the floor and going 'Ohhhhh Moxiiiieee...' but not actually doing anything about it so she thinks he's condoning it. And then not cleaning it up so the whole fucking house smells like a toilet to her.

I'm doing the best I can, when I'm able to, and cleaning things up when I see them, but I can't do it alone and I need his help. But every time I tell him that he goes 'Help? HELP?! You want me to do it all myself! That's not me helping, that's me doing it and you helping!' Because apparently he's incapable of seeing that I do things.

Anyhow, she's getting there slowly. She mostly goes on the newspaper and she won't go on carpet or furniture at all - just the kitchen and living floors that are easy to clean. She just gets confused about the rest of it. She's only three months old, I've known dogs take far longer to be house-trained, but it's pissing Rambo off.

So about last night...I had a dislocated ankle, was laid up on the sofa unable to move, and the house was pretty quiet. I worry about it being quiet when she's not in sight as it usually means she's found something out of sight to chew, so I call her. She doesn't respond. Rambo refuses to move because he's busy playing computer games*. Hour and a half later I get my ankle to stay in place long enough for me to hobble upstairs to bed, Rambo comes with me. We open the bedroom door to find a poor little puppy who managed to trap herself in there, tail wagging like mad as she's so happy to be free and have her people back. Problem is, as she's been stuck in there for an hour and a half, she's pood on the carpet. Not something she'd normally do and she was stuck for God's sake, but Rambo sees that, flips out screaming 'FUCKING DOG' at her and then KICKS her. With shoes on.

She yelps and runs to her mommy for protection, I scream at him, comfort her, and start crying. He cleans it up and storms off. Me and Moxie go to bed and I lock the bedroom door because people who kick puppies don't get to sleep in the bed with me.

...I then cry for hours, thinking about things. Rambo's always had a nasty temper and it's scary enough when he's just kicking doors and punching computer monitors and walls, but to kick the PUPPY? It's noon the next day and he's still not said a word of apology or to even acknowledge that what he did was wrong. I'm...not sure I can live with that. You don't kick dogs. You especially don't kick defenceless little puppies. What the FUCK was he thinking?

This is the first time I've actually seriously considered leaving him, and it scared the fuck out of me because there is no way I could take care of myself, let alone Moxie. I did it for that one week but I struggled so fucking much and I was only able to cope because I knew he was coming back and I could just ignore most things and leave it for him to fix afterwards. I can't go live with my Dad as there's no room. I don't really want to go live with anyone else as I'm pretty sure nobody else knows just how bad I am these days and they won't know what they're getting themselves into and I don't want to be a burden.

EDIT: He apologised, and promised to never ever ever do it again. He's not so great at keeping promises though, and if he breaks this one I don't think he's going to get another chance.

*Don't get me fucking started on that. He keeps starting up instances when he's in the middle of something like cooking dinner and then getting pissed off at me when an hour later I go '...weren't you cooking dinner? Shouldn't you check on that?' and shouts at me that he's busy, so I go check on the charcoal instead, get pissed off and make my own food. Now, I don't mind making my own food, but when he's cooking I figure I don't have to, and when he's cooking he usually makes the food that I can't which means I can't really take over halfway through when he decides an instance run would be more fun.

Poor Dogs

2010-10-08T19:43:00.000+01:00

I've always known that the vast majority of dog owners don't really know what the hell they're doing with their dogs, but it's been thrown in my face a lot more than normal since I've been out walking Moxie, and it's really starting to get to me.

Y'see, right now Moxie's in a rather rebellious stage where she's testing her limits - like a little kid that's just learned how to say 'no' to her parents - yet still, every single person she meets is amazed at how well behaved she is. Now, if I have to call her six times to get her to come back, that's not good behaviour. That's her deliberately ignoring me the first five times. She heard me, she knows what that command means, she was testing how badly behaved she could be before her Mommy got really mad.

But these comments of amazement are coming from people who have to keep their dogs on leads the entire time, because they can't trust them to be well behaved off the lead. News flash, people: Dogs do not know what is good and what is bad until you teach them the difference. You can't expect them to follow commands if you never teach them what the command means and if you only ever let them off the lead once in a blue moon of course they're going to take that chance to run amok - because in their experience the second they come back to you they go straight back on the lead and aren't allowed off for months. That's not punishing their bad behaviour, no matter what you might think. They don't connect the two. They just know that every now and then they're allowed to have some fun, so they make the most of it whilst they can. Wouldn't you do the same?

At three months old Moxie is better trained than 95% of the dogs she meets. This depresses me, especially because I know damn well that Moxie is nowhere near as well trained as she should be - as she could be if I had the spoons for it. I do the best I can with what I have, and hopefully she'll be well-trained enough by the time she's grown big that I won't have to hurt myself training her and she won't hurt me out of ignorance, but she has the potential for so much more. As do all dogs. Every dog deserves to be well-trained; it makes their lives so much better. It means no being told off for things they don't understand, no being locked in rooms or outside when visitors come over, no being stuck on a lead having to watch dogs like Moxie run around and play and not being able to join in. It's not their fault, and it breaks my heart when people tell me their dogs are naughty and can't be trusted. No dog is inherently naughty, they just don't know any better.

I know it's not really considered mean or cruel to keep your dog on a leash etc but it really does upset me. They deserve better.

(It also upsets Moxie. She's a very sociable little puppy and doesn't want to go to the park to play with balls or sticks; she wants to go to play with dogs and she's very rarely allowed to do so. Even the ones allowed off the lead are usually dragged away from her and put back on it the second they start to play because the owners seem to think that that's 'being naughty' as well.)

Cookie Monster

2010-10-03T16:15:00.003+01:00

I did not make these cookies strong enough! Having to eat waaay too much to get pain relief now - bringing a whole new meaning to the words 'comfort food'.

...I'm sorry, that was terrible. I'll leave you alone before all of your groanings give me a headache.

Yay

2010-10-01T15:23:00.003+01:00

Rambo's home. Sort of. He was here for less than two hours before he had to go to work and now I have to wait until this evening to see him again.

It's alright though - he brought me painkillers and I am making cookies. I would prefer faster ways of ingesting painkillers but I really don't like smoking. I did just have a look at the bank account though and as most of the money in it is my DLA that just got paid, and as pain relief is a vital part of care, I just put in an order for a vaporiser pipe...and some seeds. Can't wait.

Monster-psycho-puppy has all kinds of energy right now though and is making it difficult to type this up, but it's pouring down with rain outside and she really wouldn't like going out in it - not least because there'll be no-one else out in it and the whole reason she likes the park is because of all the other interesting people and dogs there for her to play with.

Maybe the park will be more interesting now that she'll actually be able to walk around it? I've been limping to the nearest bench and then just sitting there for a half hour while she runs around greeting every person/dog who comes near us. I get the feeling she will like Rambo-walks a lot more.

16 Hours

2010-09-30T19:32:00.002+01:00

until Rambo comes home. I can't fucking wait. I am falling apart here.

Crazy abdominal pain flared up out of the blue on Sunday and my Mebeverine for some reason isn't doing shit about it. Then Dini kicked me in the stomach and I was unable to walk/cough/sneeze/laugh/BREATHE PROPERLY for the next few days.

Pain level's been at 8-9 since Sunday. Moxie has not helped in the slightest. I have no spoons left whatsoever, have borrowed quite heavily from the bank, and once Rambo comes home I will take to bed and crash for a good few days.

Needless to say, I've not been able to get any writing done, and am fucking hating myself for that. I had over a fucking month to get this done and I left it until the last week because I write better with a deadline but I wasn't expecting Rambo to bugger off and crazy flare-ups to happen.

Dazed and Confused

2010-09-25T23:53:00.004+01:00

Everything fucking hurts and I'm sitting here bawling and Moxie is looking at me so confused and apologetic but it's not her fault I'm hurting - she doesn't know how fragile I am.

And I'm so confused and brain-fogged that I keep not being able to remember when I last fed her and I have the sneaking suspicion that the reason she has hiccups and is retching right now is because she's tricked me into giving her two dinners.

And I keep having odd chest problems and not being able to breathe properly and making such loud fricking noises trying to suck in breath that Moxie for some reason thinks I'm playing a game with her and starts trying to attack me - WHILST I CAN'T BREATHE.

And my POTS is still flaring and I keep nearly fainting with all of the jumping up and leaning down to grab the Moxie when she's doing something she shouldn't.

Once again, I CANNOT FUCKING DEAL WITH THIS ALONE.

EDIT: Oh, and I still haven't written my Screamprompt and I'm running severely low on time but Moxie can't leave me the fuck alone long enough for me to do anything about it. I normally hide upstairs for hours when I want to write but I don't want to leave Moxie alone for that long.

Lack of Understanding

2010-09-25T17:31:00.002+01:00

Just explained to my dad about Rambo and TMM leaving me all on my own to look after Moxie for a while and asked if I could stay at his for a bit and he gave me a very confused look and said 'Why? She's only little, it's not hard to take care of her!'

*sigh*

I'm never quite sure just how much he understands - at times he's very helpful with things and at other times he just can't seem to understand what the problem is or why I can't do things.

I'm just...I'm scared, from the subluxed rib and not being able to handle it and what if it happens again? There are times that I just plain can't move and there are many many times when Moxie needs me to get up and do things. When the two coincide there is trouble.

OW

2010-09-25T14:19:00.003+01:00

Slept horribly. Went to bed with a migraine around four in the morning, woke up, migraine still intact, a total of four times from Moxie-crying and then woke up again at noon to the sound of a radio blaring outside my bedroom window - looked outside to see a BT van parked there, door wide open and driver nowhere to be seen but judging by the volume of his radio he was quite possibly a few streets over.

Migraine + blaring radio is even worse than migraine + puppy crying. Seriously. OWFUCKSHITCRAPFUCKINGOW.

I <3 Raspberry

2010-09-25T02:02:00.002+01:00

I got a Tesco delivery earlier. I booked it for when Rambo went away to ensure that I had LOTS of ready-meals and easy-food around to sustain me whilst he was gone. I normally only keep a few in the house as a last resort but then I'm normally alright to cook...but then I normally have other people to help out with crazy psycho energetic puppy and other housework. I am so dead on my feet now.

Anyway, I got some comfort food in as well as I figured I would need it, and the damn people decided to substitute my raspberry sorbet for lemon. Who the fuck wants lemon sorbet? It's sour and horrible and most importantly - NOT RASPBERRY. I am sulking. Waa.

Also, Rambo called me about an hour ago to check how I was doing and I wanted to scream at him that I'm so not handling this very well and tell him about the subluxed rib and the psycho puppy and all the letters that I don't know how to deal with but I didn't. There's nothing he can do about it except come home early and I really don't want him to do that; he's visiting family in Derby because his brother's coming home for a week. His brother's been travelling the world for the last couple of years, living in Australia for the last year, and is only back for a week. He needs to see him.

I don't want him to come home early, and I don't want him to worry about me any more than he has to - there's nothing he can do about it. But I feel like I'm lying to him when he's asking me if I'm alright and if I'm sure I can cope without him and if I'm really alright and not just saying that and I say yes to all of the above. :/

Holyfuckingcrapshit

2010-09-24T21:45:00.001+01:00

Just had a subluxed rib for two hours whilst a hyperactive puppy sat on top of me insisting it was playtime.

I cannot possibly emphasise just how incredibly painful that was or just how incredibly powerless I was to do anything about it.

Oshit

2010-09-24T14:36:00.003+01:00

So, turns out Scouser's not coming as she forgot she had other plans that she'd already put deposits on. I am now officially alone. Until Thursday at least.

I am so fucking terrified that I have been in tears since Rambo left. I can't take care of myself, let alone Moxie as well.

I'm exhausted. I've not slept and I can barely move. POTS is flaring like mad and I've been coughing and sneezing for the last couple days so I figure I've got a cold (and a fever that's flaring my POTS.)

To top it all off, I just got letters through the mail saying:

1. Housing Benefit won't give me any more money until I send them the letter stating my ESA has ended. I never got the damn letter because ESA fails at their own bureaucracy and the only way I found out it had stopped was by phoning them to ask where the fuck my money was.

2. A new council tax bill for July-March stating I owe them £710, no mention of my Council Tax Benefit.

3. A letter from the estate agents saying they're going to be doing an inspection on Wednesday. When the house will be in a right fucking state because there is no way I can clean it and look after me and the dog - and if there's ridiculous amounts of puppy-related mess they may well change their minds about me being allowed a dog.

4. Finally got my new Choose & Book letter and once again the only appointment available is THREE MONTHS from now. I've not booked it and will just keep trying every day in the hopes of a cancellation I guess.

I CANNOT DEAL WITH ALL OF THIS SHIT RIGHT NOW.

Overwhelmed

2010-09-22T16:01:00.000+01:00

I have not been able to sleep properly in days. Partly due to night-pain, partly due to waking up to pee, and partly due to crying puppies outside my door demanding all of my attention.

This means I have very few spoons to start each day with, and not as many as my puppy demands from me each day.

Rambo's going away for a while on Friday and I don't know how I'm going to cope. Scouser's coming to stay for the weekend, supposedly to help out but I feel that trying to be awake and sociable for her will just drain me even further.

Moxie ate my brand-new headphones that were so awesome last night. I blame myself for leaving them out for her to chew, but I didn't realise that going upstairs to the loo would end with me being stuck up there and going to bed. I asked Rambo to put my laptop away, but he didn't even shut it down, let alone put the cables out of her reach.

I don't know why something as stupid as having my headphones eaten should put me into such a state of depression but I think it's more of a last-straw kind of thing.

I am so not dealing well with anything right now, and so terrified of next week, and so overwhelmed by it all, and I just don't know what to do.

Emo

2010-09-19T05:26:00.003+01:00

What the hell do you do when you're in too much pain to sleep but are too damn tired to stay awake properly?

I spent the last hour lying in bed crying as quietly as possible to myself so as not to wake Rambo but it got boring pretty fast and when I finally realised what the music that had been playing through my head for the last hour was* I just had to laugh, and get up so I could do that downstairs away from sleeping boyfriends.

The pain seems to be hitting me extra-hard lately, but I don't really think the pain's gotten worse in itself (hanging around 7.5 at the minute). I was just so sure that I was going to finally get to see the rheumatologist this time and so sure that he'd be able to give me some stronger painkillers and that they might actually work. I'm just...completely crushed by having that ripped away from me once again. I can't deal with this pain forever, I've been holding on because I knew I would have some pain relief soon, but that 'soon' never quite gets here and I'm slowly deteriorating in the meantime.

Spent the last few days in the kind of depression where I'm wondering what the hell the point of living is if this is what my life is going to be like - scratch that - if this is as good as my life will get. I'm slowly getting worse all the time and I will never be better than this.

I'm not going to kill myself or anything, put the phone down, I don't need the police to come check on me. I won't, because I know how upset that would make some people (and also because I'm fucking terrified of both death and the pain that comes with it. Yes, you heard me, I am living with pain 24/7 and am still TERRIFIED of any pain whatsoever.)

But I can't help thinking, at the moment, how damn selfish those people are for wanting me to keep living when I'm in this much pain.

*I'm much too young to feel this damn old.

I Should Have Known

2010-09-16T16:33:00.003+01:00

Know that horrendously bad luck I mentioned that makes bureaucracy impossible for me to deal with? Turns out that my rheumatologist appointment that I had today, that had been booked over the internet, confirmed over the phone and via confirmation letters, and had a reference number and everything, DID NOT EXIST. The hospital had absolutely no record of it whatsoever.

At least they didn't discharge me this time, so I don't need a re-referral, but they're sending out a new Choose & Book letter which will take a while to get here and then I'll have to wait another month at least for the next available appointment. *sigh*

It's been well over a year since I first started trying to see a rheumatologist. This is getting ridiculous.

Many Different Things

2010-09-15T02:25:00.006+01:00

Puppy -

Moxie learnt how to get down the stairs this morning, did it a total of four times today - then she fell down a bit (three steps before I caught her) and is terrified of going down again, yet still insists on going up there and getting herself trapped!

Also, my wrists are slowly dying from playing tug with her earlier. When I got her I agreed with Rambo that whenever she wanted to play tug he would take over from me, but as soon as I hand him the rope she loses all interest. It's odd, because she'll play every other game with him, just not tug.

Rheumy -

Going to see a rheumatologist on Thursday, been waiting for this for over a year now (due to various bureaucratic nonsense and my horrendously bad luck that seems to only come into play where bureaucracy is involved) and I can't believe how excited I am about seeing a doctor. It's quite worrying, really, and knowing my luck I'll get one who knows nothing about EDS. Oh well, fingers crossed still.

I wrote out a huuuuge list of all my symptoms that I could think of, along with medications and family history, so that I can't possibly forget anything whilst I'm there and have to wait months and months to be able to see him again, but am worrying that I've managed to leave things off the list anyway. Just a niggling feeling that I've forgotten something very important but can't for the life of me work out what it is.

Oddness -

I woke up this morning feeling completely disorientated. I guess that's kind of normal, if rare, and nothing to get excited about...except that it wasn't confined to just where I was. I was dreaming about some dogs, and then I woke up and thought to myself 'I have a dog, don't I? Was it any of the ones I was dreaming about?' and spent a good couple of minutes going through all of them before realising that no, it was Moxie, and I did not dream about her. I then thought about the guy that was in my dream and it took me, again, a good few minutes to work out that he wasn't my boyfriend, but I did have a boyfriend, and remember his name. I then wondered why I was in pain, and it took me another five minutes to remember who I was and what was wrong with me and why things hurt.

That's all kind of worrying, no?

Also, in the middle of the night I was scratching my ribs because my arm was itchy and I was convinced that was where my arm was as everything had gone numb (but still itchy...hard to explain) and I couldn't really feel where my arm was. Took me a while to realise why the itchiness wasn't going away.

I'm hoping this is just because I only had two hours sleep the night before (subluxed rib, ugh) and then took an Amitryptiline on top of that, which makes me sleep ridiculous amounts, and this is just my body's reaction to being so damn tired. Even so, it was kind of scary.

Game Over

2010-09-13T01:43:00.004+01:00

Moxie ran out of levels! I can NOT keep her off the stairs. I give up.

I thought we had it last night before we went to bed but then I got woken up by a puppy crying outside my bedroom door. Took her downstairs, rebuilt barrier, woke up this morning to a puppy curled up in my laundry by the stairs. Took her downstairs, gave her breakfast, rebuilt barrier, went back to bed as I was tired. Ten minutes later she's crying at my door again. Then Rambo got up, and didn't realise I'd already given her breakfast. Cheeky puppy cried for food and got two breakfasts. No wonder she's so round!

I kind of don't want to go to bed tonight because I know she'll follow me and I don't want her sleeping up there. Partly because she has no toilet or water bowl up there and partly because if she does attempt to go down the stairs (she's still not even tried one step of that) then she may well fall and hurt herself.

Maybe I'll sleep on the sofa tonight and try to make a better barrier tomorrow.

Level Four

2010-09-12T01:28:00.004+01:00

Moxie's getting way too adventurous! She climbed the stairs this morning - she's never been able to go past the first step before - but was too scared to try going back down them, which is good because she's too little and would fall, so I had to carry her down and try to block off the stairs. Went back upstairs to get dressed, she followed me in under a minute.

Level two barrier was set up after that but I was downstairs so she had no interest in trying to break past it, until I tried to go upstairs to the loo. Barrier level two took maybe two minutes, tops.

Level three, again, held for a couple hours as there was nothing interesting going on upstairs, but then Rambo came home from work and I talked him into giving me a bath. Level three barrier took five minutes, then she barged into the bathroom and got very confused by the noise of running water and wondered why she was getting splashed in the face. We let her stay there and she whined at me the whole time, then we gave her a bath afterwards. That'll teach her to stay out of the bathroom. ;)

Level four is as yet untested as I've been curled up downstairs with her, but it's not much sturdier than level three and I doubt it will take her too long. Maybe I need to invest in an actual barrier rather than random things lying around the house as my construction skills are apparently no match for her climbing ones.

Oh yeah, I also bought a new SD card yesterday (whilst getting some replacement headphones as she shredded the old ones!) so when the mailman brings me it you will all be inundated with Moxie-pics!

A Scouser in Manchester

2010-09-09T15:32:00.000+01:00

An old Scouser friend who I've not seen in over five years came to visit on Monday. We met over the internet, via an old game (Quest*) that I've not touched in years, and although neither of us play it any more, we still talk on msn and facebook and the like, as we do with most people we met there. In fact, that's where I met both Rambo and The Music Man. Felt like we were having an actual Quest-con over the last few days, was pretty awesome recalling old times and old gossip and drama.

Anyhow, Scouser just got dumped (over Facebook - how classy) and needed some cheering up so we dragged her down to Mancheeseter with us, drank lots, ate lots of junk food, went out to pubs and cinemas and the like. Oh, and played with Moxie - that'd cheer anyone up!

So incredibly exhausted trying to act normal and be sociable and the like as the last time I saw Scouser I was so much better than I am now and I was trying to my hardest to act like nothing had changed as I didn't want to dump it all on her suddenly but she was wonderful about it all and actually quite jealous of my awesome purple wheelchair**! But despite her being awesome I still found myself quite (ashamedly) relieved when she got ill Tuesday night/Wednesday morning as it meant we could spend yesterday just chilling out at home, curled up in quilts watching bad tv and trying to play Monopoly without Moxie knocking the pieces everywhere.

She went home last night. I miss her already but really, really need some resting time before I can deal with the world again.

*http://www.questrpg.org

**Which still needs a name, actually. All the folks over at Spoonville have given their chairs and canes awesome names.

Procrastination Is My Middle Name

2010-09-05T23:39:00.001+01:00

I just realised that I can't actually remember the last spontaneously nice thing Rambo did for me. It's not that he doesn't do things for me, but I always have to ask and then feel guilty for asking; and it's not that he's not affectionate, it's just that I always have to initiate it.

I'm not really asking for much, just, you know, it would be nice if he went to make a cup of tea and would make me one as well, or at least offer. I make him tea when I make myself some. If I'm cooking food I'll cook for him too. If I'm getting myself a snack I'll get him one as well. If I'm putting a movie on I'll deliberately pick something we both like.

He just...doesn't seem to ever think about anyone but himself, unless prompted to. I'm not sure that that's not just normal for males, but it upsets me, as I'm nearly always thinking about him.

There wasn't really much point to this rant. He's just being male, and I'm not really worried about it - I'm just procrastinating because I'm meant to be writing stories about drop-bears and I need to do some damned research about Australia in general. Naughty me.

The Dice Hate Me

2010-09-03T22:46:00.003+01:00

Update on the brainstorming thing. I suck at coming up with ideas right now, apparently, and I enjoyed the randomness of how the conflict was selected, soooo I carried on the random idea. This is how it went, in order. Red is what I rolled.

Type of nature - Earth/Air/Fire/Water/Animal

Location - Jungle/Plains/Zoo/Forest/Australia/Artic/Desert/Sea

Main Character:

Gender - Male/Female

Love interest? - Yes/No

Age Group - Teens/20s/30s/40s/50s/60+

    Age - 50/51/52/53/54/55/56/57/58/59

Married currently? - Yes/No

    Why not? Never married/Divorced/Widowed

Why in location - Visiting/Live there

Nationality - American/Canadian/Scottish/Welsh/English/Irish

Intelligence - Dumb/Average/Smart

Kids - Yes/No

    How many? 1/2/3/4

    Gender - Male/Female

    Age - 15/16/17/18/19/20/21/22/23/24/25/26/27/28/29/30/31/32/33/34/35

    Intelligence - Dumb/Average/Smart

Oh dear. Dumb American visiting Australia. I predict drop-bears. Anything else I should be rolling for? I'm running low on ideas even for this.

Memory Fail

2010-09-03T21:06:00.002+01:00

Suddenly remembered I was given writing assignments a while ago, was meant to have a week for brainstorming and start writing on the first, only just remembered about it so am two days late to start writing and haven't even done any brainstorming! Whoops!

Have to do a 3k+ word story about conflict. There are seven basic conflicts, he gave each a number and rolled a d7 for each of us - I landed on Man Vs Nature. Woo.

So, if anyone has any ideas, gogo brainstorming!

I'm Such a Crybaby

2010-09-02T22:38:00.000+01:00

In the middle of a POTS flare, so having difficulty with being upright and difficulty with lightheadedness and brain fog and headaches and all that crap. Can't really think straight. Feeling like crap for getting a puppy when I can't look after her during flares like this. Feeling like the most horrible person in the world. Then Rambo makes me feel even worse for daring to ask him for help with things and to request a clean fork to eat my dinner with, and then my sister starts on at me about 'final utility bills' from when she was living here that the company wants her to pay before she can close her account and pass it over to us. We already gave her rent for the month those bills are from and our rent included utilities, but she's insisting we should help her with these bills. I don't have a spare £80 to give her and I can't think straight enough to deal with finances anyway.

I think I need some sleep. Maybe some ice-cream first to get my temperature down a bit, that'll help the POTS.

This crying won't help my headaches though. I should really quit being such a fucking crybaby, it's getting ridiculous. I honestly can't remember the last time I had a day where I didn't cry and it's always for such stupid idiotic reasons.

Bowling is Bad

2010-08-31T19:03:00.005+01:00

So, Rambo's dad came to visit yesterday, with his girlfriend. I always hate seeing Rambo's dad because he's one of those people who likes to make horrible comments about me behind my back and tell Rambo not to be with me.

We went out to the Trafford Centre, as he wanted to look around it, and I wasn't able to bring the wheelchair due to...well, not wanting to have to argue the fact that I need it for half an hour and then dealing with the looks and comments from him afterwards. Sooo ten-fifteen minutes into walking around and I'm pretty much dead on my feet, at that odd point where I actually can't tell how much pain I'm in any more as it's all merged together into one big nasty feeling and I have to guage my pain level via other symptoms such as my squeezing Rambo's hand enough to sublux my wrist and thumb, without even noticing that I'm doing it; finding it difficult to concentrate and distinguish separate sounds so I'm having trouble listening to the conversation and giving only monosyllabic answers when I realise I'm being asked questions; getting increasingly irritable and screaming obscenities in my head at everyone in sight for the tiniest little things; and an absolute fascination with seats. I know I'm bad when I'm acutely aware of where the nearest seat is and am unable to get my mind off the fact that I want to sit on it. Longing looks at benches in passing gets really weird looks off the strangers sitting on them, you know.

Anyhow, grasping at straws for any excuse to sit down, I manage to convince people to go get food, and then afterwards they drag me into the bowling alley near the food court, pay for four games, and get pretty damn pissed at me for refusing to even attempt bowling*. Apparently not wanting to break my wrist is being a party-pooper, but really, I have trouble lifting a mug of tea at times, and they want me to lift a bowling ball? Not only that, but throw the damn thing? No thank you.

Those were a pretty boring four games. But I got to sit down the whole time, and it was a good rest, enough for another ten-fifteen minutes of walking around the shopping centre, but after that things started to go bad and eventually Rambo's dad had to bring the car around as I couldn't physically cross the parking lot. *sigh*

Ah well, I learnt my lesson**. I got the wheelchair for a reason and I should make use of it when I need it!

*Not Rambo, of course. He argued with his dad, and ended up taking my gos for me. And winning. :D

**Okay, you caught me. I didn't learn my lesson. I never do. I make the same mistakes over and over again. I'll be complaining about the same thing in a month or so, just you watch.

Stupid Boys

2010-08-28T23:02:00.003+01:00

I hurt and I am hungry. There are no clean forks, no clean plates, no clean bowls, no fricking ready meals despite me buying six of the things on wednesday and only eating one.

Stupid. Fricking. Boys. Seriously. What the hell?

Also, why is The Music Man only paying me £300 and doing bugger all around the house? That was the rent we agreed upon on the condition that he'd do ALL THE HOUSEWORK.

I need to man up and learn to shout at people, I think.

I Love Moxie and Moxie Loves Me <3

2010-08-27T19:50:00.000+01:00

I have been terrible at the blogging lately, but I make no apologies! I been spending all my spoons on the Moxie and have no regrets about it. She's so wonderful she deserves 'em all. I could go on for hours about how awesome Moxie is but I won't - I'll just tell you that she's incredibly smart but it's very difficult to train a dog properly when other people in the house undo it all! Puppies need consistency!

Anyhow, what else has been going on? What was the last thing I told you guys? I forget. Hmmm. Well, last time I went to the doctor she took me off Tramadol with its stupid side effects and we discussed the fact that I've reached the limit of non-morphine-based painkillers and have still had no actual gain from any of them. Is difficult to move onto stronger ones due to not only politics and bureacracy but the fact that people very quickly develop tolerances to morphine-based ones so even if they did help me at first the dose would have to be upped frequently. I'm getting quite worried about this lack of painkillers thing, not so much for right now, (although it is annoying that I am basically functional enough that working painkillers right now would very possibly mean I was able to work again, for a few years at least), but more the fact that I know I'm going to get so much worse in the future and I'm terrified of not having painkillers then.

Anyway, we're trying alternate methods for now - 10mg Amitryptiline at night to help 'control' pain rather than kill it. Not entirely sure how helpful it is as it has the side effect of making me sleep for anywhere from 11-14 hours a night. I normally sleep 8-10 but even setting alarms and getting up after a 'normal' night's sleep, I can manage to stay awake a couple hours but then I end up falling asleep on the sofa for a further couple of hours. Am also sleeping a lot deeper than I normally do which means not moving so much during the night which is sort of good on my joints but bad on my muscles and I'm not entirely sure that the trade-off is worth it. My (acute) pain level might be slightly lower but I'm sleeping tons and am exhausted and drowsy and achy all day. Overall pain level pretty much the same.

Of course, looking after Moxie doesn't help with the aching and exhaustion, but she's worth it!

Sister is definitely not helping. She's been making a habit of barging into my house every day (without knocking, and using a key she stole off my Dad) just to tell me how disgustingly untidy it is and how unfair it is to have a puppy in these living conditions and that she's going to report me if I don't clean it up. Yo-yo-ing between feeling like a horribly bad person for daring to have a puppy when I can't look after her and just being pissed off with her because I know damn well that my puppy has a wonderful home. She's looked after, she's well fed, she's loved, she has toys, she has someone at home with her all day every day (unlike certain dogs I know that get left alone for 10 hours a day while owners are at work) and so what if the house is untidy? It's not unclean and none of the untidiness is anywhere that she can get to. The only things on the floor are cushions, a beanbag (her bed) and dog toys! And dog bowls. And newspaper. Which gets changed everytime she makes a mess. Moxie has an awesome home; other dogs would be jealous.

I'd get the locks changed so she can stop making me cry every day but I'd end up giving the new key to my Dad anyway, and she'd just steal that one as well. Fucking woman.

I r loan shark now?

2010-08-22T20:26:00.004+01:00

I DO NOT HAVE ANY MONEY. I barely have enough income to cover bills and food, I'm going without this month to pay for Moxie to have vaccinations.

Why the fuck does everyone think I have money? Why the fuck does everyone want to borrow money off me? How do they make me feel like such a horribly nasty bitch when I have to say no because I honestly don't. Have. Any. Money?

Fucking stop it, you evil fucking people who are capable of working and usually have disposable income. I don't give a shit if you spent all your money on new clothes and alcohol and a haircut and all kinds of other shit that I can't afford because I'm too busy spending my money on food and other essentials, I'm not giving you any of my barely-existent money to pay your fucking bills.

Moxie

2010-08-20T21:48:00.007+01:00

My beautiful little puppy is called Moxie. She is ever so sweet but misses her mom and her brothers and sisters a little bit. She's ok if she's distracted, exploring and playing, but she cries a little when she's not...until I pick her up, then she falls asleep on me. Awww.

I am so fricking exhausted. And the house still isn't really ready for her, I just need to watch her and make sure she stays out of certain places until I can kick Rambo into doing stuff for me.

I have minus spoons, but I don't care. Running on excitement and Moxie-love. :)

PUPPYPUPPYPUPPYPUPPYPUPPY

2010-08-19T14:50:00.003+01:00

Update on the Choose & Book thing - I ignored it yesterday and didn't book anything. Turns out that was a great idea, TODAY the only appointment available was September 16th, at a place I can get to via public transport.

Hooray for cancellations!

Also, I think I've found my puppy. She's the last one left in the litter, Border Collie cross (with a Labrador, I think), collie shape (and hopefully intelligence!) and all black. Only seen pictures so far but she looks beautiful and I'm going to go see her tomorrow morning. Only £20. So pleased!

If tomorrow all goes well I shall spend the weekend puppy-proofing the house, stocking on puppy food and buying dog beds and food bowls and all that and pick her up on Monday.

So excited!

She needs a name though. Preferably geeky, but subtly so. I mean, I'm not going to call her Leia or anything.

EDIT: Person selling me the puppy wants a puppy-free house by this weekend, so it looks like I'm taking her home tomorrow! Posting quickly to take a break from frantically cleaning the house. I'm going to be dead by tomorrow if I keep this up, but hopefully excitement for new puppy will keep me going!

Choose & Book

2010-08-18T12:13:00.002+01:00

What is the fucking point of Choose and Book appointments when of the three places they offer you, only one has ANY appointments available, in fucking NOVEMBER, and that place is the only one that's impossible to get to via public transport?!

This is just fucking ridiculous.

I Couldn't Stop Crying While Writing This

2010-08-17T00:16:00.000+01:00

(Note - I'm not sure what brought this rant on, just generally feeling annoyed at the world I guess, but I'd just like to point out, before I get started, that I love my father very much. Really, he's wonderful. The vast majority of the time.)

I'd like to tell you a story about my father, as I've never really had the chance to vent about him before and the anonymity of this blog is so darned attractive to me.

Now, when my father was 18, he was a little short of money. He took out a loan of £5,000. Not for university, you understand; it wasn't a student loan, he just wanted to move out of his mother's house and...well...buy a lot of alcohol and drugs. He managed the second part quite well, at least. He got married at 21, still living at his mom's and still spending all of his disposable income on mind-altering substances. He moved out, at his wife's insistence, when she got pregnant, taking out another loan in the process. Had a kid at 22 (my sister) and another at 23 (me), moving through about 5 different houses in that time and still spending most of his income on alcohol and drugs and leaving his wife at home to look after the kids while he was at work and then out drinking in the evenings. He cheated on his wife, a lot, was found out when he was 24 (I think) and they got divorced. She kept the kids, obviously, as he didn't want the responsibility and at the time she seemed capable of it*. He promised to send money for the kids and to come visit them every weekend. He managed neither, but still came to visit when he was sober enough (once every 2 or 3 weeks, roughly).

Anyhow, at this point he's taken out about £10,000 in loans, paid minimum payments for interest and spent the rest of his money on alcohol and drugs. So not even a tiny dent's been made in that debt. But now he has to pay child support as well as rent and everything, and he starts buying things on credit cards as he doesn't have the income to cover those expenses on top of his drug and alcohol habits. For some reason, despite never paying back loans, the banks still think it's a good idea to give him credit cards.

He maxes out credit cards, gets more credit cards to cover them, constantly switching for that 0% interest for the first few months. Takes out more loans to pay back the first loans so they'll stop chasing him. Debt continues to build.

Ex-wife's craziness kicks in. Won't go into detail but kids are basically living in poverty with their mother, being clothed and fed by their maternal grandmother as much as she can, but she's living on a small pension. He sees this, takes out another loan, gives money to crazy ex-wife for the kids. She spends it on ridiculous things.

He continues taking out loans to pay off loans, switching credit cards, and slowly building up debt. He also keeps moving house as he keeps being evicted for not paying rent. Kids never know where he's living at any given time and don't know when they're going to see him next but he continues to visit as regularly as possible and they adore him as, well, they don't know any better, he hides his drug and alcohol habits, and he's certainly better than a crazy mother.

He also goes through many girlfriends, all of which crazy in their own unique way (maybe he has a thing for the crazy chicks?) and most of them liking expensive things, as crazy chicks do. Debt continues to mount.

Kids grow up a bit, reach 16, can legally leave home. Get the fuck away from their crazy mother as soon as they can. Don't really have anywhere to live as he still doesn't have a stable home. Live off the kindness of friend's (me) and boyfriend's (sister) mothers who let them live with them for reduced rent. Can't afford to go to college or uni as they have to go into full-time jobs to pay that rent. Government won't give them any benefits as they're under 18 and not living at home**.

Unfortunately, kindness of friend's family doesn't really stretch all that far and after six months or so they get kicked out as there's too many people in the house (me) or because they broke up with their boyfriend (sister). My sister gave in and moved back in with the crazy mother for a full month before she couldn't stand it anymore and moved in with a cousin. I decided to take my father's offer of living in his back room*** for £100 a week all utilities and food included. Oh yes, he'd just bought a house at this point. Banks decided it was a good idea to give him a mortgage, despite him being in about £25,000 debt at that point. So now he has £25,000 debt and an £80,000 mortgage. I'm 17, still ineligible for benefits as I'm not technically living at home as even though I'm living with my father, my mother had custody of me and I grew up living with her. I don't really understand it. I get the feeling I probably could have pressed the matter and resolved it but I was young and naive and suffering with undiagnosed EDS and a lot of mental problems from living with the crazy mother. Wasn't capable of pressing anything.

Takes me about three months of living with him before I can get a job, applying at hundreds, literally hundreds of places, but with barely any experience and bad GCSE results it's difficult (social anxiety doesn't help with the interview process). Finally manage to get a part-time job, that pays £100 a week. Exactly enough to pay my rent, but not to pay off the £1300 debt I've built up by living with him these past few months and not paying rent.

Rambo, who I'd only been with for 6 or 7 months at this point (since just before I moved into my dad's), sees how frustrating and painful this situation is for me, talks his mom into letting me live with them for a rent of £40 a month for the both of us (He was 20, she wasn't charging him rent before that but because he was over 18 he was getting £50 a week Jobseeker's Allowance so could afford that easily).

Anyway, back to my dad. The girlfriend he'd bought this house with (and is still with today) is one of the worst of his girlfriend's for expensive taste. Once a year or so she gets bored with a room in the house, spends fuckloads redecorating. Buys gigantic plasma TVs and every games console and starts a collection of DVDs that could rival any Blockbuster's. All on credit, of course.

Between the two of them, they rack up a debt of £50,000 plus their £80,000 mortgage. Living in the lap of luxury, never wanting for a thing. New cars every year. Always have the latest gadgets and technologies. Never paying off any of their debt.

Earlier this year, they declare bankruptcy. All debt written off, except the mortgage. Lose no assets whatsoever. Continue living in luxury as they now have all that disposable income that used to be spent on debt interest. Buy the nicest foods, always have alcohol and drugs in the house, etc etc.

Which brings me to the point where I started getting annoyed and began writing this. I have never bought anything on credit. Never bought anything I couldn't afford. Always been good with money. Always worked as hard as I could, before my medical problems got so bad that I literally couldn't (and for a good while before that as I refused to admit how bad it was). Yet I've never had that kind of disposable income. I've never been able to buy nice foods and not worry about it. I allow myself luxuries now and then, but I'm always very aware of how luxurious they are and they always make me feel guilty for buying them. I buy alcohol for Rambo on rare occasions, as a treat, and I can never afford drugs. I don't even want them for recreational purposes. I just want working painkillers and I can't afford them. But my father always has a good stock in his house, that I'm not allowed, unless I can afford to buy it off him.

Yet he, even now, even being supposedly bankrupt, never worries about money. He has never lived off a tiny income. Has never lived off ramen noodles and toast and asda smartprice soup at 19p a can because it's all he can afford for groceries.

It's just...it's not fair. I know, he works, and he's good at his job. But I've worked, and in every job I've ever done I've done a helluva fucking good job of it, enough for people to comment on it and tell me how awesome I am and how much better I am than the other people before me, enough for people to ask me to come back when I leave, despite all my problems and all of the sick days I had to take. I am a damned fucking amazing woman and I deserve better than this. Fuck, at my age, my father was being a degenerate irresponsible bastard. At my age he was stealing cars and doing drugs and alcohol. How the hell does he get it so easy?

I want a job again. I want to be able to work and be told how awesome I am all the time, again. I want to be able to earn my money, not jump through hoops for the government just to get a measly amount of benefit that can barely pay my bills and buy me food. I want to know that this isn't forever, that things will get easier, that this is just a small part of my life that everyone goes through when they're young.

I can't have that. I know that. I've mostly resigned myself to it, even if I do give in every now and then and desperately hunt for jobs that might, maybe, be suitable for me. I never find any. I don't think they exist.

I just...I wish people didn't throw it in my face so much. I'm constantly being told that because other people work they're better than me, as they contribute to society, and they have a right to be exhausted when they get home and I should immediately jump up and get them drinks and food because I've just been sat on my arse all day, being useless. No matter how much I actually have done that day. If it doesn't earn money, it doesn't count as work and I have no right to complain. About anything. Ever.

And people are always asking me why I don't buy this or that as it might help me, or telling me off for being 'cheap' when I buy things from charity shops or don't buy name-brand things (or, God forbid, buy cheap food; that's apparently the source of all my IBS problems), or getting annoyed with me for not travelling around the country to visit them or go off on holiday with them or go out to pubs with them etc etc etc. Seriously, guys. I would love to do all that. I really would. But I'm doing the best I can with what little I have.

...Most of all, though, I wish that Rambo didn't have to be dragged down with me. He works for a living. He should be able to have a bit of disposable income. He should be able to buy himself luxuries and go out drinking with his friends. He shouldn't have to deal with all of this shit. I know I shouldn't feel guilty about dragging him down with me, but I do. So fucking much. It's NOT FAIR. He deserves better.

*More on that later, if I can really bring myself to dredge up traumatic childhood memories.

**Seriously. I was told, at 16, that if I was living at home and not working or studying, I'd be eligible for benefits, but as I'd moved out (and therefore needed the money) I couldn't have any.

***Back room is not the same as a spare room, by any account. It was a tiny box room that you couldn't fit a bed into. I had an air bed and a sleeping bag on the floor and suffered horribly with back pain for it.

New Pills

2010-08-11T16:02:00.000+01:00

Antispasmodics are awesome. Seriously. Stomach's calmed down almost completely, only bugging me the tiniest bit if I sneeze or go into hysterical laughter. Which meant I managed to get laid last night, for the first time since this thing started, over three weeks ago. So freaking happy about that. Oh, I was also laughing without being in pain, and it felt really weird, I was that used to laughter being painful.

New painkillers, though, I'm not so happy about. I can't quite work out if they're giving me a tiny bit of pain relief or if it's just that my abdomen no longer hurts and therefore my overall pain level's dropped. The rest of me is still aching and painful (and just after I started typing this my back went super-crazy spasming-pain*) but overall I feel in less pain...I'm thinking that, as with the laughter, I've just gotten so used to abdomen pain that the relief from that feels weird. I think. New painkillers might be helping a tiny bit. But even if they are, the payoff is too much. These are the first pills that have had any kind of effect on me, pain relief or otherwise, and they're making me ridiculously lightheaded, on top of my normal POTS lightheadedness, and have given me such bad dry mouth that I can no longer eat dry food.

But I'm clinging to the hope that side effects and maybe a tiny bit of pain relief means we're on the right track, and that maybe the next step up will be what we're looking for, and that I nearly have working painkillers. :)

Going back to the doctor on Friday, to get a rheumatology referral, as apparently the one I've been waiting on for the past two months never happened. I got a call about an hour and a half after my appointment yesterday telling me that and asking me to come back. This doctor actually checks up on things when I ask her to, and fast, and then bothers to call me and make a new appointment! I love this doctor. I have never seen such competence from a GP before.

*I ran away about a minute after typing that, literally ran up the stairs, screw joint and muscle pain and lightheadedness, and collapsed on the full-body pregnancy pillow on the bed. That pain was so insane, I can't even begin to describe it, but the fact that I ran upstairs to escape it should be description enough. Anyhow, five minutes on my pillow and I was beginning to feel myself again, another ten minutes and my back was fine. Seriously, those things are incredible. I need to stop thinking I can lie on the sofa without dragging my pillow downstairs first.

GP

2010-08-10T12:18:00.000+01:00

Finally got to see a doctor this morning. New one, again. Is very difficult to get to see the same GP twice in a row, but would be very helpful as I wouldn't have to re-explain all my problems. Anyhoo, liking this GP as well. She believed everything I said, and didn't balk at the fact that I've been researching my condition on my own, or the fact that very strong painkillers do absolutely nothing for me. She just moved me up to the next strongest without any hesitation, promised to chase up my rheumatology referral that was made two months ago and I've heard nothing about.

And uh, oh yeah, that weird nasty abdominal pain. Checked my urine, perfectly fine, not an infection. Spent five minutes pressing down on my abdomen in various places and going 'is it sore there?' when I was grimacing in pain. She thinks it's just another IBS symptom and gave me a month's worth antispasmodics to try and told me to come back in a month if it's still bothering me. I hope so badly that it's not still bothering me in a month. I can't stand it any longer. I need to be able to laugh and cry again!

Speaking of crying, I walked all the way down to the doctor's and then the pharmacy as Rambo wouldn't get his lazy ass out of bed. Wasn't so much of a problem walking to the doctor's but after her pressing down on my abdomen so much it was screaming in pain and made walking rather...difficult, shall we say? I've been home for an hour but I've only just stopped crying with pain long enough to get on the laptop.

House of Geeks

2010-08-07T23:56:00.003+01:00

I asked Rambo to get me some chocolate milk. He took my thermos away to go wash it, and then got distracted, as usual. After 15 minutes of waiting I got bored, tried to bug him over msn but he wasn't online. The Music Man was, however. Have a transcript of the conversation that ensued when I tried to get Rambo's attention, edited only slightly to remove real names.

Me: You poke Rambo.

TMM: syntax error

Me: Poke Rambo

TMM: #SYNTAX ERROR

Me: Use stick on Rambo

TMM: successful

Me: Use stick on Rambo

TMM: successful

Me: Use stick on Rambo

TMM: successful

Me: Make chocolate milk
Use chocolate on milk

TMM: no chocolate in bag

Me: Pick up chocolate

TMM: can't find chocolate

Me: Go kitchen

TMM: can't move whilst sitting

Me: Stand up

TMM: you need legs to use that action

Me: Get legs

TMM: can't find legs

Me: Get wheels

TMM: can't find hands to operate wheels

Me: Command Rambo make chocolate milk

TMM: admin password required

Me: < actual root password >

TMM: ***** incorrect password ***** - 3 ATTEMPTS REMAINING.

Me: plenz
42

TMM: ***** incorrect password ***** - 3 ATTEMPTS REMAINING.
***** incorrect password ***** - 2 ATTEMPTS REMAINING.

Me: open sesame

TMM: ***** incorrect password ***** - 3 ATTEMPTS REMAINING.
***** incorrect password ***** - 2 ATTEMPTS REMAINING.
***** incorrect password ***** - 1 ATTEMPT REMAINING.

Me: < standard 8-letter lower case, upper case & number password of mine >

TMM: Password Accepted

Me: Command Rambo make chocolate milk

TMM: can not find Rambo

Me: look around

TMM: you see a large room, it has a television, a sofa, some computers and a boss. you may go north, south or dennis

Me: north

TMM: you are standing in the street at midnight, you get mugged and die.
GAME OVER.

Me: Start
Start again

TMM: GAME OVER.

Me: F2

TMM: You are at the north pole. You see snow.

Me: eat snow

TMM: You die from... snow poisoning
GAME OVER

Me: F2

TMM: You are at the north pole. You die of hypothermia.
GAME OVER

Me: F2

TMM: You are at the north pole. You die of hypothermia.
GAME OVER

Me: F2

TMM: You are at the north pole. You die of hypothermia
GAME OVER

Me: F2

TMM: You are at the north pole. You die of hypothermia
GAME. OVER.

Problem Exists Between Keyboard and Chair

2010-08-07T02:20:00.001+01:00

Someone on TLR was complaining that their code wasn't working right and I, being the benevolent and wonderful person that I am, offered to help, as I would any fellow coder. Especially when they're complaining about CSS. CSS can be so fucking annoying at times. I wanted to take the opportunity to kick CSS's ass for annoying people.

Turns out, he wasn't coding. He was using other people's CSS layouts for his shitty Kingdom Hearts fansite on freehostia. The site itself should have been enough warning for me, but nooo - I had to give him the benefit of the doubt.

So I ask him what he's trying to do, and he shows me the old CSS, takes it down, puts the new CSS up (each stage takes roughly 10 minutes, I don't know why) and all he's trying to do is change the plain background to a fixed image. Simple enough, right? But what's he's done is taken an entire new CSS layout from a different person, that has the background he wants, and used that instead of the old code. Then complained that his old layout wasn't the same. I mean, he was changing roughly 200 lines of CSS here in copying the whole damn file from someone, then wondering why the rest of his site didn't look the same.

So I explain to him that changing the background image is fairly simple, and he should go back to the old CSS file and we'll edit that. I'm still feeling fairly nice and generous at this point, even if I am sitting there seething at him for a) being such an idiot and b) telling me that he was 'coding' in the first place. I figure I got myself into this, for offering to help people. That's what you get for being nice, really. I should know that.

Anyhow, we go back to the old CSS and I give him the chunk of code that he needs and tell him to copy/paste it into the body class of his CSS. Whoops. How stupid of me. I thought maybe, as he was telling me that he was having troubles merging the two CSS files together so they worked properly, that he might understand a tiny bit of CSS. No. Not the case. He takes what I gave him and pastes it straight into the HTML, then cries at me when the raw code shows up on his site rather than actually acting like, y'know, code.

I figure 'okay, it'll be too much work to explain to him about editing the actual CSS file that he took, uploaded, and linked to in the header*, so I'll just make him put things inside style tags in the HTML'. I try this. I give him the exact tags and tell him to copy/paste, before and after the chunk of code I gave him. He ignores that and types them in, with typos, then cries at me because the closing tag wasn't right so it managed to break the rest of his html and now nothing works.

I try to explain to him that he typod in the closing tag, and give him another one to copy/paste. He goes 'but that's exactly what I did!' I tell him it's not, I'm looking at it right now and it blatantly says 'stype' rather than 'style'. He gets a little freaked out that I can read his code, but eventually fixes it.

So okay, we've finally got the background image right. Now the text is too dark and can't be read over the dark background. I ask him if he'd rather make the text lighter or change the background of the 'boxes' (read: scrolling divs) to a lighter colour so that the text can be read. He replies to this with 'huh'. No question mark, so I assume he was just making a 'thinking about it' noise and give him a minute. Or two. Or ten. Then I realise he didn't understand the question. I rephrase it in simpler terms and he chooses to change the backgrounds of the boxes.

Now I have to sit and trawl through the depths of this goddamned ugly, unnoted code in order to find the code for the boxes that we need to change. Whilst doing this I get exasperated at the ugliness of this horrible code and express that to him, hoping for a little sympathy. Instead I get an indignant reply of 'My code isn't ugly! What the fuck!?'

No, really. That's seriously what he said. I am in shock at this point. I'd already worked out that this guy was an idiot, but he really honestly thinks that stealing someone else's code is coding, and that it makes it his code. When he doesn't even understand the most basic concepts of said code. I just...I don't know how to deal with that kind of mind-numbing idiocy and I've just wasted the last hour and a half on him. I can't take anymore. I log off MSN and go bang my head against a wall.

Why didn't I shout at him/block him from MSN/give him anything that he deserves, you ask? Because, like I said, I know this guy from TLR. If I do any of that shit he'll start mouthing off about me in chat and then I'll have to mute him for mouthing off and then people will get mad at me because I, obviously, muted him for mouthing off about me rather than just mouthing off in general and I'm a horrible biased mod who doesn't deserve the title and...

Basically, I didn't want to start any drama. TLR has enough of it as it is**. I shall just not speak in chat for the rest of tonight and pretend my internet died if I see him tomorrow. He'll be over his idiotic problems by then, right?

*How the fuck did he manage to do that part right, by the way? I've not got my head around that, yet.

**If you really want I'll rant about TLR-drama later. And the fact that mods are inhuman monsters that should be fought against with every ounce of willpower you possess. Viva la revolution!***

***If you really need me to tell you that that was sarcasm, please do me a favour and bash your own head against a wall, to save me the trouble.

BOYS!

2010-08-06T22:41:00.000+01:00

Feeling kind of excluded and left out of things. Rambo and The Music Man are spending all their time playing video games together and I'm stuck up here lying in bed because being out of bed just hurts too much. I'm so bored and lonely. I know, there's a whole internet full of lovely people to talk to*, but that won't cure my loneliness, that's not what I want. I don't want to talk; I'm not a very talkative person. I just want to sit with Rambo and cuddle for a bit, that's all.

I'd tell him this, but the last time I did that he told TMM and they just sat there laughing at me being girly. Rambo has no goddamned tact.

I'm sure there were other things that I wanted to say, but my memory really is that shitty that I can't really remember most of today.

Oh, wait, I know. Rent was due today. We can't really pay it. Rambo managed to lose £300 worth of cheques after I nagged him for a week straight to go down to the bank and cash them. Fairly certain they're in the house somewhere but been looking for a week and can't find them. I'm sure if he'd just clean the fucking house they'd turn up but even with £300 riding on it he'd rather sit around playing video games and going 'Eh, it's not that bad. We don't need the money. We pay rent late all the time!'

I've tried cleaning myself but I don't get very far before I need to collapse and then by the time I've got the energy to try again it's worse than when I started.

Again, who the fuck thought it was a good idea to live with two boys?

...I brought this on myself. I know it. But on the one hand, it's sort of a good thing - if I was living with girls, they'd shout at me for being untidy, rather than the other way around.

*Yes, I mean you guys. You're all lovely. <3

I Can Has Puppy?

2010-08-05T19:28:00.001+01:00

My legs are feeling better today and the stairs aren't feeling quite so mountainous. Although my upper body isn't doing so well. I took advantage of being able to use the stairs and did some laundry and tidied my living room a little bit. Now I'm having to rest again, but I feel much better about the resting when I've actually done something productive first.

I'm guessing it is the chair, and I'm just going to have to deal with needing a day to recover after being out for a day in it. Like I didn't spend enough time resting as it is.

Annoying the neighbours with loud music whilst I rest. Singing can be very therapeutic at times.

As a side note - if anyone happens to know of any puppies going free, I would love one. Been trying to find one since my sister moved out and the cheapest I've come across (that isn't, you know, in Cornwall) is £200. Even the rescue centres around here ask for a 'donation' of £100, and they don't have any puppies. I want a puppy. I want to train it from scratch and build a bond from puppy-hood, y'know? Never had a chance to do that before.

Gimme a damn puppy, people. Pet therapy and all that. Is an essential medical need! *cough* No really.

Preferably of the big, fluffy, cuddly variety.

Questions

2010-08-04T17:42:00.001+01:00

I swear my knees and ankles are getting worse. It never used to be this much of a struggle to go up and down the stairs. Sure, it was painful and difficult at times, when something was already out of place, but as a general everyday thing, it wasn't that bad.

It is now.

I don't understand why. Is it the wheelchair? I have noticed my knees stiffening up after I'm in it for a while, and the vibrations are certainly hell when I pop my knee out (I keep trying to kick doors open from the chair, heh. Usually on request. I should really explain how much that hurts.)

But I really don't want to stop using the chair, it's great and so much less painful than walking. Plus I only really use it for going into town and the like, I still walk to the corner shop and closer places, which is pretty much all I used to do, but the chair allows me to go out, for hours at a time, and I've been loving that. But is it making me worse?

Is it maybe all the bumping around when Rambo and TMM are fucking about or just generally not being careful with me? I know it hurts at the time, and I have noticed when I got out of the chair a couple times it was hurting more than normal to walk.

If it's them fucking around, should I shout at them about it? Should I get an electric chair so I can push myself? Will that help, or is it the vibrations? Is it the horrible pavements in Manchester that slope in all the wrong directions, rarely have ramps on the kerbs, and are often potholed/gravelly - or, at the worst - cobblestoned?

No other EDSer I know has complained about their wheelchairs making them worse, either through vibrations or sitting still too long or being bumped around, so is it the chair? Do they just have better drivers and better streets?

If it's not the chair, is this just another one of those horribly fast deteriorations of EDS hitting me? Will I level out again soon? Is it possible to find a physiotherapist who actually knows something about EDS and might be able to stop me deteriorating? That I can actually afford? I've seen a few around, but ranging between £25 and £40 per session. I can't afford that. I could maybe manage £5 a session, but even then I'd be complaining about it, as it would cost me a further £5 to get there and back.

If this gets any worse, will I have to move house? I love living three doors down from my Dad but these stairs are killing me. My house seems to have extra-steep stairs, too. If I have to move house, will I be able to? I've tried looking, before, for ground-floor flats and bungalows, but they're either ridiculously expensive, or don't allow people under 65. What the hell is that about? Are the elderly the only people with mobility problems? I tried living on a third floor flat before, rather than a ground floor, but the lift broke down constantly and no-one seemed to care enough to fix it in any sort of sane time period. That was hell on me, too, and that was three years ago. I've gotten so much worse since then.

If I can't move house, and I can't handle these stairs any more, what the fuck do I do? The NHS certainly won't pay for a stairlift or anything, and even if they did...my landlord knows nothing about my problems. He knows nothing, because he, like most landlords, specifically won't take tenants who are on benefits. If he finds out, will I get kicked out of my house? Where will I be able to live? The council certainly don't care about finding me a house that's suitable. We can barely afford this place as it is, expensive bungalows/ground-floor flats are out of the question.

If I had a proper diagnosis, would it help matters? How do I get one when none of the doctors know anything about it? How do I get to go see a doctor that does? The nearest specialist place is a children's hospital in Sheffield. That's expensive to get to, even if it wasn't a children's hospital. The only other place in England now is London, as the Leeds one's shutting down. London's both expensive to get to, and hell on my joints. Last time I tried it was a five and a half hour bus journey and I was in tears by the end.

Useless

2010-08-04T15:58:00.000+01:00

My house is looking sort of-not really-not by normal person standards clean! Yay? I dunno. I think it's about as clean now as it was when The Music Man moved in. It says a lot about how bad it got that I'm so pleased by this now. He's failing at being a housekeeper. Stupid boys. Who the hell thought it was a good idea to live with boys? Seriously?!

In other news - I've been so brain-dead since FFM finished that I've just slept the days away, when I've not been crying with pain. Getting quite sick of this abdominal pain now, but still haven't managed to get a doctor's appointment as they're rather shitty about it up here and insist that they can't book one in advance and I need to call at 8 o'clock in the morning to try and get one. Which I do, when I can manage to both remember and wake up in time, and then can't get through until 8:30, at which point they tell me that there are none left. This is just...ridiculous. I was barely coping with my normal level of pain and no working painkillers, add extra on top of it and I just...Jesus. I can't cope. Make it stop.

I can't laugh, I can't cry, I can't sneeze, I can't cough, I can't breathe deeply, I can't yawn...except...I can do all those things, and do do them, involuntarily. And then I spend the next five-ten minutes silently screaming*.

So, yeah. Feeling about as utterly useless and unproductive as it is possible to be right about now. Spending all my time crying and sleeping and eating. Except I'm managing to write a blog post, look! That counts as productive, right? ...Right?

Ugh.

*What, you don't understand silent screaming? Then you've obviously never had to deal with chronic pain. Lucky you.

July Is Over!

2010-08-01T21:17:00.001+01:00

Flash Fiction Month is OVER!

I got my last story done at five minutes to midnight. So damn pleased with myself.

Final tally count for the last month is 30 flash fictions, 55 55-word stories and five poems as I apparently have a little bit of an addiction and needed a rhyme fix halfway through.

I also somehow seem to have volunteered myself to make a website for next year's FlaFiWriMo so we can take it off dA and make it somewhat more respectable.

I also somehow seem to have ended up as an admin for a community novel project.

I also, somehow, ended up taking on an insanely large coding project. I'll not go into details now but think D&D/MUD/RP type stuff and you'll be on the right track. Possible income, apparently. *shrugs*

Feeling a little thinly spread at the minute.

...Oh, you wanted to hear about real life stuff? Well, I've had some weird abdominal pain for the last week or so. No idea what's going on but going to the doctor next week. The suggestions thrown at me have ranged from a simple UTI to a pulled muscle to kidney stones to coeliac's disease*. Nobody knows what's going on basically. In lots of extra pain and very worried and confused about it. I hate having pain that I don't understand. It's the worst part of pain.

The Music Man just got back from a ska festival in Wales with his new band, apparently it was insanely awesome, but his laptop got stolen. Is covered by home insurance but we literally only got that like a week ago and I'm not sure how well that claim's going to go down.

Still having no luck with benefits. All very confusing and too much for my poor dead brain. FFM has eaten all of my cognitive functions. Ate them all right up. And they won't even let me rest now - August is crit/edit month.

*Cross your fingers for me. If it's coeliac's then I'm no longer allowed gluten. I fucking love my gluten.

Everest

2010-07-26T15:53:00.001+01:00

So, Manchester Ska Bar. Where to begin?

We wanted to buy some trading cards whilst we were in town, as we started playing with them again since The Music Man moved in. Made three stops trying to find some. Travelling Man - huge step to get in the shop, was quite difficult. They didn't have any of the cards we were after, told us to try Forbidden Planet. Forbidden Planet - huge step to get in the shop, was quite difficult, then the things we were after were downstairs so Rambo and TMM headed down, leaving me stranded in front of a Twilight stand. Thanks, guys. They didn't have any of the cards we were after but the guy downstairs said to try FanBoy3. FanBoy3 had an even bigger step to get in, and doors too tiny for the wheelchair to get through. More annoyingly, they had card tables set up inside, and a back room with a bunch of guys playing D&D. Apparently they have D&D games going roughly ten times a week. I've been looking for a D&D game to join, but that one just ain't gonna cut it.

Then we headed over to Ska Bar, Rambo and TMM slaloming me in and out of scaffolding and deliberating going up and down kerbs rather than ramps because they 'need practice'. Ugh. Ska Bar itself - huge step at the front entrance, tiny door; many steps at back entrance. Got out of the chair to get in there, and to walk down the two flights of stairs to the basement where the gig was. Didn't really mind at all at this point as I was actually capable of walking and had someone else to carry the chair down the stairs for me. If anything, felt guilty because I'm such a hassle and people have to carry chairs down stairs for me.

Met The Music Man's new band, they seemed pretty cool. Had a chat with them before gig actually started.

Rambo and The Music Man decided they were hungry, wandered off to Burger King, leaving me stranded and lonely watching over everyone's stuff. Came back without any food for me. What the fuck? Got shouted at a little bit as I'd expressly asked them for food before they left. Fuckers.

Gig starts. I try to sort of dance-where-I'm-sat, knee goes out. Won't go back in. I need the loo. Toilet is up three little steps but with a knee out I don't think I can handle those steps. Takes about half an hour to convey to Rambo that I need his help because he keeps buggering off or just plain ignoring me to talk to other people and I can't shout at him over the music and he's ignoring my puny attempts at poking and I can't poke any harder or hit him because my wrists are crying at me. Eventually get him to help me up the steps but wrench my shoulder out trying to lean on him because he's too damned tall. Get back to sit down, stretch my leg out carefully so my knee won't hurt, manage to pop the hip out doing that.

Now, as I'm sure I've explained before - when my hip is out, it can't take movement. No bouncing, no jiggling, no nothing. No fucking vibrations through the seat from ridiculously loud music at gigs. Slowly getting more and more excrutiatingly painful. No way to escape vibrations except two flights of stairs. Now I start to really, really, really hate the amount of stairs at the Ska Bar. Fighting back tears at this point but failing miserably - leaking quite consistantly down my face. Rambo eventually notices at about the point that I decide that the stairs will have to be mastered as I can't take these vibrations anymore and the gig's likely to go on for another three hours or so.

Takes me looooong time to get up those stairs. Many people passing me, keep having to stop while they do so as I'm leaning on both walls in order to get anywhere so take up the whole stairwell. Manage to thoroughly screw up both of my wrists by the time I reach the top.

Anyway, I then have to spend the next three hours upstairs by myself, bored out of my mind, listening to shite music whilst Rambo and TMM carry on having a good time downstairs. I'll remember to bring a book next time.

When the gig was over, Rambo and TMM refused to call a taxi because the taxi ramp at Piccadilly Station was 'right there', so we head over. Going up and down many kerbs and over cobblestone streets. With a dislocated hip. Taxi goes down bumpy roads.

I won't recount the Everest climb I had getting upstairs to bed when I got home. Needless to say, I had two dislocated wrists and the shoulder, hip, knee and ankle had all gone out on my right side. It took a long time, and much, much crying.

I really need a fucking bungalow. Or a flat. Or just a house with a downstairs toilet so I could have slept on the sofa and not had to go up the stairs at all. Or maybe even just some working painkillers.

...At least I didn't feel like a fraud for being in the chair yesterday though. It's a small upside to falling apart at the seams, but at least it's an upside.

Wheelchair and Manchester

2010-07-24T19:11:00.001+01:00

Took the wheelchair for a test run in Manchester for the first time yesterday. Can't say I'm overly impressed. Every single pavement in Manchester is one giant slope towards the road, meaning my chair would quite happily throw me into traffic if The Music Man let go for a second. Not that he would, it's just that it was difficult for him trying to push the chair forwards in a straight line. Imagine a shopping trolley that always veers to the side. Imagine pushing that for about 4 hours, up and down kerbs, and trying to stop it rolling into traffic. Fun times, right? Poor guy.

Rambo would have come with us but he was at work. Going into town again on Sunday to see The Music Man play with his new band at the Manchester Ska Bar*, and then they can take it in turns pushing me around and maybe I won't feel like such a hassle.

On top of the sloping streets and bumps in the ground and cobblestone pavements and all that crap...most of the shops have steps to the doors. Half the pubs, too. Felt quite left out.

Then we figured we'd head into the Arndale centre and have a look round, as at least the floor would be smooth and unslanted in there. All well and good, but at half the entrances to it we were faced with an escalator up and an escalator down, nothing else. Back out, find another entrance, try again, same problem. Back out, find another entrance, try again, get inside. Have a look 'round the ground floor. Get annoyed 'cause we can't find a lift to other floors. Find little information things that are low down enough for me to use in the chair but tilted upwards so I can't see anything on the screen and The Music Man has to use 'em. Fun. Oh, speaking of having trouble using things, have a buttload of fun trying to get money out of the ATM. Damn near wrenched my shoulder out of the socket reaching up to get my card in and out.

Anyway, we eventually found a lift up the food court, outside the actual centre, then found a lift down to the first floor from there. I'm sure that lift would have gone all the way down to the ground floor but we couldn't find it when we were down there. Maybe we just suck at finding things.

So yeah, things aren't exactly easy in a wheelchair, but we wandered around Manchester for four hours and I was only slightly hurting from all the bracing and flinching and catching myself when I got thrown out of the chair (only once, today). Fucking exhausting though, and I'm not sure why. I think it might be the mental stress of having to talk to strangers. A lot of people seem to handle the whole 'omg cripple, have to be nice and PC' thing by joking with me. I believe I got told by 10 different people yesterday to watch the speed limit. And they all thought they were being original.

That wasn't so bad though, I didn't really mind that. And I thought it quite amusing how everyone apologised to me whenever The Music Man bumped me into them. We even knocked some guy's bike over, and he apologised. Whoops.

The thing that got me was some guy handing out Christian pamphlets. I said 'no thanks' and he said 'don't you want Jesus to heal you?' Uhmmm, well, that would be great, but seeing as how this thing's genetic I'm thinking if your God does exist then he kind of made me this way.

Uhh, where was I? Oh yes, exhausting, being pushed around all day in a wheelchair. Not much physical breaking. Some aches of sitting still for so long (had to keep moving my legs around to stop my knees locking), but exhausing nonetheless. And then we're still getting The Music Man settled in. And I've just been so exhausted the last couple of days that I can't be bothered to do much on the computer. Have literally been logging on to check messages and then curling up in bed with a book. And then crying that holding the book hurts too much and making someone come play chess/monopoly/TCG with me to keep me entertained instead. And then not being able to focus much on that, knocking all the chess pieces over and sulking in front of the TV. Goddamn it must be annoying having to live with me! I pity Rambo and TMM. I really do.

*He's not even met the guys yet, auditioned over the phone and they were just like 'yeah, learn some songs, come play at our next gig!'

Speedy

2010-07-23T01:18:00.000+01:00

The Music Man moved in today. Took him out to the nearest shops and everything to show him around, and uhhh...teach him to steer my chair. I swear, between the two of them, TMM and Rambo are gonna break it within a week. They can't touch it without feeling the need to run as fast as possible and jump on the back. Two problems with that; one - it's meant to carry 18 stone max, I weigh 13 and I doubt either of them weigh as low as 5; two - it seems to reach a breaking point around 10mph where it goes from running really smoothly to shaking like mad with no warning. Oh, and three, actually - they don't fucking slow down for kerbs. Gonna break me doing that, let alone the chair. Gone flying out of the chair three times already and I've had it for two fucking days.

It's quite fucking scary not being in control of your own movement, you know. I flinch at everything.

That's not to say I don't love my chair; I do. Really. It's fucking awesome being able to go outside the house for longer than 15 minutes without needing to sit down and without having to collapse and nap when I get home.

...I just really wish they could calm down and act normal for a little bit. I don't mind them fucking around occasionally, but the majority of the time it's just scary and annoying and often painful. On my wrists, that is. I keep bracing myself every time I get jolted. I fall on my wrists when I get knocked out of the chair. Etc etc. So all the pain I've avoided in my feet/ankles/knees/hips/back has just been transferred to my wrists, heh. Oh, I also got my toes hit a few times before I learned to hide my feet behind the footrests when things got scarily close.

Maybe they're doing it to avoid the embarrassment of pushing someone in a wheelchair? I don't know why that would be embarrassing, but Rambo at least seems to find it so. It's been pretty bad for me but I've been pushing through it, putting a happy face on, making jokes, laughing at myself, and just telling myself over and over that there's nothing wrong with me being in the chair - I need it. But it's still pretty damned difficult running into people who've not seen me in the chair before and don't really understand, and even more difficult when I get out of the chair for whatever reason. I feel like people are going to start screaming at me for being a fraud. Fuck, they don't even need to scream, just the idea of them thinking that is enough to freak me out. Stupid goddamn mental scars.

I AM NOT A FRAUD.

^Just repeating that for my own benefit, not yours. I need reminding at times. So many years of having it drilled into my head that I'm faking it and there's nothing wrong with me and it's all in my head...hard to shake.

Uhmmm, I didn't mean for this to get depressing. This was all an aside. I was talking about The Music Man moving in. Yeah. Uhhh, what was I saying about that? Fibro fog distracted me. Fuck it, if it's important I'll remember it later.

Wheeeelchair

2010-07-21T18:55:00.003+01:00

Postman brought me many things this morning. A bunch of clothes (including a set of pyjamas that had one top and two bottoms, tehfux?), a CD*, a zebra-stripe blanket and a wheelchair** to put it on! Immediately went out in the chair just to test it out, spent hours outside going all over the place and only got hurt due to Rambo's bad steering...but he's learning, bless him.

Was a tad confused as to what I was getting with the chair, as the item description said self propel and the picture was of an attendant chair, but they sent me a self propel so I, obviously, started trying to self propel in it as I couldn't resist the temptation. Hurt my shoulders more than my wrists to start with but I couldn't go more than say, 10 metres before I just couldn't take it anymore on my wrists, whereas the shoulders were only hurting as bad as they were when I started. Bit odd, that, but I don't really mean to go self-propelling it in so it's not really an issue. Just wanted to see if I could.

Despite being pushed around all day though, I am running severely low on spoons as The Music Man's moving up tomorrow and we've been in the process of moving rooms for the last few days as the Sister had the big room all to herself for some reason whilst Rambo and I squeezed into the smaller room (I may be exaggerating there, it wasn't really a squeeze.) Anyway, Rambo seems to feel the need to take an hour-long gaming break for every 10 minutes of work he does and when the cripple is doing more of the work than the perfectly-healthy boyfriend I think he might be taking the piss a little bit!

Still a little behind on FFM (two days, now) and tomorrow's challenge is a 'Celebrity Cameo' which is going to be awkward. I know shit all about celebrities. This is going to require research, no matter who I pick. Eww, research.

*Fighting Evil is Cool! - awesome ska band formed by some of my best friends, who made me pay for the CD as they've not made money to pay off printing costs yet. Boo. Friends should get free copies!

**Pictures will follow later, probably when I've dyed the blanket purple.

Sippy Cups

2010-07-20T01:44:00.001+01:00

Got Ann Summers things in the mail this afternoon. Tried on new nightie before anything else, had it ripped off me, ended up with a dislocated hip again. Spur-of-the-moment sex is not good for me!

It's alright though, because it went back in a few hours later and I waited until it did before blogging so you didn't get me screaming curse words. That's never fun.

I was doubly pissed off at the time though 'cause Rambo broke me and then buggered off to work for a couple hours leaving me stranded in bed when I hadn't eaten anything in nearly 24 hours and was starving. Then he didn't even bring me home any comfort food. Fucker.

Oh, also, last night I made the silly mistake of thinking I was capable of getting myself tea. I made the tea, and I carried it upstairs, but then I spazzed out in my room and the cup fell on the floor and there was tea everywhere. As that's like, the tenth time that's happened to me in the last month or so it was decided that I am no longer to be trusted with open mugs. Started shopping for sippy cups. For some reason these come in two varieties - baby ones that hold bugger all liquid, and disability living aid ones that hold the same amount of liquid, but look uglier. My awesome button-operated kettle dispenses 250ml of hot water for my tea, and there's no way to adjust that, so I've been buying mugs and the like based on the fact that it needs to hold at least 300ml to compensate for milk and not overflowing, so both baby sippy cups and disability living aid 'spill proof cups' were out of the question as the largest I found held 200ml.

...Then I hit myself in the head for being so stupid and got myself a sports thermos. Seriously, what the hell was I thinking searching for spill-proof cups when I knew that sports-cap bottles always served me well in the past? I am such an idiot at times.

Wheelchair Access, Or Lack Of It

2010-07-18T22:19:00.003+01:00

Bought a nice zebra-print* blanket to throw over my chair as I hate the black fabric on it. I shall dye the white bits purple and have purple zebra stripes on my chair. I'm a tad confused as to the actual dyeing of it though as my little pouch of dye says it will do 250g of fabric. The blanket is 160cmx200cm but has no weight on it whatsoever. Kind of hoping I can dye the blanket and some tubigrips** with that little pouch but I doubt it will happen.

So yeah, even more awesome things in the mail now. Seriously want some deliveries.

Also, been having a look at flights to Spain as I can finally afford a passport after not having one for three years and missing out on so many offers of free flights to Spain to visit family. Ridiculously difficult to get to the places in Spain I want to go to from the airports that are near me. Plus I'm not sure if I can bring the chair as Ryanair are apparently quite twattish about wheelchairs and it would be expensive to book it in as extra luggage. Gonna call them tomorrow and have a rant but their lines aren't open on Sunday so not much I can do about it tonight.

Was considering going to see Barenaked Ladies at Rock City in September, and visiting Derby friends whilst down there, but turns out Rock City has no wheelchair access and the last time I went there without the chair...well...it sucked balls. I was completely and utterly dead by the end of the night, would not have been able to get home if ND hadn't brought me extra-strength painkiller spliffs*** and even that wore out before I managed to get to sleep, so I stayed up all night in tears of agony. Reeeeaaally don't want to repeat that if I can find any other way around it.

Turns out that whilst wheelchair is going to be incredibly useful and pain-relieving for me, it's also going to get in the way. A lot. Stupid people not catering to the disabled.

Also, three days behind on FFM now. Catching up slowly. Will be there by the end of the month I think. Although, I did write three poems as well as all that flash fic this month (totally accidentally - was trying to write prose but my head wouldn't stop rhyming), so I might just count that as me being right on track...

Oh, also also, forgot to mention that I got a DLA letter through the other day. They re-assessed me as I was on a yearly claim and the year had run out, and decided once again that I require nothing but low-rate care. Most of the reasons they cited were wrong so obviously I failed at filling out the form****. *sigh* Will call them tomorrow as well and see what I can do about it but I don't think it'll change anything.

*If you didn't know, zebras are the mascots of EDS, due to our condition being so rare and under-diagnosed due to med students being taught 'if you hear hooves, think horses, not zebras'. Is great for most people, but seriously screws over us zebras. They were investigating symptoms of my EDS when I was a goddamn baby, but it took until I was 21 to figure out what was wrong.

**Plan to hide tubigrips = dye tubigrips purple, get black lace/fishnet/mesh/something armwarmers to go over the top. Am currently just using normal armwarmers to hide my tubigrips and it gets ridiculously hot sometimes compared to just the 'grips.

***We've worked out that five times what he normally puts in a spliff is enough to crack my drug-resistant barriers and actually give me pain relief.

****Seriously, you people crying about fraudulent claims: It's ridiculously difficult to get the benefits legitimately, let alone fraudulently. I call bullshit!

Grammar Rant No. 3 - Past Tenses

2010-07-17T18:20:00.001+01:00

We've not had a grammar rant in a while. That's a good thing, because it means I've not been pissed off enough with someone's terrible grammar for a while. Today though, I got an email. I should probably explain this. Y'see, I'm on a mailing list of an author who writes little pieces of advice to people writing novels, it's called 'Daily Kick in the Pants' and is usually filled with useful advice, but usually quite useless to me as it all seems rather common sense-ical*. But today, he tried to explain that we shouldn't overuse the word 'was'. One of his reasons for this was as follows:

'The second problem with “was” is that it is often used unnecessarily. As far as the image that is conjured in the reader’s mind, there isn’t much difference between saying “Sheila was singing under the starlight,” and “Sheila sang under the starlight.” However, the second sentence uses one syllable “sang” instead of three, “was singing.” So in the interest of brevity, usually we try to get rid of the “to be” verb.'

NO. No no no no no no no. They are two different tenses, you do not fuck with your tenses for the simple reason of 'brevity'. You know what else is used for the interest of brevity? Chatspeak. 'i r kl lol', etc.

'Sheila sang' is perfect tense. This is your basic tense for storytelling** as we tell stories in the past. It denotes a completed action. If you say 'Sheila sang' then you're saying that she's now stopped singing in your story and can do other things.

'Sheila was singing' is imperfect tense. This is still past tense, but an ongoing action. Saying this means that Sheila is still singing in your story and if she does anything else she will either be singing whilst doing them or be interrupted.

It may not sound like a huge difference in this particular case but can make a world of difference at times. Don't ever mess with your tenses just because one tense has less syllables. Jesus.

Other past tenses for storytelling, just in case you get confused:

'Sheila had sung [before]' is pluperfect. It denotes something that happened in the past of your story (which is already being told in the past).

'Sheila would sing [again]' is future perfect. It denotes something that will happen in the future of your story.

There are other mixes between them ('Sheila would have sung', 'Sheila had been singing') but these are your basic ones and you should be able to tell what's going on from the mix. ie - 'Sheila had been singing' has the 'had' from pluperfect and the 'ing' from imperfect, therefore an ongoing action that happened in the past of your story. If you know these basic ones you can work out any others you may need.

Unless you're telling stories in the present tense all the way through, you do not ever use present tenses ('Sheila sings', 'Sheila is singing') or future tenses ('Sheila will sing', 'Sheila will be singing', 'Sheila will have sung' etc etc).

Just in case you haven't got it by now - I really, really, really hate when people mess up their tenses in writing. Don't fucking do it.

*SO a word. Shut up.

**I have been known to write in the present tense, when it fits the piece, but generally past tenses are the way forward.

Awesome

2010-07-17T15:54:00.001+01:00

Sister is goooone! Alright she still has quite a bit of stuff in my house but she's now basically living at Dad's and just popping over to grab more stuff every now and then. This does mean she keeps barging in without knocking as she still has a key and I can't wait for that to be over with but I don't have to live with her anymore! Yay! No more of her hogging the bathroom for hours at a time whilst my bladder's exploding!

She has been borrowing lots of money off me though in order to pay rent at Dad's as she just started a new job and gets paid in arrears, etc etc. You all know the hassle of starting new jobs and not having any money for the first month. Sucks as I really don't have spare money to be giving her but she promised she'd pay us back before rent's due so I'm just crossing my fingers she actually keeps her promise.

The Music Man's coming up on Thursday and although he doesn't have a job up here yet he can do all my housework and has already found a band to play with*, so that's all pretty awesome.

Rambo's still being incredibly awesome and making sure my spoon reserve stays fairly high, but now I feel like I'm taking advantage of that as I've been feeling fairly lazy the last couple of days, despite managing to bathe myself yesterday while he was at work! Yes, that does deserve an exclamation mark, it's an incredibly impressive feat for me that takes nearly half my daily spoons.

So yeah, all in all, things are awesome. Rambo's awesome. The Music Man's awesome. I shall have a vaguely clean house soon. And a wheelchair. And all kinds of other awesome crap in the mail. Benefits suck right now as my ESA's been stopped, so money's not great, but that's definitely outweighed by all the other awesome things and is hopefully fixable once I get my cognitive functions working enough to fix it.

Oh, kind of failing at FFM. Mega-bad wrists last couple days and I didn't want to type any more than I had to so am uhhh...four days behind now. But the 55x55 thing means I'm still about 50 stories ahead, even if I am days behind.

*Catch-It Kebabs, go check 'em out. Awesome ska band. Gonna go see 'em at the Manchester Ska Bar the sunday after The Music Man comes up and they're supporting Streetlight Manifesto** in August!

**Possibly my favourite band ever. I've travelled all across the country to see them on many occasions and it's always worth the crash after.

Feeling Very Happy

2010-07-15T20:24:00.002+01:00

*WARNING - Post may contain mature content*

I eventually got around to making Rambo read The Spoon Theory last night. That's something I've wanted to do for a long time but I always feel as if that would constitute me whining about it, y'know? I hate complaining, and I try my hardest not to even mention it* unless I physically can't do something and have to ask for help. But uhh, we had a bit of an argument the night before about the fact that I seem to always be talking about it, which kind of felt like a slap in the face as, like I just said, I make a huge conscious effort to not complain or even mention it. I had a bit of a rant to the folks over at BYDLS about this and we came to the conclusion that the problem was that he just didn't understand that I can't just not talk about it ever because it's always there and it doesn't just take a break because he's sick of hearing about it.

So I linked him The Spoon Theory, along with some rather depressing writings of mine from the past year of me trying to come to terms with this, to try and let him know how I feel as I utterly suck at explaining things to people. I wrote those to no-one in particular, just for the sake of writing them, and therefore didn't have a problem writing them down. It was difficult even linking them to him, but I was upstairs on the laptop and just linked them over msn then went to bed so I wouldn't have to talk to him about it, heh.

Couple hours later, I'd still not managed to get to sleep due to worrying about how he was going to react and whether or not he was just going to get annoyed with me for whining and for making him read such depressing stuff, he comes up to bed...and tells me that he was going to bring all the spoons in the house up to bed for me but he thought that would maybe a bit over the top. Then I cried at him, because I was so happy that he would actually take the time to read all of that for me, and not tell me off for whining, and we stayed up talking until five in the morning, about everything. About the fact that I need a wheelchair, and screw all the people and the reasons that I'm feeling so freaked out and embarrassed and anxious and downright fraudulent about it. About the fact that a Tempur mattress would be incredibly awesome and pain-relieving for me, but they're ridiculously expensive. About the fact that sex hurts and quite often breaks me, and how much I fucking hate that because I hate having to say no to him and I hate not knowing whether or not it will be fine or if it will dislocate my hip and leave me in utter agony and unable to do anything for the whole next day and I hate the fact that I quite often get ridiculously horny when I'm too broken to do anything about it. He told me off for that, because he said that he should be able to do something about it even if my hips were too bad for actual sex, but I explained how that hurts as well and just leaves me sore due to the fibromyalgia problems and we talked about vibrators and why the hell I didn't have one (mainly due to feelings of guilt on my part that Rambo should be good enough for me and I shouldn't need one). Then we discussed various positions and how we could possibly do things without breaking me, which involved trying all of them out. Found a fairly good position, and had the best damned sex we've managed to have in years.

He also insisted I buy the wheelchair I've been looking at and agonising over whether or not I should buy it for the past couple weeks. So this morning I ordered myself an awesome purple wheelchair...and a vibrator for when I'm broken but still horny. Very eagerly anticipating deliveries now.

*I meant IRL, not here. Blogs were made for whining!

Fell Down - Feel Like An Old Lady Complaining About It.

2010-07-11T21:15:00.002+01:00

I fell down in the kitchen yesterday. Falling over is pretty normal for me, but this was abnormal falling. Y'see, normally, I know I'm going to fall and can usually manage to collapse neatly into a lying down position and just relax for a bit. But nooooo, the kitchen floor was all wet 'cause the washing machine wouldn't drain properly and I didn't realise and slipped. Very fast falling over there, no time to prepare and lie down and brace myself or anything.

So yeah, popped a shoulder and hip out with the falling - wasn't actually so much of a big deal, popped 'em back in pretty much straight-away and diclofenac-gelled to pre-empt swelling. But the bruises...and the sore muscles. OH GOD THE SORE MUSCLES. I had a bath this morning and for once the relief of hot water on my muscles outweighed the pain of hot water on my joints. I didn't wanna get out of there. And now I'm stuck on the sofa and don't want to move. Oh, and I'm having to stay lying down 'cause I bruised my ass so badly I can't SIT down. Bleh.

Child-Proofed

2010-07-11T02:13:00.001+01:00

I swear these new painkillers are child-proof. I'm used to getting them in child-proof bottles (although I've learnt to ask them not to do that) but seriously, child-proof pills? These things are huge. The reason they're huge is that they have 500mg of Paracetamol and 30mg of Hydrocodeine. Now, we know full well that Paracetamol does bugger all to me, why can't I get tiny little 30mg Hydrocodeine pills? Those would be real easy to swallow. I know, I know, they have their reasons. I just really hate these giant pills. They have lines down the middle so I assume I'm meant to break them in half to swallow them (and I still find it difficult then), but I don't have the wrist-strength to do that, and I'm meant to be taking them 4 times a day and Rambo just isn't always there when I need to take them. *sigh*

They don't work, by the way. In case you were wondering. I wasn't. I never expected them to. Can I get some damned cannaboids yet?

Speaking of which, The Music Man's definitely coming to live with me now, planning on moving up on the 20th of this month, and he's agreed to let me grow painkillers in the loft. Sister wouldn't let me and I didn't want to do it without permission of everyone in the house. Will take a few weeks to set up and six-eight weeks to get a harvest but in a few months I should have a steady supply of working painkillers*.

He's also agreed to let me have a puppy - something the Sister would never do. Gonna need to buy a few rugs to cover the living room with as I've had dogs round here before and the poor things slip and slide all over the place, but when the floor's safely covered I shall be looking at puppies, yay! I shall train it not to jump up and hurt me like certain other dogs I know, and not to pull on the lead. Or maybe I shall train it to pull on the lead, teach it left and right, hook it on to my wheelchair** and have dog-powered mobility!

*Will give huge EDS-discount to anyone else who needs 'em and happens to live near me (Manchester).

**Found a really nice purple wheelchair*** on Ebay, £155. Not sure whether to buy it or wait to hear from Rheumy and get a diagnosis and then get a wheelchair from the GP. Problem is, still waiting (a month after supposedly getting Rheumy referral) for a letter from Choose & Book, then the appointment will take a long time, then I hear the waiting list for a wheelchair will take a loooooong time too. I kind of need the wheelchair for late August & September. Considering just buying the damn thing and then trying to convince the GP to get me an electric one when it finally comes to it...

***Funny story, apparently 'purple wheelchair' is a strain of cannabis. Didn't know this. Was trying to find a nice purple wheelchair via googling and it just did not work very well!

I Hate EDS

2010-07-10T03:44:00.002+01:00

I hate that I can't concentrate,
And there are things I can't recall.
I hate the fact I can't walk straight,
- End up walking into walls.
I hate that my slow shambling gait
Makes me invariably fall.
I hate that when I medicate
It does completely bugger all.

I hate the fact I've put on weight
Despite watching what I eat.
I hate the fact my joints inflate
In this dreadful humid heat.
I hate the fact I fascinate
Every person on the street.
I hate having to educate
Every doctor that I meet.

I hate when ignorant people state
My only problem is being unfit.
I hate that I can't communicate
The problems I refuse to admit.
I hate the people who berate
And tell me not to quit.
I hate people saying I look great
When I feel like utter shit.

I hate when people discriminate
Because of things that I can't do.
I hate people who try to commiserate
- Say they know what I'm going through.
I hate religious types who speculate
That I'm only getting what I'm due.
I hate that I now alienate
The 'friends' that I once knew.

I hate that I infuriate
When the pain makes me rather terse.
I hate having to moderate
When all I want to do is curse.
I hate people thinking I exaggerate
When it's usually the reverse.
I hate knowing I'll deteriorate,
That this will get much worse.

I hate people who insinuate
That I am nothing but a fraud.
I hate people who implicate
That it's my will-power that's flawed.
I hate that I can't recreate
And am often extremely bored.
I hate that I could make the pain abate
But the things I need I can't afford.

I hate that I can't elaborate
When the fog descends on my brain.
I hate attempting to translate
But not being able to explain.
I hate having to estimate
What will cause too much strain.
I hate having to tolerate
This excruciating pain.

Tehfux?

2010-07-09T13:56:00.004+01:00

So, got two letters through about ESA this morning, one a cheque of £150 for two weeks where they missed payment, the other a P45. Very confused, I rung up and asked, was told that my appeal (that I don't remember making?) was struck out and they're going to stop paying me, hence the P45, and they shouldn't have sent that cheque and someone made an error there, and if I want ESA I'm going to have to make a new claim and they won't pay me anything until they've given me a medical (which I'll probably have to appeal, as the main process of their medicals seem to be 'can you move your limb here?' which bendies don't really have a problem with).

Broke down and cried. Not sure I have the mental stamina to handle anything else today, let alone a long, drawn-out phone call to make a new ESA claim.

It took me 2 years to get to the point where they would give me any money, then after backdating 6 months worth I've had nothing. Except this cheque which I don't know whether I should cash as I don't know whether they'll insist on taking that money back off me as she said I shouldn't have it.

I thought I would finally be able to pay rent and pay off all my debts, and buy food that wasn't asda smartprice crap that's hell on my IBS, and buy an electric fucking wheelchair and have some fucking independence. But no. I'm not allowed any of that, obviously. Don't know why I thought differently.

EDIT: Considered asking CAB for help but I'm in no state to be making any phone calls, and they don't do email advice around here apparently, and there's no centres within walking distance (200m, roughly). Ha, I need their help to get a wheelchair so I can get to their centre and ask them for help. Godfuckingdammit.

Rambo's promised to call everywhere and shout at everyone on Monday for me. Is very lovely of him, but I'm going to be stressing out and crying all weekend.

New GP

2010-07-08T10:22:00.001+01:00

New GP opened just down the road last week. Went for a 'new patient check-up' thing with the nurse last week and she goes 'ooh your blood pressure's a bit high, we need to keep an eye on that'. Yeah, fair enough, my blood pressure yo-yos up and down constantly. Anyhow, went to see my new GP today, he checked my blood pressure again and goes 'oooh that's ridiculously low that can't be right how are you still standing?' Well, I'm feeling rather faint and dizzy mister and leaning on Rambo to stop myself falling over, that's how. Explained to him about my POTS/POH and we left it a few minutes of me sitting down then tried it again and it was back to normal. Yay me. He's a bit worried and wants to keep an eye on it though, once a week or so. How I hate having my blood pressure taken...

Anyhow, about new GP...uhh, what can I say? He's lovely! Believed me when I explained about my problems, didn't try to argue at all or laugh me out of his office. I love that. All my mental problems of feeling like a fraud make talking to doctors extremely difficult for me usually, but this guy was alright. He gave me some new painkillers to try, which I'm not entirely happy about but at least he's trying, I guess. I just don't see how Co-Dydramol is going to be any help when we already know Co-Codamol does nothing. (Hey, Paracetamol and Codeine don't work, let's put them together in a slightly different way!) Even asked me about a wheelchair as he saw the difficulty I was having walking to his office. Can't give me one yet, as I'm still awaiting a formal diagnosis from the rheumatologist, but insisted that I tell him as soon as I have one so that he can give me a chair.

55 x 55 = 3025

2010-07-07T19:51:00.001+01:00

80k told me off for not blogging, but I have an excuse! Flash Fiction Month was stealing all of my attention!

Someone challenged me to write 55 55-word stories. I think they were joking, but I have a hard time declining challenges. So I did it. In one day*. I am awesome. You guys all suck. Nyah.

In entirely unrelated news - my wrists hate me. Can't think why.

*Well, 24 hours. Same thing really, even if it was 8pm - 8pm.