When I swim I don’t use any rings or armbands or anything.  Just me in a swimsuit in the water.  Quite a few people who go to my Friday afternoon disabled session do use floats or rings or whatever.

And this Friday my friend Lucille swam a few lengths without her rings (usually she has two).  She did have hold of her carer’s hand and she was really frightened of trying.  But she did try.  And she managed it.  I was really proud of her and when I got into the coffee shop the first thing i did was go up behind her hug the life out of her, gave her a kiss on the cheek and tell her so.

For various reasons I was in a pretty bad mood that afternoon (not uncommon at the moment it seems).  And pretty much everyone knew I was in a bad mood because I was in one of those “make sure everyone knows about it” bad moods.  But seeing Lucille push herself helped me and then seeing her succeed did my heart a world of good and really cheered me up.

So we were having a “yay you!” moment over that and I was having a post swimming snack of a flyte bar and diet coke.  And I was asked by someone else if I wanted help putting my trainers on.  Obviously they didn’t realise the importance of the moment because they interrupted.

Anyway I said no, thank you, I’m eating at the moment.

Her response was that she’d known before she offered that I would say no. And then she started muttering about how I was (apparently) having mood swings.

She’s a carer for her partner who had a stroke.  And she told everyone that she was glad he didn’t have mood swings like I (obviously) was because that must make me hard to care for and she wouldn’t be able to cope with her partner if he was like that.

I felt really hacked off at that point in time.  And grateful that I have minimal care needs and people who “get it” providing my support.

Most of all, however, I felt for her partner.

And I felt for Lucille who had to have her moment of glory interruptted by the assumption that I would drop everything and that my saying no, thank you was the end of the world.

I’m sick.

Sick of being lied to.

Sick of people promising me things and not following through.

Sick of being kept hanging on.

Sick of having to justify myself to others.

Sick of people talking about me in front of me but ignoring me.

Sick of people interfering in my business.

Sick of being ignored.

Sick of being used.

Sick of people making decisions for me.

Sick and Tired of always being Sick and Tired of all these things and so many more

***

Yesterday in the bureau one of my colleagues commented that I looked bored.  I told him I wasn’t bored, I was fed up.  He asked what the difference was and I went “you can get pills for one but not for the other.”  He replied that he liked my sense of humour.  And it was a joke… but it also wasn’t.

I’ve had enough.

Whilst my parents are in New Zealand I’m having extra support.  And it’s driving me crazy.  Crazy I tell you.

Almost all of my carers have been late - and only one of them bothered to let me know.  On Monday the carer was 45 minutes late!  She commented that I didn’t look happy.  I told her that I was pissed off and had better things to do than waiting around for her to show up and in future to make sure I was told.  She told me that she didn’t feel well and all about her stress and family problems.

I’ve heard repeatedly how much they hate their jobs.

I ate half of my dinner one day and discovered I’d been given southern fried chicken that was raw in the middle (how I didn’t get food poisoning I don’t know).

And one saw fit to tell me that she went to school with someone with CP and she thought it was “really very sad.”

It’s always kind of been the thing that you don’t complain about these things - my mum frequently tells me she thinks the agency are good over all and it could be worse so leave it.  And when I do speak to the office staff about things the usual response is “that’s not like so and so” or “everyone else really gets on with X” so I gave up on them.

I was thinking about it earlier this week.  If I was at CAB and I told a client that I felt their problem was really sad or that I hated my job or went “you think you’ve got problems… try this on for size” all hell would break loose - and rightly so.

So why is it “acceptable” for carers?

Well, not any more it’s not.

I just sent an e-mail to the director of the care agency telling her I’ve been having issues (listed some of them briefly) and asking her to call me so we can discuss the matter.  I’d have called her myself but I didn’t want to go through the useless office staff.  And also, this way it’s on their bill and judging by how much they charge they can afford it better than I can.

The next Disability Blog Carnival is on Thursday over at Ryn Tales. And it’s theme is what professionals should know.

The short version is that they should know/realise/understand that disability is not a “one size fits all” experience. In more ways then one. Obviously there are different diagnosis e.g. CP, MS, whatever and there are different types of disability e.g. sensory, mobility etc. But also within diagnosis as well - my experiences of disability are not the same as those of Margo or Amanda or Dave and my experiences of CP are not the same as Shiloh’s or Moo’s or David’s or anyone elses.

So kindly don’t tell me or my parents or anyone else that “people with CP can’t do….” or that “our disabled people do X so Emma WILL do X as well.”

It don’t work like that. I’m not “Cripple who’s name happens to be Emma” but “Emma who happens to be a cripple and have CP.” I’m a person first.

Specifically I wanted to talk about carers like the ones I have come into my flat a few times a week. That’s a “priviledge” I pay for out of my own money and not one I think will be able to continue for too much longer. And it is very useful.

But lately a lot of my care visits have left me going “For the love of GOD people rah rah rah whatever”

I accept that home care is a tough job. Particularly for the people who come to me and do an hour with me, 15 minutes with someone else maybe and half an hour with a third person all throughout the day. They are constantly on the go and they are frequently pushed for time. However I don’t want to be hearing about how much you hate your job/want a new one or whatever every time I see a carer.

I had four visits last week from three different carers - two of them had serious “I hate my job” moans at me. I’m sorry you hate your job or that every single client you’ve had today has asked you to do the same thing I’ve just asked you to and you hate that and your bored. I know after three years or so using the agency that the organisation behind the support can and frequently is somewhat lacking. But what the hell am I supposed to do about it? I’m not about to apologise for needing support and it’s not like I can go “oh well don’t bother to change my bedding, I’ll do it myself.” I CAN’T DO IT.

There was a bit of an organisational problem with the third carer last week (who came to me twice). She was late to me. But give her her due, she just said she was sorry she was late but she had been scheduled 10 minutes traveling time and it was rush hour and she’d been in X place - to which i just “went yeah someone didn’t think about that did they?!” because i’d say it takes longer then 10 minutes here from there not in the rush hour - more like 20+. I then knew she might be late next time and we moved onto the more important topic - of how I was and what did i want doing.

Their time with me is not supposed to be a break. A good while back now (might be two years?) I complained to my care agency over a stupid little thing. A cup of coffee.

But the issue wasn’t the coffee. it was what it represented.

This carer had been to me once, maybe twice before. She walks in and we exchange the usual pleasantries. She wanders over to my fridge and I start to tell her what dinner I want making. At which point in time she pulls out the milk and shuts the fridge walking off again. Pulling a mug out and searching for some coffee in my food cupboard she tells me “Wait a minute, I’m going to make a coffee, did you want one?”

As far as I was concerned she could have her damn cup of coffee and I never said anything to her. But equally I felt that she should ask first because she isn’t “my new best friend” or a family member or whatever. She is here to work and to help me. And the most important thing a carer can do, any professional can do is to respect me. I don’t even go to my friend’s houses and help myself to drinks without asking.

I wouldn’t have said no. I recognise that sometimes people need a drink and if its hot or I think of it I do say “hey help yourself if you want a drink” and my regulars know I don’t mind - but they also respect the fact that it’s my house and it’s polite to ask. It’s the same with things like the loo - if you need to go your welcome to use mine but don’t just disappear and leave me wondering where you are.

Maybe it’s petty for me to say “you can but ask first” about these things but I just think it’s a sign that they respect me and don’t want to take over.

My carer with the “coffee problem” was never sent to me again - I refused to have her back and she has since left the company.

Another thing with carers relates to the not taking over thing but is kind’ve harder to explain. I have regular carers who know me and my routine well and I have people who don’t. My most regular carer knows that I will tell you what i want but also knows what I regularly do want and if I go to answer the phone or have a friend over or something and leave her will get on with the small bits - washing up, sweeping the floor, emptying the bin without being asked but does always check if theres anything else I want.

Choice is huge when there are things you can’t do yourself - for example I can’t change my bedding but I can tell you which clean set I want putting on. It’s another sign of respect and of regaining a little control.

Equally however as much as I advocate for choice and waiting to be asked - if I ask for you to do something generally I expect you to do it all (unless I state otherwise). Even if I don’t tell you specifically to do a certain part of it. Usually because I think it’s obvious that its a part of it.

Example being last week when asking someone to empty the bin. And they just emptied the bin. Didn’t put a fresh bag in and didn’t tie the old one up. And I discovered they’d not tied it by going to move it after they left and spilling the rubbish everywhere. That just annoys me because who empties the bin and doesn’t tie it up?!?! And also it’s a waste because my next carer then had to redo that and not what I wanted her to do.

So basically the best thing that carers could do for me is respect me and realise that I’m an individual. Some use of common sense, however, would also be more than welcome.

***

Finally, I am very excited to announce that the carnival after that is on Feb 14th and is HERE at The Life and Times of Emma. It’s theme is Superman.

If you live in the UK (or are an expat/overseas with the UK forces) and you or your friends or loved one receive community care via social services (or whatever they call themselves if your area) please go HERE and sign the petition to the Prime Minister to allocate adequate funding and improve the provisions for care nationwide.

[You'll need to fill out all the details but they won't be used for anything other than the petition (I've used it before) - you will however receive an e-mail with a link which you must click before your name is added to the petition - to prevent spambots.]

It’s time we stopped moaning about how bad things are and stood up to be counted. Sign the petition.

This week should be interesting. I know it will push me in ways I’ve not been pushed in a long time and it’s likely I will struggle somewhat. But in a strange way as much as I fought against the change, I’m sort of looking forward to it here and now it’s my reality. And knowing that I’m likely to struggle has enabled me to put plans into place to help me if that happens and to try, to a certain extent to prevent it.

I said to my friend Elisa today that I’m doing good at the moment but I’m not sure if I still will be next weekend because this is my first week with only two visits from carers (as I am now funding it myself, I cut it as I can’t afford the previous level).

But then tonight I realise, that no matter what I won’t be doing good like I am now next weekend. Because being ok with the idea of so little support is something I couldn’t have done last year. Another small to me sign of progress made. And regardless of what happens, I’ll be sat here next weekend knowing that I’ve done my best to manage with reduced support.

I won’t have done OK.

I’ll have done great.

No matter what.

Yes there are now great swathes of time with no carers, no people popping in. It is scary. But it’s also sort of freeing.

I still intend to take the matter somewhat further. But for the time being this is just another step on my journey.

I’ve yet to do anything concrete about the situation with my care being stopped. But I have been thinking and wondering and researching.

No longer having care is something of a tempting idea. However it’s not a practical idea. I will always need some form of support system in place. It actually doesn’t look like I will be particularly successful in getting this decision reversed but I’m going to try.

Reading the report on my needs is galling in that several of the parts I feel spin what I actually said into something different. And in places it reads as though she was wearing some rosy-glasses because you know, I really could clean the floors and the bathroom and cook full healthy meals for myself and change my bed, I’d just like a little help.

Yeah, right.

Yes I can do parts of each of those tasks and there are other things that my carers sometimes do which I can do myself. But that’s about energy levels and fatigue and the amount of time it takes me to do stuff. It’s about enabling me to have a life rather than just keeping me alive.

My counsellor said something to me on Wednesday about how I can lie to as many people as I want to about whatever I want but not to myself. To myself I must be true. And she’s right. I’d like to stop having care. If I could manage I would have agreed like a shot. But I can’t manage. And pretending I can isn’t going to do me any good. As much as I’m not keen on it, my truth is that I need care.

A quiet day at work allowed me to investigate our intranet and find the care criteria. My social worker had sent me information on them at my request and basically that just said “there are criteria. They fall into four categories. we pay for the top two only. Tough luck if your needs are medium or low.” and no details. Nothing about what needs are in which categories.

The information I found at work does list how needs are classified. And based on that information I believe my needs should have been classified as “medium risk” rather than low. Which still isn’t high enough to get my funding back but substantiates my feeling that the decision had been made before my social worker visited me. I do understand the need for criteria with limited funding but feel that this should be flexible and take into account personal circumstances. It’s all well and good her telling me my parents can provide my support - but actually, they can’t do it and I can’t cope with the guilt that sometimes gets involved in their providing my care (which is to do with me, not them).

Mum and I don’t believe we can get my care funding back for me based on physical need. So on Monday morning I have an appt with my GP to talk about my depression. Because risk of deteriorating mental health is a substantial need and would therefore mean I had to be funded. I was due to check in with Dr B about depression stuff at some point in July time anyway, just for a med review. But now I need her to help me fight this decision and have to go sooner. I have to hope she agrees with me else I’m up shit creek. I don’t like it. It seems like I have to emphasis or even over-emphasise my disabilities (my depression is classed as a disability under the DDA’s legal definition) to get what I am entitled to. So much for a “people first” society.

I’ve spent more time than I can remember in therapies and working with family and friends and carers to learn to do things for myself. I am fiercely independant. And now I am being discriminated against for that.

Sometimes I wonder why I bothered. Life would often be so much easier if I were one of those poor pathetic helpless little cripples. But then again, it would also be boring.

OK, this is the deal.

My whatever they are calling themselves today department which we would otherwise call social services (they change their name so often it seems like they have a new name more often then I have clean knickers), classes needs into four categories.

My needs for support fall into the low need category and unluckily for me and all of the others also classed as low or medium need those two categories aren’t worth the paper they get written on because you have to have substantial need or critical need to get funded. I have asked for a copy of the criteria but as far as I understand it at present they fund personal care and help to make food only. My understanding is also that food they give you something like 15 minutes for something quick.

I require help to make food as my abilities go as far as being able to microwave food and chuck a tray of something light like oven chips or pizza into the oven. If it’s heavy or if it’s in a saucepan and I have to do it - it ain’t happening. I also have what they call domestic needs - help to clean and change my bed etc. I can use the washing machine independently. Domestic needs are low category for everyone and in their opinion I am able to manage well enough with cooking to not have support.

No one told me that I don’t have CP all of a sudden, so either I missed that memo or miracle or whatever happened or there is something fishy going on here.

So I queried whether I met the criteria when they reviewed it last year. And I was told “no but I did some fast talking to my manager to get you support so you could learn to be more independent” and that could no longer be justified. I wasn’t told that last year. After all did I want to be fifty and still having care?! I said it wouldn’t be a bad thing.

I am “just like every other man on the street she tells me too”. Woman obviously needs an eye test because my bras so big that Soph reckons they look like a pair of boobs by themselves proving I am a woman not a man. But I’m also sat there in front of her in a wheelchair proving that I am not just like every one else on the street either, thank you God because who would want to be?! Particularly if that meant I had to be like her.

I see everyone else is as astounded and confused by the news in my previous entry as I am. I both do and don’t understand it better than I explained it there so I’m not going to try.

I am more than likely going to make a complaint however and so won’t go into details here. What I will say is that what bothers me just as much as the fact that I won’t have care is what was said when she was telling me and also how it was said.

And finally can I just say how much I fucking hate the fact that she has so much power over me that I end up in tears twice in one day and spend the rest of the day panicking and worrying. This is NOT ON

I just met with my social worker.

*&^&^&!^*(((!!((^&%$£$”£”££”!*&U^%$GHO:@( woman!!!

I cried. And now I’m angry. But equally another part of me is still crying, deep down inside, where no one can see.

I no longer meet the criteria to receive support from social services. No care, no social worker for back up, no nothing.

She got that I’m not happy. And she said if I wanted to ring her and complain and scream and swear at her I could.

But then again she probably only said that because she realises that I’d never have the nerve to do that.

If only I did.