Taking control of my life

ZTD

Ames wrote: »

Well, today's been quite productive.

I was supposed to have blood tests done for the ME clinic but I cancelled. I'm full of cold and since these are repeat tests because there was a problem last time I didn't want them to be affected. I think the 'problem' was my raised white blood cell count, which I've had for years and is a symptom of my immune problem. This could well scupper the referral though, as if they dig they'll realise that their doctor is also my consultant immunologist and so wont see me on two lists.

Why would they dig? Their job is admissions.

Ames wrote: »

But I was desperate and asked for the referral so that I had medical backup when my sister tried to 'cure' me with her mantra of exercise and doing more, pushing through pain and fatigue, being the best thing for ME.

That's one of the great controversies of ME - exercise is part of the NICE guidelines. In a paper I saw, 90% of ME sufferers said exercise made things worse.

Which is a fair majority. But that is just Doctors not listening to their patients I guess.

Ames wrote: »

And social services kept going on about how the ME clinic will change my life and being a reason for not helping me, so trying to get there jumps through a few hoops there.

They have no idea what an ME clinic involves: It's just words to them.

Ames wrote: »

Then bought sister's shopping and got her tamiflu. I must be a mug, I'm having to get my own heavy shopping delivered, but then go and buy hers which was all cartons of juice, big bottles of milk, tins, and potatoes. When she asked me to get a few things I thought she meant bread and a small bottle of milk!

Yes you are...

Ames wrote: »

Then Ex came round and did some tidying, we've rearranged the kitchen so I can get to things easier, not having to lift cans from bottom shelves etc. And at £6 an hour he's cheaper than the cleaning company. So when all the tidying's done I can get them in.

Just so long as he works for it...

Ames wrote: »

Nearly forgot. Ex is now threatening to 'report' me if the flat isn't better by xmas. God knows what he thinks he can achieve!

If the Council has enough budget to go chasing after complains from ex-partners, then they have enough budget to look after you.

Ames

It's complicated with the ME clinic. I saw them before and they said they wouldn't see me until my mental health was stable, which it was when I asked for the referral but isn't now. And there were no blood tests last time. I think they've got a tiny budget and so have to pick patients they can help the most, which is fair enough.

The exercise is controversial, because I think it depends on the definition of 'exercise'. I totally agree that doing as much as you can is better than staying in bed all day every day - that leads to muscle wastage and other complications. But I also think that it's important to listen to your body and know when enough's enough. The problems come when people start telling you to push past that level, which is when you crash. I think that's partly why I've had it so long - I have a manic episode, push myself physically and ignore my body's warning signs until it's too late. Pacing is the key. I was once told by a doctor to walk a km a day for a week, then double it the next week, then double it and so on. Totally unrealistic! I think pacing 'exercise' (which can be just things like getting out of bed) is good, graded exercise is bad. I saw a cartoon once which summed it up - one lap, two laps, relapse.

Ex is working for it, he's doing the grunt work while I stand and direct. Like 'move those few dozen tins of food from the bottom shelf to the top cupboard'. or 'the car's packed full of festival stuff, bring it in'. If only he'd been this amenable during the relationship...

Now, does anyone sell books on ebay? I was going to finally list a load tonight, then realised I need pictures. Is it ok to use stock photos so buyers know what edition it is, then give a detailed description? Or do I have to take photos of the actual books?

Ames

Right, time to set myself a couple of short term goals.

Firstly, to make the £23 in my purse last as long as possible, at least two weeks. Should be easy as the cupboards and freezer are full, so food wise I'll just need milk, bread, and possibly a little bit of veg. The main thing is to not go into town and be tempted, so ex and sister are going to have to find other ways of going to the jobcentre to sign on. It's ridiculous me giving them a lift then having to go to a cafe and spend £3 on a coffee while I'm waiting for them to finish! The exception to the no spending extra will be if I sell things on ebay (unlikely, since I have to actually get round to listing them first!), when I'll have to take money out of my account to pay for postage, but that's not really spending since it'll be replaced when Paypal money comes through.

The other thing is my book. I planned to finish the first draft through summer before my OU course starts, but haven't done anything. So from tomorrow I'm going to do a chapter a day. Not as ambitious as it sounds, I've got a very rough 'half' a draft, I just need to type it up and add in all the description. Can't start it till tomorrow though, because I need to find the notebooks and memory stick that it's on, which is today's task.

Ames

I've had a response from social services to my complaint. They say that I'm entitled to 'challenge the assessment process and outcome' and so they're having me reassessed by someone else.

They're also sorry for getting my name wrong, they've printed another copy of my assessment with it spelt right and will make sure it's checked in future before giving me any documents.

I have to say I'm disappointed. Shockingly, I was more bothered about the mistruths, assummptions and missing answers than about my name. In fact, I only mentioned that as an example of the sloppyness. I have to say I was expecting a more in depth response, actually addressing my concerns. The words 'white wash' spring to mind.

Hopefully the next assessment will go well, but after a one page, three paragraph answer to my in depth criticism of the first one, I'm not holding my breath.

Time to start thinking of that plan B I think.

GeorgeUK

It seems like the "if we ignore it, it'll go away" management strategy.
Are you going to give them a little reminder that one of their staff (who's actions they are held responsible for) has been lying and making things up on a government document?

Ames

I'd like to but I'm not sure on the best way forward. I think I'm going to find an advocate and let them deal with it, if it's what they do.

Ames

Just done something pointless. Mum phoned and I ended up asking her about sisters allegations from last weekend. What she said tallied with what I remember - that the GP thought it was depression rather than ME, until the paediatrician diagnosed me, but mum always agreed with that idea. But anything about that was said to me in my appointments, not to sister in hers. It's strange though that mum could remember instantly what was said in appointments 12 years ago. She agrees with me that sister could have overheard something and over time thought it came from a doctor, when it was just parents or someone talking. I'm still going to speak to my doctors about it though when I next see them, apart from anything else I need to find out how to deal with sister assuming she is wrong.

Mum also said that she never told sister to sort me out, that she's always disagreed with her trying to impose her ideas on me. Which is what she's told me while it's been going on over the last year, that I have to be my own person. But she could just be playing us off against each other.

So all in all a bit pointless really.

dancingfairy

Glad you are getting things sorted slowly. Not sure about the whole family thing - it sounds soo complicated.
Hope the whole social services thing can be sorted - maybe someone on here will be able to help you with what to do next re the social worker being completely incompetant as it's just not good enough to just give you another social worker - maybe your MP can help with this - explain you feel you are just being fobbed off and are deeply concerned about their professional standards.
Anyway keep going.
df

Ames

Yep, the family thing is veeery complicated! I'll wait until after the next assessment and then try to take things further, I don't want to jeapordise this assessment, but I do think they need to take this more seriously than they have done.

Had some good things happen today.

Met my mental health outreach worker, and she said she'll come to my next ss assessment, I want a witness more than anything. As far as our sessions go, we're just chatting over a coffee and getting to know each other first, then we'll see what she can help me with.

I'm doing a 'headspace' course, which is dealing with stress and anxiety and assertiveness, that starts next wednesday. It all sounds really informal and friendly and helpful. I still can't believe that there's all this help out there and no-one told me before now!

Seeing the psychologist again tomorrow, so hopefully we can start getting down to work now.

And best of all, two lovely DFW'ers have offered to come round and sort my flat out on Saturday (well, we'll see how much we can do in a couple of hours, getting it all sorted is probably too close to a miracle!). I've bought in the tea and biccies, and checked on the cleaning products, and I'll rest up on Friday so it's all go.

Ames

Been to the psychologist. The first half of it was me telling him my physical medical history (god forbid different NHS departments should actuall communicate). The next quarter was going over the same questions he asked last time. Then he said he doesn't think he's the best person to help me. He's trained to deal with depression and anxiety, but the ME complicates that. Encouraging people to be more active is a key part of the treatment for the former, but for ME it can make it worse. He thinks I need to see someone with experience of both, and is going to try and get chance to talk to my psychiatrist (surely not that difficult, since they're based in the same building!), and to people who know about ME.

It's complete deja vu - five years ago I tried to get referrals to the ME clinic and to a psychologist. The ME clinic wouldn't see me until the bipolar was stable for a year, and the psychologist wouldn't see me until I'd been to the ME clinic. So I'm expecting the same this time. Which is a shame, because the first session (dealing with my sister and being more assertive) was really helpful and I hoped to build on it.

Anyway, at least this time I have help from other agencies. There's the outreach team who are fab, and I'm enrolled on a couple of courses, one dealling with stress and anxiety, and an expert patient programme to help people deal with long term illness. Just hope I can manage to keep up with them all, it's a massive increase in the number of 'active' hours in my week. But I've nothing to lose by giving it a go.

Oh, and he'd never heard of NHS health trainers, so that explains why my doctors never suggested it!