24 Hour cafe in Leeds?

Ames

Yes I have support with the appeal. I've got a brilliant welfare rights guy who's really angry on my behalf and doing everything he can to get it reinstated as quickly and painlessly as possible. I've got support from my outreach worker, and my GP's very supportive - she wrote a three page long supporting letter going into great detail. Which was hard for me to read but hopefully it'll swing it in my favour, since the original decision letter said it was based on my claim pack and the GP report.

I just wish I had support from my family. I showed them the DLA letter, but now whenever I say 'I had a bad day because of x' they say 'but you don't have x, the DLA letter said so'. Dad's coming to the meeting tomorrow, not sure if that's a good thing or a bad thing, but I'm going to show him the copies of letters I've had from my GP and outreach worker. I really don't know what else I can do to get through to him that the things he criticises me for aren't things I choose but are symptoms of my illness.

If he says 'but that doesn't make sense' one more time I'll scream. Of course it doesn't make sense, that's why it's mental illness!

londonsurrey

One of the most painful and sad lessons I learnt was that sometimes, family don't want to know. They can't face up to it.

And that cowardice that makes them incapable of facing up to it is the same cowardice that stops them from admitting that they don't want to face up to it. And all the person they're supposed to be supporting gets is "Do you really think so?" and "Are you sure?".

It's a double whammy, and accepting that they really are that cowardly is what allowed me to realise that they were useless in so many respects, and nothing like what they purported to be.

jazabelle

Ames wrote: »

I just wish I had support from my family. I showed them the DLA letter, but now whenever I say 'I had a bad day because of x' they say 'but you don't have x, the DLA letter said so'.

That's so frustrating, but probably shows ignorance of the system as well. Most people believe benefits like DLA to be assessed reasonable correctly, and so when it says a family member is unwell, and they are already unsupportive - it gives them more 'proof.' Until you've been through the system and realise the decision makers will swear black and white the opposite of what doctors/consultants/the person say they can do.

I have physical illnesses and the system gave me a breakdown due to what happened when I was applying - so what it does to people with mental health illnesses I can't imagine.

It's funny though - my dad wouldn't accept my health conditions, arguing with me about why I was in the wheelchair (because I can't walk?!) and that blue badges were for 'other' people. He's finally - after 10 years, getting his head around it - to the point he's like 'you can't do that, you're disabled.' Argh! You can't win with some people!

I know it's much harder with your family - it's such a rubbish situation.

Ames

Well I've been discharged, clutching 14 days worth of meds in my hand.

I'll be seeing a CPN (not a social worker like I was told) weekly for a few weeks, I don't know about after that. She did say that she wouldn't discharge me unless she was sure I'd be ok.

As for referrals. The eating disorder clinic one seems to be possible, but if not then there's self help groups. There's a healthy living service who can help with exercise so I've asked to be referred to that.

They said they'll refer me for psychology but as the waiting list is so long I'll be better off looking at non statutory routes for therapy. There's only two I qualify for (ie I'm in the age/sex/location criteria). One is a minimum of £11 per session so not possible right now. For the other, the last I heard they'd closed their waiting list but I'll find out what it's like now.

I asked the CPN to speak to the OT on the team for ideas of what I can do to get out and about and sociaise. Dad said he didn't think I should be doing that as I should be concentrating purely on my resits. Eventually I got him to shut up long enough for me to explain that I just want to have a reason to leave the house twice a week. I'm not talking about suddenly going out all day every day having fun (as if!). If I stayed in all day every day other than appointments, which he was pushing for, then my MH would nosedive.

So I thought it had all gone ok.

Then we went out for a meal. Sister was over too, househunting, so there were all three of us. I tried (badly) to bring the subject round to my problems by mentioning the benefits programmes on TV last night. Which set dad off on his rant about benefits. Sister said she'd seen somewhere that for bipolar getting a job is a good thing. I said that I think working can be, and in my case my voluntary work really helps. But why would anyone work for free when they can sit on a supermarket checkout and earn. (I can't do that, for lots of reasons. Sitting on a couple of no pressure committees is totally different to paid work).

I tried to give dad my DLA paperwork to look through. Jazabelle I think you were right about him not understanding the system. I thought if he could see it all in front of him it'd help. 1. The DLA decision saying I can do x,y,z. 2. The GP report giving little to no information about x,y,z. 3. My GP letter giving very detailed info about x,y,z.

He read some of the report, said he didn't know what the meds were, and that of course I didn't qualify for DLA on the basis of it, it didn't say what my problems were. I'd hoped I could get him to see that that was the point - that the DLA is a bad one because it wasn't based on evidence, and that the questions are too vague to be useful anyway.

He didn't even try to read the GP letter, just said he didn't understand the medical talk. Except it's not medical talk! 'Ames often presents in my surgery without having washed'. And other similar things.

So I give up. There's no point trying to get him to understand. Which would be fine if he could just leave it alone and not keep criticising.

Talk then got on to houses and how I don't know what to do about buying, what area etc. Dad suggested I could rent a room out. Previous attempts at living with other people have been disastrous, and I get bad enough about people coming in the flat, let alone living with me.

So why not buy a building already split into flats. For £50k?! Get a mortgage. I'm not capable of looking after myself let alone being a landlord. My shower hasn't worked since before xmas because I can't face making a phonecall to get it fixed, how on earth am I supposed to take on the responsibility of being a landlord!

Not to mention that I couldn't afford a mortgage. It's not as simple as renting out a flat (they suggested buying a big house and converting it myself), and using that money for the mortgage. I'd have my benefits reduced by that income, and then have to find the mortgage out of the rest. But of course dad and sister are hoping that my DLA isn't reinstated, that I fail migration to ESA, and then suddenly realise that there's nothing wrong with me and get a job and everything goes rosy and soft focus.

I mentioned again when we were with the CPN how I'm constantly aware that I'm a failure and a disappointment. Which is something I said in an email to dad a few months ago. Of course there's still no response from him to it.

He couldn't even bring himself to say the word 'hospital' when talking about it. I don't know if he can't handle a daughter who's ill, or if it's that he genuinely doesn't believe MI exists and so thinks I'm lying or something. But I've tried everything now, so I just need to find a way of dealing with him.

Anyway, I need to go to bed because the cleaning starts tomorrow and I need to get up early so that I can clear the hallway enough for them to get in the door. Hopefully by Friday the flat'll be nice and sorted and it'll cheer me up.

Ames

Day one of the cleaning's been and gone, they've got so much done although it's been more decluttering than cleaning. It's going to take more than two days I think, but within reason I'm prepared to pay as much as it takes.

I think they're getting sick of constantly having to ask 'do you have another box for these books' and 'we've found another pile of books to put away somewhere'.

I think I'm going to pile them in a corner, and when the cleaning's done get someone in to put the bookcases I've had for ages up so they can go away properly.

It's taking me a while to get used to the blue stuff all over the floor though. I think it's called kaah pitt or something like that.

dragonette

*hugs* wish there was something I could say that would be more useful than virtual hugs, but please accept them as sincerely given with sympathy and a small degree of understanding. You sound much better in the last two posts which is great to read

I'm not sure talking with your family helps you, maybe keeping things distant would releive you of the pressure of wanting their acceptance? Unfortunately some people simply cannot understand something they have never experienced, and their continual arguments must be very upsetting. In all honesty, its none of their business what your benefits are or how you live your life - unless they wish to be supportive ofc!

Hope a clear and clean flat helps (I see mine as a safe haven, not tht its very tidy!). Sending lots of hugs and positive vibes

Dragonette

Savvy_Sue

Ames wrote: »

I think they're getting sick of constantly having to ask 'do you have another box for these books' and 'we've found another pile of books to put away somewhere'.

I think I'm going to pile them in a corner, and when the cleaning's done get someone in to put the bookcases I've had for ages up so they can go away properly.

Ah, a woman after my own heart! But would they put the bookcases up for you?

Ames wrote: »

It's taking me a while to get used to the blue stuff all over the floor though. I think it's called kaah pitt or something like that.

:rotfl:

Ames

Ah no, I've got someone else lined up to put the bookcases up - a guy in my writing group's son is a handyman and struggling to find work right now. So if for now the books just get put in boxes or piles it'll do until I can get him in.

System

After very recently having a major clean up of my living room i too have come across this mystical stuff they call "carpet" I also have more books than i know what to do with! But have set myself the challenge of trying o read at least one a week so i can start giving them to charity

In regards to family, i second maybe trying to distance yourself a bit. It sounds like they have no clue about MH and i don't think any amount of trying to explain in on your part will change that. I've long since stopped talking to my family about my MH problems as try as they might, they just can't understand it (and things are made more complicated by having a mentally ill great aunt who continually tests their pateience!)

Yorkie1

Ames I'm really pleased that you've got a CPN and it appears some structure / plans for the next steps. You sound really positive about that, and the kaah pitt (love the joke!).

From what you've described here and on other threads, your sister and dad sound a complete nightmare. You keep hoping, repeatedly against experience, that they will understand and support you. But they keep letting you down.

This isn't at all a criticism of you, please don't take it that way - it's natural to hope for your family to be there for you. But given their constant failure to do so, perhaps you might want to work with your CPN at trying not to share so much info with them. At least that way, you can't be undermined by their self-centred and ignorant outlook.