Taking control of my life

Ames

I missed my appointment. I was convinced it was at 4, the same time as last time, but it was at 11. I phoned when I realised and asked for it to be rearranged, but I'm so mad at myself for missing it at such an important time.

DF, I know what you were trying to say, and that's my argument too - that independence is about more than just doing things without needing to rely on the system. And I don't think that having to choose between showering, cooking a basic meal, or going to a hospital appointment on my one good day a week is helping my independence, especially since (as I explained to the SW) any one of those things guarantees at least one bad day following it. But maybe I'm getting confused between independence and quality of life? And it's not fair for me to have quality of life if it means someone else loses independence completely? I don't know, I've been thinking so much about all this that it's starting to blur.

I've heard back from the council about the committee I've resigned from. They're sorry I'm leaving, especially due to health reasons, and thanks for the time I've put in, now can they have their documents back. No chance, I'm entitled to those as a member of the public, just because I can't leave the house doesn't mean I don't want to be able to make sure they're sticking to the documents they've set out! In fact, that's another positive - if I'm not spending my time and energy sitting in beaurocratic meetings, I'll be able to scrutinise documents more carefully and be a bigger thorn in their side.

dancingfairy

Oh no - that's bad news about missing the appointment. And the whole independence/quality of life thing is irrelevant - whatever they call it - you deserve it as much as everyone else. It's your right - I can't for 1 minute think that it's a case of you get it so someonelse can't - it does work like that does it.
Even in terms of pure numbers it makes sense to help you- it'll cost a lot less to get someone to help you out for a number of hours a week than to wait until your health detoriorates even more and then have to give you a lot more support and help to get you back to where you are now.
df

Ames

Unfortunately you're thinking logically! They just don't think like that, they just think about this years budget, not how things might be in a few months.

I'm just really annoyed about the comment that I'm more independent with this situation! If they'd said 'look, you're 28, single, only a danger to yourself and don't have charities and dependents to kick up a fuss, so you're not a high priority' then I'd at least respect them. But to dress it up as doing their best for me just winds me up!

I'm just really glad that I'm hypomanic and therefore in a mood to be able to fight, there are times in the past where if this had happened the best reaction I could have given would be to give in. And it's good that it's happened at the time in my life where I've got the most medical support too.

Ames

I've had an email from the complaints administrator at the adult social team, he's looking into it and will be in touch.

dancingfairy

Sounds like a start - let's hope they can actually change the decision. I hope they get it sorted for you quickly but fear you may be in for a fight.
On a more practical note is it possible for someone - your sister or dad or ex to cook up some huge batches of chilli/spaghetti/lasagne etc and divide them into containers in the freezer that you can just reheat? o.k it's not ideal but for the bad days it might be an option- just not sure how if it would go against you for appealing the fact you need help?
Have just noticed Jellie has already suggested this.
Also can you do your shopping online through Tesco - I know they bring things into the house for you (they bring it up to the first floor here) - it would mean you only have to worry about unpacking rather than shopping and dragging it in? It's not ideal though again.
P.s I think if you don't get any success with your council then you can appeal to the local government ombudsman - I'm not sure what things they cover but it's another avenue to explore.
df

Ames

I've asked my sister to batch cook for me, she said yes but she's always too busy. Once my income support gets sorted to the right rate after OH leaving (I'll get an extra £100 a month) then I can start getting my shopping delivered. I know I'm onto a losing battle with the cooking, because for years the only help they've offered is to microwave a meal, so if you can do that for yourself then you don't qualify for help. It's the personal hygiene that I'm mainly bothered about, and maybe getting some help to get out and about. It's all about balancing, if I had help with some areas, I can do more in others, or pay for help. But paying for it all myself, or trying to do it all myself, just isn't possible. Personal care costs upwards of £20 an hour, I just can't afford that.

Ames

Just noticed in the tiiiiny print on the email that it shows all my details (home, council landlord, all sorts) and under disability it says 'mental health difficulties'. Doesn't mention the ME. I think this is the problem, they could deal with one or the other, but can't get their heads around how one affects the other, and that ways of dealing with a problem can affect each side in different ways. They don't call it complex needs for nothing.

Ames

Right, here's where I'm at now.

Complaint being looked at by a SS administrator.

Heard nothing back from councillors/Mind/outreach team/psych teams.

Been to see GP who seemed horrified at me being told to not go out, she says get them to write to her and she'll give them any info they need. I'm a bit surprised that they haven't contacted her as a routine part of the assessment!

Got loads of help and advice from people on here and on another forum, so I know how to proceed if I need to go to a formal appeal.


Otherwise, things aren't too bad. My sleep's messed up, I wanted to try Melatonin but the GP can't prescribe it, it has to be suggested by a specialist. When I eventually get to the ME clinic I'll ask them about it. Disturbed sleep patterns are a classic ME symptom, at the moment I'm starting to feel most awake between 10pm and midnight, so trying to sleep at night and be awake as much as I can during the day is difficult. In the meantime I'm going to try Nytol.

The weather's awful! Yesterday it was 28 degrees and I was too busy/tired/achey to sit outside, today it'd be really good to do that and it's siling it down (Yorkshire for raining heavily). Typical!

Bought a new coat and bag on ebay for £12 yesterday, more than half of it was postage! The coat is one I've wanted for ages, a couple of years ago they were going for about £50, so I'm very happy with that. It's a cross between a coat and a cardy, so I can use it outside in autumn, then snuggle up in it inside in winter. I also seem to have dropped a dress size on bottom and another half a dress size on top, so I'm stopping buying clothes for now. The ones I have got recently are all next/monsoon, so I should be able to sell them on in a couple of months if they don't fit and get new ones in a lower size without having to put much towards.

I think that's all I've got to update for now!

Ames

I've just had a read receipt back from one of my councillors, so hopefully she can get involved too now.

I got the catalogue through for Ilkley Literature Festial today and some of my favourite authors are giving talks for £3, as well as a few other events I'm interested in. So sod SS, I'm going to book tickets and do my best to go. If needs be I'll pay privately for someone to come out and help me shower those weeks to make sure I can get there, since it's for a special reason. I just can't afford to pay for it every week.

Suggested a couple of events to my sister, but she can't afford it. Yet she can afford £20 on wine yesterday, and a new cd... I think what she means is it's not a priority (even though the events were ones she asked me about).

Ames

Had a reply from my councillor, she's forwarded my email to the director of adult care who's ordered that the situation be looked into. So that's adding weight to my complaint. Now I'm starting to worry about her coming back on monday, I don't really want to have to face her after I've made a complaint about her and there's no-one who can be here with me.

I was supposed to be going to Scarborough this morning to pick up the tent and stuff from dad's, but wasn't up to it. I'll go on my own next week while sister's down south.

Got a letter from the DWP today. First line says my change in circumstances doesn't affect the amount of income support Ill get (it bloody well should!), second line says that from July 30th it'll be going up. I think that whoever worked out the wording for these standard letters went to the same admin school as DCA letter writers...