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.
Monday 28 February 2011
Saturday 26 February 2011
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.
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.
Tuesday 22 February 2011
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
Sunday 20 February 2011
...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.
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.
Thursday 17 February 2011
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.
...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.
Thursday 10 February 2011
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.
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.
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.
Wednesday 9 February 2011
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.
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.
Friday 4 February 2011
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.
Tuesday 1 February 2011
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.
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.
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