>More on Gossip.

>My mum thinks I am overreacting by getting mad and saying that my carers are gossiping about me.  She doesn’t read my blog but I told her about it.

Basically, the two latest new carers have been discussing me (between themselves and with a member of the office staff as well as in front of at least one other carer so far as I can tell).  The third carer who this was all discussed in front of told me all about it yesterday.  But tells me she said nothing.  I do believe that.  I know of two things that were said about me based on what I was told.

Obviously I don’t know exactly what got said but it strikes me that one of the things there was no need to say at all because it doesn’t really serve much of a purpose.  I’m a naturally disorganised and messy person, it’s how I live and I’m happy like that.  But apparently the new carer has made comments about my house being a tip.

The second comment relates to the making an issue out of nothing incident of a few weeks ago.  And whilst I do understand why that carer raised it originally she went well over the line of what is appropriate.  And mentioning that to other carers annoys me, especially as from what got repeated to me a lot of the context/explanation I gave her got left out and just the “sensational” part was passed on.

Again, I’m going on what someone told me so I don’t know exactly.

Carers will always talk to each other about their clients.  And they will always (or should, rather, as it doesn’t seem to be happening) be briefed on thier clients.  I’ve believed for a long time that most carers don’t understand the emotional price people pay for needing them or the importance of confidentiality (and the way it should work) meaning there is no such real thing as client confidentiality in such positions – and I work generally on the principal of don’t want it repeated, don’t tell a carer.

Gossip is just a normal part of life.  I personally believe that carers should pass any information or concerns on to the office staff who should decide what to do and carers shouldn’t tell other carers.  But to be honest I’m more annoyed and bothered that I was told about it.  I’m not naive enough to think this has never happened before.  I just didn’t know about it.  So I didn’t have to deal with that knowledge and the way it made me feel.

Mum says I should let it go and she’s right but it’s hard to do.  I couldn’t explain why when she asked.  I’m just left with the feeling that based on what I was told was said about me people will think I’m some sort of spoiled brat.  And like they are making value judgements about me based on the way I chose to live.

>”I Am” Hosting the 50th Disability Blog Carnival! – Edited with more links

>Welcome to the 50th Disability Blog Carnival.  I am very impressed and happy that we’ve made it to 50 editions and very pleased to be hosting the 50th Edition.

Tonight (Matthew), our theme is going to be “I am” (apologies for the crap joke that only Brits will understand and is rubbish but I couldn’t resist!).  Once again I thought the topic would bring one sort of submission and was both pleased and surprised by the difference from what I expected and what we have here.

First a warning that if you comment on my blog there is a high possibility I will go to your blog and find something I like.  And if that happens and I’m hosting the carnival, well, you’ll find it there.  That’s what happened when Erin commented on my blog for the first time this week.  She’s written a poem called “My Name is Cerebral Palsy”  which I really like.  16 is a tough age.  16 with CP is even tougher – I hated being disabled around that age and Erin’s poem reminds me of what it was like.  It’s a very honest poem and although Erin describes it as slightly depressing I’m not sure it is.  As a  contrasting response I would offer a poem of mine, written in May 2006, It Doesn’t Have Me.  

Next we come to something which I think is a first for the Disability Blog Carnival.  Ricky regularly leaves comments on my blog (and maybe some of yours, I don’t know) but doesn’t have a blog of his own.  I have attempted to convince him to set one up but he prefers not to.  So I have posted the comments Ricky wanted to contribute to the carnival in a separate entry on my own blog and you can read them here.

One thing this topic seems to have inspired it lots of honesty.  I think that’s brilliant because in my opinion only by being completely honest about our lives and our disabilities – both the good and the bad – can we truly bring awareness and change.  

It’s not always easy to be so honest, particularly not on the Internet (unless you are an anonymous blogger, something I occasionally wish I was) so I really respect those who find it hard but do it anyway.  Cheryl told me she wasn’t sure she’d have the guts to post this – I’m Thankful talks about the changes she has gone through since being diagnosed as bipolar.

I’m Not Dead says Elizabeth as she writes about her recent experiences and how Heaven is like McDonalds.

The Goldfish has been thinking about voluntary euthanasia and suicide.  She has written two entries on the subject here and here. Oh and her off topic mention of daytime tv in the first entry along with the first three comments on there made me laugh.  More real honesty there.

Truthfully I wish I was confident/secure enough to have that level of honesty in my blogging.  Lately I’ve been left reading comments on several occasions thinking that whilst I welcome the comments those leaving them have missed what I was trying to say.  I’m not really sure if I need to make my writing clearer from that point of view or if it’s just the natural thing of the internet whereby things (discussion in this case) doesn’t always follow the path you expect.  With blogs and text you do miss out on a lot of the cues you would get in a conversation such as tone and emphasis.  It’s not a bad thing here.  Also over the last few months several people I know have mentioned reading my blog to me and commented in person on stuff.  I love that people read my blog and it’s what I want.  But I must admit that when people do so in person it makes me wibble a bit.

Ettina has posted a very appropriate piece for this topic (and it’s something I have considered writing many times but never fully done).  Her Life Story post is well worth the time taken to read.

In I am: Someone Who Speaks Up, Shiloh discusses what she is and what recent events have made her realise about herself.

SueBabe is a blogger I’ve not met before but who has been thinking and talking about a lot of things I’ve been thinking about it seems from the entry she submitted (unfortunately I’ve had little time to read more of her blog and get to know her better but it’s on my list).  And she’s Thriving Not Just Surviving.

Think Freestyle posted this letter to her blog wondering if she’d actually send it.  It’s a great letter and it starts with “I am…”

Miss CripChick is feeling disappointed, hurt and betrayed.  In Dear ADA Generation she shares those feelings.

Arin has shared how she thinks things would have been a lot harder without access to the blogs of people in similar circumstances and has written in Health Blogs about this and about other uses of blogs in the health field.

Ashley Kate is a cute kid whose been having a tough time lately.  In Finally her mom, Trish, shares how she felt when someone finally told her “I’m going to be honest with you” and actually explained just why they were having so many problems setting up the needed infusion.  It struck a cord with me as did her thoughts on the business side of healthcare which are in the same entry (we have different problems here in the UK and I think they are less but they are still there and still frustrating).  And in this post she shares how she enjoyed an unusual first a few days ago and the opportunity to be a parent for once.

Finally, I personally am always very happy when I hear about stories like this one posted on Nicole’s blog about her girls.

Well actually, that wasn’t the final link I have to share here but it is the final on topic one.  

Cheryl is doing a paper on Prostitution and Crips and wonders if people would mind completing her survey

The next Carnival will be hosted by Shiloh over at Sunny Dreamer.  It’s topic is favourite quotes, songs, writings, scriptures etc – specifically the ones that you turn to during the bad times and how they help.  Submissions can be via the blogcarnival submission form (inaccessible captcha in use there) or via e-mail to Shiloh – celtic_me2000@yahoo.com

I don’t know about Shiloh but personally always find it useful if people mark submissions with carnival or something similar in the subject as it helps avoid mistaking them for spam.

Thank you for submitting to the carnival and for taking the time to read it.  I hope you will meet some new bloggers and maybe leave them some comments as you read.

EDIT: I am annoyed and ashamed that I missed out a couple of links.  Especially as they are ones I read originally and really liked.

Ricki’s Mom has written about being able to say “I am in control” in That Little Smidgen of Independence Part One and Part Two

And Sally over at Maggie World has written Club Members about being a parent of a disabled child and finding herself member of a different sort of club.

>God Love Wikipedia

>Shi and I are discussing disabilities on MSN and experiences and perspectives and stuff.  It’s really interesting.  As a part of that I was telling her about the views of a friend of mine who has Williams Syndrome.

All I really know about that condition is how it affects my friend and that it’s genetic.  But I was kinda curious so I went to the Wikipedia article (linked above).  

Which includes the quote: “It is characterised by (….) an unusually cheerful demeanor (…) a love of music (…)”

I know, it’s wikipedia and you gotta take it with a huge pinch of salt.  But I don’t know whether to find that insulting or amusing.

Clearly if you are a particularly cheerful person and love music you might just have Williams Syndrom (or at least according to Wikipedia you might)

***

It’s 1.32 AM.  why am I still up?!

>I am – Guest Post for the Carnival from Ricky

>If you read my comments threads you will see frequent comments from a guy called Ricky.  He wanted to share the following for the next DBC (which will be up here tomorrow).  The theme is I Am (and I will make sure he receives/sees any feedback)

I would offer something along the lines of I am more than I appear. That would sort of tie in to the entry about that rather ignorant person who thinks you should have a “proper life”. The one thing that has become a motto for me is a quote from writer Mercedes Lackey that goes; “There is no one true way.” It’s a bit philosophy I’ve adopted because my life has not followed the usual path of able bodied people.


Because of my spina bifida it’s taken me down a diffrent path that I’ve come to embrace.

[*The rather ignorant person comment relates to this entry of mine]

>Puppies Quote

>I was looking for a random quote (any quote) to include in a card I sent to my sister last week.  I used this one – love it

“Not only is life a bitch but it is always having puppies.”

~Adrienne Gusoff

>Hi. I’m Emma.

>I had a new carer this evening, something I suspect will be happening a lot in the next few weeks as my regular carer of the last several years moved away at the weekend.  It went a lot better than I expected, I was very nervous, but it was ok.  I’m looking forward to Friday, however, when I should have someone who last did my care more than three years ago (by my count) but who I always got on well with.  Familiar faces are always good even if there will be a lot of the new carer things like showing where things are as well.  Those are always easier to cope with when I know the person however.

Two things strike me about having a new carer tonight.  One slightly serious, one just amusing.  Neither are specific to this new carer alone, I’ve had them happen before.  I was just reminded of them by her this evening.  This entry is not intended as a dig at this new carer.  If I ever see her again I think we will get on well.  My care agency do have a habit, however, of sending me someone and I don’t see them again for about six months.  As I no longer have a regular it’s less likely to happen, IMO.

1) A lot of the clients they go too they give or prompt medication.  I was under the impression that was because a lot of the clients in question can’t/won’t/forget to take their meds.  Obviously, I self medicate and my carers don’t do that for me.  But tonight for not the first time I got asked “am I supposed to give or prompt any meds?”  

Now, fair enough this carer didn’t know and it’s better that she asked rather than just wondering.  If you ask me however (and you didn’t but it’s my blog…) that’s actually kind of dangerous.  If the reason for the assistance with meds  is due to memory loss or difficulty in knowing when/how to medicate for example (to say nothing of noncompliance) and the carer is sent in not knowing if they need to do this well it’s just a mess which could result in either lack of medication or overmedication (either situation could be potentially very serious).  It’s a situation which Elizabeth has written about many times with her carers.

Obviously it’s a training issue and it is one that doesn’t apply to me.  But it’s one that really gets my back up because I have some very good friends who need this support and maybe aren’t able to advocate for themselves for well.

And that leads me to point 2) of the things I thought of after having a new carer this evening.

Once, a very long time ago, there was a carer sent to me by this agency who didn’t know my name – she was sent last minute and just given an address.  Ever since then I’ve made it a point to tell new carers my name when they introduce themselves.  They should be given an “About Emma” sheet the coordinators wrote before they come (although its crap and very out of date in my opinion) which covers what they do and stuff like that including what you prefer to be called.  It doesn’t seem to be getting dished out but to be honest, talking to them about writing my own is on my to do list (tentatively I’ve heard they won’t let me write one to replace theirs but they will let me write an additional one but I need to check that with the powers that be).  I’m not supposed to have read their sheet but I have and it’s… amusing. In an annoying sort of way.  Apparently “Emma is a delightful girl who enjoys a chat.” I’ve been campaigning for years to have that replaced with “Emma is a stroppy bitch” but nothing doing.

Anyway just as this new carer was leaving today after being here an hour she went “What’s your name?”  All they’d told her was I was Ms Crees.  I could swear I’d replied to her “hi I’m…” with “oh hi I’m Emma” but maybe not.

Still, it’s not really surprising that she didn’t know what she was meant to do for me with regards to meds (or rather not do) if they didn’t even tell her that I’m Emma.

So, just in case there was anyone here who didn’t know my name.  Hi. I’m Emma.

>Lovely Day

>Firstly, thank you for all the comments on the last entry.  It’s lovely to see so many new names and/or people who don’t comment regularly commenting.

But really the whole point of this entry was to share that I’ve been doing lots of knitting today.  Three hours non-stop with crappy tv in the background.  Pure bliss.  And I’ve been reading, and writing letters, going for a short walk and sleeping late.  It’s been a lovely day.

Yesterday went horribly wrong in the morning and I was in pain for most of the day.  But a bucket of hot chocolate (well, they call it venti, but it’s more like a bucket than a mug) and some chocolate chip shortbread and a book in the starbucks in borders went a long way to setting things right.  It wasn’t what I’d planned to do but it was what I could cope with after things went tits up and with those pain levels.

If it wasn’t for yesterday mornings so mad and frustrated I cried sat on the platform at the train stationand ended up in pain from cold incident it would have been a perfectly lovely weekend.  Instead just today was lovely and yesterday was salvaged but not great.

I am nervous about tomorrow.  I think it’s likely to be make or break when it comes to my mood over the last few days.  And I really hope it’s make.

>An Ungrateful Entry

>My friend Shiloh is hosting a gratefulness blog party today.

I don’t feel particularly grateful at the moment and haven’t for a while.  There seems to be a lot of things going around where people do things for me that I haven’t asked for and or don’t want and then when I express that get mad with me.  

One such example was a few weeks ago when a new carer told me that after her first visit to me she had spoken to the coordinators about certain issues and had discussed them in detail along with how I felt and what I thought about them.  Two problems here being I hadn’t asked her to do so, I didn’t and still don’t think there was even an issue there let alone one that needed to be discussed (she had asked me a harmless question which related to the fact my support isn’t done by the book and it became an issue) and having only met me once she had no idea of what I actually do think and feel about it.  It was very obvious that she expected me to thank her for that.  instead my response was to ask why she had done so and I didn’t thank her when she gave it.  I told her I would expect the coordinators to call me to discuss the matter and she told me they would have no need too which I obviously disagreed with.  I’ve not heard from them however but I have had that carer removed from my “can come here” list.  There are other reasons beyond that why I had her removed but it was the “straw that broke the camels back”

I am very grateful for things that people do for me when they put themselves out (and even when they don’t) – I also have a health dose of the gift that keeps giving, guilt, about having to have help.  But just because you help me out don’t expect me to agree with you.  There was an incident the other week where I expressed an opinion which was disagreed with.  I stand by what I said but admit that maybe I snapped a bit and I have apologised for that several time.  I got exploded at for that.  The opinion I expressed (please don’t lean on my wheelchair) had nothing to do with what the person I said it to helps me with.  They reminded me that they don’t have to help me and I should be grateful for what they do for me.  I told them I do appreciate it but was told they doubted that.  Various other things were said on the subject (to me) but aren’t relevant now) Tempers were a little frayed but I’m still not sure why unless I did snap.

The incident is now resolved and “forgotten” by those involved but remains with me.  Not necessarily/really the details but the idea that I must be grateful for something sometimes even to the extreme of not expressing an opinion for fear of upsetting someone.  I obviously haven’t let it stop me but it did happen and it’s there.  As a sort of “well I didn’t expect that to happen but it did and lets move on” type thing.

As grateful I am for my life and the people in it, I really don’t like the charity ideal we seem to have in this country which suggests (or appears to at least) that because I am disabled and need help I am less of a person.  It seems many people seem to think I should simply accept help and comments made to me regardless of their necessity, validity or whether they were needed/asked for – and that I must of course be grateful for it.  I also really don’t like the idea that if I am “ungrateful” I could be making the situation worse for others in the future – I’ve had people say things like that to me too.

A big thing I’ve noticed is that this “grateful”/charity attitude seems to come at me either from people I don’t know or from people I am only acquaintances with.  The majority of people who I count as friends aren’t like that.  Which i am, obviously, grateful for.

I know I have something of a reputation in some circles for being “difficult” and even ungrateful.  Shortly after I moved here (almost three years ago now!) a carer came for the first time and reported back to her supervisors she had never met a more ungrateful argumentative demanding little madam in her life as me.  My floors are all vinyl tile (well I think it is vinyl) with the exception of the bathroom and kitchen which are non slip.  No carpets as it’s not practical with the chair.  She spent ages telling me how I must get carpets put down, I wouldn’t be able to manage without carpets and how it would be really cold if I didn’t.  She wouldn’t have it when I explained that my wheelchair would ruin carpet (out in the rain then in onto carpet?!) or my pointing out that it was January and it was nothing like cold in my flat.  So that made me ungrateful and argumentative but I don’t care.  And if people think my knowing what I want people to and asking for it makes me demanding than so be it.

As I was saying I have something of a rep.  In the second incident I mentioned I must (and do) take some of the blame for being at fault.  Even though what I said was correct how I said it was wrong and I suspect a lot of what got said about how I “should be grateful” etc would have been left unsaid if not for that.  However the others are just a product of how I was brought up – to stand up for myself and be an advocate.  I quite like having that rep and I won’t apologise for it.

I am grateful for many things in my life but they are things I think I should be grateful for.  But it still remains the fact that there are a lot of things in this world society expects me to be grateful for.  And for a lot of those I would have to change my thoughts, beliefs and even who I am to do so.  I hate that with a vengence and I refuse to do it.

So this is my ungrateful entry for the gratefullness party.

>In which my life gets more and more surreal

>OK quick survey here:  You want someone to come and do odd jobs for you and are looking at hiring them.  Maybe you want a room painted or some shelves put up.

Do you A) ask friends and family for recommendations, look in the local paper if that brings up nothing

or B) Accept a scrap of paper with a phone number on it from a random guy who stops you in Borders and then use him to do your jobs?

Yeah, it’s A all the way.  But when I was in Borders this afternoon some guy actually interrupted me (I was looking at cards in paperchase) and tried to give me a scrap of paper with his phone number and something about odd jobs on it and told me if I needed any jobs to give him a call.  I told him no thank you and refused to take it.  He walked off looking pissed off and muttering that it had taken him ages to find [something] I had the impression he meant to find me but he might have meant the scrap he’d written on.

1) Why would anyone think that’s a strategy that would work.  I could kinda see the point in doing that when you were in somewhere like B&Q or Homebase cos obviously those are DIY stores and there’s an obvious link.  But in a book shop and in the paperchase section?!  And I don’t know anyone that would think it anything like a good idea or even particularly safe to employ someone “off of the street” so to speak.

2) Why is it that people keep accosting me and doing or offering things to me that I don’t want or need OR causing me problems OR being rude to me and when I either turn them down or point out their rudeness or whatever I’m suddenly the bad guy?!

**

There are various petitions of the offical Prime Minister’s website.  And when one comes to an end sometimes you get an e-mail with a response if you’ve signed it and they think it worth replying.  I got one today and when I clicked on the link to read it noticed that Downing Street has a Twitter Feed.

 Once I got to reading that I found it really interesting so I added it to my “following” list.  An hour or so later I got an e-mail from Twitter “Downing Street is now following you on Twitter.”

GAH! (I actually did ARGH out loud when I read that e-mail)

 It’s almost like the Prime Minister is reading my blog.  Only not.