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.

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.

Yay for being ill?

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.

Wheelchair Access, Or Lack Of It

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!

Tehfux?

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.

Some Good News

Ohnoes I didn't update yesterday! It's ok, it's not the start of a major decline, I was just a bit stressed/tired/broken/busy/dead to the world.

Also, I made the stupid mistake of trying to play games that don't just play themselves with me only having to hit enter every 5 minutes to put it on auto-attack*. Jesus Christ that was a bad idea. Wrists utterly destroyed. Couldn't type up a blog for you, couldn't even undress myself for bed, or flush the toilet, or lift a glass of water to drink from, or...you get the idea. Destroyed wrists = bad. Still recovering today but I'm a very harsh mistress when it comes to my poor wrists and I'm afraid they won't get much rest time.

On a slightly happier note, I got a letter through yesterday, finally been awarded Housing Benefit. I'm not entirely sure if it's being backdated or not - said on the phone they could do it as far as January, said 'claim starts June 14th in the letter' - but the Council Tax Benefit has definitely been backdated as that went through this morning. I'm assuming as those things are linked that means Housing Benefit will be too but I don't want to get my hopes up - I've been burned before by benefits people. Common sense means squat to them. I have minus money in my bank account and until that changes I'm refusing to think otherwise.

Sister's still threatening to move out and leave us paying rent on this goddamned expensive house all by ourselves**, but I feel that with Housing Benefit I might be able to cope with that now. Especially if they up it when she moves out (the amount I've been awarded is based on the fact that Rambo and I are paying 66% of the rent). Plus a good friend of ours, let's call him...uhhh...The Music Man. Yup, that'll do. Anyway, The Music Man is considering moving on out here to go study at Manchester Uni in September. If he does, well, I've offered him very cheap rent on the condition that he'll do all the housework. Finally I can not live in a pig-sty and not feel guilty about other people doing things! I'll be paying him for it! *Cheers*

*www.thelostrunes.com/?r=1061 - Yes, that's a referral link and a shameless plug.

**Which, by the way, we're only in because she begged us to come move in and help her pay rent as she couldn't afford it herself.

DLA Changes

There's been a lot of controversy about the changes to DLA announced in the budget yesterday. I wasn't planning on writing anything about it because a) nobody reads this blog anyway and b) so many people have said the things I wanted to say over and over. I could see no reactions to the proposed changes except shock and horror and a terrible, lingering fear. I did not over-exaggerate that. The problem is, you see, I hang around in all the wrong circles. I'm getting a purely biased disabled view on these things. I was extrapolating that to cover healthy people's views. That was very wrong.

I started reading other articles about it, on the Guardian's website, among others, and whilst the articles themselves expressed the same views I'd seen elsewhere, I decided for some unknown reason, to read the comments. I was utterly appalled. I cannot honestly believe that so many people see disabled people as scrounging filth, scum of the Earth. I knew it, rationally, had even come into contact with it in everyday life, but usually veiled. People don't generally like to insult me to my face. All that disappears with the anonymity of the internet, however, and I was suddenly faced with hatred and discrimination on a level I'd previously only speculated about.

And the worst thing about this? DLA is not an out-of-work benefit. It's not something healthy people claim so they can sit on their asses all day. It's something you can claim whilst working. 'OMG YOU GET EXTRA MONEY EVEN WHEN WORKING!?' I hear you say. Yes, yes we do, and we need it. Maybe minimum wage or whatever your income is is enough for someone perfectly healthy to live on, but there are a lot of added costs to being disabled. No, they're not all covered by the NHS, or social care systems, or what-have-you. They don't even begin to cover it. Especially if you're managing to pull off working with your disability. I've found that disabled people who are trying to work are oftentimes worse off than those who don't. Scratch that - ALWAYS worse off. Financially, physically, emotionally. It is very, very difficult to work with a disability and none of you healthy people seem to get that.

It's not just the problem of finding a job you can reliably do (hard enough as it is), and an employer who doesn't mind you taking huge amounts of time off for doctors appointments, random emergencies, and hospital stays (ridiculously hard, you'd think that would count as discrimination, wouldn't you?..). You have to add in the difficulties of getting ready for work in the morning, getting to work in the morning, getting home again when you're feeling as exhausted as if you've just run a marathon, having no energy to do any of the housework when you get home or being able to cook yourself food. So, if you're working, 9 times out of 10 you have to pay someone else to do your housework, and either buy expensive ready meals or pay for takeaways, buy your lunch as you don't have the energy to make your own sandwiches. Every day. Pay for taxis when you're too damned broken to either drive or walk all that way to the bus stop. And I can't even begin to count all the little adaptations and things we need to attempt to live a normal livestyle, little things that occupational therapists won't give you and the NHS won't pay for. Could YOU afford all of that on your measly salary?

If you can, then you're very lucky. And don't worry, anybody who CAN afford those things despite their disability is probably not claiming DLA. It's a ridiculously hard, long, embarassing, emotionally-taxing process that leaves you with the strong feeling of being bullied. Nobody goes through it unless they have to. No, not even those perfectly healthy scroungers you keep telling me about. Of course there are a few of them, but the process is very stringent as it is with them asking hundreds of questions, expecting you to answer word-perfect (and cutting your benefit if you don't), and asking your doctor to support your claim.

Because of all of that - it has one of the lowest fraud rates of any other benefit. 0.5%. Let me say that again: 0.5% fraudulent claims. And they think they can cut the budget by £1.4 billion just by stopping fraudulent claims? I call bullshit. They will stick to that figure, and try to cut claims down that much regardless, just to make it seem like a success. They will employ doctors for these medical assessments who are not specialists in the disabilities they're assessing for and do not know/understand what they're assessing. They will employ those rare doctors I've met who don't believe that invisible disabilities exist and who have, in the past, laughed me out of their office for daring to ask for a referral to OT.

I foresee many, many people who genuinely deserve DLA, losing their claims. I see many, many people who are only able to continue working because of DLA, losing their jobs over this and resorting to claiming actual out-of-work benefits like ESA, costing the government lots of money. I see many, many people who rely on the money to pay for carers, trying to get along without them, hurting themselves and ending up either in hospitals or in care homes, costing the government a lot more money.

This is a stupid, stupid move and the majority of the majority (read: healthy people) need to understand that. I hope to God those discriminatory comments I came across were just a vocal minority. I'm very worried that they're not.

EDIT: Oh, I forgot to mention something about DLA that's been bugging me. It's supposedly non-means-tested, for all the reasons I mentioned above. And that's the way it should be, it makes sense. And whilst DLA itself isn't means-tested...the assessors will take the fact that you're working to mean that you're obviously not disabled and don't need help, even though you need it more than ever at that point. I know people who are terrified to even attempt to find work because of the risk it poses to their DLA, which, once again, they need.

Not only that, but the DLA I get, that isn't means-tested, affects my income from ESA and housing benefit as those are means-tested and include DLA as a part of my income. And then make decisions as to how much money to give me based what a normal person needs to live on...

Benefits and Bureaucracy...Again

Continuing on from last time, I went to see my GP today. She told me, in no uncertain terms, that she was unable to give me a medical certificate from six months ago, and she could not fathom why the ESA people were asking for one now rather than in December when they 'ran out'. She also told me that since they've declared me unfit for work, I don't actually need any medical certificates and she can't understand what they're playing at, but at the same time she wasn't in the least bit surprised as she gets people coming in to see her all the time with ridiculous tales about trying to claim benefits. At least I'm not alone.

I then started crying at her. I'm not proud of this. I just got so goddamned frustrated that I was being sent around in circles when I'd thought that finally everything was actually sorted out for once and got my hopes up. I apologised for it, and she told me not to worry, handed me some tissues, and re-assured me that it wasn't my fault. I know it's not, and I know I shouldn't be crying - I just can't stop myself from crying for silly reasons sometimes. Alright most times.

Anyhow, I'd call the ESA people and have a good old rant at them but my sister's stolen the phone so it will have to wait. Will update later when I've managed to get hold of a phone (and managed to sit on hold on said phone for a good hour or so).

UPDATE: Called ESA people. Explained the situation. They insist that they cannot pay me anything if I don't have medical certificates to prove that I'm unfit for work. What the fuck is going on? They declared me unfit for work, but now need proof of it? They're saying that if I start sending in medical certificates from now that I'll get paid from now on, but they won't be able to pay me for the gap from December until now. I don't get it. At all. Whatso-fuckng-ever. I am ridiculously bad on the telephone though and couldn't argue because I was in the middle of bursting into tears. I so need somebody to sort all of this out for me... :/

Benefits, Bureaucracy and Drugs

Not too much to say today but I promised myself I'd update this daily. Not entirely sure why. I think it was just to keep me writing, even if it's not of the creative variety.

...Blog-writing is better than no writing, no?

Of all the un-interesting things that happened today, the most annoying was spending an hour on hold with the benefits people so that I could ask them why they hadn't paid me this week. Turns out, that apparently they've had no medical certificates from me since December and therefore could only pay my back-dated benefits up 'til then. Now, not only have I been sending them like clockwork every month, I've been sending them seperately. I could understand them all getting lost in the post if I'd sent them in one big packet, but for every single one, sent in different envelopes at different times, to be lost? That's a bit ridiculous. I think it's a lot more likely they did receive them and they're just lost in the system somewhere. Goddamn bureaucracy. Speaking of goddamned ridiculous bureaucracy, why the hell do I need to keep getting medical certificates each month to say that I'm unfit for work when I have a lifelong, progressive condition. It's not like I'm magically going to get better one day, not tell them, and continue to scrounge off benefits. Jesus.

Oh, and apparently my dad was relying on my benefit money getting paid this week so he could afford to put a deposit on a car and buy drugs for Glastonbury in a couple weeks. Now, I know I owe him a lot of money, but he's my dad, dammit. It's not like I borrowed lots of money off him for frivolous things and never paid him back. I owe him money for a few months rent as I stayed at his house when I was homeless and had nowhere else to go. When I was seventeen, by the way. Again, I know I owe him money, I'm not debating that, but I did give him a quarter of it just last week when I got my first payment from benefits. I don't know what the hell he did with it and I don't know how the hell he was planning on getting to Glastonbury before I told him I was getting my benefits through finally. I'm willing to bet he spent it all on drugs. I've not actually told him that I'm not getting paid until I sort new copies of medical certificates out from my GP, but he's gonna get pretty upset with me. I don't think I approve of him getting upset with his daughter for not providing him with drug-money. Or of him charging me rent when I was seventeen and homeless.