Car Crash

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?

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

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

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

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

...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

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!

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

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

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

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?

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

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!

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

'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

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

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

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

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:

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.