Taking control of my life

Ames

And yet another update from me!

Dad came round today with my tv and stand. I did a bit of tidying up before he came but decided not to knock myself out - housework just isn't worth ending up bedridden for a week for, as the lady at the ME clinic told me. It was tidy enough, and I was happy with it. But of course it wasn't good enough for him - I hadn't hoovered, and there was a day or so washing up in the sink. He did try to be supportive about it, saying that I needed to keep up to it and stuff, instead of just blowing his top and shouting and saying he'll never come back. In fact, he said that if I couldn't put the shelves up myself he'll come and do it. He was supposed to be doing them today, but pointed out that where I wanted them to go would mean anyone coming into the flat would knock their heads on them. So it's really good that he made the effort to be reasonable, although I've warned sister to expect a rant from him next time they speak.

He did suggest that it would be a better idea to get rid of books than to get more shelves, and that was without him seeing the 300 in the bedroom! So I need to find a wall they can go on, for books cds and dvds.... there's a whole wall in the bedroom that would be perfect, but has to be kept clear because of the mould. Much better to inconvenience the tenant (try keeping outside walls clear when that's 3 out of the 4 in the room!) than to actually fix the problem...

So, I now have a nice 32" LCD tv... I can hear the DT regulars getting their pitchforks ready now!

I need to decide what to do about Barcelona. The money side's not a problem, I'd miscalculated and had £25 more than I thought, I've been good this week, and thanks to sharing rooms and cars Bunny's birthday should cost half what I expected. But it means missing one of the expert patient programme sessions (although they said that going on holiday was more important), and rearranging a hospital appointment. So I'll see what the hospital say I think.

Anyway, there's far more important questions right now... like coffee, or wine?!

Ames

Time to moan now, again.

First of all I got a truly appalling mark on my essay, a bare pass. The big problem was that I didn't understand the question, and my stab at it was wrong and so didn't make sense. I've emailed my tutor and she says I can ask for help (I didn't think I could) so I know that for future. Need to work my backside off now to pull my overall grade up.

I had the financial assessment for the carer today and I can't afford the amount they want me to pay. In fact, they want me to pay more than the care costs, and so wont provide anythiing. That means going to an agency, which costs twice what they've said I can afford... I've thought about it since she left and there's a few expenses I didn't include. Some she asked me about but I thought they were so cheap they wouldn't matter, and I was so flustered by having someone in the flat that I just wanted it over and done with - talk about shooting myself in the foot! Now I'm worried that if I go back and say 'actually, I do have those costs' it'll look like I'm just making it up. I've bought new ones today so that I have receipts but I don't know if that'll be enough. There's also the petrol - it should be included, but until I can provide receipts they're only allowing me £3.25 a week, because they say I'd do about 25 miles a week and they pay 15p a mile. I actually spend around £20 a week. I've also set up a cleaner. Between the petrol and the cleaner it wipes out what they say I should pay, but I don't know how long it'll be until I can get receipts and get it added into the assessment, or if it can be backdated.

There's also the usual problem. The system helps people with physical or mental health problems, not both. I saw it that I'd get the carer for the physical problems, and I'd pay for my mental health needs. but when I've tried including them in the assessment, they're just 'normal living expenses'. Things like going out to have a coffee in a busy cafe so I'm not totally avoiding crowds and making it worse when I have no choice in the matter.

Anyway, I'm sure it'll get sorted eventually, it's just a worry about how long it'll take and if I'll get anything backdated. I also need to buy equipment, but I have to buy that and then they knock so much a week off the assessed amount - but if I'm paying the assessed amount I wont have the money spare for the equipment! And I'm mad at myself for not keeping my receipts for the last few months, there's so much that would be classed as equipment but I can't prove that I bought it (apart from it being here in the flat, but I don't think they'll accept that). I've bought a box file today though to keep ALL my receipts for the next year in, so I'm prepared for the next assessment!

I've been really down all day cos of not having anyone to talk to about it. Ex still isn't speaking to me at all because of the essay thing, and there isn't anyone else in RL. Sister just phoned and I told her, but she couldn't really do much, just said that if I have to pay myself then I'll have to do it and find the money somehow. At least I can remind her of that when she's asking me for money when she's moved back next week!

Anyway, sorry, I just had to get it all off my chest.

GeorgeUK

Since when is a pass mark appalling? Disappointing possibly, but you passed!!

Sorry to hear about the financial mixup. Hopefully they will be able to back date it and at least you now know what to do and keep receipts for - you may be able to request a reassessment in a few months.

You'll jsut need to find the money somehow? Great, when can she start paying you back?

Hope things improve for you soon and don't let this hit you too hard. It just means you need to fight a little longer for what you should be getting.

Hope everything else is going okay.

Ames

Thanks George, I'm feeling a bit better today. I'm seeing my support worker at 12, so I'll see what she thinks about my MH needs. I need to be really careful right now cos I think I'm heading towards depression and my mind's twisting things. I keep thinking 'how am I supposed to keep my petrol bill to three quid a week' when what they actually said was that's all they can allow me until I provide receipts. Anyway, I'm sure it can all get sorted eventually.

GeorgeUK

Ames has been sooo naughty - no updates at all this month...

Shoe_Gal

Consider yourself nagged - when you get back from the party!

Ames

Sorry, I know I've been bad! The party was ace though.

Right, time for an update.

Physical health: I saw the haematologist who said that my blood count hasn't changed all that much. He said that he can see how other doctors would think it had, but to a blood doctor it's negligible, and as it's kept to the same pattern for the last 6 years it's nothing for them to worry about. He did some more sensitive tests which all came back the same as before, so that's fine. He said he definitely doesn't think I need a bone marrow test because blood tests are so sensitive now that they can get all the info they need from that. Which I'm very happy about! So nothing's really changed, but at least it's something else that can be crossed off the list of possibilities. I'm seeing the immunologist on the 19th so I'll see what they say then.

Mental health: is getting worse and worse. I'm hearing things (phones ringing, people calling my name) which aren't there, and a few other 'early warning signs'. I've spoken to my GP so that she knows, and I'm counting down the days till I see the psychiatrist to talk to her about it all. That's on the 22nd and I need to start writing a list of all the symptoms so I don't forget anything. Hopefully it'll just mean a tinkering of meds, since I've got sod all chance of getting any other help. I haven't heard from the psychologist, so at best I've gone back to the bottom of the waiting list, at worst they've refused to accept my referral. I've heard of a few other therapies that might be useful, so I'll mention that to her as well. I've also put a few safety nets in place - in particular getting my meds weekly again so that I can't overdose.

George might want to look away now!

My weight has gone back up and reached critical point. I've had to come off the pill because my weight combined with my lack of mobility makes me too high a risk. I'm half a stone lighter than I was at my heaviest, so I'm not sure why I've had to suddenly come off it, but I have. Instead I'm going to have the mirena coil fitted I think, it seems the best option to control my heavy, long, painful periods. I'm also trying to lose weight and be more active.

You can come back now George!

Work with my support worker is going well, I'm working on saying 'no' to my sister, and on explaining things more to my dad. I've realised that it's unfair of me to expect him to understand my mental illness when I don't actually tell him about it, and just assume he'll be nasty about it. I should give him a chance, so I am doing. Instead of saying 'I've joined a group that has social activities', I've explained that it's for people with mental illness. I haven't told him about my latest symptoms because I don't want him to worry, but I will do when I've seen the psych and have a solution in place.

As for my sister, she's annoyed me a few times. I want to go to Download festival, and I can get tickets for two carers to go 'free' (although we'll actually split the cost of the one ticket three ways). I'd just decided to who to ask to be the second carer, when she phoned and said she'd arranged it all with a mutual friend. I was gobsmacked - surely it should be up to me to decide who my carer is?! Anyway, I calmly told her later that I wasn't happy with what she'd done, and she accepted she was wrong. I'm still stuck with the consequences though, but hopefully we can muddle through and I wont feel too bullied by them, as the friend's closer to my sister than she is to me.

In general though sister's been a lot better - she actually thanks me for helping her, and checks in advance if I can do things, and doesn't mind when I already have plans. Which is a big step forward! Although she still criticises my high heels.

Money wise I'm doing well, although I really need to write some overdue debt letters this weekend. One, the egg loan, has come back even though it's in dispute - it's been sold on twice now since I asked for a CCA. I need to find the 'it's in dispute, bog off and stop bothering me' letter. Also two of my other debts are being chased and I need to sort out an f&f on one - I should have done it weeks and weeks ago, but have been a bit too down to deal with anything, even writing this diary. Then on the Barclaycard I need to do a CCA request to the DCA, and if they produce anything arrange an f&f. Thanks to the money I've been putting away since last summer I should have just about enough to pay them both off.

Well, I think that's all for now...

Ames

Ooops no, I've just remembered another couple of things!

I've booked to go back to Venice in April. It's just for a couple of nights, costing £60 for flights and accommodation. It gives me something to look forward to and I can't wait to go. I think I'll enjoy it more than last time cos I'll know my way around, I'll know where I want to go, and where to eat cheaply and things.

Education wise, I haven't been to Italian since before xmas for a variety of reasons. I'm going to email and ask if I can repeat it next year when things'll be more settled. I'm also doing my two OU courses. The politics one I'm still not getting great grades at because of my essay writing lack of skills, so I'm going to have a look round online for tips and things. The economics one I've only just started, but I'm really struggling not to get bored with it - it's just repeating things I've already studied at A level, I'm sure once I get past the stuff that's revision I'll find it more interesting. It's driving me mad though that the statistics are waaay out of date. How can we assess the 'new industrial revolution' of the internet using statistics from 2000? It's ridiculous! Although I was amused that they managed to slip into a serious passage that the flush toilet was invented by Thomas Crapper. It was so obviously contrived!

And I finally have the old settee gone, they were meant to collect it on Feb 16th and kept going to the wrong place, but after lots of phone calls it went this morning.

GeorgeUK

Good to see you back Ames.
Hopefully the doc can sort your meds out for you.

Could your not taking the pill affect the other meds you are taking or would this not be a factor?

Letters:
Debt in dispute - http://forums.moneysavingexpert.com/showpost.html?p=11636233&postcount=5
F&F1 - http://forums.moneysavingexpert.com/showthread.html?t=1200137
F&F2 - http://forums.moneysavingexpert.com/showpost.html?p=19119435 (post 12)

Hope things get back on track soon
Welcome back Ames.

Ames

Thanks George.

Not taking the pill wont affect my other meds, it just means that unless I use something else I'll have horrendous periods.

I think parents must be capable of some kind of doublethink though. I told my dad about it and he said, very happily, 'but you're not sexually active'. Yet he wants grandchildren! So he has to change one of those views!

Thanks for the letters links, makes my weekend a lot easier!

I'm being a bit naughty though, I'm supposed to have an OU tutorial this morning but I can't be bothered going, I'm really achy today and didn't sleep well, and it's just going to be covering stuff I've already done at A level, so I can have a more productive day doing housework and stuff and stuff.